http://qhr.sagepub.com/Qualitative Health Research http://qhr.sagepub.com/content/22/1/76 The online version of this article can be found at: DOI: 10.1177/1049732311418246 2012 22: 76 originally published online 15 August 2011 Qual Health Res Jennie-Laure Sully, Marcel A. Baltzan, Norman Wolkove and Louise DemersDevelopment of a Patient Needs Assessment Model for Pulmonary Rehabilitation Published by: http://www.sagepublications.com can be found at: Qualitative Health Research Additional services and information for http://qhr.sagepub.com/cgi/alerts Email Alerts: http://qhr.sagepub.com/subscriptions Subscriptions: http://www.sagepub.com/journalsReprints.nav Reprints: http://www.sagepub.com/journalsPermissions.nav Permissions: What is This? Aug 15, 2011 OnlineFirst Version of Record Dec 9, 2011 Version of Record >> by guest on February 6, 2014 qhr.sagepub.com Downloaded from by guest on February 6, 2014 qhr.sagepub.com Downloaded from
Qualitative Health Research 22(1) 76 The Author(s) 2012 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/1049732311418246 http://qhr.sagepub.com People diagnosed with chronic obstructive pulmonary disease (COPD) suffer from breathing discomfort (i.e., dyspnea) and fatigue that tend to increase in severity over time (Walke et al., 2007). These symptoms are part of a cycle of deconditioning that leads patients to reduce their activities and restrict their social participation, triggering even more dyspnea and fatigue when activities and social roles are resumed (Meek & Lareau, 2003). The exacerbation of symptoms can result in visits to the emergency room, hospitalizations, and can eventually be fatal (Fishman, 1994). Although the initial goal of clinicians is gener ally to treat through pharmacotherapy the physiological derangement provoking the symptoms, it is acknowledged that the underlying pathophysiology of the disease cannot be corrected (American Thoracic Society, 1999). Pulmonary rehabilitation (PR), an intervention that addresses the cardinal symptoms of dyspnea and fatigue as well as COPDs systemic manifestations (muscle wasting, malnutrition, anxiety, depression, and so forth) is con sidered best suited to break the cycle of deconditioning (Celli, 2006; Troosters, Casaburi, Gosselink, & Decramer, 2005). PR programs typically last up to 8 weeks and include the following components: physical exercises, ventilatory control training, nutritional guidance, psychological support, and education toward self-management of symptoms (Fishman, 1994). The recognition of PRs effectiveness in the treatment and management of COPD symptoms came in the late 1990s following a series of conclusive studies and randomized trials (Lacasse, Goldstein, Lasserson, & Martin, 2006; Lacasse et al., 1996; Reardon et al., 1994; Ries, Kaplan, Limberg, & Prewitt, 1995). Although PR is now considered an essential part of the standard of care for patients with COPD (Fabbri & Hurd, 2003; ODonnell et al., 2007), it is important to note that trials conducted during the 1970s and 1980s failed to dem onstrate any benefits from this intervention (Celli, 2006). Results from early studies on the effectiveness of PR are at odds with todays findings because the outcomes of interest have ceased to be measures of lung function, such as forced expiratory volume in 1 second, which has been shown to be poorly responsive to treatment (Anthonisen et al., 1994). The outcomes that are now considered important are related to the patients reduced perception of dyspnea and improved sense of well-being (Celli). With the emergence of a new 1Mount Sinai Hospital, Cte Saint-Luc, Quebec, Canada2University of Montreal, Montreal, Quebec, Canada Corresponding Author: Jennie-Laure Sully Mount Sinai Hospital, Research Office Room, 5690 Cavendish Boulevard, Cte Saint-Luc, Quebec H4W 1S7, Canada Email: firstname.lastname@example.org Development of a Patient Needs Assessment Model for Pulmonary RehabilitationJennie-Laure Sully,1 Marcel A. Baltzan,1 Norman Wolkove,1 and Louise Demers2Abstract Patients with chronic obstructive pulmonary disease are often referred to pulmonary rehabilitation programs to manage their symptoms and the consequences of the disease on their lives. Finding ways to target programs to a specific patients needs could help improve individual response to the program. The purpose of this study was to develop a conceptual model for the assessment of patients rehabilitation needs by using a grounded theory approach. Focus groups, consultations of medical charts, and a literature review helped us develop a conceptual model characterized by the following categories: need recognition, knowledge, motivation, expectations, goals, ability to fulfill needs, and the ability for personal adjustment. Based on a content matrix reflecting the conceptual model and disease consequences, items to be included in a prototype instrument were formulated and a preliminary validation phase was conducted. Keywords concept development; grounded theory; health outcomes; rehabilitation; respiratory disorders by guest on February 6, 2014 qhr.sagepub.com Downloaded from
Sully et al. 77 outcomes model emphasizing the role of all medical and social factors on the patients quality of life, several questionnaires have been developed and validated to assess the multiple effects of these factors on the patient (Haughney & Gruffydd-Jones, 2004; Kaplan & Ries, 2005). Questionnaires using patient-reported outcomes helped establish the effectiveness of PR programs for groups of patients but have not provided information about how patients respond individually to a program. PR programs are designed to address many problems faced by patients with chronic lung disease. These patients are individuals with different sociodemographic profiles who demonstrate variability in their ability to follow and benefit from a PR program. In Canada, 20% of patients who start PR do not finish the planned program (Brooks et al., 2007; Scott, Baltzan, & Wolkove, 2010). Patients who obtain the best scores in self-reported outcomes questionnaires are also those who are the least responsive to physical training (Troosters, Gosselink, & Decramer, 2001). It is possible that the effectiveness of PR might differ depending on a given component of the program and what it provides for the patient involved. In short, certain components of a pro gram might be more or less relevant to the needs of a specific patient. How one should go about identifying the needs of patients and the components of a PR program that are most likely to meet those needs is a question that has been raised but remains unanswered (Nici et al., 2006; Troosters et al., 2005). According to a joint statement from the American Thoracic Society (ATS) and the European Respiratory Society (ERS): Safety considerations as well as individual patient needs and goals of rehabilitation must guide the exercise prescription and implementation of the training program. Careful consideration of the multiple factors contributing to exercise limitation is essential for each patient (Nici et al., p. 1394). This joint statement also mentions that more research is needed to optimize the effectiveness of pulmonary rehabilitation, including more efficient ways of targeting it to the unique needs of the individual patient (Nici et al., p. 1404). Despite these recommendations, in practice it is not common to carefully select which patients would gain optimal benefits from current aspects of the intervention, or from the addition of new modalities (Troosters et al., 2005). There is little understanding of how PR outcomes relate to the identification of patients needs. Researchers in one study examined COPD patients needs in terms of information and adaptation to the disease (Seamark, Blake, Seamark, & Halpin, 2004). Other researchers have focused on patients palliative care needs (Elkington, White, Addington-Hall, Higgs, & Edmonds, 2005; Jones et al., 2004; Skilbeck et al., 1998), but none have considered the possible links between the individual needs of patients and the outcomes of PR. The difficulty of identifying patients needs and targeting better individualized PR programs to these needs could be explained by the fact that, among the many questionnaires at the disposal of researchers and clinicians, there is presently no instrument designed to assess the needs of patients referred to a PR program. Above all, this absence could be explained by the lack of a patients rehabilitation needs assessment model. In that context, we decided to conduct a research study with the purpose of developing such a model. To that end and to explore general research questions pertaining to the mea sure of patients needs that are linked to PR outcomes, we used a grounded theory approach involving focus groups as well as a review of medical charts and the relevant lit erature. To complete our qualitative study procedures, we proceeded to the preliminary validation of a proto type needs assessment instrument.MethodsGrounded theory was chosen as our methodological approach for this study because it appeared most appropriate to our conceptualization efforts. Based on the obser vation and constant comparison of incidents, this approach allows the elaboration of a model that explains a phenom enon and its context (Grbich, 1999). As a complementary methodological approach to grounded theory, we used the conceptual model that resulted from our analysis to guide us through the preliminary validation of a prototype needs assessment instrument. This involved using a content matrix to formulate the items of the prototype instrument. According to Streiner and Norman (2003), a content matrix can be used not only to formulate items but also to verify that formulated items are relevant, clear, and cover all domains of a conceptual model.Research DesignThe initial source of data in this research consisted of focus groups conducted with patients undergoing either inpatient or outpatient PR, as well as clinicians involved in the multidisciplinary PR team. In the manner advocated by Strauss and Corbin (1998) and put into application by Pandit (1996), multiple data sources providing insight into the meaning of the studied phenomenon were used to broaden our understanding of themes and linked concepts. Medical charts that potentially contained more information in relation to the emerging themes from the focus groups were used to refine our analysis. In addition to focus groups and medical charts, a review of the literature about the concept of needs and other more common evaluative concepts in the field of PR was included as the final source of data for our analysis. This was done based on the assertion that the literature can be used as a secondary source of data for the purpose of grounded by guest on February 6, 2014 qhr.sagepub.com Downloaded from
78 Qualitative Health Researc h 22(1) theory research (Strauss & Corbin, 1998). When a redundancy of the concepts that had emerged in focus groups was found in medical charts and in the literature, theoretical saturation was considered reached. The secondary and final phase of our study consisted of using the newly elab orated patients needs assessment model to formulate, pretest, and review the items to be included in a prototype instrument.Settings and Initial Data CollectionThe study was conducted in a Montreal hospital center specializing in respiratory care. Patients taking part in the hospitals PR program were referred from all over the city, from other cities in the province, or were transferred from other hospitals. Inpatients went through an intensive program of 3 weeks of rehabilitation. Outpatients came to the hospital three times a week for the duration of the 8-week program, and thereafter could join a maintenance program that required them to come to the hospital once a week for an additional 8 weeks. To establish shared experiences and common perceptions among patient groups, patients were invited to take part in three separate focus groups corresponding to their respective programs. All patient discussions lasted from 45 to 60 minutes and started with a brief presentation by the moderator (the first author) limited to the workings of a focus group. Patients were asked to introduce themselves and to talk about their experience with chronic respiratory disease, the care provided to them in general, and the PR program specifically. Once these questions were laid out, the moderator let the conversations between patients follow their course and intervened only to ensure that each one present got the opportunity to speak at least once. A fourth focus group was held during lunch hour with the multidisciplinary PR team of clinicians. Clinicians were invited to join the group by email. The clinicians discussion started with brief presentations by a moderator (the second author) and a facilitator (the first author). Clinicians were encouraged to make comments on the topic of patients needs assessments, were asked to talk about their experiences in dealing with different patients, and were prompted to identify factors that determine successful completion of a PR program. Procedures for the conduct of the focus groups, the coding, and the analysis of the data collected took place between May 1, 2006 and October 27, 2006. All discussions were audiotaped and transcribed in their entirety.Selective Sampling and Content AnalysisWe decided to include all 14 members of the PR multidis ciplinary team in the clinician focus group. The group consisted of a program coordinator, general practitioner, pulmonologist, physiotherapist, respiratory therapist, nurse, psychologist, nutritionist, social worker, recreational therapist, and 4 physical rehabilitation technicians. Although it is generally recommended not to exceed 12 participants in focus group discussions, we expected this groups discussion to be manageable, and considered that the different perspectives and areas of expertise of these 14 participants needed to be represented in the data collected. Within the different groups of patients, however, we sought to achieve a certain level of homogeneity. For our first patient focus group, we included all 8 patients who were on the last day of the outpatient program (6 retirees and 2 on disability leave). The second patient focus group included 7 patients who had just finished the maintenance program (6 retirees and 1 on disability leave), and the third patient focus group included 8 inpatients undergoing their last week of rehabilitation (6 retirees, 1 on disabil ity leave, 1 homemaker). Participants from the inpatient group had a diagnosis of severe COPD, whereas participants of the outpatient and the maintenance groups had diagnoses of moderate or severe COPD. Figure 1 summarizes the content of clinician and patient focus groups. Data were collected at the end of programs to ensure that different perceptions corresponded to indi vidual differences between patients and not to different time points in the rehabilitation process. An open coding method was used to analyze the content of the transcribed discussions word by word and line by line. Words that were reiterated often and words with similar meanings were noted and compared to one another so that themes and concepts emerging from each distinct focus group could be identified. For example, words like learning, information, and knowing, which were often reiterated in both the clinician and the patient focus groups, were labeled as belonging to the knowledge concept. Words such as goals, objectives, and accomplishments, which were reiterated only in the clinician focus group, were labeled as belong ing to the goals concept.Theoretical Sampling and Additional Data CollectionOnce the open coding of content was completed, we proceeded with an axial coding method. Axial coding is used to relate categories to subcategories and link them together at the properties and dimensions level (Glaser & Strauss, 1967; Strauss & Corbin, 1998). In practical terms, this served to identify converging themes and concepts between focus groups (see the lower part of Figure 1) and to link these categories with the findings from other sources of data examined in medical charts and in the literature to generate theoretical propositions. Medical chart data were used to get an overview of the practices and events occurring before, during, and after by guest on February 6, 2014 qhr.sagepub.com Downloaded from
Sully et al. 79 the PR process. For example, terms like motivation, the will to continue, and encouragement to push themselves were reiterated often in the clinician discussion. Axial coding involved finding out if there was a link in clinician and patient discussions regarding this category of motivation and other categories such as knowledge or goals. The consultation of medical charts was particularly useful to put the different categories of concepts into context. Additional data collection in the literature mainly involved reviewing concepts and conceptual models that currently influence evaluative practices in PR. Finally, the literature was also consulted to broaden our understanding of the concept of needs and to compare features of our conceptual model to those developed by other researchers.Ethical ConsiderationsThis study was approved by the Ethics Committee of the Mount Sinai Hospital Center. Patients gave signed informed consent before taking part in focus group discussions.ResultsIn this study we developed a patient needs assessment conceptual model for pulmonary rehabilitation. The model that emerged from the data collected is presented in Figure 2. This model illustrates how a pulmonary rehabilitation process is centered on the concept of per sonal adjustment. The first theoretical category at the beginning of this process is need recognition, and the category at the end of the process is the ability to fulfill needs. The conceptual model depicts how during rehabilitation, knowledge, motivation, expectations, and goals are factors that interact with each other and determine the course and finality of the rehabilitation process. By taking each of the categories of the model into account, it should be possible to carry out a complete evaluation of patients rehabilitation needs.Need RecognitionThe content analysis of clinician and patient focus groups revealed that the exchange of information necessary to identify disease consequences that are most harmful to patients is often lacking. Patients complained about the fact that doctors and other health care providers were not taking the time to explain problems and discuss solutions. Most clinicians agreed that patients did not under stand the purpose of the program and did not know what their own needs were. For example, the following comment, made by one of the doctors, gave rise to several similar statements from the other clinicians: The majority of them do not know what their needs are coming here. They dont even know why theyre coming here. Clinicians ( n = 14 ) Patients ( n =2 3) Wh at do pa ti ents know prior to coming to rehabilitation ? Wh at do th ey know about their disease and th eir symptoms ? Do they ha ve a clue about wh at pulmonary rehabilitationis abou t ? Ar e patients motivated to take part in the program ? Is th ere so me one at home motivating them ? Do patients ha ve the w ill to continue ex erci sing at home wi th out the encouragem ents to push themselve s that they get wh en th ey ar ei n the hospital settin g ? Wh at ar e the expectations patients ha ve to ward rehabilitation ? Wh at do th ey expect from us ? Wh at ar e th eir expectations wi th regard to their health conditio n? Ho w are patients adaptin g to their situatio n? Do they accept their conditio n? Did they make the necessary adjustment s to deal wi th th ec onsequence of their disease ? Ar e they ready to make adjustment s to li ve better wi th their diseas e ? Wh at do the y wi sh to ac complish ? Wh at are th eir goal s ? Do the goal s we se t to ev aluate thes uccess of the program relate to their goal s ? I did no t un derstand wh at wa s wr ong and no one ga ve me explanations My family doctor did not know about pulmonary rehabilitation (P R) Unti l re cent ly no on e had informed me about PR programs. I gained knowledg e of th e program th rough a friend I learne d a lot from being in contact wi th people wh o ha ve the same disease I ha ve I learne d to control my breathing. I learne d to make a better use of my energy. I had lost all motivation before coming here. I ha ve regained some motivation since I completed the program. I hope that I wo nt ha ve to carry oxygen wi th me all th e ti me I no longer expect to be cured but I hope this disease wo nt get any wo rse. I had a hard time acceptin g I could no longer do certain things I used to do before my disease got w orse. This wa s frustrating for a long time but I m slow ly adjustin g The psychol ogy sessions helped me a lot. Converging Themes and Concepts Know le dge / Learning / Informat io n Moti va tion / Wi ll to Continue / Encouragement to Push Them se lv es Expectations / Hope s Personal adjustments / Adaptation / Acceptatio n Divergent Them e Goals / A ccomplishments :N ot me nt ioned by patients ,b ut recurrent theme for clinicians Figure 1. Major themes identified in the content of focus groups by guest on February 6, 2014 qhr.sagepub.com Downloaded from
80 Qualitative Health Researc h 22(1) Knowledge Motivation Expectations Goals Need recognition Ability to fulfill needs Personal adjustment ability Rehabilitation process Figure 2. Patient Rehabilitation Needs Assessment ModelApprehensions on both sides appeared to contribute to poor communication. In many ways, patients expressed doubts about health care providers abilities to recognize what was wrong, whereas clinicians expressed doubts about patients abilities to recognize what needed to be done. As derived from notes in the medical charts, during visits with the doctor, the nurse, or other members of the PR team, patients were mostly trying to convey an idea of what was causing them harm: lack of energy, pain, anxiety, and so forth. According to the literature, the notion of harm is inherent to the needs concept (Doyal & Goough, 1991; Thomson, 1987). Based on this notion, needs can be defined as requirements that must be met to avoid harm. Although notes from clinicians of the PR team were mostly solution oriented, it was not possible to tell from these notes if solutions were based on a common recogni tion of the best way to prevent, reduce, or avoid harmful situations. Our data suggest that recognition of needs can start occurring when information is exchanged between patients and clinicians at the very beginning of the rehabilitation process. This exchange of information was generally related to disease consequences that both the patient and the clinician were trying to address. For example, in their initial evaluation notes, the nurse and the program coor dinator often made comments referring to the respective patients ability to recognize the warning signs of an infection and properly manage the symptoms of his or her disease. Self-management of symptoms involves adherence to medication and treatment plans. It is an important aspect of the educational component of PR (ODonnell et al., 2007). The importance of managing their symptoms is understood by patients once they associate poor management with harmful consequences like exacerbations and visits to the emergency department. One patient mentioned, Coming here made me realize that things would only get worse if I didnt start taking precautions, taking my medication, and exercising at home. Our analysis indicates that needs corresponding to critical areas of intervention such as prevention of exacerbations could be recognized through the common identification of harmful disease consequences. For some patients, this common identification of harmful disease consequences took place at the initial evaluation before their first PR program, during an exchange of information with the clinicians. Other patients, who admit ted to being less knowledgeable about their disease and about PR, said that they had to go through the program several times over the years before recognizing the link between interventions and critical areas of need. One patient stated, This is the third time I go through the program. Thats what it took for me to understand that first, I had to stop smoking. Second, I had to take my medication, and third, I had to keep exercising at home after the end of the program.KnowledgeWhat was or was not known, and the acquisition of greater knowledge, was a recurrent theme of discussion for both clinicians and patients. Clinicians wondered if patients were aware of the importance of PR, or whether they had a clue about why they were being transferred to a hospital specializing in respiratory care. Consultation of medical charts revealed that patients completed quizzes at the end of the program to evaluate their newly acquired set of knowledge about the disease and about PR. Considering that patients initial levels of knowledge could influence training and teaching methods used during the program, clinicians expressed the desire to find out more about what patients knew prior to starting rehabilitation. Many patients said that it took a very long time and a severe worsening of their breathing problems before someone (a nurse, an inhalation therapist, a friend who had gone by guest on February 6, 2014 qhr.sagepub.com Downloaded from
Sully et al. 81 through PR) finally gave them all the information or made it possible for them to take part in a PR program: After talking to a friend who had done the program, I was the one who brought up the subject with my doctor. He seemed skeptical and he told me, Well yes, you could go there as an inpatient to get some rest. I dont think he knew about all the exercises we do here! The topic of becoming aware of certain facts during the PR program was also abundantly discussed in the patient focus groups. Some patients felt that their general practitioners knowledge of PR was limited and that, as a result, they did not get adequate information about PR programs. Overall, patients agreed that some of the most significant learning experiences came from the sharing of knowledge and the acquisition of new skills with fellow patients dur ing the program. Meeting needs through knowledge and skill has been cited in the literature as a defining feature of the rehabilitation process (Baker, Fardell, & Jones, 1997). Our analysis shows that the degree of knowledge at a given moment before the rehabilitation process, and trans mission of new knowledge during that process, influence the patients rehabilitation progress. This can be observed by comparing the beginning of the rehabilitation process when need recognition is initiated, to the end of the processwhen a certain ability to fulfill needs is achieved.MotivationDegree of patient motivation was of great concern to clini cians. Several comments were made about how useful it would be to have some indication of whether a patient was self-motivated, received motivation from someone at home, or required extra motivation from clinicians. Among patients, a major topic of discussion pertained to the fact that the disease had caused them to lose motivation to do anything. The regaining of motivation to face day-to-day life was seen as one of the most positive outcomes of rehabilitation. Motivation could first be observed in the efforts made by patients to participate in the program. By consulting the medical charts, it was possible to track the numerous calls and information requests of patients who appeared to be more eager than others to participate in the program. It could also be established from notes in the charts that consistency in a patient presenting himor herself at each session of the program was interpreted by clinicians as a sign of motivation. According to the comments of clinicians, motivation is characterized by a willingness to invest time and energy into specific tasks or actions. One of the doctors commented that, regardless of disease severity, patients who were leading very sedentary lifestyles prior to being diagnosed with COPD were not generally motivated to become more active because of the PR program. On the contrary, the most motivated patients were those who had led very active lifestyles in the past. Echoing these remarks, patients who described themselves as being very active before being diagnosed with COPD mentioned that prior to start ing PR, they felt the urge to push themselves to maintain the same level of daily activities. Two of the patients in the inpatient focus group said that they had the will to continue to perform their family obligations as usual, despite shortness of breath or fatigue. Motivation is involved when a need is perceived and when a choice to fulfill that need has been made (Leidy & Haase, 1999; Stull, Leidy, Jones, & Stahl, 2007). The analysis of our data indicates that motivation influences a patients level of performance or ability to fulfill needs.ExpectationsOne of the many questions clinicians had regarding patients undergoing PR concerned their expectations. Although patients from the inpatient focus groups often said that they did not know what to expect from PR before starting the program, several participants in the outpatient focus group discussed their expectations before starting and after finishing the program. For example, many outpatients mentioned that before the program, they had hoped or expected to somehow get cured of their disease. For these outpatients, at some point during the course of the program, hopes were more realistically focused on managing the disease, preventing it from getting worse, and generally improving their current state of health. Patients who felt that their condition had improved had higher expectations toward health care providers. Even though they knew that there was a waiting list, many outpatients said they expected to be called promptly after the end of the regular program to start the maintenance program. Data from the focus groups suggest that expectations correspond to a certain level of confidence that the outcomes one hoped for would become a reality. According to several authors (Calman, 1984; Carr, Gibson, & Robinson, 2001; Dijkers, 2003), when people evaluate the quality of their lives, they compare what they have and do in life to what their needs and expectations are.GoalsSetting goals for patients, helping them reach those goals, and measuring goal achievement is characteristic of what clinicians involved in PR programs do. Some clinicians questioned whether the goals they were setting corresponded to what patients wanted to achieve. Clinicians by guest on February 6, 2014 qhr.sagepub.com Downloaded from
82 Qualitative Health Researc h 22(1) were able to identify some of the specific goals patients they encountered in their practice had mentioned to them. These included babysitting the grandchildren, going on a trip, or taking up leisure activities such as golf. Despite the fact that clinicians were able to enumerate such specific patient goals, the question of goals was not discussed at all in the patient focus groups. As revealed by notes in the medical charts, it appears that many patients confused expectations with goals. To the question, What is your goal by participating in the program? several patients responded, I expect the program to help me regain some strength. Our analysis shows that, contrary to clinicians, who were always goal oriented, patients could get stuck at the expec tations level and fail to plan or carry out specific actions. Goals have been defined as what an individual is trying to accomplish or as the object or aim of an action (Locke, Shaw, Saari, & Latham, 1981, p. 126). The link between goal achievement, needs, and the rehabilitation process has been highlighted by Baker et al. (1997), who included in the rehabilitation process an assessment of the individual, community, and carers starting points; aspired goals; and the required contributions to achieve ambitions and meet needs. Overall, the data suggest that patients acceptance of goals set by clinicians, or the correspondence of clinicians and patients goals, influence the progress of the rehabilitation process.Ability to Fulfill NeedsPatients discussed what they used to do and were no longer able to do by expressing worries about their ability to provide for themselves or their families. In the outpatient focus group, besides discussion about having to stop work as a result of the disease, patients expressed frustration about no longer being able to participate in enjoyable physical leisure activities like dancing or hiking. In each patient group, discussions about not being able to do things led to discussions about finding ways to do them differ ently: by using breathing techniques, pacing oneself, doing little bits at a time, and so forth. For several patients, the realization that they just had to do things differently to be able to carry out their usual tasks and activities was a positive turning point in their struggle to deal with the disease. In PR, as in many fields of rehabilitation, what people can do and how they perform is the object of functional status assessments. What people can do (i.e., their capacity) depends on their endurance, strength, and muscle function (Stull et al., 2007). This is generally evaluated on a treadmill or with exercise tests (Stull et al.). How people perform activities or social roles (i.e., their perfor mance) is usually evaluated with functional status questionnaires (Stull et al.). Our data indicate that capacity and performance are inherent components of the ability to fulfill needs. Essentially, people solicit their capacity when a need is perceived and perform activities to meet basic needs (Leidy, 1994). Toward the end of the rehabilitation process, it is possible to observe whether patients succeed in improving their performance level despite their capacity limitations. Assessing how a patients performance level has improved with regard to his or her capacity is either the main feature or a component of most of the questionnaires used in PR (Lareau, Breslin, & Meek, 1996; Stucki et al., 2007; Stull et al., 2007). Whereas the ability to fulfill needs (i.e. capacity and performance) is a category of our model for which several assessment instruments already exist, this is not the case for the categories of need recognition, knowledge, motivation, expectations, or goals.Ability for Personal AdjustmentClinicians and patients often broached the related concepts of coping, accepting, and adjusting during focus groups. Our analysis reveals that all of these terms refer to the patients ability for personal adjustment. This ability can be observed to varying degrees when patients are diagnosed with the disease, get involved in a rehabilitation process, and attend follow-up visits long after the end of the rehabilitation program. As stated by the psychologist in the clinician focus group, patients referred to PR have various reactions and strategies (denial, anger, seeking information, compliance to treatment) that can impede or facilitate their adaptation to the disease and its consequences. Personal adjustment is defined as the individu als restructuring of his attitudes and behavior in response to a new situation (Cavan, Burgess, Havigshurt, & Goldhamer, 1949). The individual achieves personal adjustment through the integrated expression of his wishes and aspirations in ways that also satisfy the expectations and demands of society (Cavan et al., p. 11). Based on the comments of clinicians, ability for per sonal adjustment appears to be both a means to an end and an end in itself. Specifically, the psychologist reported that patients who refused to accept the disease as a part of their lives found it harder to change their behavior as required during PR: Maybe part of that as well is what stage theyre at in terms of accepting the disease. If they have just been diagnosed through a horrible time in intensive care, they may be coming into this in a state of shock. This would be a different place than somebody coming into rehab [rehabilitation] after living with COPD for five years and after experiencing by guest on February 6, 2014 qhr.sagepub.com Downloaded from
Sully et al. 83 several exacerbations. Somebody who s coming in a state of shock would perhaps need more support to benefit from rehab. The clinicians agreed that those who adjusted to the disruptive effects of the disease could more readily recognize areas of need and were more willing to fulfill these needs by adopting new behaviors such as healthy eating habits and smoking cessation. However, recognizing and fulfilling needs also helped patients find greater personal adjustment with regard to the harmful consequences of disease. In other words, it is through personal adjustment ability that patients can balance need recognition and the ability to fulfill needs, but it is also through adequate need recognition and need fulfillment that patients achieve greater personal adjustment ability. This makes the ability for personal adjustment the central component of a patient rehabilitation needs assessment model. As such, the ability for personal adjustment stands out as a central dimension to measure the extent to which people have fulfilled their recognized needs.Usefulness and Purpose of a Needs Assessment InstrumentThe first topic of discussion raised during the clinician focus group concerned the lack of information about the patients attitudes, behaviors, and perceptions. In short, there was agreement about the importance of finding out more about patients individual characteristics. Researchers and clinicians in PR mostly refer to a conceptual model of patient outcomes that links clinical variables to healthrelated quality of life (Curtis, Martin, & Martin, 1997). In the model developed by Wilson and Cleary (1995), individual characteristics influence symptoms, functional sta tus, general health perception, and overall quality of life. According to the authors, additional research focusing on personal determinants should enable clinicians to address both clinical and nonclinical factors linked to the symptoms reported by patients. Wilson and Cleary mentioned expectations among the personal determinants requiring greater exploration. Our analysis shows that in addition to patient expectations, knowledge, motivation, and goals are also personal determinants of PR outcomes. In clinicians views, current assessment instruments leave questions about personal determinants unanswered, and a needs assessment instrument should address these questions to be useful. Instruments currently used in PR have been classified as health status measures, functional status measures, or dyspnea measures (Jones, Lareau, & Mahler, 2005; Lareau et al., 1996). However, there is a general tendency to refer to all of these instruments as quality-of-life or health-related quality-of-life measures, despite sustained criticism regarding the evaluative limitations of these two concepts (Dijkers, 2005; Hendry & McVittie, 2004; Jones & Kaplan, 2003; Moons, 2004; Patrick & Chiang, 2000) Considering that only 3.8% of the content of PR questionnaires can be linked to personal factors (Stucki et al., 2007), helping clinicians focus on the patients per sonal experience with the disease during rehabilitation would be a valuable purpose for a needs assessment instrument.Characteristics of the Target PopulationAlthough they are generally considered suited for patients with different types of chronic respiratory diseases, PR programs have traditionally mainly been aimed at patients suffering from COPD (Nici et al., 2006). In Canada, among patients who took part in a PR program in 2005, 90% of participants had a diagnosis of COPD (Brooks et al., 2007). Despite the fact that patients undergoing PR most often share the same disease, the review of medical charts indicated that variables such as age and comorbidities could be associated with the differences in patients attitudes and behaviors during rehabilitation. As shown by the results of our focus groups, these variables are intricately involved in the personal determinants (knowledge, motivation, expectations, and goals) that influence PR outcomes. Depending on the type of program (inpatient, outpatient, or maintenance), these variables manifested themselves differently in patients discussions. More specifically, certain trends regarding motivation and expectations were noticeable during patients discussions. Patients in the maintenance group discussed places where they could keep exercising outside of the hospital, or support groups that they could join after the end of their program. Their expectations were high but focused on realistic objectives, and they appeared selfmotivated to accomplish PR exercises as well as other tasks. Outpatients revealed that they had expectations that only recently became more realistic by focusing on self-management of the disease instead of cure. Several outpatients had a caregiver involved in the PR process with them. Typically the caregiver would drop off and pick up the patient at the rehabilitation center, call the coordinator or the doctor to ask questions, and be present at follow-up visits. Outpatients described this involvement as a source of motivation. Inpatients expressed a greater need to be motivated directly by PR clinicians. Several of their comments to the affect that they just dont want things to get any worse indicated that their expectations were lower. Older patients in the inpatients group who suffered from comorbidities appeared to have the lowest expectations. by guest on February 6, 2014 qhr.sagepub.com Downloaded from
84 Qualitative Health Researc h 22(1)Procedures and Results of Preliminary ValidationOnce a conceptual model has emerged through the application of a grounded theory approach, the goal is gener ally to operationalize and test the model. This is particularly the case when the model is developed as the foundation for an assessment instrument. Validation of an instrument and of the model on which it is based is a process that extends over time, requiring several studies that focus on the correspondence between the phenomenon being measured and the measures taken with the instrument (Crocker & Algina, 1986). As a secondary objective to our main objective of developing a conceptual model, we conducted a preliminary validation involving the formulation and pretest of items to be included in a needs assessment instrument.Content Matrix, List of Items, and Rating ScalesBased on our definition of needs as requirements that must be fulfilled to avoid harm, we attempted to formulate items that reflect the harmful consequences of disease that PR programs can address. Through a review of consensus statements made by the American Thoracic Society (American Thoracic Society, 1999) and the European Respiratory Society (Nici et al., 2006), we were able to identify the following categories of COPDs harmful consequences: (a) physical or physiological problems, (b) excessive use of health care resources, (c) reduction of physical activity and social participation, and (d) psychosocial issues. As illustrated in Figure 3, in the content matrix used for the formulation of items, these harmful disease consequences were placed at the start of rows, whereas the columns were headed by the following domains of our model: need recognition, knowledge, motivation, expectations, and goals. This allowed us to generate a list of 120 items formulated as statements to be selected and rated by the patient. Allowing patients to rate statements of their choice is one of the methods advocated by Djikers (2003) for the individualization of measurement instruments. In practice, patients participating in the preliminary validation phase received the instruction to circle between three and ten items in a list beginning with the statement: In the past months, I have been harmed most importantly by. Choices pertained to physiological/physical problems (shortness of breath, muscle weakness in arms or legs, and so forth), excessive use of health care resources (having to go to the emergency department or having to be hospitalized), reduction of physical activity and social participation (hav ing to change, reduce, or stop my work, occupation, or pastime), and psychosocial issues (difficulty accepting that the disease is part of ones life, fear of dying from the disease, and so forth). The rating scale for the need recognition domain is a 5-point personal adjustment scale: Presently, I have adjusted to or successfully dealt with the problems . not at all, a little, moderately, a lot. Knowledge, motivation, expectations, and goals all have their respective 5-point scales indicating the following degrees: none, low, moderate, high, and very high.Expert PanelThe conceptual model and a prototype of the instrument containing 120 items were presented during a hospital luncheon conference that was open to the public. Questions Domains of the Conceptual ModelNeed RecognitionKnowledgeMotivationE xpectationsGoals Disease ConsequencesItems pertaining to the identification of serious harm What one finds most important to know so as to avoid serious harm Actions one finds most important to put time and effort into so as to avoid harm The confidence one has that important hopes will become reality Objectives one finds most important to achieve so as to avoid harm Physiological / physical problems Excessive use of health care resources Reduction of physical activity and social participation Psychosocial issues Formulation of items for each cell of the matrix Figure 3. Domains of the conceptual model by guest on February 6, 2014 qhr.sagepub.com Downloaded from
Sully et al. 85 raised and comments provided during and after the pre sentation were noted. In general, the conceptual model was viewed positively but there was some concern about ease of administration and the time it would eventually take patients to complete the questionnaire. An expert panel composed of a PR program coordinator, a psychologist, a physiotherapist, and two pulmonologists was asked to review the list of 120 items to make sure formulation was clear, relevant, and concise, yet still reflective of the con ceptual model. The experts were given 2 weeks to review the items on their own before coming back to give a set of recommendations to the first author of this article. Based on the most common recommendations, the items were reformulated. Wording was simplified by eliminating technical terms. For example, it was recommended to use worsening of symptoms instead of exacerbation. It was also recommended that we replace all references to specific therapeutic productsbronchodilators, corticosteroids, or antibioticswith the single term medication Certain items that had similar meaning were combined or eliminated. The list of items was thus reduced to 98 items.Pretest of ItemsThe prototype instrument containing 98 items was admin istered to a convenience sample of 12 inpatients and 5 outpatients. The objectives were to measure average completion time and to verify whether patients found the questionnaire to be clear and relevant. Items for which patients had asked clarifications while completing the questionnaire were eliminated. This was the case for items referring to side effects of medication, respiratory crisis, or being affected by other medical conditions. The end result was a prototype instrument containing a list of 80 items that patients in the convenience sample completed within 30 minutes.DiscussionIn this article, a patient needs assessment model for pulmonary rehabilitation was introduced. The model draws links between the clinical outcomes of rehabilitation and the needs of patients. This differs from Wilson and Clearys model (1995), which draws links between clinical outcomes and health-related quality of life. Although the influence of individual characteristics is recognized in Wilson and Clearlys model, they are not attributed the primary role that they possess in our model. In their article, Wilson and Cleary mentioned motivation as an individual characteristic that influences clinical outcomes, and singled out expectations as a personal determinant. Expectations are also considered determinant in Carr et al.s (2001) model of quality of life. Similarly to this model, our model was in part inspired by the definition of quality of life as the sum total of the cognitive reactions that people experience when they compare what they have and do in life with their aspirations, needs and other expectations (Dijkers, 2005, p. 88). Carr et al.s (2001) quality-of-life model focuses on the notion of gap between the patients experience of disease and his or her expectations, but it does not establish a link between symptoms and the outcomes of clinical intervention. The patient rehabilitation needs assessment model, however, fully accounts for intervention outcomes by assimilating the notion of gap to the distance between need recognition and the ability to fulfill needs in the context of a rehabilitation process. Another feature that distinguishes our model from conventional views is that it avoids depicting the relationship between symptoms and clinical outcomes in a linear fashion, as it is done in Wilson and Clearys (1995) model. As acknowledged by these authors, not all conditions fit into that linear pattern. People who suffer from COPD are generally referred to PR to manage their symptoms of dyspnea and fatigue, but also to address other harmful consequences the disease has on their lives. Whereas one patient might succeed in performing social roles and daily activities at an appropriate performance level regardless of his or her symptoms, another patient might react by drastically limiting social roles and daily activities. How people decide to solicit their latent capacity to perform at a certain level depends on their perception of needs (Leidy & Haase, 1996). Considering this, the needs assessment model integrates capacity and performance in the patients ability to fulfill needs. Because there is no lack of methods and instruments to assess capacity and performance in PR, we did not include that domain of the model in the content matrix that guided the formulation of items for our prototype needs assessment instrument. The prototype needs assessment instrument should thus be seen as a complementary addition to current evaluative practices in PR. This prototype reflects the developed conceptual model by using the ability for personal adjustment as the central characteristic that measures the level of need recognition. Degree of knowledge, motivation, expectations, and attainment of goals are also well reflected in the content of the prototype instrument through their respective rating scales. Compared to existing models, the conceptual model developed in this study brings specific contributions to our understanding of intervention outcomes and patients needs. The limitations of this study are characterized by the relatively small use of quantitative methods to validate our model and the content of our prototype instrument. However, given the lack of qualitative research studies concerning the outcomes of PR and the existence of by guest on February 6, 2014 qhr.sagepub.com Downloaded from
86 Qualitative Health Researc h 22(1) conceptual confusion in current patient assessment practices (Dijkers, 2005; Moons, Budts, & De Geest, 2006), the grounded theory approach was prioritized in this study. More research will be required to obtain a thoroughly validated version of the prototype needs assessment instru ment that PR clinicians will be able to integrate to their practice. Not often used in the field of PR, qualitative methods represent the strength of this study because they have allowed us to explore neglected aspects of intervention outcomes as they relate to the patients experience with the disease. The patient needs assessment model that has emerged through our application of the grounded theory approach could eventually be used in other rehabilitation contexts.ConclusionThe concept of needs, which we have defined as requirements that must be met to avoid harm, is not presently used as an evaluative concept in PR. There have been recommendations regarding the importance of finding ways to target PR to the unique needs of patients (Nici et al., 2006), but researchers in PR usually refer to the concept of quality of life when studying intervention outcomes. Several authors have criticized the fact that instruments based on the concept of quality of life do not reflect the personal views and perceptions of those being assessed (Hendry & McVittie, 2004; Hickey, Barker, McGee, & OBoyle, 2005). It has been suggested that the concept of quality of life be abandoned altogether, because the very act of quantifying ones quality of life depreciates its intrinsic value (Wolfensberger, 1994). Our study brings us to the conclusion that quality of life as a sum total cannot be measured, but individual patients needs can and should be measured as markers of quality of life. Need recognition is the starting point in a patients rehabilitation needs assessment. Attention should then be given to the linked personal determinants of intervention outcomes such as knowledge, motivation expectations, and goals, all of which have an impact on the ability to fulfill needs and on the ability for personal adjustment. Because PR is recognized as an effective intervention for patients suffering from COPD, the question today is no longer whether or not patients should receive this inter vention, but rather how this intervention should best be delivered to patients. A question that follows is how PR success should be evaluated. In the future, the patient rehabilitation needs assessment model and the prototype instrument introduced in this article will require additional validation studies. These studies should pave the way for the tailoring of PR programs, the individualization of exercise modalities, and the establishment of patient outcomes profiles. Authors NotePortions of this article were presented at the May 2007 and May 2008 American Thoracic Society International Conferences, in San Francisco and Toronto, respectively.Declaration of Conflict of InterestsThe authors declared no conflicts of interest with respect to the authorship and/or publication of this article.FundingThe authors disclosed receipt of the following financial support for the research and/or authorship of this article: Funding was provided through a Mount Sinai Hospital Foundation research grant.ReferencesAmerican Thoracic Society. (1999). Dyspnea Mechanisms, assessment, and management: A consensus statement. American Journal of Respiratory and Critical Care Medicine, 159(1), 321-340. Retrieved from http://ajrccm.atsjour nals.org Anthonisen, N. R., Connett, J. E., Kiley, J. P., Altose, M. D., Bailey, W. C., Buist, A. S., & Mason, B. A. (1994). Effects of smoking intervention and the use of an inhaled anticholinergic bronchodilator on the rate of decline of FEV1. JAMA, 272(19), 1497-1505. doi:10.1001/jama.1994.03520190043033 Baker, M., Fardell, J., & Jones, B. (1997). Disability and rehabilitation: Survey of educational needs of health and social service professionals. London: Disability and Rehabilitation Open Learning Project. Brooks, D., Sottana, R., Bell, B., Hanna, M., Laframboise, L., Selvanayagarajah, S., & Goldstein, R. (2007). Character ization of pulmonary rehabilitation programs in Canada in 2005. Canadian Respiratory Journal, 14(2), 87-92. Retrieved from http://www.pulsus.com Calman, K. C. (1984). Quality of life in cancer patientsAn hypothesis. Journal of Medical Ethics, 10(3), 124-127. doi:10.1136/jme.10.3.124 Carr, A. J., Gibson, B., & Robinson, P. G. (2001). Is quality of life determined by expectations or experience? BMJ, 322(7296), 1240-1243. doi:10.1136/bmj.322.7296.1240 Cavan, R. S., Burgess, E. W., Havigshurt, R. G., & Goldhamer, H. (1949). Personal adjustment in old age. Chicago: Science Research Associates. Celli, B. R. (2006). Chronic obstructive pulmonary disease: From unjustified nihilism to evidence-based optimism. Pro ceedings of the American Thoracic Society, 3 (1), 58-65. doi:10.1513/pats.200510-111JH Crocker, L., & Algina, J. (1986). Introduction to classical and modern test theory. Orlando, FL: Holt, Rinehard and Winston. Curtis, J. R., Martin, D. P., & Martin, T. R. (1997). Patient-assessed health outcomes in chronic lung disease: What are they, how do they help us, and where do we go from here? American by guest on February 6, 2014 qhr.sagepub.com Downloaded from
Sully et al. 87Journal of Respiratory and Critical Care Medicine, 156(4), 1032-1039. Retrieved from http://ajrccm.atsjournals.org/ Dijkers, M. P. (2003). Individualization in quality of life measurement: Instruments and approaches. Archives of Physical Medicine and Rehabilitation, 84(4 Suppl. 2), S3-S14. doi:10.1053/apmr.2003.50241 Dijkers, M. P. (2005). Quality of life of individuals with spinal cord injury: A review of conceptualization, measurement, and research findings. Journal of Rehabilitation Research and Development, 42(3 Suppl. 1), 87-110. doi:10.1682/ JRRD.2004.08.0100 Doyal, L., & Goough, I. (1991). A theory of human needs. London: Macmillan. Elkington, H., White, P., Addington-Hall, J., Higgs, R., & Edmonds, P. (2005). The healthcare needs of chronic obstruc tive pulmonary disease patients in the last year of life. Palliative Medicine, 19(6), 485-491. doi:10.1191/026921630 5pm1056oa Fabbri, L. M., & Hurd, S. S. (2003). Global strategy for the diagnosis, management and prevention of COPD: 2003 update. European Respiratory Journal, 22(1), 1. doi:10.1183/0903 1936.03.00063703 Fishman, A. (1994). Pulmonary rehabilitation research. American Journal of Respiratory and Critical Care Medicine, 149(3), 825-833. Retrieved from http://ajrccm.atsjournals.org Glaser, B. G., & Strauss, A. L. (1967). The discovery of grounded theory. Chicago: Aldine. Grbich, C. (1999). Qualitative research in health. London: Allen & Unwin. Haughney, J., & Gruffydd-Jones, K. (2004). Patient-centred outcomes in primary care management of COPDWhat do recent clinical trial data tell us? Primary Care Respiratory Journal, 13(4), 185-197. doi:10.1016/j.pcrj.2004.06.006 Hendry, F., & McVittie, C. (2004). Is quality of life a healthy concept? Measuring and understanding life experiences of older people. Qualitative Health Research, 14, 961-975. doi:10.1177/1049732304266738 Hickey, A., Barker, M., McGee, H., & OBoyle, C. (2005). Measuring health-related quality of life in older patient populations: A review of current approaches. Pharmacoeconomics, 23(10), 971-993. Retrieved from http://adisonline.com/ pharmacoeconomics Jones, I., Kirby, A., Ormiston, P., Loomba, Y., Chan, K.-K., Rout, J., & Hamilton, S. (2004). The needs of patients dying of chronic obstructive pulmonary disease in the community. Family Practice, 21(3), 310-313. doi:10.1093/fampra/ cmh317 Jones, P., Lareau, S., & Mahler, D. A. (2005). Measuring the effects of COPD on the patient. Respiratory Medicine, 99, S11-S18. doi:10.1016/j.rmed.2005.09.011 Jones, P. W., & Kaplan, R. M. (2003). Methodological issues in evaluating measures of health as outcomes for COPD. European Respiratory Journal, 2003, 13s-18s. doi:10.1183/ 09031936.03.00077802 Kaplan, R. M., & Ries, A. L. (2005). Quality of life as an outcome measure in pulmonary diseases. Journal of Cardiopulmonary Rehabilitation, 25(6), 321-331. Retrieved from http://journals.lww.com/jcrjournal Lacasse, Y., Goldstein, R., Lasserson, T. J., & Martin, S. (2006). Pulmonary rehabilitation for chronic obstructive pulmonary disease. Cochrane Database of Systematic Reviews, 2006, (4). doi:10.1002/14651858.CD003793.pub2 Lacasse, Y., Wong, E., Guyatt, G. H., King, D., Cook, D., & Goldstein, R. (1996). Meta-analysis of respiratory rehabilitation in chronic obstructive pulmonary disease. Lancet, 348(9035), 1115-1119. doi:10.1016/S0140-6736(96)04201-8 Lareau, S. C., Breslin, E. H., & Meek, P. M. (1996). Functional status instruments: Outcome measure in the evaluation of patients with chronic obstructive pulmonary disease. Heart & Lung, 25(3), 212-224. doi:10.1016/S0147-9563(96)80032-X Leidy, N. K. (1994). Functional status and the forward progress of merry-go-rounds: Toward a coherent analytical framework. Nursing Research, 43(4), 196-202. doi:10.1002/(SICI)1098240X(199902)22:1 67::AID-NUR8 3.0.CO;2-D Leidy, N. K., & Haase, J. E. (1996). Functional performance in people with chronic obstructive pulmonary disease: A qualitative analysis. Advances in Nursing Science, 18(3), 77-89. Retrieved from http://journals.lww.com/advancesin nursingscience Leidy, N. K., & Haase, J. E. (1999). Functional status from the patients perspective: The challenge of preserving personal integrity. Research in Nursing & Health, 22(1), 67-77. doi:10.1002/(sici)1098-240x(199902)22:167::aidnur83.0.co;2-d Locke, E. A., Shaw, K. N., Saari, L. M., & Latham, G. P. (1981). Goal setting and task performance: 1969-1980. Psychological Bulletin, 90, 125-152. doi.10.1037/0033-2909.90 .1.125 Meek, P. M., & Lareau, S. C. (2003). Critical outcomes in pulmonary rehabilitation: Assessment and evaluation of dyspnea and fatigue. Journal of Rehabilitation Research and Development, 40(5 Suppl. 2), 13-24. doi:10.1682/JRRD. 2003.10.0013 Moons, P. (2004). Why call it health-related quality of life when you mean perceived health status? European Journal of Cardiovascular Nursing, 3(4), 275-277. doi:10.1016/j.ejcnurse.2004.09.004 Moons, P., Budts, W., & De Geest, S. (2006). Critique on the conceptualisation of quality of life: A review and evaluation of different conceptual approaches. International Journal of Nursing Studies, 43(7), 891-901. doi:10.1016/j. ijnurstu.2006.03.015 Nici, L., Donner, C., Wouters, E., Zuwallack, R., Ambrosino, N., Bourbeau, J., & Troosters, T. (2006). American Thoracic Society/European Respiratory Society Statement on pulmonary rehabilitation. American Journal of Respiratory and Critical Care Medicine, 173(12), 1390-1413. doi:10.1164/ rccm.200508-1211ST by guest on February 6, 2014 qhr.sagepub.com Downloaded from
88 Qualitative Health Researc h 22(1)ODonnell, D. E., Aaron, S., Bourbeau, J., Hernandez, P., Marciniuk, D. D., Balter, M., & Voduc, N. (2007). Canadian Thoracic Society recommendations for management of chronic obstructive pulmonary disease update. Canadian Respiratory Journal, 14( Suppl, B), 5B. Retrieved from http://www.pulsus.com Pandit, N. R. (1996). The creation of theory: A recent application of the grounded theory method. Qualitative Report. Retrieved from http://www.nova.edu/ssss/QR/ QR2-4/pandit.html Patrick, D. L., & Chiang, Y. P. (2000). Measurement of health outcomes in treatment effectiveness evaluations: Conceptual and methodological challenges. Medical Care, 38(9), 1114-1125. Retrieved from http://journals.lww.com/ lww-medicalcare Reardon, J., Awad, E., Normandin, E., Vale, F., Clark, B., & ZuWallack, R. L. (1994). The effect of comprehensive outpatient pulmonary rehabilitation on dyspnea. Chest, 105(4), 1046-1052. doi:10.1378/chest.105.4.1046 Ries, A. L., Kaplan, R. M., Limberg, T. M., & Prewitt, L. M. (1995). Effects of pulmonary rehabilitation on physiologic and psychosocial outcomes in patients with chronic obstructive pulmonary disease. Annals of Internal Medicine, 122(11), 823-832. doi:10.1097/00008483-199511000 -00015 Scott, A., Baltzan, M., & Wolkove, N. (2010). Success in pulmonary rehabilitation in patients with chronic obstructive pulmonary disease. Canadian Respiratory Journal, 17(5), 219-223. Retrieved from www.pulsus.com Seamark, D. A., Blake, S. D., Seamark, C. J., & Halpin, D. M. G. (2004). Living with severe chronic obstructive pulmonary disease (COPD): Perceptions of patients and their carers. Palliative Medicine, 18(7), 619-625. doi:10.1191/0269216 304pm928oa Skilbeck, J., Mott, L., Page, H., Smith, D., Hjelmeland-Ahmedzai, S., & Clark, D. (1998). Palliative care in chronic obstructive airways disease: A needs assessment. Palliative Medicine, 12(4), 245-254. doi:10.1191/026921698677124622 Strauss, A. L., & Corbin, J. M. (1998). Basics of qualitative research: Techniques and procedures for developing grounded theory (2nd ed.). London: Sage. Streiner, D. L., & Norman, G. R. (2003). Health measurement scales: A practical guide to their development and use. New York: Oxford University Press. Stucki, A., Stucki, G., Cieza, A., Schuurmans, M. M., Kostanjsek, N., & Ruof, J. (2007). Content comparison of health-related quality of life instruments for COPD. Respiratory Medicine, 101(6), 1113-1122. doi:10.1016/j.rmed.2006.11.016 Stull, D. E., Leidy, N. K., Jones, P. W., & Stahl, E. (2007). Measuring functional performance in patients with COPD: A discussion of patient-reported outcome measures. Current Medical Research & Opinion, 23(11), 2655-2665. doi:10.11 85/030079907X233133 Thomson, G. (1987). Needs. New York: Routledge & Kegan Paul. Troosters, T., Casaburi, R., Gosselink, R., & Decramer, M. (2005). Pulmonary rehabilitation in chronic obstructive pulmonary disease. American Journal of Respiratory and Critical Care Medicine, 172(1), 19-38. doi:10.1183/10254 48x.00038021 Troosters, T., Gosselink, R., & Decramer, M. (2001). Exercise training in COPD: How to distinguish responders from nonresponders. Journal of Cardiopulmonary Rehabilitation, 21(1), 10-17. doi:10.1097/00008483-200101000-00004 Walke, L. M., Byers, A. L., Tinetti, M. E., Dubin, J. A., McCorkle, R., & Fried, T. R. (2007). Range of severity of symptoms over time among older adults with chronic obstructive pulmonary disease and heart failure. Archives of Internal Medicine, 167(22), 2503-2508. doi:10.1001/ archinte.167.22.2503 Wilson, I. B., & Cleary, P. D. (1995). Linking clinical variables with health-related quality of life. A conceptual model of patient outcomes. JAMA, 273(1), 59-65. doi:10.1001/ jama.273.1.59 Wolfensberger, W. (1994). Lets hang up quality of life as a hopeless term. In D. Goode (Ed.), Quality of life for persons with disabilities: International perspectives and issues. Cambridge, MA: Brookline Books.BiosJennie-Laure Sully, MSc, is a biomedical sciences graduate from the University of Montreal School of Rehabilitation, in Montreal, Quebec, Canada, and is currently on sabbatical, volunteering for humanitarian organizations. Marcel A. Baltzan, MD, FRCPC, FACCP, is a pulmonologist at the Mount Sinai Hospital in Cte Saint-Luc, Quebec, Canada. Norman Wolkove, MD, FRCPC, FACCP, is a pulmonologist and head of the Research Department at the Mount Sinai Hospital in Cte Saint-Luc, Quebec, Canada. Louise Demers, PhD, OT, is an associate professor at the University of Montreal School of Rehabilitation in Montreal, Quebec, Canada. by guest on February 6, 2014 qhr.sagepub.com Downloaded from
PATIENT AND HEALTH CARE PROVIDER PERCEPTIONS ON LINKAGE TO CARE AND MEDICATION ADHERENCE AMO NG AFRICAN AMERICAN WOMEN LIVING WITH HIV/AIDS A QUALITATIVE COMPARATIVE STUDY By OLIHE N. OKORO A DISSERTATION PRESENTED TO THE GRADUATE SCHOOL OF THE UNIVERSITY OF FLORIDA IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF DOCTOR OF PHILOSOPHY UNIVERSITY OF FLORIDA 2014
2014 Olihe N. Okoro
To the African American woman living with yet triumphing over HIV/AIDS . whose inner beauty and strength truly inspire
4 ACKNOWLEDGMENTS Anyone who has gone through a doctoral program would agree that it is almost impossible to pull off as an individual. I have had tremendous support from faculty, family, friends, and colleagues. First of all, I want to acknowledge that none of this s grace. I look back and I can say with all certainty that there were times I had challenges that I would not have overcome if an enablement beyond my human capacity had not carried me through. For this research, I want to acknowledge funding from the Schl umberger Foundation, Faculty for the Future Fellowship; and the Sherri Aversa Dissertation Completion Grant. In the course of my doctoral program and specifically in conducting this research I had support from a lot of faculty more names than I can menti on. I am particularly indebted to my advisor, Dr. Folakemi Odedina who has been an amazing mentor. I want to thank Dr. Odedina for being such an inspiration to me and constantly pushing me to excel and exceed even my own expectations. I owe a debt of grati tude to Dr. Barbara Lutz who not only equipped me with relevant qualitative research skills, but made out time to review my work and point me in the right direction. I want to thank my committee members Dr. Segal, Dr. Kimberlin, Dr. Burns and Dr. Sanders for the guidance, encouragement, support and vote of confidence. Each time I met with any of them, I always came away motivated and confident that I could and would finish this research. In my pursuit of this degree I had tremendous support from other faculty in my department who were not on my dissertation committee. I want to appreciate Dr. Winterstein and Dr. Lipowski for their support especially during my research. They showed such concern and offered help that was instrumental to the success of th e
5 work. The administrative staff is not left out. I want to say a big thank you to Nicole Corwine, Linda Orr, and Jill Hunt for their technical support and for caring enough to I consider myself exceedingly blessed to ha ve parents and a mother in law that pray for me daily. Their prayers continue to get me through tough times like undertaking this dissertation research. Hardly would a few days pass without their phone calls to encourage me and express their love and suppo rt. So many people outside the academic circle helped to facilitate this research. I want to specially thank those who linked me to potential study participants and gave me information that guided this research. Special thanks to Ms Teresa Mercado White Mr. Bobby Davis, and Ms. Gay Koehler Sides from the Alachua County Health Department and Ms. Karen Klubertanz of the WellFlorida Council, Inc. I had an incredible amount of social support from family and friends. I want to say thank you to my siblings, t heir spouses, uncles, aunts and my in laws the Okorafors, the Okoros, the Olaiyas, the Ekes their phone calls were always uplifting and their outpouring of love gave me strength to keep going. I want to specially appreciate the friends who shared my bu rdens and joys alike. They were always a phone call away and a ready ear when I needed to vent. I say thank you to Ebere Okoye, Nnenna Chigbo, Gozie Chidebelu, Ifeyinwa Onwelumadu, and the Eworukes. I can say with all sincerity that I could not have succe ssfully completed this PhD program without the support of my husband Chijioke. He would leave from the office at the end of work on Thursday or Friday and drive 340 miles from Atlanta to Gainesville each weekend to help with the children. He would stay up with me on skype every
6 weekday night while I studied. I want to say thank you to him for having more confidence in me than I have in myself and putting up with me those weekends that I was really stressed out. Lastly, I want to acknowledge my children Kanna, Amma and Ola. They did not directly facilitate this work, but I want to say thanks to them for bearing with me at the times I would be impatient with them because I had deadlines hanging over my head. They help ed me keep my sanity and balance attending to their needs took my mind off the pressures of studies and their constant demands was a reminder that a PhD program w ill end, but I am and will always be a mom.
7 T ABLE OF CONTENT S ACKNOWLEDGMENTS ................................ ................................ ................................ 4 LIST OF TABLES ................................ ................................ ................................ ......... 11 LIST OF FIGURES ................................ ................................ ................................ ...... 12 LIST OF ABBREVIATIONS ................................ ................................ .......................... 13 ABSTRA CT ................................ ................................ ................................ .................. 15 CHAPTER 1 INTRODUCTION ................................ ................................ ................................ ... 17 Background: HIV/AIDS Health Disparities in the United States (US) ..................... 17 HIV/AIDS related Disparities in the State of Florida ................................ ......... 20 Antiretroviral Medication Adherence ................................ ................................ ...... 21 Problem Statement ................................ ................................ ................................ 23 Preliminary Study ................................ ................................ ................................ .. 24 Preliminary Findings ................................ ................................ ........................ 27 Emerging Theoretical Concepts ................................ ................................ ...... 27 Summary of Key F indings ................................ ................................ ............... 33 Dissertation Research Focus ................................ ................................ ................. 34 2 REVIEW OF LITERATURE ................................ ................................ ................... 38 Part I Factors Affecting Medication Adherence among African American women living with HIV/AIDS ................................ ................................ ............... 38 Perceptions of African American wo men living with HIV/AIDS ......................... 39 Review of Key Preliminary Findings ................................ ................................ 42 Depression and denial ................................ ................................ .............. 43 Accept ance of HIV status and control of HIV illness ................................ .. 46 Self disclosure of HIV status ................................ ................................ ..... 47 Finding purpose/relevance ................................ ................................ ........ 49 Provider patient relationship ................................ ................................ ..... 51 Substance abuse ................................ ................................ ...................... 53 Peer support ................................ ................................ ............................. 56 Summary of Part I Review ................................ ................................ ............... 59 PART II Healthcare Provider Perspectives on Medication Adherence ................ 60 ...................... 60 Care Provider Perspectives ................................ ................................ ............. 63 Care Gaps: Current Practice versus the Ideal ................................ ................. 64 Summary of Part II Review ................................ ................................ .............. 65 3 METHODS ................................ ................................ ................................ ............ 74
8 Methodological Approach Grounded Theory and Thematic Analysis .................. 74 Characteristic F eatures of Grounded Theor y ................................ ................... 75 Epistemological position: Social Constructionism and Symbolic Interaction .... 76 Theoretical Perspective ................................ ................................ ................... 76 Grounded Theory: Strengths and Limitations ................................ .................. 77 Limitations ................................ ................................ ................................ 77 Strengths ................................ ................................ ................................ .. 79 Research Strategy ................................ ................................ ................................ 79 Study Objectives ................................ ................................ ............................. 79 Eligibility/Inclusion Criteria ................................ ................................ ............... 81 Recruitment and Sampling ................................ ................................ .............. 81 Data Collection ................................ ................................ ................................ 82 Data Analysis ................................ ................................ ................................ .. 84 Integrity and Protection of Human Subjects ................................ ........................... 87 Evaluation Criteria ................................ ................................ ........................... 87 Protection of Hu man Subjects ................................ ................................ ......... 89 Data sources ................................ ................................ ............................. 89 Protection from potential risks ................................ ................................ ... 90 Potential benefits to participants ................................ ............................... 91 Study Significance ................................ ................................ ................................ 91 Research ................................ ................................ ................ 92 4 FINDINGS ................................ ................................ ................................ ............. 99 Demographic Characteristics of Participants ................................ ......................... 99 Major Categories ................................ ................................ ................................ ... 99 Category 1: Socio Economic Context ................................ ............................ 100 Income level, care giver role and financial responsibility ......................... 100 Instability ................................ ................................ ................................ 101 Education/literacy level ................................ ................................ ........... 102 Lifestyle ................................ ................................ ................................ .. 102 Domestic violence/ sexual abuse ................................ ............................ 103 Life changing traumatic event ................................ ................................ 104 Category 2: Patient Illness Experience ................................ .......................... 105 Denial ................................ ................................ ................................ ..... 105 Acceptance of HIV status ................................ ................................ ........ 106 Perceived control of HIV disease ................................ ............................ 106 Self disclosure of HIV status ................................ ................................ ... 107 Motivation ................................ ................................ ............................... 109 Category 3: Mental and Emotional Health ................................ ..................... 109 Psychiatric disorders ................................ ................................ ............... 110 Depression ................................ ................................ ............................. 110 Emotional distress ................................ ................................ .................. 110 Instability ................................ ................................ ................................ 111 Category 4: Support ................................ ................................ ...................... 112 Social support ................................ ................................ ......................... 112 Instrumental support ................................ ................................ ............... 113
9 Peer support ................................ ................................ ........................... 114 Category 5: Access to Care ................................ ................................ .......... 115 Availability of relevant services/ resources ................................ .............. 115 Affordability of healthcare services ................................ .......................... 115 Accessibility of health care facilities ................................ ........................ 116 Category 6: Healthcare System ................................ ................................ ..... 117 Complexity of and inefficiencies in the care process ............................... 117 Fragmentation of the healthcare system ................................ ................. 120 Characteristics of the care setting ................................ ........................... 120 Resources ................................ ................................ .............................. 121 Category 7: Provider Patient Interaction ................................ ........................ 122 The provider patient relationship ................................ ............................. 122 ................................ ................................ ........ 122 Provider patient communication ................................ .............................. 125 Category 8: Patient Characteristics ................................ ............................... 125 Patient knowledge and understanding ................................ .................... 125 Patient disease/ treatment perception ................................ ..................... 126 Patient responsibility/ self management ................................ .................. 127 Self efficacy ................................ ................................ ............................ 128 Developing a Conceptual Model ................................ ................................ .......... 130 Comparative Analysis of Conceptual Models ................................ ....................... 131 ................................ ......... 131 Socio economic context ................................ ................................ .......... 131 ................................ .............................. 132 Patient characteristics ................................ ................................ ............. 136 Provider related factors ................................ ................................ ........... 142 ................................ ... 144 Patient illness experience ................................ ................................ ....... 144 Patient characteristics ................................ ................................ ............. 146 The h ealthcare system ................................ ................................ ............ 151 Care provider related factors ................................ ................................ .. 154 Current Practice versus Provider Perceived Patient Needs ................................ 162 Summary of Findings ................................ ................................ ........................... 169 5 DISCUS SION AND CONCLUSIONS ................................ ................................ ... 189 Study Objective 1 ................................ ................................ ................................ 189 Study Objective 2 ................................ ................................ ................................ 190 Study Objective 3 ................................ ................................ ................................ 194 Socio economic Context ................................ ................................ ............... 195 Pati ent related Factors ................................ ................................ .................. 197 Healthcare System related Factors ................................ ............................... 206 Care Provider related Factors ................................ ................................ ....... 207 Study Objective 4 ................................ ................................ ................................ 211 Conclusions ................................ ................................ ................................ ......... 215 Study Limitations ................................ ................................ ................................ 219 Next Steps Designing Targeted Interventions ................................ .................... 221
10 Integration of Conceptual Models ................................ ................................ .. 221 Selecting an Intervention Focus: Priority Matrix ................................ ............. 222 Impact Of Peer Educat ion/Navigation on Linkage to care a nd Medication Adherence ................................ ................................ ................................ 223 Implementing a Patient A dvisory Group ................................ ........................ 223 APPEND IX A PATIENT INTERVIEW GUIDE ................................ ................................ ............ 226 B PROVIDER INTERVIEW GUIDE ................................ ................................ ......... 228 C PROVIDER DEMOGRAPHIC INFORMATION FORM ................................ ......... 230 D PROFILE OF CARE PROVIDER PARTICIPANTS ................................ .............. 232 LIST OF REFERENCES ................................ ................................ ........................... 238 8 BIOGRAPHICAL SKETCH ................................ ................................ ........................ 261 1
11 LIST OF TABLES Table page 1 1 Demographics of p articipants for the p reliminary s tudy ................................ ..... 36 1 2 Preliminary study results: patient perceived barriers and facilitators of early linkage and medication adherence ................................ ................................ .... 37 2 1 ........................... 66 2 2 Studies on care provider perceptions ................................ ................................ 71 2 3 ................................ .......................... 73 3 1 Area 3/13 population pr ofile ................................ ................................ ............... 95 3 2 Refined codes ................................ ................................ ................................ ... 96 4 1 ..................... 172 4 2 Category 1: Socio economic context themes and summary of perceptions .. 173 4 3 Category 2: Patient illness experience themes and summary of perceptions 174 4 4 Category 3: Mental and emotional health themes and summary of perceptions ................................ ................................ ................................ ...... 176 4 5 C ategory 4: Support sub categories, themes and summary of perceptions .. 177 4 6 Category 5: Access to care themes and summary of percept ions ................ 178 4 7 Category 6: The healthcare system themes and summary of perceptions .... 179 4 8 Category 7: Provider patient interaction themes and summary of perceptions ................................ ................................ ................................ ...... 180 4 9 Category 8: Patient characteristics themes and summary of perceptions ..... 182 4 10 Summary of comparative analysis: patient and provider perspectives ............. 184 4 11 ................................ ................ 186
12 LIST OF FIGURES Figure page 3 1 Map of Area 3/13 ................................ ................................ ............................... 97 3 2 Sample memo from MaxQDA 11.0.2 ................................ ................................ 98 4 1 Conceptual model: Care provider perceptions of care seeking & adherence behavior among African American women living with HIV/AIDS ...................... 187 4 2 Conceptual model: Care seeking & adherence behavior among African American women living with HIV/AIDS p atient perceptions .......................... 188 5 1 Integrated model: Care provider and patient perceptions of care seeking & adherence behavior among African American women living with HIV/AIDS .... 224 5 2 Priority matrix: Selecting target areas for i ntervention ................................ ...... 225
13 LIST OF ABBREVIATIONS ADAP AIDS Drug Assistance Program. This is a grant given to States under the Ryan White HIV/AIDS Treatment Extension Act of 2009, to provide antiretroviral a nd related prescription drugs to persons living with HIV/AIDS in the low income bracket who have little or no insurance coverage. http://kff.org/hivaids/fact sheet/aids drug a ssistance programs/ AIDS Acquired Immune Deficiency Syndrome. This is the final stages of HIV infection; at which point, the immune system has become so compromised that the person infected is highly susceptible to opportunistic infections. ( http://aids.gov/hiv aids basics/hiv aids 101/what is hiv aids/ ) ART Antiretroviral Therapy. This is the standard treatment in HIV. It is a medication regimen consisting of three or more antiretroviral drugs with the goal of halting the progression of HIV disease by suppressing the HIV virus. ( http://www.who.int/hiv/topics/treatment/en/ ) CBPR Community based Participatory Research. A collaborative approach that facilitates the active involvement of community members in the entire research process from conception to interpretation and dissemination of results; with the goal of improving communit y health and reduce health disparities. CHD County Health Department. Government established and run local public health facilities that function based on the authority and responsibility derived from the state and local governing laws. DOH Departme nt of Health. A State established institution charged with the responsibility of protecting, promoting and improving the health of the citizenry through collaborative efforts at the state, county and community levels. ( http://www.floridahealth.gov/index.html ) FGD Focus Group Discussion. Interactive session between a group of individuals who have a common interest(s) or characteristic(s); facilitated by a moderator with the aim of gaining insight into a specific issue. ( http://ag.arizona.edu/sfcs/cyfernet/cyfar/focus.htm ) GA A P G ainesville Area AIDS Project. This is a community based organization that provides resources and services to persons living with HIV in the Gainesville area of Florida.
14 HAART antiretroviral drugs used in combination to effectively treat HIV ( also ART). ( http://www.cdc.gov/hiv/prevention/research/tap/ HIV Human Immunodeficiency Virus. This is a virus that destroys normally help i n fighting off infections and disease. ( http://www.cdc.gov/hiv/basics/whatishiv.html ) HOPWA Housing Opportunity for Persons living with HIV/AIDS. HRSA Health Resources and Services Administration This is o n e of the agenc ies within the US Department of Health and Human Services. Its primary function is the improvement of access to health care services to populations that are uninsured, isolated and/or medically underserved. http://www.hrsa.gov/index.html IRB Institutional Review Board. An institute charged with the responsibility of reviewing and monitoring the conduct of research involving human subjects to ensure adequate prote ction of their welfare and rights. ( http://irb.ufl.edu/ ) PEP Positives Empowering Positives. AN HIV support group hosted in the Alachua County Health Department, Florida PEPFAR United States President's Emergency Pla n for AIDS Relief This is the US government global initiative to alleviate the suffering and save the lives of those living with HIV/AIDS. http://www.pepfar.gov/about/index.htm PLWHIV Person(s) or people living with HIV/AIDS RYAN White program This is a federally funded program designed to provide aid to persons living with HIV I order to access services that are not covered under other assistantship programs.
15 Abstract of Dissertation Pre sented to the Graduate School of the University of Florida in Partial Fulfillment of the Requirements for the Degree of Doctor of Philosophy PATIENT AND HEALTH CARE PROVIDER PERCEPTIONS ON LINKAGE TO CARE AND MEDICATION ADHERENCE AMONG AFRICAN AMERICAN WOMEN LIVING WITH HIV/AIDS A QUALITATIVE COMPARATIVE S TUDY By Olihe N. Okoro May 2013 Chair: Folakemi Odedina Major: Pharmaceutical Outcomes and Policy The introduction of combination a ntiretroviral therapy has greatly improved health outcomes for persons living with HIV. Despite the reduction in HIV related morbidity and mortality, African American women continue to be the most disproportionately affected population In order to effecti vely address the burden of HIV/AIDS among this at risk population, there is need to gain a better understanding of the factors that influence and/or affect their care seeking behavior and specifically adherence to their antiretroviral medica tions. A prelim inary qualitative study was conducted with a sample of the target population. The objective was to determine the patient perceived factors associated with linkage to care and medication adherence. From the se a conceptual model describ ing the possible inte ractions personal, interpersonal and structural factors impacting medication adherence was developed Key findings in the preliminary study of the provider patient in teraction in HIV health related behavior and outcomes. For this dissertation, the main study objective s were to develop a comparative conceptual model based spectives and determine the differences
16 and similarities in perceived barrier s and facilitators associated with linkage to care and medication adherence in this population. Using the qualitative methodological approach of grounded theory, data was collected from twenty one health care providers physicians, pharmacists, nurses and case managers through in depth interviews. From the data analysis, another conceptual model was generated based on care provider perceptions and narrated experiences. Both models were compared for similarities and differences in perceptions. A key findi ng was the underlying influence of the socio economic context of members of the target population. Provider perceptions also revealed sub groups within the target population with different problems associated with HIV health related behavior. In a ddition, provider perceptions on health care practices that do not adequately meet the care needs o f this population were explored This research lays a foundation for the design of targeted interventions to improve linkage to care and enhance medication adherence among African American women living with HIV/AIDS. Various factors are identified at the individual, inter personal and structural levels; which provide the basis for different intervention strategies
17 CHAPTER 1 INTROD UCTION This chapter provides a background on HIV related health disparities in the United States, antiretroviral medication adherence, and the premise for the research conducted. A preliminary study investigating perceptions and experiences of African Amer ican women living with HIV/AIDS is also described Background: HIV/AIDS Health Disparities in the U nited S tates (US) Among all the racial/ethnic groups in the US, African Americans have been faced with the greatest burden of HIV/AIDS since the o nset of the epidemic (CDC, 2012 a ). Presently, there are over 1.1 million people living with HIV/AIDS in the U S and approximately 510,000 of these are African Americans (CDC, 2012 a ). Compared to other racial/ethnic groups in the US, African Americans have the highest rates of new HIV infections, AIDS diagnosis, and HIV prevalence ( CDC, 2012b ; Kaiser Foundation, 2013 ). Although only 12.3% of the US population self identified as African American in 2010 (US Census, 2010), African Americans acco unted for approximately ha lf (48 %) of the new AIDS cases diagnosed in 2011 (CDC, 201 3 ). In 2010, t he rate of AIDS case s diagnosed (per 100,000) among African American adults and ad olescents was 10 times the case rate for Whites. African American men had the highest case rates (75.6) for any group by race/ethnicity and gender, followed by African American women (33.7) (CDC, 2012a). The rate of new cases of HIV diagnosed per 100,000 was 103.6; again the highest for any group. HIV case rate among women was also highest for African American women (38.1) compared to other racial/ethnic groups (CDC, 2012b) HIV related mortality rates are also highest among African Americans. In 2009, African Ame ricans accounted for 56% of HIV related deaths (NCHS). On the average,
18 survival time following diagnosis of AIDS is lower for African Americans than any other racial/ethnic group (CDC, 2012a). In 2008, HIV was 4 th among the leading causes of death for both Afric an American men and African American women between the ages of 25 and 44 years; the highest ranking for any comparative group by race/ethnicity and gender (CDC, 2008). In 2010, approximately 64% of newly diagnosed cases of AIDS among women were African Am ericans, compared to 15% among Whites and 17% among Latina women (CDC, 2012c ). In 2010, African American women accounted for 34% new AIDS cases among African Americans, while White women constituted only 14% of newly diagnosed AIDS cases among whites. In a ddition to racial/ethnic disparities, there is also a disproportionate distribution of AIDS diagnoses among African Americans by geographical region. While the District of Columbia has the highest case rate of AIDS among African Americans (per 1000,000), m ore than half of all African Americans living with AIDS and most of the newly diagnosed AIDS cases among African Americans are in the South (Kaiser, 2011). In 2009, among the 10 states accounting for approximately 71% of African Americans living with AIDS Florida ranked 2 nd (3 rd in the US as a whole). According to the HIV Cost and Services Utilization Study (HCSUS), African Americans are more likely to delay seeking medical care for a number of reasons including access barriers (transportation), limitatio n imposed by illness severity, and prioritization of other needs over health care (Cunnigham et al., 1999; Anderson et al., 2002). Analysis of demographic, clinical and health care service utilization data collected from HIV care sites in different geograp hical areas of the US between 2000 and 2002 showed that hospitalization rates for persons living with HIV/AIDS (PLWHIV)
19 were higher for African Americans than for Whites, but no significant differences were found between the two groups for utilization of o utpatient services (Fleishman, 2005) There are also disparities in insurance coverage by race/ethnicity. Based on the HCSUS findings, African Americans living with HIV/AIDS are more likely to have government funded health insurance or no insurance covera ge. Up to 59% of African Americans living with HIV/AIDS were dependent on MEDICAID compared to 32% of their White counterparts. Only 14% of African Americans with HIV/AIDS were priva tely insured compared to 44% Whites, and 22% had no insuranc e coverage com pared to 17% Whites. Data from 1994 2000 showed that at the time of HIV diagnosis, African American s were more likely than Whites to be on MEDICAID or have no insurance c overage (Kaiser Foundation, 2011 ). It is interesting to note that s elf reported HIV t esting rates among the non elderly population (aged 18 64) is tw o tim e s higher among African Americans than Whites (Kaiser Foundation 2012 ). Among those testing positive, 31% of African Americans were likely to be tested in the more advanced stages of HIV disease; similar to White s (32%) and Latinos (36%) (CDC, 2012c ). In a recent release at the XIX International AIDS Conference by the Centers for Disease Co ntrol and Prevention (CDC, 2012d ), African Americans and younger persons living with HIV/AIDS ( PLWHIV ) likely to receive ongoing care and CDC, 2012d ). Analysis of data from the CDC surveillance systems found that 34% of African Americans living with HIV are receiving continuous care compared to 38% and 37% of Whites and Latinos respectively. Also, viral suppression has been achieved in only 21% of African Americans living with HIV compared to 30% among Whites and 26% among Latinos.
20 HIV/AIDS related Disparities in the State of Florida Florida accounts for 11.7% of all persons living with HIV/AIDS; which was estimated to be approximately 135,000 in 2010 (Florida DOH, 2010 annual report). In the same year, Florida ranked 3 rd in the US with respect to the prevalence of HIV infection. In 2010, HIV was the 6 th leading cause of death in Florida. Among African Americans, it was the 4 th leading cause of death, down from number one for the first time since 1988. Among African American women, it was the 2 nd leading cause of death, also down from the top for the first time in 22 co nsecutive years ( Florida DOH, 2011) In Florida, Afri can Americans constitute only 14 % of the adult population, but account for 44 % of HIV cases in the adult population. Both African American men and African American women are disproportionately affected by HIV/AIDS Newly reported HIV cases in the ad ult po pulation for the year 2012 was five times higher among African Americans men compared to White men ( Florida HIV/AIDS Annual Report, 2012) The case rate among African A merican women was also higher ( 1 4.8 times) compared to White women (Flor ida HIV/AIDS Annual Report, 2012 ). In the adult population (as at 2011) for every 4 0 African American men, one was living with HIV compared to one out of every 195 among White men. F or women, it was one in every 60 African Amer ican women and one in every 1,085 White women (Florida DOH, 2012) It is estimated that approximately one in 30 African American women will be diagnosed with HIV at some point in the course of their lifetimes ( Florida DOH, 2012 a ) Among women, HIV related deaths and HIV death rates are highest for African American women and was the fifth leading cause of death for African Ame rican women aged 25 44 in 2012 ( F lorida DOH a ).
21 There is also evidence of disparities in HIV related morbidity and morta lity. Analysis of data spanning from 2007 2012 found that median survival time from the time of diagnosis to AIDS to time of death was 6 0 months for African Americans. This was significantly higher among Whites (83 months ) though similar for the Hispa nic population ( Florida D OH, 201 3 ). Among African Americans, median survival time was also lower for women ( 57 months) compared to 63 months for men ( Florida D OH 201 3 ). Antiretroviral Medication Adherence refers to the ability of a person living with HIV/AIDS to manage and maintain a therapeutic regimen (typically HAART highly active antiretroviral therapies) prescribed for the suppression of the HIV viral replication in order to enhance immune function ( APHA, 2004). The use of HAART has proven to be highly successful in controlling viral replication. As a result, the di sease progression is slowed and persons living with HIV are able to live longer with improved quality of life. However, the efficacy of t reatment has been shown to have Beer et al. 2000; Nachega et al. 2007; Shuter et al. 2007; Martin et al. 2008; Ford et al. 2010). Medication a dherence therefore, i s a key determinant of therapeutic success in HIV treatment. In contrast, non adherence to antiretroviral therapy (ART) has both clini cal and economic implications ( Munakata et al 2006). Non adherence to antiretroviral treatment is typically associated with increased HIV related morbidity and mortality, and increase in health care expenditure and resource utilization from a health system perspective.
22 There has been considerable research done in the area of antiretroviral medication adherence. A myriad of factors have been associated with non adherence to antiretroviral therapy. Barriers and/or facilitators of medication adherence among PLWHIVs have been categorized into factors related to the patient, the treatment/ regimen, the patient provider relations hip, and the environment al factors (including the social environment, economic status, structural environment, and the health care system). (Ramirez & Cote, 2003; Konkle Parker et al 2008; Vervoort et al 2007; WHO, 2003; Ickovics and Meade, 2002) Patie about the illness and/or the medications they are taking and their ability to adhere to the treatment regimen ( i.e. their self efficacy); literacy level, educational level, s ubstance abuse, knowledge of treatment, stress, anxiety and depression. More recently, patien t s and has since been included in the guidelines for initiation of antiret roviral therapy (Grimes & Grimes, 2010). With regards to the medication, factors that have been identified include the type of medication (formulation and pill size), the side effects experienced, number of pills, frequency of dosage, and generally the com plexity of the medication regimen ( Puigvents et al., 2002). The provider patient relationship has also been cited as influencing patient adherence (Murp hy et al., 2003; Ramirez & Cote, 2003 perception of how comfortable they feel in interacting with the health care professional,
23 i nformation by asking questions, how clearly and effectively the provider communicates information to the patient and individual characteristics of the health professional (experience with antiretroviral therapy and treatment preferences), and accessibility of the provider. Literature also suggests that trust in the health care provider influences medication adherence in HIV treatment (Altice L, Mostashari & Friedland, 2001; Whetten et al. 2006; Konkle Parker et al 2008 ). Factors related to the environmen t include perceived social support, perceived stigma, access to care, and availability of resources like transportation and finances (Russel et al., 2003; Konkle Parker et al., 2008 ). Problem Statement It is evident that African American women in Florida a re disproportionately affected by HIV/AIDS. For 22 consecutive years ( until 2010) HIV/AIDS remained the leading cause of death among African American women aged 25 44years in Florida (Fl orida Department of Health, 2012 ). African American women also have h igher HIV incidence and mortality rates, and are the least likely to adhere to medication use of all sub populations in Florida. T h ey accounted for 69 % of all adult women infected with HIV by 2012 but constitute only 16% of the female population in the state (Fl orida Department of Health, 2012 ). The interplay of many factors has been identified as reasons for higher impact of HIV in the African American population nationally. For example, the recent US national HIV/AIDS strategy identified sexual transmi ssion (often within the e nvironment of already high HIV and STDs prevalence), injection drug use, poverty, stigma, homelessness and lack of access to healthcare as factors which may affect this population (NHAS, 2010).
24 The use of highly active antiretrovir al therapies (HAART) has proven to be highly successful in controlling viral replication; and thus slowing disease progression as well as improving quality of life. However, the efficacy of treatment is directly correlated with ence to the prescribed regimen (Low Beer et al. 2000; Nachega et al. 2007; Shuter et al. 2007; Martin et al. 2008; Ford et al. 2010). To reduce morbidity and mortality in the target population, it is therefore necessary to investigate the barriers to and facilitators of HIV medication adherence. In addition, it is important to understand how these barriers and facilitators influence adherence behavior to produce specific health outcomes. Preliminary Study To gain some insight into the factors influenci ng medication adherence, a pilot qualitative study was conducted to explore the perspectives and experiences of African American women living with HIV/AIDS relative to antiretroviral treatment (ART) The objective of the qualitative study was to derive a conceptual model that would effectively describe medication use and adherence behavior of African American women living with HIV/AIDS by investigating perceived barriers and facilitators/ motivators as sociated with medication adherence behavior in this population using Grounded Theory as the methodological approach (Glaser & Strauss, 1967; Charmaz, 2006). A community based participatory approach (CBPR) was adopted for this study. An advisory board was constituted to guide the research. Members of the advisory board were drawn from the County Health Department, a community based organization, University of Florida and an HIV support group. The fiv e members of the board included the minority AIDS program coordinator faculty from the University of
25 Florida, an active member an HIV support group, an HIV clinical staff and an HIV advocate/ volunteer engaged in HIV awareness activities in the community. The advisory board helped generate the research objectives and interview questions based on their expert knowledge of and interaction with the target population. They met periodically to review progress and give recommendations on further actions. Members of the board provided valuable insight about the target population and helped develop the protocol and interview guide for the study. At the end of the study, findings were reviewed and endorsed by the board. To be included in the study, participants had to be African American, female, 18 years and above, be able to speak E nglish, been diagnosed as HIV positive and currently on an antiretroviral regimen. Participants were drawn from HIV/AIDS support groups in the local community. IRB approval for this stu dy was obtained from the University of Florida. Fliers advertising the study were distributed and interested participants were requested to call or email the principal investigator. Those who met the inclusion criteria and consented to participating in the study had an interview scheduled at a time and venue of their convenience with due consideration to privacy and confidentiality. In keeping with the iterative process of grounded theory which involves the simultaneous collection and analysis of data, cate gories emerging from the preliminary data analysis of the initial interviews informed the furt her selection of participants ( Bowers, 1989; Richards & Morse, 2007). Theoretical sampling involving the search for relevant data with the aim of elaborating and refining the emerging categories,
26 continued until no new properties of these categories emerged (saturation). Saturation was reached after interviews with t en participants. The interviews were in depth using a semi structured interview guide ( Appendix A ). Interviews were scheduled separately for each participant. All the interviews were audio recorded with written consent from participants. All interviews were done by the principal investigator. Demographic information was collected and open ended question s used durin g the interviews ( Appendix A ). Based on emerging categories, other questions evolved as the interviews progressed. The length of the interviews varied; ranging from 27 to 72 minutes. All participants were compensated with a $20 gift card for th eir time and travel. The interviews were transcribed verbatim. An initial line by line open coding was used to categorize and summarize the data (Glaser, 1978), followed by more focused coding centered on the significant codes and categories that tended to be more conceptual. Memo writing (the construction of analytical notes) was on going throughout the coding process. This facilitated constant comparative analysis, aimed at comparing data to data (including that from relevant literature), a nd data to codes and categories in order to identify similarities and differences. This also aided the abstraction of relevant theoretical categories and revealed gaps that needed further investigation. All these led up to the theoretical level of coding w here relationships between categories emerging from the data were constructed (Charmaz, 2006). A conceptual model was then developed describing the process of becoming adherent to antiretroviral medication among Black women living with HIV/AIDS from their perspective (F igure 4 2)
27 Preliminary Findings The demographic characteristics of the particip ants are summarized in T able 1 1. All the participants were native born African American. Participants asked to list their antiretroviral medications and describe the regimen and all reported having knowledge of their current medications. However, medical records were not verified to confirm accuracy of medication knowledge. Most participants (8) reported optimum adherence with only two participants admitti ng to having occasional missed doses. Perceived barriers and facilitators to medication adherence: Initial coding of the data identified the perceived barriers and facilitators. These are categorized into intra personal, inter personal, medication related and healthcare system related factors ( T able 1 2 ). Further data analysis was aimed at gaining understanding about the mechanisms by which the factors identified actually influence care seeking and medication adherence behavior in this population. Findings suggest that these are influenced directly by healthcare process/system factors (including the healthcare provider) and indirectly, but significantly by factors associate d with their illness experience ( Figure 1 1 ) Emerging Theoretical Concepts Four theo retical concepts emerged from the data analyses. Emerging Theoretical Concept 1 : Linkage to care is associated with the nature of the referral; with early linkage being more likely if referral is active versus passive. Early linkage to care was associated with initiating the following active referral steps at the point of HIV diagnosis: the patient was adequately counseled; clinical appointment was fixed; and adequate social support was provided, for example
28 transportation arrangement, case management ref errals, reminder(s) about appointments through telephone calls, and provision of escorts for appointments. Participant: When I got the news they immediately made the appointment for me because . see at that time I was living out in (names a County) . and the meds . for doctors and everybody to get me immediately in, get me medications they gave me some motiva [ L inked to care immediately after diagnosis ] Persons who were not counseled, and/or simply told verbally to see a doctor or given written information to make an appointment at the local health department (passive referral) were unlikely to follow through with linkage resulting in considerable delay (often months or even years) before entry into care. Emerging Theoretical Concept 2: The HIV illness experience of African American women living with HIV significantly influence s their HIV health related behavior (care seeking, medication adherence, retention in treatment). meaning ascr ibed to their experience of having the disease. Participants typically reported an initial state of denial and a common experience of depression. This point for some was also characterized by substance abuse (illicit drugs, tobacco, and/or alcohol). In thi s phase medication adherence was poor. Participant: In that 6 months period of time I was just blank. I was trying to numb just trying to get it out of my mind. With that I did drugs to keep it out . yeah, to wash it away. [ R eferring to substance abuse ] Critical points associated with change in adherence behavior included 1. A cceptance of HIV status;
29 2. P erception of having control over HIV disease; 3. S elf disclosure of HIV status to significant persons (especially family members); and 4. F indi ng a reason/purpose for living ( F igure 1 1 ). Change in perception of HIV disease and treatment was identified as mediating the transition from denial to acceptance of HIV status. This was partly attributed to an increase in H IV knowledge and also associated with interaction with other persons living into care and/or ART adherence was more likely. Participant: A nd I saw all these people that we re living with this virus and they were happy, they were OK with themselves. I wanted what they had . They were living productive lives and they were making a difference. . I wanted to be like them so someday I could live with this virus and be OK wi th me. And I had never thought that you could. And then I saw (mentions name) be ashamed . [ On coming to terms with having HIV ] In addition to explicit detailing on the importance of medication adherence and they perceived others to have in managing their lives despite living with HIV. Gaining control over the disease was instrumental to becoming pro active in HIV self management (asking questions, seeking clarifications from care providers, etc.) Participant: I studied more about the virus, I learnt about it. Not only that I had it, but about it to know it and understand the things that I needed to do so that I allow it to dictate my life. And when I learnt ho w to do that, I was ok with me. [ F ollowing interaction with other PLWHIV ] Positive response from family me mbers on disclosure of status provided them engage in behaviors that promote healthy living including medication adherence. For
30 some, self medications could be taken without the need for discretion. Participant: tell anyone. perspective, that made it better for me. I put it out. I rather put it out there than so mebody else. So I took the initiative to take my life back so I can live my life. So the shame went away. [ Participant deflecting stigma ] There were three recurring themes associated with finding reason to live caregiver role; HIV advocacy; and renewed faith in God. The majority had children, so fulfilling their caregiver role was a strong motivation to live. Involvement in HIV advocacy ac tivities through membership in HIV support groups reportedly gave a sense of relevance. Generally, there was a common belief that God was all sovereign and had sustained their lives for a purpose. The resulting motivation to live, reportedly increased self efficacy to make the needed lifestyle changes including quitting substance abuse and becoming more adherent to taking their medication. Participant: And I began to be more into the community and people knew me. And they call and they ask for me specifica lly to come to their places and to speak to them . I began to understand that I was really needed in more ways than one. And I really had a purpose . I needed to make sure I stay healthy in order to be useful, because then my meds . I made sur e I took them on time . the way I thought about the virus was totally different . [ O n how HIV advocacy gave her a sense of purpose ] Emerging Theoretical Concept 3: experience influences medication ad herence behavior ; with p oint s further along the trajectory (perceived control, self disclosure and fin ding purpose) associated with better medication adherence
31 Persons who perceived themselves to have acquired some measure of control over their lives and HIV disease, those who had disclosed their HIV status to others, and/or those who believed that they had reason to live were more likely to take their antiretroviral medications and stay in care. Participant: started asking the questions and I forget what I wanted to ask, and I was inquisitive about why made my body does this . I wanted to know why. I began to take the initiative to ta ke my own care seriously and to take control of it, so I could live [ Participant about self management following perceived control of illness ] Emerging Theoretical Concept 4: Key f actors that facilitate medication adherence at strategic points along this illness trajectory include the patient provider interaction; and interaction with other PLWHIV (Observational learning) Participants characterized a good provider relationship as one where the provider was caring; knew them as a person; and was committed to their wellbeing. The care approach that served as a wake up call for some was described in terms that may be interpreted as paternalistic with the physician issuing a stern warning regarding the outcome of continued non adherence. However, given the co ntext of an established provider Participant: She asked me if I wanted to die, basically. She sat me down one day and ( crying) I was taking my meds sometimes, was straight up with me about the importance of me taking my drugs and what I was truly doing to myself by playing with the meds . The way sh e asked me did I wanna live or did I wanna die . She put it point blank. Other elements of the care approach that enhanced adherence behavior were being open about treatment progress, focusing on other needs (emotional, psycho
32 social), affirmation as A common theme resonating through the narratives was the impact of interacting with other PLWHIV perceived as living relatively healthy and productive lives. This reportedly helped to change their perception of HIV disease and treatment, providing motivation and self efficacy to be adherent. Participant: there was more. Then I started to silent about it. T he theoretical model developed was based on the emerging theoretical concepts from our study (T able 1 2), and describes the care seeking and medication adherence behavior for African American women living with HIV/AIDS. Findings from other studies demonstrate that referral to care is critical to early linkage in HIV care. Passive referrals were found to be less effective, compared to an active referral whereby a firm appointment is scheduled and needed support is provided (Garland et al., 2011; Hightow Weidman et al., 2011; Giordano et al., 2005 ; Mugavero et al., 2007). Our findings in this study sample als o suggest that knowledge about HIV disease and efficacy of ART is low at the time of diagnosis and treatment initiation. Change in perceptions about the disease and/or ART is critical to acceptance of HIV status and perceived control of disease. Knowledge about HIV treatment has been associated with better medication adherence (Weiss et al., 2003). The challenge in this population however, is to determine when patients are receptive to the relevant information given their ongoing illness experience. Patient counseling has to be timely and tailored to meet patient specific needs.
33 The philosophy of the African American women interviewed for this study is that treatment should be holistic encompassing the whole individual body, spirit and mind (Landrine & Klonoff, 1992). Our findings demonstrate that the care expectations and the dynamics of the provider patient relationship is perceived differently from the oriented. The care expectations of this study sample a re that the health care provider [1.] focuses on her as a whole being that needs medical, emotional and spiritual healing and not exclusively on the disease and the physical symptomatology (Bailey, 1987); [2.] shows interest in her as a person; [3.] shows her respect as a deserving individual; and [4.] is caring, empathic and sensitive to her concerns. Care providers need to understand the care needs of this population and adopt a patient centered approach. Observing other PLWHIV was reported to have a dram atic effect on adherence behavior. Findings from other studies demonstrate that integration of peer workers or peer navigators (i.e. persons who are living with HIV) in the HIV care team enhances medication adherence (Marino, Simoni & Silverstein, 2007 Dut cher et al., 2011; PEER Center, 2012a). Peer workers are typically trained and are themselves adherent to their ART (PEER Center, 2012b). As part of the care team, they facilitate early linkage to care by helping the newly diagnosed patient navigate the he althcare system. They are also there to give emotional, informational, and appraisal support, and provide mentorship for achieving treatment adherence goals. Summary of Key Findings The conceptual model shows that the HIV illness experience of the African American woman is at the core of her HIV health related behavior. Her illness experience is shown to significantly affect her response to HIV diagnosis, her decision
34 to seek clinical care and adherence to treatment. The model describes the relationship bet ween the illness experience and the clinical care process, and also identifies possible mechanisms through which the provider patient interaction and observational learning affects medication adherence. Enhancing medication adherence requires that health care providers be more patient centered and holistic in their care approach. Integration of peer navigators into the HIV care team should also be considered as a strategy effective in facilitating early linkage and enhancing medication adherence. From a he alth system perspective, the HIV care process appears to be a linear process with the objective of getting newly diagnosed patient linked to care, evaluated for treatment, initiated and maintained on ART However, our findings suggest that while care provi ders may be focused on HIV disease management, African American women living with HIV are focused on their HIV illness experience and concerned about the experience is piv otal to health related behavior including medication adherence. Dissertation Research Focus From the preliminary findings, the health care provider was perceived as playing a significant role in facilitating medication adherence in the target population. T he next phase of the study therefore focused on deriving a comparative conceptua l model based on health care provider perceptions and experiences on factors that influence linkage to care and medication adherence among African American women living with HI V/AIDS. The purpose of the study was to determine the concordance between patient perceptions and provider perceptions on factors that determine early linkage to HIV care and influence medication adherence in this population.
35 Research findings also sugges t that there are disparities between healthcare adherence and what actually happens in practice (Reif et al., 2006; Park Wyllie, Kam and Bayoumi, 2009) Th is dissertation also as sessed healt h care provider perceptions of es that are barriers to adherence behavior in the target population. For this study, health care providers referred to physicians, pharmacists, nu rses and case managers. In this healthcare provider. The immediate objectives of the study were 1. To derive a comparative model of medication adherence behavior of African American women living with HIV/AIDS based on health care provider perceptions and experiences. 2. To compare patient perceptions and health care provider perceptions of factors that help to facilitate early linkage of African American women newly diagnosed with HIV to care. 3. To compare patient perceptions and health care provider perceptions of factors that influence medication adherence behavior of African American women living with HIV/AIDS. 4. To explore differences between health care provider perceptions of medication adherence needs of African American women living with HIV/AIDS and current HIV care practices.
36 Table 1 1. Demographics of p articipants for the preliminary study Demographic characteristic s Number (%) Race/Ethnicity Native born African American 10 (100) Age category 35 39 years 1 (10) 9 (90) Marital Status Single Married Separated Divorced 3 (30) 3 (30) 1 (10) 3 (30) No. of children Have no children Have children Maximum = 6 Minimum = 1 1 (10) 9 (90) Educational attainment High school Some College credit 8 (80) 2 (20) Employment status Unemployed 10 (100) No. of years since HIV diagnosis Mean = 13.4 Range = 3 24 Knowledge of current medications (self reported) Yes 10 (100)
37 Table 1 2. Preliminary Study Results: Patient P erceived B arriers and F acilitators of Early L inkage and M edication A dherence Intra personal (patient related factors ) HIV knowledge Beliefs and perceptions of HIV disease and treatment Denial / Acceptance of HIV status Mental/emotional wellbeing Depression Suicide ideation Substance abuse [alcohol, tobacco, illicit drugs] Stigma [perceived and internalized] emotional distress, fear Perceived control of HIV disease Self disclosure of HIV status Inherent distrust in the health care system Sense of relevance/purpose Patient i nvolvement in care interaction Medication related experiences (patient related factors ) Side effects Large pill size [difficulty in swallowing] Complexity of regimen [Multiple drugs, co morbidities] Chronic treatment [Overwhelming, challenging] Treatment outcomes [Perceived efficacy, clinical markers] Dosing reminders Inter personal factors Provider related Provider patient relationship [Caring, trust, open] Provider care approach [Holistic, patient centered, respectful vs. judgme ntal, insensitive, discriminatory] Support Social support [love and acceptance from family] Health care system related Consistent care provider Active versus passive referral (specific to linkage to care) Availability of patient counseling/ education
38 CHAPTER 2 REVIEW OF LITERATURE In this chapter literature relevant to the research area is reviewed. The review is in two parts. The first part is a review of research investigating factors relevant to and/or associated with medication adherence in African American women based on the preliminary findings. The studies that do not focus exclusively on African American women had samples with a disproportionately h igh proportion of the target population. The second part focuses on studies co mparing provider and patient perceptions of barriers to medication adherence; studies on health care provider perceptions on factors influencing antiretroviral medication adheren ce; and those assessing care gaps between current HIV care related practice s and work better to enhance medication adherence in the target population ) Part I Factors Affecting Medication Adherence among African Am erican women living with HIV/AIDS Antiretroviral adherence has been shown to have strong correlation with HIV viral suppression, and is associated with decrease in rates of development of drug resistant HIV strains, decrease in mortality rate, and improvem quality of life ( WHO, 2003 ; Chesney, 2006 ). To achieve HIV viral suppression which is the therapeutic goal of antiretroviral treatment, medication adherence rates of 95% and above are considered necessary (APHA, 2004; APhA 2009). Findings from various studies in different patient populations with HIV and using different methods of adherence measures clearly demonstrate that medication adherence rates in patients with HIV disease are below this target ( McNabb et al., 2001; Arnsten et al., 2 001 ; Mannheimer et al., 2002; Paterson et al., 2002; Ban gsberg et al., 2002; Wagner et al., 2003; Howard et al., 2002 ).
39 Compared to other racial/ethnic groups, African Americans living with HIV have been found to have lower rates of adherence to their pre scribed antiretroviral regimen. ( Schackman et al., 2009 ; Giordano et al. 2010 ). African American women particularly report significantly lower adherence to ART compared to other populations and as a consequence have high mortality rates (Hodder et al., 20 12; Murphy et al., 2012) Perceptions of African American women living with HIV/AIDS A review of literature on adherence behavior in antiretroviral therapy found a limited number of studies that specifically explored the perceptions of African American wome n living with HIV with regard to barriers to and/or facilitators of antiretroviral medication adherence. In a qualitative study by Edwards (2006), the purpose of the study was to explore the association between perceived social support and ART adherence. D ata was collected using journals and semi structured interviews. Participants were all African American women living with HIV (n=20). Specific social issues identified by the participants as constituting barriers to HIV medication were related st igma, feeling unloved and uncared for, relationship turbulence, and being married to an HIV factors that facilitated medication adherence and these included having a supportive family and the presence of young children in the lives of these women. Another study that had 36 HIV positive women participants of diverse racial/ethnic background focused on understanding the patterns, barriers and facilitators to medication adherence in women caring f or children (Wood, Tobias and McCree, 2004). Few of the women reported continuous adherence or non adherence since initiation on antiretroviral therapy. Most reported shifting patterns of adherence over their medication use history. Along with previously e
40 discussions about barriers and facilitators of adherence tended to center around their relationships with adult family members. The nature and quality of these relationships (supportive or conflicting) were identified a s key factors affecting adherence. Parenting was generally reported as being significantly stressful, but they clearly cited their relationships with the children as giving them a sense of purpose and serving as powerful motivation to keep up with care. In a comparison of women living with HIV/AIDS in the pre HAART era and the HAART era, Schrimshaw, Siegel and Lekas (2005) examined potential ethnic/racial differences within each time period, and changes between the two time periods. The investigators iden tified three major categories of attitudes towards antiretroviral medications negative attitudes towards antiretroviral medications; perceived benefits/effectiveness of antiretroviral medications; and attitudes towards side effects. HAART era women had l ess negative attitudes toward antiretroviral medications, better perception of benefits and were more accepting of side effects. With respect to racial/ethnic differences, within both time periods, White women reported the most favorable attitudes and Afri can American women reported the least favorable attitudes. The authors suggest ed that the prevalence of negative attitudes towards antiretroviral medication among African American women may account for the disparities evident in health outcomes in this pop ulation. In another study, the investigators targeted the African American low income population in the South West of the US (Konkle Parker, Erlen and Dubbert, 2008). The objective of the study was to identify barriers and facilitators associated with medi cation adherence with long term objective of deriving data to inform the design of an
41 adherence intervention in this population. Twenty participants were recruited for focus groups and content analysis employed to identify major emerging themes. Barriers ences of not taking the medicines, prayer and spirituality, improvements in the medicines, and In a study of HIV positive African American women on HAART (Sankar et al. 2000), the investigators sought to understand the co ncerns and perceptions that promote or deter adherence to antiretroviral medication by HIV positive African analysis to identify patterns and variables associated with adherence practice from the narratives of the participants (n=15); and sources of influence that served to motivate or undermine adherence. Participants were asked to rate themselves with respect to adherence and meeting up with clinic appointments. Their attending physicians were also asked to assess the participants on the same measures. Findings showed that fear that stigma may be internalized as well as perceived. They stated tha t the fear of stigma was a reflection of the non themselves as well as to others to avoid the implied moral judgment associated with a adherence to their medication was associ ated with stigma and what could be interpreted as an avoidance coping mechanism drawing from the and
42 made reference to their missed doses in the context of not wanting to be re minded that they had the disease. Persons in these categories also tended to not identify with having HIV (i.e. being more or less in denial) and took on a passive role in their care as characterized by putting the responsibility of ensuring adherence on t he health care always adherent reference to stigma but rather conveyed in their narrative an acceptance of their HIV status. Adherent participants also made more reference to the physician and scientific rationale; demonstrating, according to the authors, substantial knowledge and understanding of the mechanism of both the disease and the antiretroviral treatment. Non adherent participants reported being conflicted by multiple sources of social authority including the media, God, and family that were not always in resonance with professional authority (the physicians). Summary: It is evident that perceived barriers and facilitators associated with antiretroviral adherence in Afr ican American women living with HIV are centered around their beliefs and attitudes as related to HIV disease and treatment; HIV illness and treatment related experiences; and interpersonal relationships with specific others like family members and health care providers. Review of Key Preliminary Findings Relevant literature was reviewed to determine other research findings on the perspectives. Factors reviewed include depression and denial, substance abuse, peer sup port, acceptance of HIV status and control of HIV illness, self disclosure of HIV status, finding purpose/relevance, HIV advocacy, and the provider patient relationship.
43 Depression and denial Depressive symptoms are more commonly experienced by persons living with HIV than in the general population (Ahdieh Grant et al., 2005). Depression has been associated with poor adherence to ART (Kacanek et al., 2010; Kishoff, Campbell and Naidoo, 2012). C onsistently, among those living with HIV, women have reported higher rates of depressive symptoms than men ( Hudson et al., 2001 ; Cook et al., 2002; Wisniewski et al., 2005; Moneyham et al., 2005 ). Research findings also demonstrate that among African Ameri cans living with HIV, women are more susceptible to emotional distress and depressive symptoms; and report coping with HIV to be more challenging than men (Linn, Poku, Cain, Holzapfel, and Crawford, 1995 ; Fiest Price and Wright, 2003). In a study focusing on depressive symptoms among African American women living with HIV (Moneyham, et al., 2000), secondary data analysis was used to examine and describe the level of depressive symptoms in this population. A sub sample of 152 African American women was iden tified from a larger cohort of women. The objective of Findings from this study also determined that the mean score for depressive symptoms in this sub sample was much higher than previously determined in other samples of African American women and men respectively. In another study by Moneyham et al (2005) in which most of the particip ants (84%) were African American women, depression scores for 93% of the participants were between 16 and 56, with a mean of 24.05 and standard deviation of 12.72. The objectives of the study were to identify variables that had potential to be used as
44 indi cators of risk of depression; and assess the mediating effec ts of coping and social support The investigators hypothesized that social support and coping were mediators of the association between HIV related stressors and depression. Their findings determ ined that denial as a coping strategy was one of the variables significantly correlated with depression. Other coping strategies that were identified included social support, withdrawal, and engagement in spiritual activities. The correlation of denial wit h depressive symptoms in this population was positive with the most depressed women resorting to denial and withdrawal/isolation as coping strategies. In a study by Catz et al.(2002), the objective was to evaluate the psychological distress experienced by low income women living with HIV/AIDS who were from minority groups in association with their self reported coping mechanisms. Of the sample recruited, most (84%) were African American. The researchers also stated that and psychosocial factors contributed to their Felton and McClure, 2002). Measures of depression, anxiety, perceived social support and coping were obtained as well as information such as tim e since HIV diagnosis, CD4 count and demographic characteristics. For this study, specific sub scales of the Ways of Coping Questionnaire (WOC) were evaluated Planful Problem Solving and Escape Avoidance Greater degrees of escape avoidance were found to be associated with l ess social support and less planful problem solving E xperience of more life stressors was contributory to higher levels of depression. Participants in the study were also more likely to use avoidance coping mechanisms to deal with the ir distress. Escape
45 (Skinner et al. 2003). This is a passive coping mechanis m similar to denial. Common media of escape include the use of alcohol and other addictive substances. In a prospective cohort study investigating the effects of depression and mental health related quality of life on the use of HAART among women living w ith HIV, Cook et al. (2002) found that high levels of depression and poor mental health were prevalent in the cohort and significantly associated with HAART non adherence. Using random effects regression models, the longitudinal effects of depression and m ental health on probability of using HAART were estimated while controlling for multiple clinical indicators, demographic characteristics, behavioral factors (illicit drug/alcohol use, participation in clinical trials), health care service utilization feat ures and study site. Those receiving treatment for mental health were more likely to adhere to HAART compared to those who were not being treated for depression and/or other mental health problems. ith internalized stigma, anxiety, depression and use of alternative medicines, which are all known barriers to antiretroviral adherence ( Weiss et al., 2011; Vervoot et al., 2007 ; Nam et al., 2 008; Konkle Parker et al., 2008 ). Denial is a common passive cop ing strategy that is employed by individuals following diagnosis of their HIV and this is not different among African Ame rican women ( Fiest Price and Wright, 2004). Denial following HIV diagnosis among African American women living with HIV is believed to be associated with attitudes and beliefs about HIV prior to diagnosis. African American women have been reported as under estimat ing their susceptibility to HIV infection (Russell and Smith,
46 1999). This has been attributed to a lack of understanding of pat terns in high risk behaviors; being unaware of the risky sexual behaviors that partners are engaged in; lack of knowledge about HIV related symptoms, and the prevalent perception of non susceptibility to HIV infection in this population (Siegal, Ravels, an d Gorey, 1998) Summary : Depressive symptoms have been associated with perceived/internalized stigma and also with being in denial. African American women living with HIV are particularly susceptible to feeling stigmatized and experiencing symptoms of depr ession. Avoidance coping mechanisms such as denial are commonly adopted in this population and may account for the high levels of depression and consequently poor adherence rates and treatment outco mes. Our hypothesis is that this relationship with adheren ce is mediated by HIV illness perception as shaped by HIV disease and treatment knowledge or lack thereof. Acceptance of HIV status and control of HIV illness Acceptance of HIV diagnosis has been identified as a facilitator of medication adherence (Sankar, Luborsky, Schuman and Roberts, 2000; Nam et al., 2008) ; Konkle Parker, Erlen and Dubbert, 2008 ). According to Moitra, Herbert and Forman ( 2012), and based on the cognitive appraisal model of stress and coping (Lazarus and Folkman, 1984) avoidance based coping strategies (such as denial) may sabotage health promoting behavior (such as medication adherence). They posit therefore that for adherence to ART, a critical factor is the acceptance of HIV diagnosis and the stresses that come with it (Moitra, Herbert and Forman, 2012). They go further to describe the acceptance of HIV status as a process (not automatic) and explain the concept of n, the
47 acceptance of HIV disease is therefore premised on adequate understanding of the etiology of HIV disease and accurate perception of prognosis of HIV illness given the advent of antiretroviral therapy. We therefore posit that transition from a state of denial to that of acceptance is mediated by a change in illness perception wh ich is facilitated by an increase in HIV disease and HIV treatment knowledge. In addition to illness acceptance, beliefs about how much control one has with regards to their illness, is a critical factor in self care necessary in chronic conditions like HI V. Most people at diagnosis have pre shaped perceptions about HIV disease, their expectations of survival and treatment outco mes (Moitra, Herbert and Forman, 2012). These perceptions form the basis for beliefs about how much control one has over their HIV illness. In a study that examined HIV patients who had excellent adherence rates, the belief that one was in control of their HIV illness was associated with higher levels of adherence to ART (Malcolm et al., 2003) Summary: Acceptance of HIV status has be en shown to facilitate adherence to medication adherence, and conversely engagement in avoidance based coping behavior such as denial has been associated with poorer medication adherence in the general population of those living with HIV (Weaver et al. 20 05). However, to the best of our knowledge, there are no studies that have determined the factor(s) mediating change from the state of denial to acceptance of HIV status or factors associated with increased control of HIV illness among African American wom en living with HIV. S elf disclosure of HIV status HIV status self disclosure has been associated with receiving social support which has also been shown to be positively correlated with desirable health related
48 behavior including the improvement of adhere nce behavior. In the study by Stirratt et al. (2006), the objective was to examin e the relationship between self disclosure of HIV would be associated with higher adherenc e, and that the relationship between disclosure and adherence would be mediated by the provision of practical social HIV who had poor medication adherence rates (>80%) In this sample, 62% was African American. A social networks questionnaire was used to assess the extent of HIV status disclosure to two major categories family members and personal contacts. Most of the participants reported high rates of dis closure. G reater degree of self disclosure of HIV status was associated with higher rates of medication adherence in this population. The correlation between ART adherence and two measures of disclosure were statistically tage of informed family members and the (Stirratt et al., 2006). While the correlation between number of personal contacts to which HIV status had been disclosed and medication adherence was not statistically significant, it was in the hypothesized direction. Findings from the mediation analysis demonstrated that the relationship between self disclosure and adherence was not significantly mediated by practical social support. Practical social support in this study was defi ned as directly encouraging the participant to keep up with their medications. It should be noted that social support in this study did not include other forms such as emotional and informational social support which may be more relevant in medication adhe rence within the context of chronic disease management like HIV care.
49 To the best of our knowledge, there have been no studies that have examine d the relationship between self disclosure of HIV status and medication adherence in this specific population. T here has bee n considerable research on self disclosure among African American women (Black and Miles, 2002; Serovich, ; Owens, 2002 ; Craft and Reed, 2012). Studies show that disclosure in this population is selective, and the reasons to disclose or not to disclose their HIV status are varied and depend on the category of people (family members, friends, partners, children), and/or perceived closeness to the person in question (Black and Miles, 2002; Sowell et al. 2003). While findings demonstrate that soci al support especially acceptance from family members is associated with improved medication adherence in this population, the relationship is likely not a direct association (Stirratt et al., 2006). In fact family has also been identified as a source of st ress (Owens, 2002). There is a need to explore other sources of support to determine which may more directly as well as significantly influence adherence behavior. Findings from our preliminary study suggest that peer support may have a huge impact on medi cation adherence in this population. Finding purpose/relevance Care giving role has been associated with improved adherence to medication among African American women living with HIV ( Gant and Welch, 2004 ; Edwards, 2006 ). Women who have young children ha ve reported a need to do whatever they can to live in order to provide care for their children. This need gives them a sense of relevance and serves as motivation to be adherent to their medication (Prosser, 2011). aith in God is the belief that God is sovereign and in control of all things (Musgrave, Allen and Allen, 2002). Therefore, life
50 in this population is viewed as being sustained by a divine power higher than but not necessarily in conflict with the Western s cience. Findings suggest that living with HIV in this population brings people closer to God While constituting a source of well being, by aiding in coping with medication side effects and HIV related stress, faith in God likely confers a sense of purpose in life along with a deep sense of morality which facilitates willingness to make life style changes such as substance abuse. Another context in which this population finds relevance is in engaging in activities to promote HIV awareness and education. In t he literature, there are no studies (to the best of our knowledge) that have assessed the relationship between involvement in HIV advocacy activities and medication adherence among African American women living with HIV. In a longitudinal qualitative study by Buseh and Stephen (2006), the objective was to explore the narratives of the HIV related experiences of African American women living with HIV (n=29) in order to understand their response to HIV associated stigma. For each participant, 10 interviews we re conducted over a 2 year period. Findings from this study showed that over time these women transited through different phases in their illness experience with regards to disclosing only at strategic times, redefining stigma as ignorance, and becoming culmination of their defiance of HIV related stigma. While adherence to medication was no t a focus area in this study, HIV related stigma has been identified as a major barrier to ART adherence (Lichtenstein, 2003). HIV advocacy has been identified as a coping strategy whereby the HIV positive woman chooses to share her experiences living with
51 the virus with the objective of conveying the challenges and associated burden of stigma, thereby persuading others to refrain from behaviors that put them at risk of infection. By resisting associated stigma through engagement in HIV advocacy, a sense of relevance and dignity is gained despite living with the virus (Paxton, 2002; Norris and DeMarco, 2005). Summary: In addition to finding relevance through care giving role and finding purpose through faith in God and we hypothesize that those involved in HIV advocacy are likely to be exposed to more HIV related information, have more perceived control over their illness, become more involved in their care and as a consequence, more adherent to their prescribed antiretroviral regi men. Provider patient rel ationship The relationship between patients and their provider in chronic disease management is considered an important factor in treatment outcomes In HIV care, adherence rates (Bakken et al. 2000; Roberts, 2002; Johnson et al. 2006; Schneider et al. 2004). Generally, women are more likely to be adherent to their treatment regimen when they perceive that the relationship they have with their health care providers is positive, they have confidence in the information being provided and they are provided opportunity to take control of their own care (Watkins Hayes et al. 2012.). In this review of literature, no studies examining the influence of provider patient relationship on ART adherence specifically among African American women were found. However, there have been studies on racial/ethnic differences in provider patient interactions in HIV care.
52 In the study by Saha et al. (2010), the objective was to determine whether trust in collected from 1,104 African American and 201 White pa tients attending an academic HIV clinic in an urban area. On a 0 10 scale, the level of trust that African Americans expressed in their providers (8.9) was lower than that of W hite patient s (9.4; p< 0.001). Compared to W hites (92%), African Americans wer e also less likely to receive ART though eligible (85%; p = 0.02); more likely to repo rt non adherence to ART in the three days prior to data collection (p = 0.005); and less likely to achieve viral suppression (p = 0.04). While there was no association be and ART adherence (adjusted OR, 0.40; 95% CI, 0.25 0.66). Beach et al. (2010) sought to investigate the possibility of racial differences in provider patient communication with respect to HIV care. In an assessment of provider and patient communication behavior in 354 clini cal encounters observed in four HIV treatment sites, coding using the Roter Interactive Analysis System was used to determine that providers were more verbally dominant in their interaction with African American patients compared to White patients. Based on their observations, the investigators report that this was largely attributed to the more passive patient role taken by African Americans. Ratings of provider communication were similar for both African American and White patients, and no racial differences were observed for other measures of communicatio n assessed. Summary: The provider patient interaction is critical in the delivery of patient centered care. Within the African American community, there is evidence that distrust of
53 the healthcare system still persists; with origins in their historical exp erience of racism and purposeful exposure to unethical experimentation like the Tuskegee Study, in addition to current experience of racial discr imination ( Dwayne, 2005 ; Thrasher et al. 2008 ). Women living w ith HIV from this community also have low socio e conomic status and have low educational attainment. This group may tend to adopt a more passive role in their care when they feel that the p rovider does not genuinely care and/or is not acting in their best interest. Su bstance abuse Substance abuse has b een associated with non adherence to antiretroviral medications among persons living with HIV (Turner et al. 2007) and has been found to predict non adherence behavior in African American women living with HIV (Tanya et al., 2004; Cohen et al., 2004; Ahd ieh Grant et al., 2005; Cook et al., 2007 ; Lazo et al., 2007 ). In on e study, data was collected over a three year period (July 1997 December 2000) as part of the Supplement to HIV and AIDS Surveillance (SHAS) project The objectives were to determine whether African American women living with HIV reported more crack cocaine use than women of other racial /ethnic backgrounds. The study also examined the association between self reported crack cocaine use and antiretroviral adherence (Tanya et al., 2004) The sample of women included in th e analysis was stratified into three categories characterized by history of drug use. These included preceding 5 year period. Out of a sample of 1655 women included in the study, 72% (1193) were African American, 18% (298) were White and 8% (129) were Hisp anic. Of the 376 women who self reported the use of crack cocaine, 81% (306) were African American. Further analysis on this populat ion found that those who reported drug use
54 were less likely to adhere to their antiretroviral regimen when compared to drug non users. Multivariate analysis was employed to control for potential confounders such as age, education, income level, marital sta tus, and number of antiretroviral drugs in the prescribed regimen. In the study by Ahdieh Grant et al ., 2005). The WIHS is a cohort study, prospectively following women living with HIV to observe the natural history of the disease. Following baseline data collection, participants were interviewed every 6 months. Ascertainment of viral load and CD4 count w ere determined by blood specimens, while HAART discontinuation was determined from the first report of not taking prescribed ART for at least 6 months. Calendar stratified analysis found that, African American women (compared to White women) and injection drug use were significantly associated with discontinuation of ART within the first calendar period. characteristics of HIV l eligibility (Cohen et al., 2004). Using a standardized interview based survey, data were collected on the following factors every 6 months demographics, medical history, psychosocial history, sexual history, tobacco use, alcohol use, illicit drug use a nd reasons for non adherence to medica tions. Use of HAART was by self report. Using analysis of variance, significant differences between those taking HAART, those not taking HAART though prescribed, and those not prescribed ART were tested. Chi square was used to determine the association between current illicit drug use and
55 HAART. Findings indicated that comparatively, a significantly lower proportion of African American women were taking HAART. Drug use (both past and current) was associated with not tak ing HAART. Women using illicit drugs were more than twice as likely to report not using HAART even when prescribed [OR = 2.1; 95% CI: 1.17 3.79]. Cook et al. (2007) investigated the associa tion between illicit drug use and depressive symptoms, and how th is affect ed antiretroviral medication use among w omen with HIV/AIDS Participants were drawn from six states (n = 1710) data collected by interviews conducted every six months. They found interactive effects between illicit drug use and depressive sympt oms with resulting non adherence to HAART. Another interesting find in this study was that while use of illicit drugs in the absence of depressive symptoms was significantly associated with non adherence, depressive symptoms without illicit drug use was n ot associated with non adherence. These findings demonstrate that there is an association among depression, substance abuse and medication adherence. They also found that lower HAART adherence was more prevalent among African American women as well as subs tance abuse and depression. In a study by Sharpe et al. (2004), interview data collected from 1655 HIV positive women was analyzed to investigate the effect of crack cocaine use on adherence to ART among African American women (Sharpe et al. 2004). Of t he 1655 participants, 1196 (72%) were African American. Of this number, 306 (26%) were crack cocaine users. Using logistic regression analysis to control for age and education in the African American sub sample, the investigators examined the effect of cra ck cocaine use on HIV medication adherence in this sub population (OR = 0.37; 95% CI = 0.24
56 0.56). Findings from a multivariate analysis showed that those who used crack cocaine and other illicit drugs were less likely to adhere to their prescribed ART reg imen compared to those who were non drug users (OR = 0.47; 95% CI = 0.36 0.68). Clearly, among women living with HIV, illicit drug use is more prevalent in African American women and poorer adherence to ART as a consequence of substance abuse Summary: Fin dings from these studies support the association between substance abuse and adherence to ART while also demonstrating that comparatively a significant proportion of African American women living with HIV are engaged in illicit drug use and alcohol consump tion. Depressive symptoms have also been linked to substance abuse (Cook et al. 2007). What these studies do not show is the underlying reason(s) why these women take to drugs. The assumption is that drug/ alcohol use is a predisposing factor in HIV infec tion in this population and that substance abuse is continued as a previously developed addictive behavior which then becomes a barrier in medication adherence. However, findings from our preliminary study suggest that those who take illicit substances and /or alcohol in this population are not all previous users. It is important therefore to (1.) determine the proportion of African American women living with HIV who start drug/alcohol use following HIV diagnosis and (2.) distinguish between substance abuse as an addiction and the adoption of substance abuse as a coping mechanism. Peer support Social support can be of different forms. In the literature, there are generally five broad categories of social support that are commonly cited. According to Glanz, Ri mer and Lewis (2002) social support categories include and are defined as follows 1. Instrumental support
57 2. Emotional support 3. Informational support 4. Appraisal support 5. *Affiliational support 2011) Most studies on social support for African American women typically found instrumental and emotional social support as the common types of support received from others usually family members, children, partners, friends, and other personal contacts withi n the community (Owens, 2003; Edwards, 2006). While these are necessary for the general wellbeing and health related quality of life for those living with HIV, the ir effect on medication adherence may be limited and indirect Although persons giving social support as mentioned above may be able to express empathy show concern, and offer tangible aid, they may not be in the position to i. offer useful information on antiretroviral medication use and expected outcomes ; ii. give advice about strategies to deal with the challenges associa ted with chronic medication use; or iii. make suggestions about ways to stay adherent to prescribed regimen. Peer based support has been shown to enhance health care in the management of chronic conditions (Dutcher et al. 2011). Benef its include facilitating access to health care services, providing social support, and increasing involvement in self care and self efficacy in performing specific health related tasks. The basis for using peers in promoting health related behavior is that the peers have similar characteristics and experiences with the target population, which strategically positions and enables them to provide much needed support and mentorship (Anderson, 1996; HRSA, 2005). In a qualitative explorative study by Dutcher et al. (2011), 23 in depth interviews
58 Education and Training Sites/Resource and Ev aluation Center (PETS/REC) initiative. Participants were persons living with HIV who had been trained to serve as peers to facilitate linkage to care and antiretroviral treatment. One of the focus areas of the act of their interaction with clients on and provider relationships. Eighteen (78%) out of the 23 participants were African American, and 15 (65%) were women. According to the participants, the principal factor that facilitated a connectedness with their clients and established credibility was the disclosure of their shared HIV status and related experiences. Issues directly and indirectly related to HIV care and ART wer needs. Activities described by the peers were categorized by type of social support ( T able 4 5 ). Informational support offered included helping clients navigate the health care system, education on medical inform ation about HIV and aiding comprehension/ clarification of medical information given by healthcare providers. However, the most frequent activity in this category was explaining to clients the critical role of medication adherence in their health care and outcomes. Peers also shared information on how to manage medication side effects. Instrumental support included reminding clients of appointment, providing transportation for clinic appointments, ordering medication refills and referrals to other resources such as substance abuse support. Participants reported that they employed a flexible approach; catering to each client based on need. With respect to medication adherence, peers reported giving different types of support based the continuum of their HIV illness experience. For example,
59 newly diagnosed clients were given emotional support to facilitate acceptance of status and informational suppor t to enable involvement in self care. Summary: Findings from these studies suggest that peer support may provide more relevant social support needed to enable adherence to ART. While social support from family, friends and community have been associated with improved medication adherence, the relationship is indirect and has more to do w ith acquiring better coping skills and im provement in psychological well being. Peer support however is shown to have direct impact on medication use behavior and provides an effective strategy for interventions to enhance medication adherence (Broadhead e t al. 2002; Raja, McKirnan and Glick, 2007). Summary of Part I Review Findings from the preliminary study and corroborated by findings in the literature suggest that the care expectations of this population and the dynamics of the provider patient relati el. The care expectations of African American wome n living with HIV are that the health care provider focuses on her as a whole being that needs medical, emotional and spiritual healing an d not exclusively on the disease and the physical symptomatology (Bailey, 1987); shows interest in her as a person; shows her respect as a deserving individual and is caring, empathic and sensitive to her concerns. If the care approach fails to meet the ex pectations of this population, adherence to prescribed treatment may be compromised. Apart from the holistic care from care providers, social support from significant persons in their lives and peer support from others living with HIV can significantly enh ance medication adherence in this population.
60 PART II Healthcare Provider Perspectives on Medication Adherence From the findings of the preliminary study with a sample of African American women living with HIV, other research questions emerged to inform this study. Based on the study objectives, a further search of literature was conducted. The aim of the literature search was to find studies that had similar objectives and review their findings. ves The search yielded ten studies that compared perceptions of care providers and patients living with HIV/AIDS. Two of the studies were surveys; one study adopted a mixed method approach with both surveys and focus groups. The remaining studies were qualitative studies using interviews and focus group discussions to collect data. The studies a re summarized in T able 2.1 Some of the studies reviewed focused on perceptions about HIV care (n = 5) while others assessed perceptions about medication adheren ce. Those investigating perceived barriers to care looked at entry into care, comparative studies focused on African Americans as a target population and only one study looked exclusively at women. In a study by Burns Tisdale et al. (1994) the objective was to explore best practices and barriers to outpatient HIV care. The investigators found that perceptions among patients differed by gender. While male patient partici pants recommended improvement in provider communication and reported needs such as transportation and flexibility in clinic appointment scheduling, women expressed such needs like being included in treatment decision making and having a care provider they were familiar with (Burns Tisdale, Duprat and Wells, 1994). Healthcare providers identified time
61 constraint in care delivery as a significant barrier. Women were more concerned with personal factors versus inter personal and structural barriers. In another study focused on adequacy of care, one of the needs that patients identified as important to them was the maintenance of confidentiality (Beedham and Wilson perspectives was on the inte gration of general and specialist care so that patients can receive both HIV and primary care in one setting (primary care). Patients were averse to this care approach. This was in contrast to the findings in the study by Laschinger et al., (2005). In this study patients expressed a preference for a care model where they received most services in the same setting. In both studies, patient perceived barriers to care included non medical resources such as housing and financial resources. The study by Schietin ger and Daniels (1996) assessed training needs of health care providers fro m both provider and patient pers pectives. In contrast to provider perception of medical training as paramount, patients believed that health care provider (HCP) training should incl ude inter personal skills, cultural competence and interview skills. Another study with contrasts between provider and patient perspectives was conducted recently by Bofill et al. (2013). In addition to perceived low self efficacy, patients identified prov ider and health care system factors as limitations while providers defined the patient role as including taking responsibility for medication adherence and cited lack of patient commitment as a limitation to achieving adherence. In this study, both provide rs and patients agreed that chronic management, substance addiction and the provider patient relationship were associated with HIV related health behaviors including entry into care, retention and medication adherence.
62 T here were contrasting views between providers (pharmacists) and patients in a study exploring challenges to medication adherence (Jallow et al., 2007). Issues that were considered significant to patients were not prioritized by pharmacists in the survey. These included difficulty in swallow ing pills, side effects like dry skin, concerns about drug toxicities, and particularly concerns about privacy when their medications were dispensed at the pharmacy. Abel and Painter (2003) looked exclusively at barriers to medication adherence in the fema le population living with HIV. There was concordance in provider and patient views about the provider patient relationship and simpler regimen as facilitators. However, most other factors identified by patients were different from those cited by providers. One major barrier from the provider perspective was the inundation of patients with information at the time of diagnosis. Patients in another study by Alfonso et al. (2009) Both providers and patients agr ee that medication related factors continue to be challenges for patients living with HIV. Dosing frequency was similarly cited by providers and patients in a study by Savini et al. (2003). In an all male patient population on multi drug rescue therapy (M DRT), a supportive relationship with provider and patient education were considered some of the facilitators (Alfonso et al., 2009). Patient education was said to enhance understanding of treatment, and thus help prepare patient for treatment initiation (A lfonso et al., 2009). In one study, patients and providers were required to rate adherence following a clinical trial (Cox, 2009). While providers tended to rate those with a job as more adherent, patients who rated themselves as adherent tended to be thos e with more
63 social support, suggesting that social support may be a more significant facilitator in medication adherence than financial security. Care Provider Perspectives In the literature, five studies that looked at provider perceptions of barriers t o care in patient populations living with HIV were found. Two of the studies had a mixture of providers (physicians, nurses, etc.), one was with pharmacists only; another with healthcare workers in South Africa and the fifth with a variety of stakeholders including non medical personnel, and this one was specific to African American women. The major barriers to care identified in one of the studies that exclusively assessed African American providers was access to care (specialty, primary and non clinica l services) and access to financial resources (Lee Ougu et al., 2003). Focus groups and surveys were used to determine provider perceptions on barriers to care and needs of Minority HIV positive patients. The study by Valverde and colleagues (2006) focused on identifying provider related characteristics that constituted barriers to care in HIV positive patients. Findings from this study suggest that there are racial/ ethnic and gender differences in provider perceptions of barriers to HIV care ( Table 3 2). The perception s of healthcare providers from m inority populations were more consistent with perceptions of patients from vulner able populations, including m inorities. Th is study focusing on African American women was more or less a needs assessment seek ing to provide insight into issues affecting these women, and was intended to inform culturally relevant interventions (both prevention and treatment) for this population (National Alliance of State and Territorial AIDS Directors, 2010). Stakeholders inclu ding persons living with HIV were invited to participate in focus groups conducted across six states. The objective was not
64 to compare perceptions between providers and patients but to identify key factors that made this population vulnerable to HIV and ba rriers to care for those infected. A major theme in this study was the complexity of the lives of members of the target population. Sub themes included sexual abuse, violence, substance use and mental health. The authors suggest ed that HIV interventions fo r this population should be targeted based on their unique context. In a study by Kibicho and Owczarzak (2011), 19 pharmacists were interviewed to assess their perceptions of barriers to antiretroviral adherence. The barriers identified were in three cate gories patient specific, treatment related, and structura l level factors. Again, issues such as substance abuse and mental health came up as barriers, suggesting that these problems are not unique to African American women. One of the studies reviewed w as conducted in South Africa where the context of the disease and the challenges are different (Coetzee, Kagee and Vermeulen, 2011). However, transportation was again reported as a major structural barrier; demonstrating that universally, transportation is a key facilitator of access to HIV care. Care Gaps: Current Practice versus the Ideal Two studies assessed gaps between current care practices and what should actually occur in practice. In the study by Rief and colleagues (2003), HIV case managers were surveyed to assess their adherence to the ir counseling practices. Most respondents agreed that as part of their job, they were required to counsel their clients on medication adherence. However their counseling activities centered more on monitoring of medication use. About a third of respondents also acknowledged their perceived inadequacy in medication adherence skills.
65 activities they rep orted adherence to providing the se activities (Park Wyllie, Kam and Bayoumi, 2009). For a large proportion, endorsing an activity did not readily tran slate to providing the said support activity. Providers identified barriers such as lack of time in fulfilling support activities Summary of Part II Review about factors that affect HIV care and medication adherence are not always similar. Efforts by the healthcare system to focus on problems perceived as significant barriers to care may not yield optimal results if patient perceived barriers are not taken into account. Wh ile the re are challenges that most persons living with HIV generally face (like transportation), there are barriers that are specific to sub populations based on their history, culture, social context and even gender. In the studies reviewed, health care providers as professionals are generally more perceptive of factors that are more structural than personal to the patient. Again, when providers identify similar problems as patients, the order of importance may not be the same as seen in the study by Jall ow et al. (2007). In implementing interventions, if patient perspectives are not taken into account, efforts may be channeled to areas of perspectives capture fact ors that patients may not be aware limit their ability to access care (for example access to financial resources), and if these are not addressed, treatment goals may not be achieved
66 Table 2 1. ectives Author(s) Date Aims Methods Results Burns Tisdale, Duprat and Wells 1994 To explore best practices and barriers to patient care in an outpatient setting 3 Focus group discussions (FGDs): Men living with HIV, women living with HIV, healthcare providers Men: Commendations: [1.] Provider commitment to patient; [2.] sensitivity to and awareness of issues relevant to patient; and [3.] respect for patient Recommendations: [1.] Improvement in provider patient communication [2.] transportation; and [3.] flexibility in scheduling appointments [1.] inclusion in treatment decision making; [2.] familiar care provider; and Integration of gynecological and primary care. Time constraint in care delivery Beedham and Wilson Barnett 1995 views on adequacy of care compared to views of care providers Interviews of clients (n=85) and health care providers Patient perceptions [1.] appreciation/ satisfaction with care; financial lack and social deprivation as barrier; [3. Need for better housing; [4.] Confidentiality of patient records; and [5.] perceived prejudice/ discrimination Major contrast Clients: Keeping general and specialty care separate to maintain confidentiality and receive expert care. Providers: Integrating general and specialty care
67 Table 2 1. Continued Author(s) Date Aims Methods Results Schietinger and Daniels 1996 To assess the training needs of healthcare providers (HCPs) in HIV service organizations and public health clinics; and the needs of PLWHIV receiving care from HCPs Interviews conducted with select key informants among HCPs and a wide range of PLWHIVs. HCPs perception of training needs: Medical information as primary tr aining need. Patient perception of training needs: In addition inter personal skills, cultural competence, sensitivity to substance abuse, establishing rapport, maintaining confidentiality, interview skills Abel, and Painter 2003 To explore factors that influence antiretroviral medication adherence for women living with HIV/AIDS from patient and HCP perspectives Two focus groups for patients (n=6) and HCPs (n=6) respectively Patient perceptions: Facilitators: 1. Belief in treatment efficacy; 2. Me mory prompts; 3. Provider patient communication; and 4. Simpler regimen. Barriers: 1. Emotional trauma; 2. Perceived stigma; 3. Side effects; and 4. Changes in regimen. HCP perceptions: Facilitators: 1. Provider provider relationship; 2. Tailored patient education/ individualized care; and 3. Patient involvement in decision making Barriers: 1. Complexity of regimen; 2. Lack of patient involvement in care related decision h information at diagnosis causing patient to tune out and not remember details on treatment initiation ( perceived as major barrier ).
68 Table 2 1. Continued Author(s) Date Aims Methods Results Savini, James and DiGuglielmo 2003 To determine 1)if differ from the perceptions of clinicians studied in the Gallant and Block study (1998); differ from the perceptions of the patient population in the Gallant and Block study; and 3)if Gallant and Block study currently exist. Survey of 15 clinicians (physicians, HIV nurses, nurse practitioners) Survey of patients (n=100) Present clinicians complexity of medication sche dule dosing frequency large pill burden Current patients Side effects dosing frequency Laschinger, Van Manen, Stevenson and Fothergill Bourbonnais 2005 To describe and compare the perceptions of ideal and current care practices of health care pro viders and PLWHIV 8 Focus group discussions (of 6 8 respondents) for PLWHIV and 7 FGDs for care providers Common themes across FGDs 1)Patient centered and holistic care [communication, collaboration, compassion, respect, support] 2) Access to care access to medications and treatments follow up and monitoring of care Patient education Resources [financial, housing, transportation] stop shopping having as many services as possible in one setting
69 Table 2 1. Continued Author(s) Date Aims Methods Results Jallow, Klvemark Sporrong, Walther Jallow, Persson, Hellgren, Ericsson 2007 1)To identify major challenges experienced by pharmacy staff in HIV care delivery; 2) to identify pharmacy staff perceptions of patient related concern s with ART; and 3) to compare pharmacy staff challenges patients experience associated with ART. Administration of questionnaires to both pharmacy staff (n=70) and patients (n=195); using the Problem detection study approach Pharmacy staff did not recognize and prioritize as barriers some of the challenges patients indicated as important including difficulty in swallowing pills, dry skin from medication, concerns about toxicity of medication, worry about public expo sure of status and thus disturbed by display of medication on pharmacy counter. Alfonso, Toulson, Bermbach, Erskine, Montaner 2009 To describe the experience of PLWHIV on multi drug rescue therapy [MDRT] and their HCPs including perceptions of challenges and facilitators to adherence; and provider and patient roles in the care process Interviews with 12 patients (all male volunteers; 11 Caucasian and 1 Asian) and 7 HCPs (one physician, one nurse, one pharmacist, two social workers, and one receptionist) Emerging themes: [1.] Treatment factors (side effects, pill burden, toxicities, co morbidities, outcome expectancies) [2.] supportive relationship (respect, understanding, collaboration); [3.] information exchange, ( patient perception redundancy) and [4.] readiness for treatment (preparedness including adequate education and understanding of treatment and willingness to commit to adherence)
70 Table 2 1. Continued Author(s) Date Aims Methods Results Cox 2009 To evaluate the PLWHIV and medication adherence and clinic visit attendance in association with lifestyle, psychosocial and health belief model (HBM) variables. Data from an AIDS clinical trial was analyzed. Baseline information collected by questionnaire and patient self report. After 12 months, adherence with follow up visits associated with older age. adherence significantly associated with being older, being employed and enrolled in clinical trial for altruistic reasons. significantly associated with being older, having family member or friend living with HIV, and considering enrollment in study worth while Bofill, Lopez, Dorigo, Bordato, Luca s, Cabanillas, Sued, Cahn, Cassetti, Weiss, and Jones 2013 To explore and identify factors associated with patient entry into and retention in care (including adherence) in public and private Key informant interviews (n=12) and FGDs (n=4) Contrasting perceptions Patients: 1. Low self efficacy; 2. Fear and concerns about HIV; 3. lack of provider involvement in treatment; 4. Health care system limitations Provider: Provider as decision maker an d patient as responsible for non adherence. 1. Lack of patient commitment; and medication side effects. Concordance: Chronic illness, substance addiction, and provider patient relationship (trust, honesty, communication)
71 Table 2 2. S tudies on care provider per ceptions Author(s) Date Aims Methods Results Valverde, Waldrop Valverde, Anderson Mahoney, Loughlin, Del Rion, Metsch and Gardner 2006 To assess medical perceptions of the barriers to HIV care and identify associated provider characteristics Survey (by mail) of HIV medical care providers in Atlanta, Baltimore, Los Angeles, and Miami [physicians, physician assistants, nurse practitioners] (n=420) Racial/ethnic differences in perceptions: Unavailability of childcare, cl inic location/ services inconvenient, and unfriendly Healthcare system considered more important barriers by African American and Hispanic providers compared to Caucasian providers and consistent with perceptions of PLWHIV from disadvantaged populations. Mental health problems, transportation, and clinic location/ services inconvenient considered more important by female providers compared to male counterparts National Alliance of State and Territorial AIDS Directors 2010 To provide some perspective on issues and suggestions from persons living with and affected by HIV for the consideration by health departments in the design targeting and implementation of culturally relevant programs for African American women Semi structured focus group interviews of stakeholders in six states; minimum of 3 FGDs per state of health department staff, community service providers or consumers of service respectively. Group size : 3 18participants Major themes and Findings: history, culture, faith and family sexuality and sexual communication impact of abuse and violence stigma and disclosure dependency perceived risk substance use and mental health 2. Considerations and strategies from consumers and providers Holistic and support group Affordable housing Transportation Prevention messages, media and social marketing comprehensive sex ed. provider education Community collaborations and partnerships (also faith based organizations) Targeted interventions Advocacy Involvement of target group in decision makin g in community planning groups
72 Table 2 2. Continued Author(s) Date Aims Methods Results Kibicho, and Owczarzak 2011 perceptions of barriers to medication adherence among PLWHIV and describe strategies to enhance medication adherence in this patient population In depth interviews using a semi structured guide (n=19 Barriers identified Patient s pecific factors: cognitive, health literacy related, lack of social support, psychological, mental health, and substance abuse Treatment related factors : adverse effects, intolerable medications, polypharmacy, unresolved medication related issues. Structu ral level factors: provider patient relationship, depersonalized health care system Coetzee, Kagee, and Vermeulen 2011 To examine the major structural barriers to ART adherence from perspective in South Africa Main barrier: Stigma Others: Willful non adherence to receive disability benefits tied to low CD4 count; transportation, food security Lee Ougu, Boekeloo, Thompson, Funny, Jackson, ShuTangyle, and McNeil 2003 of 1)the causes of clinical outcomes in Minority HIV infected patients, 2) barriers to effective HIV care delivery, and 3) priority training and technical Focus group discussions between health professionals (nurses/nurse practitioners, ph ysicians, physician assistants, dentists and clinical pharmacists; n=266) and mailed surveys (to primary medical care organization; n=28) FGDs: Emerging themes were: provider cultural competency, access to financial linkages, and access to comprehensi ve care services Surveys: funding/ financial resources access to specialty referrals accessibility of primary care access to non clinical
73 Table 2 3. C Author(s) Date Aims Methods Results Reif, Smith, Golin 2003 To examine adherence related practices and attitudes of case managers to their medication adherence counseling practices. Survey returned by 94 out of 111 administered. Majority (65%) reported discussing medications with almost all their clients Counseling on adherence related behavior most frequently provided was focused more on medication use monitoring than on instruction on medication use. Most respondents (77%) believed that medication adherence counseling was part of their role, but a goo d proportion (36%)did not perceive themselves as having adequate skills to do so. Park Wyllie, Kam, Bayoumi 2009 To assess the concordance between clinician perspectives on the importance of support activities to antiretroviral self reported actual adherence to these activities in practice. Survey (84 item) mailed to physicians, pharmacists and nurses highly specialized in and providing HIV care. Respondents asked to rate 30mtypes of adherence support support activities on a 5 p oint scale. (n=169; response rate of 56%) Respondents agreed that most adherence support activities listed should be provided to patients (24 out of 30 endorsed by the majority). Adherence gap (31% 75%) determined by proportion of healthcare providers not providing adherence support activity even though they endorse it as necessary for the patient. Barriers identified: 1. Lack of time (32%); 2. Unavailability of healthcare professionals to refer patients to for adherence support (25%); and 3. insufficien t reimbursement (12%).
74 CHAPTER 3 METHODS This chapter includes a review of the epistemology, the theoretical perspective taken and the methodology governing the methods adopted in the research design. The methods used in conducting the research, the criteria for evaluating study rigor, and steps taken to protect human subjects are described. Also included is a reflexivity note, Methodological Approach Grounded T heory and Thematic Analysis T o achieve the study objective, qualitative research methods were employed The methodological approach chosen for this study was Grounded Theory This approach was considered appropriate given the purpose of the study and the specific objectives addressed. Grounded theory is a qualitative method of inquiry useful in investigating social phenomena. It was developed in the late 1960s (Glaser and Strauss, 1967). As a qualitative research method, the focus of grounded theory is the creation of conceptual frameworks or theories based on inductive analysis of data. The intent of this investigative process is to go beyond merely describing a phenomenon, to gaining a more conceptual or theoretical understanding (Charmaz, 2006). Using th is and/or experiences as captured in the data collected. However, for the scope of work covered in this dissertation research and based on the specific study objectives ad dressed and reported here, data analysis was mostly at the thematic analytical phase. Thematic analysis is a process that is implicit in most qualitative data analysis including grounded theory (Boyatzis, 1998). It involves the coding and categorization of qualitative data with the purpose of identifying patterns and developing themes.
75 The model generated from provider perceptions was based on the major categories and themes identified through the thematic analysis. At this point in the research, it is considered a preliminary conceptual model but provides a general framework that identifies the numerous issues associated with linka ge to care and medication adherence in the target population based on care provider perceptions. Further conceptual data analysis will focus on different parts of this model. Ultimately, the long term goal of the research is the emergence of theories and/o r theoretical models that are more explanatory than descriptive. Characteristic Features of Grounded T heory There are key characteristics in the grounded theory methodology. These include 1. The simultaneous collection of data and data analysis: This is an iterative research design whereby data is collected, analyzed and the findings inform subsequent data collection. 2. The use of codes and categories developed from the data: To code and categorize data, the data if first explored and the codes developed f rom 3. The development of theory to explain behavior or process under investigation: The ultimate goal in using gr ounded theory is the development of theory. 4. The use of memos or analytic notes to build theory: Memo writing is an integral part of the analytical process and facilitates the construction of theory. 5. Theoretical sampling of participants: Concurrent data a nalysis reveals gaps and informs the choice of other participants to interview for further insight. 6. An initial brief literature review (for sensitization in area of interest) followed later by a broader review of literature specific to the concepts identi fied in the data. 7. The constant comparison of the data throughout the analytic process: This is the core principle of data analysis in grounded theory. Themes, categories and theoretical concepts emerging are compared with fresh data for similarities and differences. (Glaser and Strauss, 1967; Charmaz, 2004)
76 Epistemological position: Social Constructionism and Symbolic Interaction reality, whatever it is understood to be. In short claims about how what is assumed to research; governing the methodological approach and the methods adopted. The premise of grounded theory as a methodology is soci al constructionism and symbolic interactionism. These are theoretical perspectives that are based on the following assumptions i. That what people view as real ( i.e. their social realities) are created by individual and collective actions; and ii. That [thes e] realities are constructed through the interactions between meanings and actions (Charmaz, 2006). Based on these perspectives a theory generated using this approach (grounded theory) can be described as an interpretative construction of reality. This ma kes the approach particularly useful for investigating complex social constructs or phenomenon. Again, this is especially relevant to this study considering the complex nature of care seeking and medication adherence behavior. Theoretical P erspective Over time, m ultiple versions of grounded theory as a methodology have evolved some adhering to a pragmatist research approach, and others taking on a more positivist approach (Charmaz, 2006; Glaser and Strauss, 1967). Pragmatism is a philosophical outlook t hat approaches problem solving in a logical and reasonable way based on specific situations rather than theories or ideologies. The positivism paradigm verifiable and observa ble measurements.
77 With further evolution of the grounded theory methodology, Strauss and Charmaz adopted a constructivist approach; the underlying assumption being that theories are not discoveries in the data, but are constructions based on the shared i context (Charmaz, 2006). Constructivist grounded theory is therefore an interpretative ction of meaning and action by exploring their perception of phenomena relative to their broader social context (Charmaz, 2006). This study takes on a constructivist approach in the application of grounded theory. Grounded theory is particularly useful whe n the purpose of the investigation is the understanding of social processes. Thus, this approach was considered suitable in exploring the perspectives and experiences of health care providers who interact with African American women living with HIV/AID S to contribute further insight into their care seeking and adherence behaviors. Grounded Theory: Strengths and Limitations Limitations The relative subjectivity of the data analysis and interpretation limits the use of grounded theory and indeed any type of qualitative method in research where the purpose is to establish causality. Therefore, grounded theory is not suitable nor is it recommended for studies that seek to confirm or refute hypothesized causal relationships. Quantitative methods such as randomiz ed controlled trials and observational studies are more appropriate in such cases. In this study, the efficacy of antiretroviral therapy has already been established and medication adherence shown to be positively correlated with HIV related health outcome s. The problem is that despite
78 these advances in medical treatment, a large proportion of persons in this population are either not in care or have difficulty staying on their treatment, and the question is A more qual itative method of inquiry is therefore appropriate. Reliability and validity of the approaches and findings are difficult to establish. However, researchers using grounded theory can enhance rigor in their study and trustw orthiness of their findings by ensuring credibility, confirmability, dependability and transferability (discussed in the section on scientific rigor/integrity). The sampling method and relatively small sample size characteristic of this method though appr opriate for the study purpose limits the generalizability of findings to other populations However, hypothesis can be generated and tested with quantitative methods to confirm applicability beyond the locale of the study sample. Because of the inductive process of data analysis, it is difficult to avoid bias introduced by the researcher. To minimize this, researchers are encouraged to write a reflexivity statement detailing all their assumptions about the phenomena under investiga tion and also write extensive analytical notes (memos) to aid in differentiating between personal perceptions and what the data actually reflects. Peer review by colleagues and experts in qualitative research; and verification of findings by members of the target population can also help to minimize bias. The methods of data collection and data analysis can be time consuming and the amount of data can be overwhelming. However, there is a variety of software available that are useful in sorting and organizi ng data to make it easier to handle and analyze.
79 The presentation of findings from a study using grounded theory can be quite difficult because of the qualitative nature. The challenge is to translate findings into a form that is useful for application (ex ample in practice or for an intervention). Strengths Grounded theory is useful for gaining valuable insight in areas where much is not known. As with most social processes and behavior, these change as contexts change, thus even when an area has been stud ied, changing contexts may lead to new insights emerging since research is conducted without a priori assumptions. The research procedure is rigorous and systematic. When well done, the analytical steps underlying construction of theory is usually well lai d out. This enhances the trustworthiness of the findings. The method of data collection (in depth interviews using open ended questions and experiences. The depth of i nformation that can be obtained by using this method is usually not obtainable with quantitative methods or less rigorous qualitative methods. and of complex behavior like medication adherence. Res earch Strategy Study Objectives The care process following HIV diagnosis starts with linkage to a facility that provides HIV clinical care. Appropriate evaluation then determines initiation of antiretroviral therapy. The treatment outcome thereafter is lar gely a result of the retention in care. Treatmen t outcome is also likely to rei nforce adherence behavior. The
80 preliminary study for this dissertation explored the perceptions and experiences of African American women living with HIV and how the factors identified influence linkage to care and antiretroviral medication adherence. The illness perception and illness experience of African American women living with HIV were shown to have significant influence on initial response to HIV diagnosis and subsequently adherence to antiretroviral treatment. The conceptual model derived also identified possible mechanisms by which various factors p atient related, provider related and str uctural (healthcare system) interact to influence linkage to HIV care and medication adherence behavior. Building on the preliminary study, this doctoral dissertation focused on deriving a comparative conceptual model based on health care provider perce ptions and experiences on factors that influence linkage to care and medication adherence among African American women living with HIV/AIDS. The purpose of the study was to determine the concordance between patient perceived factors and provider perceived factors that determine early linkage to HIV care and influence medication adherence in this population. For this study, health care providers referred to physicians, pharmacists, nurses and case managers. Research findings suggest that there is lack of con cordance betwe en healthcare adherence and what actually happens in practice (Park Wyllie, Kam and Bayoumi, 2009; Rief, Smith, and Golin, 2003). This dissertation further assessed health care practices that facilitate adherence behavior in the target population.
81 The study objectives were 1. To derive a comparative model of medication adherence behavior of African American women living with HIV/AIDS based on health care provider perceptions and experiences. 2. To compare patient perceptions and health care provider perceptions of factors that help to facilitate early linkage of African American wom en newly diagnosed with HIV to care. 3. To compare patient perceptions and health care provider perceptions of factors that influence medication adherence behavior of African American women living with HIV/AIDS. 4. To explore differences between health care pr ovider perceptions of medication adherence needs of African American women living with HIV/AIDS and current HIV care practices. Eligibility/Inclusion Criteria To be included in the study, the participant had to be a physician, nurse, pharmacist, or HIV cas e manager ; currently providing/ have provided care to clients living with HIV/AIDS for at least 6 months within the previous one year period ; currently providing/ have provided care to at least five (5) African American women living with HIV/AIDS within the previous one year period ; and currently working / have worked in a health facility offering HIV services and located within area 3/13 (North Central Florida) within the previous one year period Recruitment and Sampling Florida as a state is divided into 15 geographical regions. With regards to HIV/AIDS care delivery, North Central Florida is covered by area s 3 and 13 (known as area 3/13. This consists of 15 counties that are mostly rural and semi rural based on their population density ( F igure 3 1 and T able 3 1 ). The counties include Alachua, Bradford, Citrus, Columbia, Dixie, Gilchrist, Hamilton, Lafayette, Lake, Levy, Marion, Putnam, Sumter, Suwannee and Union counties. Area 3/13 covers approximately 20
82 area (Well Florida, 2010). HIV health care providers (physicians, pharmacists, nurses and case managers) working within area 3/13 (i.e. North Central Florida), who met the eligibility criteria were identified and contacted by phone and/or email and invited to participate in the study. In selecting p articipants care was taken to inc lude a diverse sample in terms of type of provider and practice setting This sampling technique is known as purposeful sampling, and i nvolves the selection of participants using pre determined specific characteristics. Patton (2002) describes different variations of purposeful sampling. For this study, a snow balling technique was used. Even though participants from different types of ca re facilities (academic health center, county health department, private clinics, non governmental agencies) were targeted for inclusion, actual participation was also dependent on availability and willingness on the part of the care providers. Following t he initial interviews, participants were asked to refer the investigator to colleagues who met that subsequent participants meet more specific criteria based on gaps in emerging concepts and categories, and this was also done through snow balling. Data Collection The individual interviews were in depth using a semi structured interview guide derived from the preliminary findings ( Appendix II). For each participant, a c onvenient time and venue of choice was set up. A copy of the informed consent was sent via email to the participants prior to the interview. This allowed them to read through and understand the purpose of the study and what was required of them, while savi ng time spent to conduct the actual interview. A hard copy was administered and duly signed
83 before each interview. A day before the interview, an email reminder was sent to each participant. The response from the participant served as a confirmation of th e The interviews were conducted in a private area to ensure confidentiality. All the interviews were audio recorded with written consent from participants. To collect demographic information, a pre a pproved form was given to each participant to check off the options that were most applicable to them ( Appendix III). For the interviews, open ended questions were used and probes for clarification and further investigation ( Appendix II). Based on emerging categories from initial interviews, other questions evolved as the interviews progressed (for example, questions about mental health, substance abuse, patient communication, etc.). Interviews were conducted until no new properties of the emerging categor ies were forthcoming from subsequent interviews. The saturation point was reached after 21 interviews had been conducted. Before and after each interview, field notes were written by the researcher. The aim of this was to help put data from participants in context and capture non verbal communication perceived to be relevant to the study. Also included in the field notes interviewing other participants. Following each interview, the researcher intentionally continued to chat with the participant (except in cases where participants were short of time and had to return to their professional duties). Participants often continued talking after the recording was stopped, and these post interview chats were equally enlightening. Post interview information was also written down as field notes and often provided points included for further inquiry in subsequent interviews.
84 All the audio recorded interviews were transcribed verbatim. Trans cription was done by Landmark Associates, Inc., a professional transcription agency, approved as a vendor by the University of Florida. Audio recordings and transcripts were uploaded to a secure website. The transcripts were spot checked to verify accuracy of transcription. Errors were minimal in all the transcripts (error rate less than 1%). Data Analysis Data analysis started once the first interview was conducted and continued throughout the process of data collection. Software developed for qualitative data management and analysis the MAXQDA 11 (Release 11.0.2) was used to code transcripts, sort and organize data for ease in analysis. Coding and categorization : Each transcript was imported into the MAXQDA portal for coding and memo writing. An initia l line upon line open coding was done to develop codes used in subsequent transcripts. O ver 100 codes were developed from the initial line by line and phrase by phrase coding of the first transcripts. Code development and refinement continued as new inform ation in subsequent transcripts emerged and newer codes compared to previously developed codes. Memos were written alongside codes as they were developed to explain the premise and meaning of each code ( Figure 3 2 ). The initial coding was followed by more focused coding in subsequent transcripts; resulting in further revision and refining to a total of forty seven ); ere all integrated into the code ( T able 3 1). More conceptual coding led to the generation of themes. For example, from sub access) came the themes availability, affordability, an d accessibility. From the
85 synthesis of the refined codes and emerging themes, eight major categories were identified. Essentially the themes were sorted and those addressing a similar area were grouped into a category. These categories then formed the buil ding blocks for the conceptual model (study objective 1) Axial coding was used to establish the links between codes and later in the analysis, themes and categories (Strauss and Corbin, 1999). Intersections of codes (indicated by excerpts from transcript s that were assigned more than one code) provided clues to the links between codes and between categories. For example some excerpts of the data were coded and also suggesting that language may be a barrier for patients who h ave low literacy levels. Associations that were made between themes and categories were also verified by subsequent interviews and later by member checks (showing findings to participants for validation). In building the model, connecting unidirectional arrows were used to indicate a linear association; implying a transition from one point to another (for example transition experience). Bidirectional arrows were used where transitions were perceived as possibly going either way. For example providers talked about some patients in the target population going back into some state of denial at some point even after having accepted their HIV status; hence transition between deni al and acceptance was depicted with a bidirectional arrow. Links without arrows were used to indicate an association. Further data analysis and quantitative research will be conducted to determine the nature of some of these associations (mediating, intera However, this is beyond the scope of this dissertation
86 The conceptual model derived was compared to the model previously developed using a similar analytical technique in the preliminary study. Using the themes and categories, similariti es and differences were identified with regards to factors influencing linkage to care and medication adherence in the population of African American women living with HIV/AIDS (study objectives 2 and 3) Data (specifically quotes) for similar themes under each category from the respective models were compared and contrasting details identified. For example, while substance abuse was a theme similar to both models, provider perceptions centered round the addiction as both a predisposing factor in acquiring HIV and a continuing behavior that becomes a barrier to medication adherence. However, patient perspectives provide additional insight as some persons in the target population who were non users (of illicit substances) prior to HIV diagnosis turned to subs tance abuse as a coping mechanism. In comparing categories between models, gaps were also identified for example a mediating factor perceived by care providers as relatively prevalent and significant in impacting adherence behavior was mental health. How ever, this was not specifically identified by patients as a factor in adherence. Towards the end of each interview, providers were asked about the efficiency of the health care system in providing care to the target population. Further probes included que stions about current care processes that were perceived as hindering rather than enhancing care for this population and recommendations that could better determine provide with HIV care delivery and the perceived care needs of the target population (study
87 objective 4) The responses were reviewed and specific issues and corresponding recommendations identi fied. All gaps identified are presented in the results section. Integrity and Protection of Human Subjects Evaluation Criteria The criteria set forth by Guba and Lincoln (1989) for eva luating the credibil ity, transferability, dependability quantitative research internal validity, external validity (generalizability), reliability and objectivity. Similar to establishing internal validity in quantitative research, c redibility is their realities and the representations of those re alities by the researcher(s) (Lincoln and Guba, 1989). To establish credibility, the researcher seeks to build a relationship with the participants in order to be well acquainted with and gain appreciable insight of their context. In this study, this was done by making previous conta ct with participants through phone calls and emails, and also engaging in non research related other relevant information prior to the interview. To ensure that participant perspectives were fully explored and captured, the length of the interviews was strictly Usually, additional interviews to clarify data may be conducted as required, but this was not nec essary in this study. At regular intervals in the research process, de identified data may be presented to colleagues well acquainted with qualitative research
88 conclusions The findings were reviewed by a qualitative researcher with expertise in grounded theory methodology. The reviewer evaluated the thematic analysis and categorization of codes and themes. The expert review also included the assessment of conceptual model to the findings fro m the data analysis. The review resulted in a restructuring of the model to better reflect the study findings In addition a proportion of the participants (n =5) in the study were presented with the findings for confir mation that these truly captured their perceptions and experiences (member check). All the five participants validated the findings as truly representative. Transferability refers to the applicability of findings to other contexts; similar to generalizab ility in quantitative research. This is established by using rich, thick descriptions of the data and the data gathering process detailed interview transcriptions, extensive contextual field notes, and comprehensive demographic information (Cohen and Cra btree, 2006). In chapter four, findings include analytical notes and several sample quotes with the code number of the participant inserted at the end of each quote. Included in A ppendix D, are profiles of care provider participants (with no personal iden tifiers) to help put the quotes in co ntext since they are different types of care providers. Also included in chapters one and four are tables summarizing the demographic characteristics of patient and care provider participants respectively. This is to e nable other researchers determine the applicability of the findings to other contexts. The stability and consistency of data ( dependability) is demonstrated by the memos describing the processes of code generation, emergence of categories, and theory build ing as enabled by theoretical sampling. This provides an auditable record of
89 how the theory was constructed. In this study, memo writing was continuous throughout the coding and analytical process. Some of these analytical not es have been incorporated into T ables 4 2 4 9 in chapter four describing the provider perceptions as interpreted from the data analysis. Confirmability which is concerned with the degree of neutrality of the data, seeks to establish that the findings are rooted in the experiences an d/or perceptions of the participants and not based on the perceptions, preconceptions and/or biases of the researcher. This can be ensured by the previously mentioned periodic peer review and demonstrated by the audit trail established by the memo writing (Cohen and Crabtree, 2006). In addition to memo writing in this study, findings from previous research were used to verify the emerging theory (triangulation) and confirm that findings are not biases were explicitly influence on data synthesis and analysis. Protection of Human Subjects Data s ources Data were collected from study participants as audio recordings and paper based forms used for demographic information including race/ethnicity, age category, gender, professional experience and agency employed by. No biological samples such as blood, body fluids, or tissues were collected. All transcripts were de identified by removing identifying information such as names. However, the audio recordings are considered personal identifiers and steps have been taken to ensure that they are not accessible to non inves tigators in this study. In accordance with University of Florida policy, all the audio recordings will be destroyed after the close of the study and all research findings
90 have been published T hese, alongside the transcripts are stored in a password protec ted and encrypted computer and will be destroyed five years after the close of the study. The paper based materials do not contain any personal identifiers, but these are also kept locked in a secure cabinet. The raw transcripts are accessible only to the listed study investigators. Again, only persons with certified training in the protection of human subjects and privacy were allowed to view the raw data (full transcripts). Protection from potential risks All the research procedures were duly approved by the University of Florida IRB 02 (Behavioral/ non medical Institutional Review Board) before participant recruitment and other research procedures were started. Data storage : Care was taken to ensure that all research materials were de identified. Demo graphic sheets and transcripts were assigned a unique study number to link the data. The digital audio recordings were obtained with a digital recorder kept computer where they were finally stored. Once the recording was transferred to the computer, it was erase d from the digital recorder. Patient and provider confidentiality : As a health care provider, discussion of issues about patients especially persons living with HIV/ AIDS without disclosing any personal information was not really a challenge since professional ethics embody patient confidentiality. The challenge was in not mentioning names of other care providers. Participants were cautioned before the interview to ref rain from mentioning any names. Efforts were made during the interviews to keep the conversation general and even when specific examples of patients were given, participants were careful to leave out names or simply use pseudo names.
91 Psychological harm: In anticipation that care providers may feel uncomfortable discussing their experiences with their clients or emotionally stressed remembering care encounters that ended in mortality, eligible participants were informed prior to the interview that they are a t liberty to decline participation at any time and were under no obligat ion to respond to any questions Potential benefits to participants There was no direct benefit to the research participants. However as stakeholders in HIV care, participants experienced a sense of altruism in being able to contribute to efforts aimed at gaining insight into an issue which understanding may result in better health outcomes for this sub population of their patients. Identifying patient barriers and facilitators and understanding how these influence adherence behavior in this population could potentially inform intervention strategies to enhance medication adherence and consequently HIV related morbidity and mortality. Study Significance To the best of our knowled ge, there i s no other study that has compared seeking and medication adherence behaviors specific to African American women living with HIV/AIDS. In addition no other study has determined their concordance or determined gaps between actual practice and perceived patient needs for this population. It is important that providers are aware of patient perceived barriers to medication adherence to enable them deliver patient centered care as well as provide the appropriate tools to patients to overcome their medication related challenges. This study will foster better understanding of the medication adherence needs of African American women living with HIV/AIDS and enable health care professionals
92 (physicians, pharmacists, nurses and case managers) to provide culturally competent care to the target population and ultimately contribute to eliminating HIV related health disparities. The objective of the re flexivity note is to minimize personal bias in the study. It decisions and choices made that may have any impact in conducting the research (Mruck and Breuer, 2003, p.3). initial interactions with persons living with HIV (PLWHIVs) were through my Youth AIDS Program), had been working with youth populations to educate them on HIV prevention He later worked as a state coordinator to implement a national comprehensive response to HIV/AIDS strategic plan. All those living with HIV that I met were involved in HIV advocacy activities they were very knowledgeable about their condition, were gai nfully employed and lived relatively healthy lives. My perception of living with HIV was shaped by these interactions. I was trained as a pharmacist, so I having HIV as just another chronic disease condition that anybody could effectively manage and still live a productive life. The only things I considered as barriers were the associated stigma and the high cost of the medication. In 2009, a few months before I came to start my graduate studies, I had the opportunity to work as a volunteer pharmacist in a rural HIV clinic funded by the United States President's Emergency Plan for AIDS Relief ( PEPFAR). The services and medications we re free and patients were simply required to enroll in care and come for
93 follow up visits and medication refills. As I worked at this care site, I began to observe the loss to follow up and the common late refills. At first I was perplexed people were be ing offered free treatment and medications and yet they were not taking advantage of this aid to stay healthy. At first, I was hard on the patients eduat ing them on the reasons they needed to come for follow up visits as scheduled and more importantly ke ep up with their prescribed medications. Then I began to listen to them. From the stories that these patients told me, I began to appreciate them as more than an ID number in a register that I needed to check off as having collected their medication s I l understand that there was a larger context to their lives than the HIV they were infected with There were other dimensions of their lives social, economic, cultural, etc. that though un related to the HIV infection, significantly impacted their decisions and behaviors related to having the virus. When they told their stories, it was easy to connect the dots and see how various factors interacted to produce these behaviors. A lot had to do with poverty many had no money for transportation and others had no money even for food. And then there were also structural barriers that were not as obvious. I saw HIV positive women struggling with giving care to a child also infected and the grief o f losing a husband to HIV. The stories were varied and yet in some ways similar. I learnt that listening to the patient was fundamental to providing effective care as a health professional. On starting my graduate studies, I was encouraged to start thinkin g of my area of focus with respect to research efforts. My experiences and lessons learned had stayed with me. When I saw in literature that here in the US, African American women are the
94 most disproportionately burdened by HIV, I again thought back to my experiences at the rural HIV clinic. However, I knew that the context of the patients here was in many ways different from the relatively poor resource setting in Nigeria. I volunteered to help out at the Alachua County Health Department and worked with th e then HIV bureau to track down PLWHIVs lost to follow up. I kept thinking of the patients I had worked with w ho I had initially been i m patient with, because I did not know why they did not show up at the clinic when they should or take their medications a s prescribed. I recalled that the key was listening to them and seeing through their eyes. I conducted a preliminary study and interviewed ten African American women living with HIV. There were more stories . and more insight. But I realized that if t hese women perceive things in one way and their care providers perceived the same things in a different way, their challenges may not be adequately addressed, hence my interest n y I had the following assumptions: 1. Most health care providers who interact with this population are of a different race/ethnicity and therefore may be unable to relate to the context of this population; 2. patient as a person with a condition who simply needs to take medications with proven efficacy and be well, while patients experience the illness in the context of their lives and the way it affects other areas of living; an d 3. Providers view medication adherence more as a patient responsibility than a system responsibility, since medications are typically taken outside the clinic.
95 Table 3 1 Area 3/13 population pro file Area Population (2009) Land area (sq. miles) Population Density (persons/sq. mile) Alachua 247,537 874.3 283.1 Bradford 28, 512 293.1 97.3 Citrus 146,346 583.8 250.7 Columbia 69,182 797.1 86.8 Dixie 15, 649 704.0 22.2 Gilchrist 17,779 348.9 51.0 Hamilton 14,745 514.9 28.6 Lafayette 8,256 542.8 15.2 Lake 305,150 953.2 320.1 Levy 41,293 1,118.4 36.9 Marion 341,870 1,578.9 216.5 Putnam 75,136 721.9 104.1 Sumter 96,422 545.7 176.7 Suwannee 41,086 687.6 59.7 Union 15,860 240.3 66.0 Area 3/13 1,464,805 10,504.9 139.4 Florida 19, 021,613 53,926.8 352.7 Source : University of Florida, Bureau of Economic and Business Research, Florida Statistical Abstract, 2008; ESRI Business Solutions, 2009. Prepared by: WellFlorida Council, 2010.
96 Table 3 2 Refined codes 1. Access to care Availability Cost Linkage Transportation 2. Adherence Clinic visits Major life event Medication Strategies 3. Assessment/Monitoring 4. Care Approach Accommodation Active listening Addressing problems/offering solutions Collaborative effort Eliciting information Empathy/sympathy Goal setting a. Harm reduction Holistic Negotiating Non judgmental Partnership Patient involvement/ participation Patient preference Physical touch Positive reinforcement Tailored/individualized Time/timing Treating as a person/Respect Vicarious conditioning 5. Care Expectation 6. Care Outcome 7. Co morbidities 8. Culture 9. Denial/Acceptance 10. Dependence on care giver 11. Disclosure 12. Disease/Treatment perception 13. Disparities Prevalence Vulnerability 14. Domestic violence/Sexual Abuse 15. Drug resistance 16. Emotional State 17. Fear Being ostraci zed/abandoned Disclosure/exposure 18. Healthcare system related Policy Process Structure 19. Incarceration 20. Information source 21. Language barrier 22. Legal issues 23. Lifestyle 24. Literacy/education 25. Maturity 26. Mental health 27. Motivation 28. Patient advocacy 29. Patient attitude to care 30. Patient communication 31. Patient counseling 32. Patient education/information 33. Patient involvement 34. Patient knowledge/understanding 35. Patient responsibility/self management 36. Peer support 37. Pregnancy 38. Provider education 39. Provider patient relationship Accessibility Building rapport/a relationship Building trust Care and commitment 40. Regimen 41. Religion 42. Shame 43. Side effects 44. Social Support/support 45. Social/Socio economic context Living conditions/context i. Location ii. Social context iii. Stability/ Housing 46. Stigma/Discrimination Substance abuse
97 Figure 3 1. Map of Area 3/13
98 Figure 3 2 Sample memo from MaxQDA 11.0.2
99 CHAPTER 4 FINDINGS In this chapter, the findings of the research, base d on the stated objectives are reported. This includes the conceptual model generated from data collected during interviews with health care providers working with members of the target population. This is compared to that developed from the preliminary study (based on patient perceptions). Quotes fr om both providers and patients are provided for comparison and practices and the HIV care needs of the target population are also identified from the narratives. Also included gaps. Demographic Characteristics of Participants Twenty one interviews were conducted with eight physicians, three pharmacists, three nurses and seven case managers. Fourteen of the participa nts were female and 16 of them self identified as Caucasian ( T able 4 1). The number of years of experience working with persons living with HIV (PLWHIV) for these participants varied from three to forty (40) years. The average number of PLWHIV seen by each participant per month ranged from less than ten (10) to over a hundred. Major Categories From the conceptual coding and thematic analysis of the coded data, eight major categories were identified. These broadly summarize the factors perceived by care pro viders as influencing care seeking and/or medication adherence among African American women living with HIV and include the following 1. Socio economic context 2. Patient illness experience
100 3. Mental and emotional health 4. Support 5. Access to care 6. Healthcare system 7. Provider patient interaction 8. Patient characteristics For each of these categories, there were sub categories and themes. These are listed in T ables 4 2 4 9. Perceptions of care providers that informed these categories are also summarized in the se tables Category 1: Socio Economic Context In come level, care giver role and financial responsibility The socio economic context of the target population was a major theme recurring throughout the interviews (T able 4 2). A majority of the target population was reportedly in the low income bracket, often unemployed, without insurance and in need of financial aid to access treatment. A common characteristic was the care giver role that most of these women were said to perform for children as well as older relativ es. They were also more likely to be single parents with the financial burden of the home resting on them. As a consequence, providers assessed them as having a lot to contend with and thus treatment for their HIV infection was usually not a top priority ( to the patient) considering their challenges of daily living. Participant: I think that living with HIV, for them, is not like the biggest issue, from what . . their income is very low, t get food stamps, but a little bit. If they have SSI, then they get only like a part of the African Americans [ Provider #05 ] Partici pant: I household, which puts a lot more pressure on them . . Taking care of the family, taking care of hers elf. Then they have so many things to juggle
10 1 make the wrong decisions. [ Participant #09 ] Instability Care providers also perceived many of these women as having a lot of instabil ity in their lives. The types of jobs some were able to secure usually entailed working shifts, so that their schedules changed frequently. This constant change was thought to adversely affect medication adherence. Housing was another major issue. Some pat ients reportedly moved from one location to another for reasons that were mostly financial. For some, living in multiple locations had to do with having a relative watch their children while they went to work. Having stable housing was associated with link age to and retention in care. Participant: Consistent housing, living in the same place from month to month or year to year. A lot of the women that I come in contact with change houses that they live in week to week, month to month, very frequently chan ging addresses, with a different person, partner baby daddy or whatever you wanna call it every other month. Not very many that that's the majority. There are a few that have a stable are in a stable relationship, have a stable residence that they're in from month to month, year to year, but that's not the majority. [ Provider #10 ] For those that needed to re certify their eligibility for assistance the paperwork sent to them often went to an address where they were no longer living. Some of them only r ealized that the deadline had passed when they were unable to get care because they had lost their eligibility. Some forgot their medications in one place when they slept over at some other place, and others (usually the homeless) reportedly had their drug s stolen at times. Participant: stolen. Some of the medications can actually be abused by people. They can be ground up and smoked, for instance. [ Provider #02] ]
102 Some patients fr om the target population had been in and out of jail or prison. While incarcerated, they were adherent to their medication because it was mandatory to visit the dispensary window as scheduled and take the prescribed doses. However, when they came out, some of them did not get into care quickly enough to prevent a perceived as having a negative impact on medication adherence. Participant: Another problem with it (re determina tion of eligibility ) is if they're in and out of jail. They're getting their medications when they're in jail. Then, they might come out of jail, but they don't come in for care again for probably months or so. There's lapses in their medication, then . [ Participant #10 ] Education/literacy level Educational attainment was perceived as quite low in this population. This was disease, the mechanism of antiretroviral treat ment, and even understanding of the instructions and counselling accompanying medication prescription. Participant: B ut a lot of times they have very limited education to really understand Provider #12 ] Lifestyle Life style issues mentioned included risky sexual behavior associated more with younger women who characteristically had unprotected sex because they naively believed that their partner loved them and was faithful to them. Participant: A and I do [pregnant and diagnosed with HIV] safe sex practices and the use of condoms because at least the one time they got pregnan t they were not using condoms. Some of these young ladies do have a history of multiple used condoms either. [Provider #12]
103 Another sub group that providers talked about was those i nvolved in prostitution or persons who kept multiple sexual partners. Substance abuse was frequently mentioned, but again this was thought to occur in a sub population of the target group, and was viewed as both a pre disposing risk factor to acquiring HIV and a barrier to medication adherence. Participant: Yeah, especially if they have a drug addiction and that's the way they got the HIV, and that's part of the subgroup of the population with the young ladies (pregnant and diagnosed with HIV ) . It's h ard to get them into a program and institutionalize them, essentially, but you can't do it against their will. It's a very, very tough situation, and it's not something other people understand well. It's hard to break that idea. That combination has bee n very hard for me, for that patient to break through. I don't know. [ Provider #15 ] While some providers acknowledged that a good prop ortion of their client base was currently or had previously used illicit substances, other care providers said they had f ew or no drug users. Participant: you that much in the African American population as I see in the non talking about whites and Hispanics. [ Participant #09 ] Domestic violence/ sexual abuse These women were also re ported as tending to go in and out of dysfunctional relationships with some settling for relationships characterized by domestic violence and/or sexual abuse. Many were reportedly living in fear of their partners finding out about their status while others were under threat from their partners to keep their status undisclosed. Abuse was said to be prevalent in this population with occurrences for some starting at childhood and continuing through adulthood. This was thought to be
104 the underlying cause for men tal and emotional instability, resulting in non adherent behavior. Participant: With the domestic violence part, I think that and sexual abuse both play into self abused that makes th been abused and they have all this mental trauma and decreased self esteem that makes them not adherent . in my experience any female patient needs to be hey are, need to be screened for domestic violence and for being abused sexually, Provider #02 ] Life changing traumatic event There were narratives of patients who had been adherent to taking t heir they discovered that there usually was a life changing event (like the death of a loved Parti cipant: I've had one lady come in recently and she's always been pretty she's a pretty smart lady. She got it. She was taking her medicines. All of a sudden, she had this blip. It's like, "What's going on here?" She told me her brother died . She had a crisis. Yeah. "Let's try to get you back on the bandwagon here." I understand it. It happens. Sometimes you can't be perfect forever and these things do happen. Just try to be supportive for her and get her back on track. Maybe keep a little b it closer eye on her in the future. Instead of seeing her maybe every four months, see her every two months for a while or do her labs a little bit more frequently. [ Participant #16 ] Generally, disparities in HIV related care and health outcomes [for wom en in the rural areas] were perceived as being more significantly associated with socio economic status (SES) income level and education as proxy; with race/ethnicity as a possible confounding variable. In other words, women in the lower socio economic s tratum generally were seen to experience similar issues with accessing care and medication adherence irrespective of their race/ethnicity
105 Participant: They're (referring to African American women) just like women everywhere. It doesn't matter the color. I think that in rural areas, sometimes those racial disparities aren't as apparent in my experience. It seems like the economic situation's very similar. The education level tends to be very similar among all of my women, white or black. [Provider #03] A economic context as it relates to medication adherenc e is provided in T able 4 2. Category 2: Patient Illness Experience al experience in dealing and living with HIV following their diagnosis as having considerable influence on their adherence behavior. The different phases in the illness experience are thought to either hinder or enhance medication adherence ( T able 4 3). D enial Patients commonly experienced denial at diagnosis, and for that period were unlikely to engage in care. However, some patients reportedly also went into denial following treatment (when symptoms were no longer experienced or viral load was undetectab le). Some providers alluded to having patients who were adherent to their medication but were purportedly still in denial. Participant: Yeah, I'm saying that most of my Afro American clients fall into a level two or three ( referring to severity category ) and the reason being is number one, if they're newly diagnosed or have been diagnosed within a year or two, they may be in denial, okay . the majority of 'em have they could Participant: Then you have a group of patients who don't take 'em because after they start taking them they feel better. That's when maybe a little denial kicks in, if you know what I mean. [Provider #16]
106 Acceptance of HIV status Acceptance of HIV status was reported as usually occurring with increased knowledge and understanding of HIV disease and the mechanisms of the antiretroviral treatment. For some members of the target group, acceptance was based on an assurance drawn from t heir faith in God. Participant: [By the time they come to you where are they at? Are they usually where they have accepted it . ?] For most of them I can do is go see the doctor, be on medication, do what I gotta do to make this better the road to accepting, and they just want help. There are still, like I said, a handful of people that will [Provider #08; case manager ] Perceived control of HIV disease The physicians reported that often times when patients experienced improved health outcomes and saw a significant change in their clinical values following treatment they tended to gain a sense of control. Acceptance of HIV status usually preceded perceive d control. Participant: Number one, they wanna live, okay? A lot of 'em have children and they want to see their children grow up, so they're living for somebody, okay? They do say they live for themselves, but they understand now that this disease isn 't going to kill them, that they have control over the disease. If they can learn that they can control the disease and not let the disease control them [What gets them to that point of understanding and perceived control of the disease?] They start feeli ng the effects of the drugs. The drugs are affecting how they're feeling. They've got more energy. They're eating better. Once the drug is working for them and their viral load goes down, and they're not succumbing to other diseases, or infections, or ps [Provider #01] However, the narratives also suggested that a sub set of p atients from this population while not surprised at their diagnosis of HIV (based on their risky lifestyle)
107 are neither accepting of their status, nor necessarily perceive themselves as being in control of the disease. Participant: It's part of the life th ey've lived. They almost expect it, there are because of their way their relationships, different partners, or they were prostitutes or they're drug prostitutes. It's almost like, "Whatever." I've had very few come through that are really shocked and su rprised, but a lot of 'em just it's like another day . I don't know that they accept it. I think it's just there. Almost like they expected that it might happen, but they didn't do anything to prevent it from happening. I don't know that they truly accept it. [Would you say they are really not in control of it?] Definitely [Provider #10] disease), patients were reportedly more likely to disclose their HIV status and cons equently received the much needed social support. With available social support, providers also reported the likelihood of better adherence levels. Participant: We talk about who knows about the diagnosis in their family or their household where they live. We talk about who supports them through this . . Really knowing also that we, the doctor or the nurse the prof essionals which is more of family and friends . . Yes, they do (better adherence with social support) in terms of being able to stick to the regimen. [Provider #17] Self disclosure of HIV status As part of the process of care, providers said that they usually encouraged patients to disclose their HIV status to someone they could trust. The goal was to ensure that the patient had some support at home. From their narratives, those who finally disclo sed to a family member(s) usually received the much needed social support w hich providers reported as enhancing medication adherence. They reported that some patients had family members come to the clinic with them. Those accompanying the patient often hel ped in rei nforcing the information they received as well as reminding the
108 patient to take their medication. However, providers generally stated that members of this population were not always willing to disclose their status to family members, especially f ollowing their diagnosis, as they feared being isolated or losing the family relationships they had. Participant: their status to relatives, mother, father, sometimes the spouse, child ren . rejection and other tragedies. They can lose a family because of the misconception of people having HIV . people jump to conclusions [Provider #09] Drawing from their experiences, some of the providers interviewed reported that most of the patients did eventually disclose their status to a family member(s) after some time had passed. The tim e span between diagnosis and self disclosure was reportedly variable from one person to another. Participant: Eventually, though, they do make that effort and tell them (reference to family members) and then they have good social support . . Over the years, they've told them, and then finally they have come to terms with it. [Provider #19] Older women were reportedly less likely to disclose their status to family members compared to younger women. They (older women) were also described as having bette r coping skills. Participant: . . The absolutely I mean, who are people around with you, who can we talk about this in front
109 Motivation A key factor identi fied by providers was having some motivation to take their antiretroviral medication. As part of their care approach, providers engaged patients in dialogue to understand their context and determine important aspects of their lives that could serve as moti vation. Hence part of the care process was to get patients to a point where they were motivated to follow through with self management and making the required follow were identified as potential motivators of medication adherence. These varied from patient to patient and included their care giving role, living to see their children grow up, prospects of maintaining a simple regimen, perceived efficacy of the treatment, a spiritual en counter or a near death experience. Participant: needs their help. You need to be there for your mom. I kno how can I use that motivation in a positive fashion, to get them to be adherent. You have to have a reason. [Provider #02] Category 3: Mental and Emotional Health ability to follow throu gh with self management of their HIV treatment. This factor was repeatedly brought up as a major barrier to medication adherence in the target population.
110 P s ychiatric disorders existing mental health issues and depression prior to HIV diagnosis. These, they reported, were often untreated because of the associated stigma. Participant: Mental illness is a big problem in these ladies . . Sometimes it is (ref: mental illness associated wi th HIV). Usually it's not. Usually it's like bipolar disorder. The ladies that I've had that've really had a hard time recently have had bipolar disorder, and they just refuse to go back to the psychiatrist . . We kinda struggle with that because som e of them have significant enough psychiatric disease that I do not feel qualified to be the person deciding that side of their care. They have access to mental health providers, but they don't wanna go. [Provider #03] Depression According to the participants, other psychiatric problems were associated with the HIV diagnosis. HIV related depression was a common feature among patients because of their perception of the disease and the stigma associated with having the infection. Participant: We see quite a bit of depression. Adjustment disorder is quite frequent, even more in the first stages of the HIV. Everything just falls apart. As I Just carrying a diagnosis of HIV, that has to be very depressing. I would say depression is the most common mental problem that I see. Of course, in the community, we have very limited resources to tre at this condition. That falls o nto us a lot of times. [Provider #09] Emotional distress Pa rticipants reported that a lot of emotional distress was brought on the patients by their feeling of anxiety concerning the outcome of the disease especially following diagnosis when HIV knowledge was usually low. In some cases where the person had indulge d in risky sexual behavior, there were feelings of guilt and self condemnation.
111 Even some of the older women who reportedly contracted the infection from their husbands or significant other were said to feel some sense of shame. Participant: I think that shame's a big issue. I think that they see themselves as having made bad choices, and they judge themselves that they've made these bad choices. That's a big thing that we talk about. You don't know what your partner's doing. You don't know where they 've come from . When they come and I can diagnosed with HIV have a lot of shame about their diagnosis. [Provider #03] Instability For those who had not disclosed their status, they lived under the constant fear that someone might find out about their status. Those in relationships or living with family members were often afraid that someone would discover their medications and result in their being abandoned or ostracized. They also feared experiencing stigm a and/or discrimination in their immediate community or in a public place because of their status. Participant: I see a lot of from the African American perspective, there's a fear initially about telling the family or any social supporter their signific ant other about telling them about the diagnosis . initially, I've seen that hesitation, probably with all of them, but it seems like it's more with African American females cuz there are a few that even their children don't know. Over the years, they' ve told them, and then finally they have come to terms with it. Otherwise, that fear is there. [Provider #19] being and influencing the way they responded to their prescribed regimen. For example, some patients would skip doses if there was a chance that someone might see their pills and ask questions. The constant heightened state of fear contributed to their distress and impacted their adherence behavior. Participant: Fearful, in term
112 seeking care for that reason. They're afraid t hat the secret will get out 02] adherence in thi s population are summarized in T able 4 4. Categor y 4: Support Having support was acknowledged by most providers as being crucial to successful treatment of HIV. Various forms of support were described. Social support Most of the care providers interviewed said they always encouraged patients to find som eone they felt comfortable disclosing their status to with the objective of having some support. Those who had some support from family members were found to do better in terms of medication adherence. Participant: I think a family support is something actually positive, that actually, so I think a big you know, having a good your first safety net, honestly, even before your physician. [Provider # 14] The lack of social support in a sub group of this population was attributed to the unavailability of persons to provide instrumental support such as childcare. But for the most part, the lack of social support was said to be as a result of non disclosu re of HIV status by patients in the target population due to the associated stigma. Participant: I think that there are issues with social support that may be more of an issue for African American ladies. It seems that sometimes they have to be a little m ore independent, particularly when they have children. A lotta times, they don't have somebody to watch their kids, and they'll bring their kids to the clinic. That is something that I notice a little bit more, that they are tending to be a little bit mo re independent, [Provider #03] Care providers also acknowledged the importance of the spiritual dimension characteristic of the target population and role of the church in providing emotional
113 support. They suggested that patients who trusted in God and bel ieved in His divine ability to sustain them probably fared better with their medications and illness in general. Participant: I would say that those who are very religious and they are more devoted to religion probably they do a little better. Of course, they pray. They have different things; they can focus their attention on other things besides you based on experience if they do any better than others. Just thinking of it, may be they do a little better if they are more engaged into their religion, whatever they prefer to pray to. [Provider #09] Ins trumental support Another form of support was the type that directly facilitated care and included strategies to aid medication adhe rence such as pill boxes and alerts to remind patients to take their doses. For those in more rural areas, there were pharmacy mail order services designed to ensure timely refills by getting their medications to them rather than have them come into town t o pick them up. Participant: access to those mail order like I know how to do it the following two weeks.[Provider #18] m edical needs (such as and thus helping them focus on taking their medications. In addition, services such as mental health counseling, case management and payment for their antiretroviral medications were also reported as facilitating care and enabling in medication adherence behavior. Participant: If they have a safe place to live, and they have their lights on, they are more inclined to go to the health department am I gonna get my dinner? How am I gonna keep my medications
114 from being stolen fr odds of going and maintaining. Cuz it takes that level of worry off. Then not stressed about paying the rent, where am I gonna sleep tonight. [Participant #06 on providing support for housing through HOPWA Housing opportunity for people living with HIV/AIDS ] Peer support Peer support was perceived as having potential to provide the kind of support that family or care providers were unable to give since they did not have the virus. Having someone who actually had the disease and had effectively been maintained on ART help t he newly diagnosed navigate the care process was considered a helpful strategy. Many of the providers interviewed did not have any empirical evidence of the direct benefits to medication adherence in their patients. There were speculations that patients wo uld likely be more receptive to medication adherence counseling from persons living with HIV as people who could identify with their illness experience. Participant: Going to these support groups I think is helpful. To talk with somebody who just went th rough this not too long ago, and is understanding. ort group and talk to [Provider #08] Some providers had only recently become aware that peers were being involved in HIV care to enhance health outcomes. Participants, however, acknowledged that some of their m ore adherent patients were active members of HIV support groups, and suggested that the support received from such affiliation was somewhat instrumental to improved adherence and well being in general.
115 Participant: I just found out in another conference th at there are peers who have HIV volunteers who are willing to talk, and I think we have to make more use of them. I didn't even know that [Provider #19] A summary of provider perceptions about support to patients in the target population and how this in fluences medic ation adherence is provided in T able 4 5. Category 5: Access to Care Availability of relevant services/ resources access to care. Consequent to their socio economi c status (SES), a significant proportion of the target population were reportedly living in more rural areas with fewer care facilities and services available to them compared to the more urban areas. Participant: I feel a little anxiety for my ladies be cause if they lived in Fort Lauderdale, or West Palm, or Miami, or Tampa, they would have access to so much more. Here (rural) they're very limited. We don't have a lot of funding. [Provider #13] In some cases, even where some relevant services were read ily available (e.g. mental health counseling), some patients were unwilling to access those because of the associated stigma. Hence, some of these were under utilized. Participant: That is something that our program pays for. We do have the Ryan White Pro gram has mental health counselors. It is super, super underused. Not very many of our clients access it. We have a really great case manager who has a background in psychology, so she's really trying to push that on a lot of the clients, trying to erase that stigma of, "You're not crazy just because you go talk to a counselor." I think that's one of the main reasons why a lot of the people don't access that services is because the stigma behind . [ Participant #10 ] Affordability of healthcare services As a result of their SES, insurance coverage for many women in the target population was minimal or non existent. Even with financial aid, some services such as mental health were in some cases not covered. Financial aid where available was also
116 subject t o eligibility requirements that were not entirely discriminatory in identifying persons in need. For example, in calculating income, all house was inclu ded irrespective of whether they provided financial support for the client or not These access issues were identified as possible barriers to linkage to care and ability of patients to maintain follow up visits. In contrast, various assistantship programs were also mentioned as being currently or previously in place to help patients w ho were financially incapacitated with their medical bills and medications. Participant: years we talked earlier about mental illness and depression being part of HIV care a lotta times in this population. A year or two ago, the ADAP program, because of budget cuts, stopped paying for antidepressants. They were covering some antidepressants, and they stopped. Tha t made my life a lot more difficult, in terms of taking care of my patients, because a lotta them really benefited from the antidepressants. Then when the problem. You try to find thi ngs on the four dollar formulary that they might be able to afford, and you try to get around it, but still that made it more difficult. been advances and declines in the way that the drug assistance programs worked over the last few years. [Provider #02] Accessibility of health care facilities In some of the counties within the area of interest (Area 3/13), persons living with HIV had to access care in another county and many of these people had no car and the area had no public transport. Getting to the clinic was therefore a major challenge. Those who were eligible for Medicaid van or the Social Security vehicle were still faced with the challenge of scheduling for the vehicle in advance (as required). Some vehicles were scheduled to pick up multiple clients so that patients had long waiting times. Even where these forms of transport were available, some patients reportedly preferred not to utilize these services because of the associated stigma.
117 Participant: There are services available in some areas, but they have to have transportation to get there, and transportation is probably the biggest problem. There's no public transportation. If they have Medicaid and they are functional enough to make their appointments three days in advance . but that (Medicaid transport) takes being functional, having a phone that has minutes on it. It takes a lot of effort on their part, and so somet imes they have to pick where their effort's gonna go. For us, it's not a big deal. We have vehicles or we live in a town where we can just ride the bus, but for them, it's really hard. [Provider #03 ] Some others were not aware that these services were a vailable. There were also those who had readily available transportation any yet did not make it to the clinic for their scheduled visits. Participant: Part of the time they said it was transportation difficulties, which I could believe knowing where they [ Provider #06 attributable to other factors] Category 6: Healthcare System There were a number of care processes and structural factors within the health care system that were identified by care providers as having some impact on how patients i n the target population obtain care and their ability to stay on their prescribed regimen. Complexity of and inefficiencies in the care process Excessive paperwork: As a consequence of the prevalent low socio economic status in this population, the care p rocess for most newly diagnosed African American women was reportedly initiated with an assessment of their eligibility to receive financial assistance. This assistance was to enable them obtain anti retroviral treatment and other supportive services such as counseling and augmentation of rent for housing. The volume of paperwork involved for the eligibility process was perceived by care providers
118 as excessive (and therefore a deterrent to care), considering the literacy level of most of these women. In add ition to the initial eligibility assessment, clients enrolled for assistance were required to re certify their eligibility status every six months in order to continue receiving treatment. The re certification also involved more paperwork. Even though a re minder was sent a month prior to the deadline, clients were said to struggle with keeping up with the process usually because they had other competing problems. Participant: It slows the process down in my opinion extra layer of unnecessary paperwork to people who are already overburdened and many of them are illiterate, or not very literate, and is improving their getting any healthcare. I don [Provider #06] Restrictive policies: The inefficiency of the health care system in meeting restrictive than enabling. A policy related problem was the structure of the insurance and how bi lling was coordinated. Some patients reportedly could not get refills even when they ran out of their medications until the next billing cycle had started. Hence, medications that were lost or stolen, such that a patient whose medicines were stolen (a circumstance that was not uncommon given the housing situation of some clients) often had to wait till the next refill to continue with their medication. Participant: I think th making people jump through hoops to get their medicine or to do this or affecting their attitude about how w e take care of them and all of that and I think it just creates problems right and left. I mean that certainly is something that I would be if you wanna talk about policy or mind
119 meet the deadline (reference to re certification of eligibility every 6 months) .[ Participant 17 ] With regards to enrolment in care, those preferring to seek care in the infectious diseases unit of the academic health care setting rather than the health department were put on a waiting list. Though providers did say that priority was usually given to persons diagnosed with HIV, it still implied a waiting period that could delay initiation of treatment. In addition, pati ents enrolled in care in the academic health care setting were required to meet certain requirements in terms of keeping up with their clinic visits or else they would not be retained as patients. Participant: [Do you have a waiting list?] Yes, I think th at does become an issue. great job, if they're not able to get in, that's an issue and that's not being addressed correctly. One of the providers who's been working out in communities having the clinic here or any things like that, so it's an issue we're cognizant of. We usually find a way to squeeze, especially our HIV patients, in cuz there, it's a time bound thing. If you can leave out someone, we do, but if we have th e time. My sense is that we're able to get them in quite quickly cuz we understand the time delay at this point in their care, really try to . We do see them. [Provider #15] Of particular concern was the way referrals were made especially for mental h ealth treatment. Patients could only be given contact information for where to seek help; leaving it up to them to initiate the contact and actually obtain the treatment. Mental health issues when left untreated were said to adversely affect adherence beha vior. Many of the patients referred reportedly did not follow up with the contact information given. Participant: They're referred. We give them the confirmation. The doctor gives them contact information. Sometimes the doctors' offices will call, but we try and encourage the clients to take responsibility for their care. A lot of 'em go, others don't go . . We can help, but the facilities require the patient to call. The majority of the facilities do because they want the patient to take the first step . [Provider #01]
120 Fragmentation of the healthcare system Coordination of care: Care providers attributed part of the adherence problem to the fragmentation of the healthcare system. Patients in the target population often received care in more tha n one care setting usually because they had co existing conditions or had minimal or no insurance. While some had case managers that helped co ordinate their care, others had to meet up with the different appointments. Integration of patient health inform ation: Again, since the different health problems required treatment, the ideal would be that each care provider be aware of the prescribed regimen from other attending providers. This however was not always feasible because not all the facilities were equ ipped to input or access patient electronic health records. Drug reactions resulting from con current administration of contra indicated medicines were perceived as a likely reason for stopping ART. Participant: Part of it is a fragmented system, as well. They're dealing with the county department or with another provider and having to come here. I think there are a mixture of issues . . I think as much as we value privacy with HIV, it can work against them. It's much more difficult to get their recor ds, and their labs, and what they've had done before, and so on. Being Florida, they might've moved from a different state and so on and moved here and things like that. The fragmentation is the worst part. People get hospitalized at different facilitie s and especially with HIV related information, it's not transferred as easily and people forget. The fragmentation in general is bad with the healthcare system, but it's especially bad with HIV. [ Provider #15 ] Characteristics of the care setting In terms of the care setting, privacy was identified as a major issue. Clinics structured such that the waiting area or the entrance to see the physician in any way indicated that patients were there to seek HIV care were unlikely to encourage patient adherence to follow up visits.
121 Participant: [mentions a county] is that with the layout of the [mentions county ] County Health Department some of them feel uncomfortable going there becaus e the waiting room is a general room. Then when they call you go to another health department. [ Provider #06 ] In care settings (like the academic hospital), physicians were rotated and patients were unlikely to see that same provider at each clinic visit. This was also reported by some providers as being a barrier in building effective provider patient relationsh ip needed to achieve successful treatment in this population. Providers from the academic setting however reported that their aim was usually to build a relationship with the patient as a team, while still allowing patients see their preferred physician wh en possible. Other possible deterrents to care in this population as cited by the participants was the long waiting times at the clinic and patient dissatisfaction with the face time with the care provider. Participant: The other thing that is important w cult to do with than one that is really in difficult circumstance. [Provider #02 consistency of care provider ] Resources The lack of resources to provide supportive services such as housing, transportation and especially mental health counseling had frequent mention in the available was not being utilized in the areas of priority such as ment al health treatment. Participant: See, the problem here in this country, I feel I'm not tryin' to be political here is that it doesn't have to do with the resources. It's the allocation of the resources. Here, I think the problem that they have is there 's two
122 services that HIV patients don't have enough of. One of 'em is psychiatry and one of them is nutrition. [ Provider #11 ] Category 7: Provider Patient Interaction Under this category, three major themes were identified the patient provider of communication adopted in interacting with patients. The provider patient relationshi p Key aspects of the relationship that providers perceived as important to patients were being accessible to patients (which was usually accomplished by providing patient with a personal telephone number at which the care provider could be readily reached ); having a personal knowledge of the patient; and taking out time to build rapport and trust. The element most emphasized by care providers however was a demonstration of being. This was perceived as key in enhancing patient adherence to follow up visits and taking their medications. Participant: They have to know that you care about them. If you can do nothing else or gal if they do not understand that do what you ask 'em to do. If you can get that across to them over the first few visits, that is what I think how much you know until they know how much you care . They have to Prov With regards to the care approach, care that was patient centered rather than disease focused was reported as producing better treatment results. A patient centered approach as described by participants include taking patient preferen ces into consideration; inclusion of patients in decision making; encouraging patient participation
123 challenges. Providers also recognized that negotiating with patients on tre atment choices resulted in better adherence than prescribing treatments without duly consulting with the patient. Other approaches that providers talked about included investing time to ers to give comprehensive care; positively re enforcing little successes (like making it to the clinic) and setting incremental goals that patients felt more confident achieving (for example reducing alcohol intake versus abstaining). Other important care approaches included talking to patients about other persons successfully managed on ART as well as related problems (eg. side effects) with effective ouraged patients in continuing their treatment. Participant: as a medical healthcare provider. You want to actually be coming across yes, inserting the HIV care into it. [Provider #14 holistic ] Participant: Being more will ing to change the normal normally, I would be, "You can't leave unlabeled things around. You gotta be specific about your storage and how you handle things. I don't want you to have access to that in the car with a child." . I agree, but "I also want you to live as long as you possibly can and have the best life that you want, so we're gonna make an exception, and we're gonna do it however it works for you." That's the biggest thing I find for women, I think, in all things [Provider #20 tailored/i ndividualized; patient centered ] Participant: We do give you the choice of seeing someone or not seeing someone because you might like me and like two other people, but you might not like the fourth person or whoever it is . . There are some patients wh o specifically ask not to see one of us, and we completely honor that.[ Provider #15 preference; patient centered ]
124 Participant: I can tell them the reason medically, what I think about their CD4 counts or their viral load or what I think could happen if we delay treatment longer. but they need to be part of the [Provider #17 participation; patient centered ] Participant: Yeah. "Why is it that you don't wanna do it?" Being honest and making it very clear, "I'm gonna try to find another way? What is it about this way that you don't like? What is it about this drug that doesn't make it happen?" rather than just watching someone decline and then yelling at them about it cuz I think that a lot of times women if it doesn't work out, they just d on't do it. [Provider #20 motivational interviewing ] Participant: That was kind of like getting to know them. I would really try to spend a lot of time with the patients at that point (initial encounter), depending on what their level of illness was . It's just spending time with them and trying to explain things to them and not trying to rush them. I know myself, when I feel like I'm rushed out of the doctor's office, I don't like that. [Provider #16 time investment ] Participant: I look for moder a moderate level, then I might be content with that. [Provider #02 goal setting; harm reduction) ] Participant: Obviously, when it comes to adherence and it comes to stabilizin' somebody a fter their diagnosis, it's not just one person. It has to be a whole multidisciplinary effort. [Provider #11 collaborative effort ] Participant: I usually walk through a comparison with another patient of mine without a name, someone out there who has go ne through this and that right now, this is where we are and this is what we do. That seems more few months ago and that we went through the same process and now, they're at a better place. In very many ways, you're very similar to her, and that we walked together along the same path, and you and I can walk strategy that I use. [Provider #15 vicarious conditio ning ] Participant: they were a month taking their medicines before they quit. They were two carrots o medications at the same time three months in a row. Great. Your CD4 your viral load
125 know? I mean so it really has to be a lot of positive reinforcement. Yeah, yeah. [Provider #13 positive re enforcement ] Participant: That was one of the big things that I thought they did really well with [chain pharmacy employed in]. They were really big about the culture and the person. You're treating a person. You're not treating a number, and you're not treating a med. [Provider #20 Treating patient as a person (Physical touch, Respect) ] Provider patient communication How providers communicated with patients was cited as very important in the care process. Communication in a non judgmental manner was emphasized. Providers talked about how active listening in patient communication was pivotal to understanding their needs. Th is enabled providers to obtain information pertinent to delivery of competent care. Participant: T hey know that our clinics are a no judgment clinic I try not to make it a situation where there's any judgment When we talk about risk factors, I try to h know what decisions I would make had I been in your shoes. Don't ever feel like I'm judging you about anything. . [Participant #03 non judgmental ] A good provider patient relationship was perceived as significantly enhance influence of specific characteristics of the provider patient interaction and relationship erence behavior is provided in T able 4 8. Category 8 : Patient Characteristics perceived by providers as affecting medication adherence in this population. Patient knowledge and unders tanding Different care providers confirmed that HIV knowledge was usually low at the time of diagnosis. Providers reported that as patients were educated and counseled
126 over time, knowledge increased with resultant change in patient perceptions. However, pa assessed as unable to comprehend information being given to them despite repeated education and counseling. Participant: If they can understand what the numbers are and w hy they're taking it, I think that helps. That goes a long way . Knowledge is power certainly. I think the more patients understand, the better it's gonna be. Some patients, you can tell from the get go that they get it. They get it gotta t other patients never get it. There's some patients you just have to realize at a certain point it's a cognitive issue. It's a cognitive issue. No matter what you do, t vider #16] In contrast, there were patients who were assessed as being knowledgeable about HIV, yet remained non adherent to their medication; suggesting other attributable causes. Participant: I have some ladies that seem like they are so knowledgeable, t hat they're motivated. They'll text me; I'll text them. They'll come and their viral load's half a million because they're not taking their meds. It's a very strange thing. [Provider #03] Patient disease/ treatment perception at the time of diagnosis was mostly shaped by normative beliefs and oftentimes augmented by invalid information from non medical sources such as relatives. The providers said they had the task of educating patients to change these perceptions. Participant: medication . . Wh medication. Not all of them . What they see in their community is, when of the biggest barriers to getting them to accept the idea of taking it. [Provider #02]
127 An interesting patient experience reported by providers is the positive effect of e side effects and then stop their medication when they became unbearable. Participant: good mix. People taking the medication, so we work really hard at that. [Provider #12] Their experience of side effects also re enforced negativ e perceptions of the treatment. These perceptions became barriers to accepting treatment and providers emphasized the importance of adequately educating patients on common side effects associated with the regimen they are prescribed before initiating them on treatment. Providers also encouraged patients to communicate their experiences and concerns and have them addressed rather than stopping the medication. Participant: already telli ng you I know can happen so this is not a surprise. You should not be surprised or worried. You should recognize that no, we can about it with me or us the nurse a reason to e ither change your medicine or to stop your medicine at this [Participant #17] Patient responsibility/ self management Another patient characteristic that differentiated persons in the target population was ability to engage in self management and t he willingness to take responsibility for their care. This was evident in how participatory patients were in the care process (for example asking questions). Patients unable to engage in self care due to low cognitive or functional ability were reported t o do well if they had a competent care giver that
128 could be depended on to administer their medication as prescribed and ensure that they make it to their follow up visits. Participant: In my particular practice, like I said, the ones that are working and really some of them are very well health conscious, and they know exactly what to do. They're really on top of like communicating with the e mail system where patients can send us e mails. They really wanna know their numbers, are they undetectable, or if they're detectible . . I can think of these, and I guess they stick in my head more because I respect that they're doing all this living with this disease and really taking care of it. Then there are others who are just a little bit on the passive side. Whatever we tell them, they will follow through, not a whole lot of questions . from what I've seen, the ones that are working and have a little bit higher degree of educa tion, they'll ask questions [Provider #19] Patients who were older rep ortedly had better coping skills and were more likely to make lifestyle changes (such as quitting substance abuse, prostitution, etc.) to enable them become more adherent to their medication. Participant: In terms of them taking it (ref: medication) it's almost like the patients who get it, they keep it. There's a group that get it. There's a group who never gets it. Then there's kind of a group in the middle . Lots of times they're young . like 18, 20, 21. Girls who come in with their mothers and their mothers are the ones who are [responsible for their care] you know, and the patients are like --. . They just don't they're young. [Provider #16] Self efficacy effi cacy to make changes that would enable them become more adherent to their medication. Despite continued education, counseling and efforts at motivation, some patients were reported as simply unable to follow through with sticking to their prescribed regime n. This was (not restricted to, but) especially common among persons addicted to illicit substances or engaged in highly risky sexual behavior. However, some persons over time (especially as they got older) were said to find the motivation and consequently self efficacy to make the recommended lifestyle changes.
129 Participant: I have one lady that was a huge alcoholic for years, and years, and years. had stopped drinking, are in t he church, and that's the path that she chose. It was a matter of being a little more mature, deciding that she wanted a job, that she wanted to be a good example for her grandkids. It didn't matter that her kids saw her having these issues (substance ab use). She didn't want her grandkids to see her having those issues. I have a lot of older ladies that seem to have kind of figured some things out for themselves and made these changes on their own. The younger ladies still struggle with it, and I think it's a social issue. [Provider #03] Others that struggled with medication adherence were those who reportedly felt that they were unable to deal with the side effects or the chronic administration of medications. According to some of the providers intervie to take the antiretroviral treatment prescribed even when changes to the regimen were offered. There was an example of one such patient who invariably died of HIV related causes. Participant: I had one patient, beautiful woma n, who she stopped her medicine and she knew that that meant she was gonna die. She was okay with that she went to live with her sister. Her sister took excellent care of her. That's what she wanted to do. She could not take those medicines. She's probably in her 40s, later 40s I think. She was a young woman. She was a young woman. She had children and everything. She just couldn't do it. We told her, we said, "Any time you wanna change your mind, we can try this again and try to turn it around." She couldn't take 'em. They made her feel so bad. Isn't that amazing? I still think about her. [Provider #16] was reported by providers to enhance adherence behavior in some patients because the patients were generally able to diligently take the single dose daily versus a multiple dosing regimen. Participant: or one or two pills, as opposed when I first started they would be taking a half a dozen different litera
130 [Provider #06] However, providers also pointed out that for the patients who had an understanding of the importance of the medication and were committed to taking them as prescribed, the complexity of the regimen was not a barrier. Participant: I will tell you, the people way back when whe n we first started doing this, and you had drugs like Crixivan, and stuff like that, patients who got it, they got it. It didn't matter what type of food restrictions they were on, they would do it . There's some people, once they are committed yes. T hey will do it. They will do it. In fact, then you try to get them to change over maybe to something that's easier and they don't wanna do it. [Provider #16] Developing a Conceptual Model To generate a conceptual model reflective of the perceived relatio nships among the factors identified, further synthesis of the eight broad categories that were identified in the thematic analysis of data was carried out. Support was broken into two sub categories [1.] perceived support (social and peer) as patient rel ated and [2.] instrumental support from care providers as a provider related and therefore inclusive under the provider component. Access to care was placed under the healthcare system component. The result of this inductive process was the regrouping of t he categories, sub categories and the themes under them into four (4) basic components that were perceived as interacting to influence the medication adherence behavior to produce the consequent health outcome in the target population. These are as follows 1. The socio economic context 2. The patient Patient illness experience Patient characteristics Mental and emotional health Perceived social and peer support
131 3. The healthcare system Access to care [availability and affordability] Healthcare process Healthcare structure 4. The care provider Provider patient interaction Instrumental support Comparative Analysis of Conceptual Models The conceptual models developed from patient and provider interviews respectively were compared to specifically identify sim ilarities and differences in perceptions ( F igures 4 1 and 4 2) Comparisons were made based on themes identified under each category Con trasts Socio economic context Socio economic context (as previously discussed) was repeatedly cited by care providers as an over seeking and medication adherence behavior as well as their access to and care process. Their socio economic status w as also said to make the target population more vulnerable to healthcare system related problems. Patients did not make direct reference to their socio economic circumstance in their narratives. Provider: lse that goes with it as far household, which puts a lot more pressure on them . Taking care of the family, taking care of herself. Then they have so many things to juggle make the wrong decisions. [#09] Housing as a major barrier: A major issue raised was housing. Many of the providers emphasized the importance of stable housing in HIV care, especially in the
132 target population. They stated that patients who had some stability in housing were better positioned to engage in care and take their medications as they should. Provider: I think we talked earlier about what the outcomes are for HOPWA. Every program he re has outcomes, but ours are state outcomes. I believe that during the service period. Because of that, they have better access to health care, more likely to take their meds, if th ey have a roof over their head. [Provider #07] A problem related to housing was previous incarceration and/or having a criminal record. This made it more difficult for some of these women as landlords were skeptical of having them as tenants and the same b ackground disqualified them from getting into public housing facilities. Provider: problem for them to be stable. [Provider #05] economic factors as barriers to care and medi cation adherence. However, data from their demographic profiles such as unemployment and low level of educati on ( T able 1 1) as well as inferences drawn from their narratives did reflect the impact of SES on their health related behavior. Dynamics of the transition from states of denial to acceptance: A critical look at the narrati ves from the care provider interviews revealed that they had a lot of identified by participants in both study samples. However, the perceptions of how the patients in this population go through this experience and what they experience in these phases differed in some ways.
133 Provider: Then you have a group of patients who don't take 'em because after they start taking them they feel better. That's when maybe a litt le denial kicks in, if you know what I mean. [#16] Patient: But it took a lot of years for me to get there. And it took a lot of denial because from the beginning this virus was not real, it was not me, I did not about. And I got tested I would From care provider perceptions, the initial denial at time of diagnosis was common among patients. However, some patients who had come to accept their H IV status were said to still slip into denial when they achieved viral load levels that were undetectable by lab measures; suggesting that movement between denial and acceptance may be dynamic rather than static for some patients. By implication, patient r eversal to denial would also signal a reversal to non adherence to their medication. However, among participants from the target group, going from denial to accepting their HIV status was described more like a linear process whereby the change occurs at so me point in their illness experience. There was no mention of going back into denial after becoming adherent to their medication. However, due to the small and convenient study sample, it is possible that no member of this sub set of patients who move in a nd out of denial was interviewed. Necessity of perceived control of HIV disease: According to providers, perceived control of disease did not necessarily follow acceptance of HIV status for a sub set of the target population who were identified as living a lifestyle of risky sexual ntrol of disease could follow acceptance (mediated by HIV knowledge) or conversely could be the result of
134 empowerment from self disclosure of HIV status; hence the bi directional arrow between these two phases in the patient model. Provider: because of their way their relationships, different partners, or they were had very few come through that are really shoc ked and surprised, but a lot t hey truly accept it . [More or less, would you say they are really not in control of it?] Definitely. [#10] Patient: I studied more about the virus, I learnt about it. Not only that I had it, but about it to know it and understand the things that I ne eded to do so that I allow it to dictate my life. And when I learnt how to do that, I was ok with me . I began to take the initiative to take my own care seriously and to take control of it, so I could live. [#01] Motivation for adherence versus finding purpose/relevance : Having reason(s) to take their medication was perceived by care providers as finding motivation to live. Some of these were also motivating factors mentioned b y patients. Providers i en t s into committing to taking their medicat ion and included, HIV knowledge ( f rom patien t education/counseling ); prospects of staying on a simple regimen; hope of seeing their children grow up ; care giving responsibility to family members ( children, elderly ); perceived efficacy of treatment ; deteriorating health/near death experience ; care giver experience of sick relatives ; faith in God/ spiritual encounter Provider:
135 how can I use that motivation in a positive fashion to get them to be and every there for yo figure out what motivates that person, and how can I use that motivation in a positive fashion, to get them to be adherent. You have to have a reason. [#02] Patients interviewed perceived these reasons in a slightly different context more in the light of finding the purpose for living or discovering their relevance to significant persons in their lives (family members) and/or the purpose for their lives. P atients described this point in their illness experience as a turning point when they realized that they had a reason(s) to live. These differed from things that in addition motivated them and included, c are giver responsibility (children); p erceive d rele e ngagement in HIV advocacy activities ; f aith in God/Spiritual encounter ; p erceived love and acceptance by family members In addition to those mentioned by p rovider s, patients interviewed also considered the caring attitude of a healthcare provider as a major motivating factor. Worthy of note is that none of the motivating factors cited by providers required the patient to disclose their HIV status; hence being motivated to be adherent was not necessarily a phase following self di sclosure of HIV status. In contrast, most of the factors that gave patient a sense of purpose/ relevance required self disclosure of HIV status and were associated with relationship with others. Hence this phase of discovery of purpose usually followed sel f disclosure of HIV status. While the provider perspective suggests
136 that patients could be motivated to take their medications as prescribed even when they had not disclosed their status to other people. Patient characteristics Substance abuse as an addict ion versus substance abuse as a coping mechanism: Substance abuse was generally perceived by care providers as a predisposing factor to mental health issues prior to HIV diagnosis and a continuing addiction. For patients interviewed, while substance abuse was acknowledged as an addictive lifestyle prior to HIV diagnosis, it was also described as a coping mechanism initiated after diagnosis with some patients especially when in denial of their HIV status. Provider: Sometimes people, especially those who are resc ue people from that, but sometimes you can. [#02] Patient: And I could remember even when I tried a little drug at the rehab and for about it. It took it out of my mind. For that moment I was happy. I was OK, and then when the high went away, the thoughts came back in my mind and then it seemed like the more I stayed sober, the heavier that weight f ace you know the idea that I was HIV positive. And then I was doing this yo For providers, change in disease and treatment perception was attributed largely to pat ient education and counseling, with consequent increase in knowledge and understanding, and perceived efficacy with continued adherence. In addition to patient education/counseling and perceived efficacy, a significant key to change in disease and treatmen t perception learning from someone else who was living effectively with the virus. On the other hand,
137 p roviders were not very familiar with the role that other PLWHIV could play in changing Provider: I just found out in another conference that there are peers who have HIV volunteers who are willing to talk to . and I think we have to make more use of them [#19] Patient: A nd he start talking to me. He said you got the stuff and I say yes, and I figure well he and I got it. I got HIV and he said since 1989. OK. He gave me a big lift up. He did, he ju st talking and talking . . H e just gave me a big lift The etiology of mental health problems: Mental health problems cited by providers as a major issue in antiretroviral medication adherence; was perceived by providers as often pre existing the HIV diagn osis and attributable to substance abuse, domestic violence/ sexual abuse and HIV associated depression. While HIV associated depression was commonly experienced at diagnosis and especially when in denial, none of the patients who participated in the study mentioned having a history of mental illness associated with substance abuse or sexual abuse possibly because of perceived stigma. Provider: There are mental health issues. I think with any population with this ental health issues. The things that go with long term drug abuse as far as the brain and how it responds; not taking care of themselves and getting critically ill so they end up in the intensive care unit. [#13] Patient: L ike I said, I have my good day s and I have my bad days. I go through my depression, I go through my anxiety attacks and panic attacks, and you know I go through it. But if me and her get on the phone and we talk or we than me and she und erstands where I am still. [ #7] Cognitive ability related to self management: perceived by providers to be correlated with their ability to engage in self management and participate actively in their car e. Impairment in cognitive ability was cited as a major
138 barrier and such persons affected were reportedly dependent on care givers for their healthcare. This did not come up in patient interviews. However, this may be because those who volunteered to parti cipate in the study did not have any significant cognitive or functional impairment, since they were mentally functional enough to engage in an in depth interview. Provider: Other patients, never get it. There's some patients you just have to realize at a certain point it's a cognitive issue. It's a cognitive issue. No matter what you do, they don't get it, yeah. I know. You can try, but that's where it's really important to have a family member involved if you can because they're never gonna get it. L ike that one little girl I told you whose mother died, she was never gonna get it but her mother got it. Her mother made sure she got the pills and made sure she got the appointments and did the blood work and did everything. She wasn't gonna be able to do it herself. [#16] Faith in God as a facilitator of self efficacy: A factor that patients identified as increasing their self efficacy to make lifestyle changes and consequently enhance medication adherence was their relationship with and faith in God. E ven though there was some mention of the religious nature of this population, providers did not readily make the link between their faith and self efficacy as related to behavior change and consequently medication adherence. However, two of the providers d id mention that patients who were religious did do better with the treatment. Provider: particularly in this community, I want to know. I definitely wanna know have a spiritual life, they can put some of their burdens on somebody else. With prayer, they tend to do better. I encourage [#02] Patient: places where I have to pick up ----always that thought in your m have seen what I left out there, you know and just to pass by and look at
139 getting worse. So my right thing is just to stay focused a nd keep the Lord Complexity of regimen versus chronic administration as a significant barrier: P roviders identified the c hange of prescription to a simpler regimen as increasing self efficacy to stay adherent to their medication. The complexity of regimen though raised by some as a challenge did not necessarily limit medication adherence. Patients interviewed placed priority on the factors that motivated them to take their medications and many said that once they committed to taking their medications, the complexity of the regimen (considering also co morbidities) and/or side effects became non issues. What patients complaine d about was the overwhelming thought of having to take these medications continuously with no break for the rest of their lives Provider: A lot of our new patients we have to put on the one pill once a day. When you have a patient on one pill once a day t especially the new diagnosis patients; not just the women but anybody. One pill, once a day is definitely always better. [#18] Patient: I had periods when I stopped taking them. [Why?] It was just too much to handle, and I got tired, and sometimes when I took them I got sick. I mean every day? Come on! [#9] Providers did acknowledge that the regimen was not as important a factor for a sub population of patients in the target population who were already determined to take their m edications. In fact, some were averse to switching to a simpler regimen especially if they found the more complex regimen to be effective in controlling their condition. Provider: There's some people, once they are committed yes. They will do it. They w ill do it. In fact, then you try to get them to change over maybe to something that's easier and they don't wanna do it . I've had patients like that. I have this one darling patient from Georgia. She's on a weird
140 regimen right now. A regimen we wo uld never start now, but she's doing just fine. [#16] Perceived significance versus actual experience of peer support in HIV care : Peer support was perceived as potentially beneficial; but no firsthand account of impact on health related behavior was given by any of the providers interviewed. Among the patients interviewed, peer support was cited as significant in facilitating adheren ce in the target population; personal experiences were narrated to support these claims. Provider: Going to these support groups I think is helpful. To talk with somebody who just went through this not too long ago, and is understanding. Patient: L ike I said, I have my good days and I have my bad days. I go through my dep ression, I go through my anxiety attacks and panic attacks, and you know I go through it. But if me and her (PLWHIV) get on the phone and we older than me and she understands where I am still . [patient#7] The healthcare system Access to health care services: With the exception of one factor (lack of knowledg e), a ccess to care issues identi fied by providers were not mentioned by the patients interviewed For linkage to care, prov iders emphasized the unavailability of some types of services (such as mental health) and whether the pa tient had coverage or assistance to pay for the services where available. The major access issue resonating throughout the narratives however was transp were available and where to access them due to inadequate patient education following diagnosis. Transportation was not cited as a problem by pa tients. However, it is
141 important to note that the participants interviewed in the preliminary study likely did not have transportation problems since they were all able to come out and participate in the study. Provider: They have to have transportation t o get there, and transportation is probably the biggest problem. There's no public transportation. If they have Medicaid and they are functional enough to make their appointments three days in advance . [#03] Barriers associated with the healthcare p rocess: Barriers cited by care providers as associated with the healthcare process included policies that were perceived to be more restrictive than inclusive as discussed previously. In addition, there was strong emphasis on the excessive paperwork involv ed in staying in care on a continuous basis. Health care process concern expressed by patient participants was the nature of the referral at the time of HIV diagnosis. Active referral (making appointment for patient and facilitating clinic and follow up vi sits) was perceived as more effective in getting the newly diagnosed into care versus passive referral (where patients are told to make appointment or simply asked to go to the hospital). Barriers associated with the structure of healthcare: Barriers assoc iated with the structure of healthcare as perceived by providers included fragmentation of the system, inconsistency of provider in specific settings, and concerns over privacy (in ves, only inconsistency of care provider was brought up by patients as a structural barrier. Some patients however did not consider this a barrier. These patients felt they had no choice and simply accepted that they may be seen by different providers at f ollow up visits. They did recommend that the different providers should communicate more effectively
142 Patient: uch the same. I going on. [#05] Provider related factors Provider patient communication There were three comm unication issues identified by providers [1.] information over load following diagnosis, [2.] redundancy of information in the process of care, and [3.] language barrier. They talked about the counseling protocol at the time of HIV diagnosis; where effor t was directed at giving the patient information on so many different things pertaining to HIV and the treatment. Many of the talking points were as a matter of policy required to be covered following diagnosis. This however, tended to make patient counsel ing at the said time a checklist. Provider: process that they have to go through, especially when it comes to the ere is by step process that they have to follo w that the case workers or managers or person you give them all this information opti information over load ] Providers acknowledge that patients at the time of diagnosis were unlikely to retain much of the i nformation given to them and rather needed to have their immediate concerns addressed Provider: The women who are still overwhelmed with all the information they often honestly take that as I actually did a great job. I take that
143 with their partner? Is there a risk or what else, or are they asking abo ut them? [#17] One of the providers pointed out that some of the care providers (particularly physician s in the academic setting) who were foreigners had hard to follow accent s that made some of their pronunciations difficult to understand. The point here was that most patients in the target population were unlikely to ask the provider for clarification whe n they did not understand what they were told Provider: The language barrier with some people who come here is people follow up on their adherence their care and what have you. I think you know some people have a way of being able to I mean to me, you or you really enunciate well s #13 language barrier ] While continuing education was recommended for patients who had been on ART for a long time, some of the providers pointed out that at a point, some of the information became redundant especially if patients were adherent to their m edication. Provider: I know that it's a big pharmacy counseling point, but I find that it's very, very beneficial to find out where someone is before you bother to go into the long spiel about all of the medications, and what they're doing, and how to use 'em, and how to take 'em, and the little nuances of them, which I think are important but maybe not necessary for every single person. Because I find that that population who comes to me is generally in the middle ages, I wanna make sure that I'm not ass uming that they're brand new to it or that they're incompetent. [#20] In contrast, other providers were of the opinion that no matter how often a patient had heard the information, it should continue to be re iterated at follow up visits.
144 Provider: Well, I day. If you need any resources we day. Your numbers are good. Blah blah 8] Patient illness experience similar for the participants from the target population and the care providers interviewed and b oth included being in denial, acceptance of HIV status, perceived control of disease, self disclosure of HIV status and having motivation to take their medications. Denial : Denial was acknowledged by both patients and providers interviewed as a common exp erience following HIV diagnosis. Provider: It would vary a lot across the spectrum, particularly in the people who are rather it just would go away. [#17 Denial ] Patient: I was in denial. I did not want this to stare me in the face. And keep me De nial ] Acceptance of HIV status: With time, patients came to terms with their diagnosis and became more accepting of their status. While providers credited acceptance, patients in addition talked about the impact of seeing other person(s) who was living with the disease. Both patients and providers generally agree d that before patients became adherent to their clinic appointments and medications, they more likely than not were at t he point where they were accepting of their HIV status.
145 Provider: and they just want help . Most of them, yes, are very accepted, or at least are still internalizing it . .[#08] Patient: And even though I do have this virus, I look at the difference on ---he or th e virus, there is a difference. [#02] Perceived control of HIV disease: Following acceptance of their HIV status, increased HIV knowledge, and a change in their perception of the disease and treatment some patients would come to understand that they could keep the infection under control versus perceiving it as a helpless or hopeless situation. At this point, patients were then more likely to commit to improving their medication adherence behavior. Provider: B ut they understand now that this disease isn't going to kill them, that they have control over the disease. If they can learn that they can control the disease and not let the disease control them. [#01] Patient: drinking anymor did. I just put myself in a positive place and feet firm on the ground, and Self disclosure of HIV status: Members of the target p opulation were reported by both patients and providers as really averse to disclosing their HIV status to other people. Generally, over time, many of them (especially if they had accepted their status and gained some sense of control over the condition) wo uld tell family member(s). Most times, family members were accepting and expressed love for the patient in spite of their HIV status. Self disclosure also led to the availability of social support. Provider: Eventually, though, they do make that effort an d tell them (reference to family members), and then they have good social support . Over the years, they've told them, and then finally they have come to terms with it. [#19]
146 Patient: an outcast. treat me no differe ntly . you know like I thought that was going to Motivation/ finding purpose or relevance: To become adherent to their medication, persons in the target population often needed a reason to make that commitment of a lifetime of chronic drug administration. This was viewed as having discovery of purpose or relevance. Either way, at this point, patients had a reason( s) to stay in treatment and take their medication as prescribed. Having this knowledge, providers talked about nudging patients to this point to facilitate medication adherence. Provider: it gotta figure out what it is. It how can I use that motivation in a positive fashion, to get them to be adherent. You have to have a reason. [#02] Patient: Even th ough I knew this medicine was doing this to me (side effects), it like this and you just become where you put in your mind psychologically, this is what I need to do, then this i Cos I had too many people to disappoint and me being mainly, my family being another, God being another so then I --you put your mind to Patient characteristics With the exception of mental health problems, the same major barriers and facilitators were identified by both groups as possibly having a mediating effect between related behavior. The contrasting sub
147 themes are discu ssed in the previous section. Similarities in the themes identified are presented as follows The reportedly low knowledge of HIV at the time of diagnosis and the prevalent normative beliefs influenced the perce ption of patients in this population. This perception was thought to contribute to making them hesitant in accepting antiretroviral treatment. Providers usually took on the task of educating patients to change their perceptions about the disease and also t he medications. Provider: The other thing that I see happen African American patients tell me this sick. Then they associate them going for treatment and the medication as dying, or that the medicine is killing them somehow. [#02] Patient: Because of the stories. There are a lot of bad stories about HIV meds. I was on AZT and I stayed on AZT off and on for quite some time. And because it was so strong. [#1] Medication related experience side effects: The experience of adverse side effects was a significant barrier identified by bot h providers and patients. This was more so a problem for patients initiated on treatment when they had not had any HIV related illness, hence the side effects made them sick. Providers emphasized the role of patient education and drug information prior to initiating treatment so that patients are aware of potential effects and possible courses of action in their event (prescription of other medications to combat side effects, switching to a different regimen). There where patients who did stop their medicat ion because of the side effects experienced. Provider That's the first thing because if you do not tell them about side effects upfront, they may start takin' these meds and they started gettin' diarrhea
148 is. I was feelin' fine Patient: When I first started they used to make me very ill. I was like, I mean nauseous all the time and I was thinking that maybe they were giving me the wrong meds or it was too strong or whatever. An d I would come back and ----and there was one particular one that I really thought was doing the damage and I just completely stopped taking it. [#03] Patient responsibility/ self management: Another patient characteristic that was identified by both pati ents and providers was the ability of the patient to take on the responsibility for their health, engage in self care and be involved in the care process. When patients assumed this responsibility and became proactive with their care, they reportedly had b etter care and health outcomes; including adherence to their medications. Provider: trying to get [#13] Patient: active with my medication, because I want to know if this medicine is going to interact with the other medicine. What should I do if it interacts with the other? adherent to her re gimen ] According to providers interviewed active participation was also associated with maturity; older women being more likely to take on an active patient role compared to younger women. Younger women were described by providers as being likely to be de pendent on a care giver than taking responsibility for their care. Provider: Oh yeah, like 18, 20, 21. Girls who come in with their mothers and their mothers are the ones who are, you know, and the patients are like, "Me?." They just don't (get it) they 're young. [#17]
149 Generally, this population was described as tending to be more passive in their patient role. Many of them were not likely to ask questions and one of the providers suggested that this may be due to their level of education and simply not knowing what questions to ask. Provider: People are not educated and a few of the African American women I have Provider: thing I woul d say that them back, no matter how much you try. I think asking questions, yeah, probably and that might be something that they can that surely would help them, you know, and help us, because any help to them is help to us, so yeah, I would say like asking question s would be a good thing. [#14] Perceived social support: The importance of having a social support system was emphasized by both providers and patients. It was recognized as a critical factor in coping with HIV. Having social support served to increase pa their health. Family members would often accompany patients to their follow up clinic visits and encourage them to take their medications. Provider: I think the social support is very important for patients to be able to maintai n adherence. It was variable. Some of the patients I remember in clinic had spousal support. That was very good too . Or a parent. [#16] Patient: Whatever way it is find your support. Whether it is with family, or with a friend, or --you need that down. [#7] Perceived peer support: Peer support as previously discussed was support derived from persons who were also living with the HIV virus. There was a mutual recognition that this was a type of support different from the emotional support of loved
150 genuinely identify with their circumstance and challenges. Provider: Going to these support groups I think is helpful. To talk with somebody who just went through this not too long ago, and is understanding. me all about th Patient: Like I said, I have my good days and I have my bad days. I go through my depression, I go through my anxiety attacks and panic attacks, and you know I go through it. But if me and her (PLWHIV) get on the phone and we older than me and she understands where I am still . [#7] Self efficacy to make lifestyle changes: Often, pati ents engaged in behaviors that constituted barriers to medication adherence had to perceive themselves as being able to change these behaviors in order to maintain their health. With maturity, patients were said to become more committed to the recommended behavior. The patients interviewed were mostly middle aged and they talked about becoming consistent with abstinence from illicit drugs, alcohol and prostitution over time as they got older and wiser so to say. Provider: I have a lot of older ladies that seem to have kind of figured some things out for themselves and made these changes on their own. The younger ladies still struggle with it, and I think it's a social issue . I think as they s chaos. I'm decide to be abstinent or have one partner, and they get stronger in themselves. I think a lotta my ladies are very strong now, and they're able at? I'm not a kid anymore. I don't hafta play they're younger they have a hard time doing that and I guess it's a cultural thing. The guys are more with the heavy hands, and the wo men kind of feel like they have to be subservient a little bit to that. That's been pretty interesting, I think . Most of my ladies over 40 are very adherent. Almost all of 'em have an undetectable viral load. They just work hard. They really focus on their health [#03]
151 Patient: y healthy. And if I did take a drink, I could drink maybe in moderation and not like . I learnt that and I learnt that . because I relapsed once places. I had to cut off certain friends in order to stay clean. I had to change. I changed everything that I could because I chose that life was better than being dead. And in my mental state when I put the viru s in its place my mental state changed because I stopped feeling sorry for myself. [#01 over 40years old ] The Healthcare system Access to care lack of knowledge of available services: Care providers identified several issues associated with access to care in this population including insurance coverage, assistance, and availability of HIV care related services and particularly transportation. The point on which there was concordance bet ween the two Providers acknowledged that access issues encountered by members of the target population were not necessarily about the availability of the needed serv ices. Even where the services were available, these women did not necessarily know about them. Some of the patients interviewed said they were not told where to go to for the care services they needed. Provider: Sometimes, I think the biggest tragedy tha t African American women have when you're dealing with access to healthcare is there are services out there and they don't know about it and they don't know how to access it. If they could access it, then that'ld be great help. [#11] Patient: But as far as telling me about where to go, or seek help or counseling nobody never told me that. I kinda did that on my own. [#02] Healthcare process active versus passive referral: The process related component that both patients and care providers perceived as a barrier to care for the
152 target population was the referral process. The case manager described the current care protocol as involving immediate efforts to link patients to H IV care related services. However, how receptive patients were to these efforts was influenced by their mental and emotional state at the time of diagnosis. Engagement in care was still very much up to the patient. Patients described the active referral pr ocess as literarily having someone else undertake the responsibility of the linkage process. Newly diagnosed patients were more easily linked to HIV related care services when the referral was facilitated by a fixed appointment and instrumental help such a s transportation to the clinic. In passive referral, patients were simply given the information and expected to follow up with making and keeping the follow up clinic appointment and accessing other services like financial aid and mental health. Provider: T he Health Department contacts them. Then they will give them our information and help them. Then they contact us. Then we do the initial intake to get them help with the services that they might need . They try to link them at the Health Department make that phone call. [#08] Patient: When I got the news they immediately made the appointment for me because see at that time I was living out in (name of) County at that and immediately be put on the meds. [#08] Healthcare structure consistency of healthcare provider: Care providers talked about various problems with the way care is structured; factors which they perceived as constituting barriers to the target population. These included privacy of the care setting, waiting times and fragmentation of the system. However, the structure related issue that seemed to be of some concern to the target population (which care providers in the private clinics also picked up on) was the consistency of the care provider.
153 Provider: them. One of the problems that some HIV clinics have is t than one that is really in difficult circumstance. [#02] Providers in the academ ic healthcare setting agreed that while this could be a problem, there were also efforts to ensure that patient preferences with regards to who they saw was respected. In addition, they also said that they tried to build a relationship with the patient as care with the aid of electronic patient records system. Provider: We do give you the choice of seeing someone or not seeing someone because you might like me and like two other people, but you might not like the fourth person or whoever it is . There are some patients who specifically ask not to see one of us, and we completely honor that . we try to give that choice and try to give that coverage. At least they're seeing the sa me fellow or the same attending. [#15] Provider: The way that we go about it is the good thing with the electronic system is it tell us who saw this patient before. If everything's great and this patient is being controlled for two or three years, we'd l ike to just go ahead and see them and ask them is it okay. If it's in the early stages, we try to have the same person see them. If they're having an issue, we try to always make sure that person sees the same provider. [#15] viewed narrated a bad experience she had that she considered attributable to the inconsistency in care provider. From her story, it was evident other factors like that individual provider prescription preferences and a lack of communication between provide rs could result from the rotations. Patient: for testing. Then they got to get your test results and all that. Me, where I get my care at, I see that one doctor . This week I may see one doctor here, next week I may see another one. In the health department they experience with them. (So how did that affect you?) Because they went to
154 changing my meds . one d you good, then one doctor change you to another medicine that he thinks see if this medicine is going to work . I think they migh t need t o talk more to each other about Care provider related factors Provider patient relationship There were four characteristics of the provider patient relationship that resonated in the narratives from both groups of participants as being important to the target population. They included [1.] accessibility, [2.] perception of care/commitment from the provider, [3.] personal knowledge o f patient and [4.] building trust in the relationship accessibility to the patient outside the clinic appointment and even after work hours. access to their provider often resulted in solving problems that could have led to a discontinuation of their medication. Providers could schedule for the patient to come in earlier than the booked clinic appointment and address their concerns (for exampl e side effects). Patients evidently gained a sense of Provider: When they come in, we sit down and we talk. I reassure them that I'm here. Here's my private phone number. If you have any ques tions you know you can call me. . Every HIV patient I have has my private cell. Each one has my own private cell if it's an emergency cuz I can open up this pharmacy if we need t o and get medicine for them It's just really important that they learn . that they know that you're accessible. [#11] Patient: I even call my doctor I get my doctor at 3 4am in the morning . I have her direct number . She said, you can call me any time. If you get sick 2
155 A mutual point that was greatly emphasized was the demonstration of care and commitment by the provider. This notion that the care providers viewed themselves as stakeholders acknowledged by patients as critical to their response to care. Provider: They have to know that you care about them. If you can do nothing else that first visit, if they leave there if they do not understand that do what you ask 'em to do. If you can get that across to t hem over the first especially with this population. [#02] Patient: The thing is, she was more than a doctor. She was a friend, she cared. It was like . she had a caring attitude. She cared about how it would affect me; about me period. And that made a difference. She cared. She said I Consequent to showing care and commitment, patients agreed that they thrived more when their care was handled by a provider that knew them personally. In fact some patients w ould refuse to see a provider that they felt did not know them on a personal level. Patient: that that other nose congested and coughing, they already know they n eed to nip that in the bud right there, because I could go into other complications. So they go like pushing it under the rug she just got some congestion going on, ----to square one. Laying up in the hospital through the whole 9 yards, but if I
156 Providers acknowledged that it was important to know the patient in order to effectively care for them. Knowing the patient however entailed spending reasonable time with them and understanding not only their medical problems, but the context of their lives. They also perceived that knowing the patient gave the patient a sense of Provider: You have to know them . You get to know your patients. You figure out what their problems are Get to know your patients. Unders going on with them. Walk in their shoes as much as you can . . Getting to know your patients. They have to believe in you. They have to feel that anything in medicin They have to believe that you really want to help them. If they believe that, then great things can happen for them, because then that gives them the ability to start making changes in their life. Once they start making great things happen. [#02] Because of the historical distrust of the healthcare system by this population, providers said in their interviews that it was necessary to build trust with persons from of the provider to provide effective treatment. Patients in their narratives talked about the process of gaining t rust in their providers and how it inspired them to take their medications. Provider: trust you. It takes quite a while to establish that. [#06] Patient: it even though I was tired and everything. I just felt that they were trying to use me as a guinea pig . just to test out new medicines on me. But then help me. So if they say I needed the medicine then I must really do need the medicine. [#5]
157 Provider care approach There were many components of the care approach that participants from the care provider study sample touched on in their narratives. The care components that aligned with patient perceptions of what was important to them (patient centered) were the following [1.] being non judgmental, [2.] treating patient as a person, [3.] giving holistic care, [4.] physical touch (that to them signified a human connection), and [5.] positive re enforcement There was great emphasis by both providers and patients on providers havi ng a non judgmental attitude towards patients Persons in this population were described as being very vulnerable as a result of their historical, social and economic context and were therefore sensitive to any attitude that they perceives as judging them Providers said they took extra care to establish a non judgmental atmosphere in the care setting. One of the patients interviewed drawing from personal experience had some words of caution for care providers. Provider: T hey know that our clinics are a no judgment clinic . I try not to make it a situation where there's any judgment When we talk about risk factors, I know what decisions I would make had I been in your shoes. D on't ever feel like I'm judging you about anything. [#03] Patient: (To providers) Be more caring, more understanding, more generous, more wanna be treated. [#7] acknowledged by both groups as helping to facili tate medication adherence. Providers talked about t h e emphasis they laid on this with their patients; assuring them that any
158 concerns known. Patients who had their medication related problems solved were more likely to continue to take their medications. Provider: If they have barriers or reasons not to be on the medication, I try to overcome those through gentle suggestions . If you have a little side effect, I can probab ly fix it, maybe with the use of a little medicine. For instance, if you get diarrhea, I can give you a pill to stop that, and you can still take the medication successfully. [#02] Patient: [Are there any particular things that the doctors did that helpe d you?] Yeah, I would say that they ummmm . They were there for me, you know like when I would come in and discuss things with them and the problems I was having. They make it right. Like my meds and stuff. Sometimes, I might have some reactions from my meds, and they make it right . [#08] Effective care in this population was described by providers as one that was the impact of HIV disease on the patient beyo narratives, it was also clear that the issues that they struggled with was beyond physical health and included the emotional, social, economic and even spiritual aspects of their lives. When other issues in their li ves were addressed, patients were then more likely to focus on their health including medication adherence. Provider: you should be, because HIV because medical healthcare provider. You want to actually be coming across like a at home, and then, you know, and yes, inserting the HIV care into it. [#14] Patient: There was a time when I had no gas money to get here. And the car --but I had a good case manager that was here. She was the sweetest lady. She made arrangement for the bus to come and get me from my house ---money. When I had this (mentions a condition) she heard it one time, she came to my house, talked to me about it. And when I was in the hosp ital she came to see me and brought me a pretty little stuffed animal. [#06]
159 n t through the narratives of both providers and patients. Providers identified this as an important approach in caring for t h is populati on and patients likewise acknowledged the importance of being treated a s a person Provider: a person because they are a person. We all want to be treated the same. [#20] Patient: And every time I go to th e health dept. I get treated like a person instead of just a number. Physical touch was cited by a few of the providers as critical to care in this patient population. It was seen as a demonstration of care to the patient as well as a reassurance that the ir condition did not make them any less human or unworthy of care. One of the patients interviewed in the preliminary study narrated an experience that depicts the importance of human touch to a person diagnosed with HIV especially from a care provider. Pr ovider: When you come in contact with a person newly diagnosed with HIV pat them on their shoulder, it makes a big difference because they realize When you walk into a room and you not afraid to touch them. Even with my primary care patients, whe n I call ----difference when you have that communication of not being afraid to shake at them. It makes a big difference and it helps the patient open up more to give you that history you need from them. [#18]
160 Patient: back. Even when they are you that. To get up and come around that desk and reach out to them would be . it would be phenomenal . Because I never will forget I never wil l forget whe n they told me. And it was like there was three people there, not one of them touched me, except to shake my hand on someone who you have just told that they are HIV posi tive (voice breaks name) made me feel like I was somebody again. [#01] According to the care providers, any little achievement was worthy of celebration and could re enforce the positive health related behavior that led to it. One of the providers described how they would even celebrate a patient showing up for a viral load was undetectable was said to motivate them to remain adherent to their medications Provider: you came . Yeah, and whether or not you're taking your medicine, I'm glad you came so they always fe el [#03] Patient: I think it was about ---[#06] Provider patient communication: There was also concordance between patie nts and providers on providers communicating at an ap propriate health literacy level. According to some of the care providers, the majority of patients in the target population are not highly educated, and many are unable to read or write. They reportedly were uncomfortable with disclosing their illiteracy and some patients tended to acknowledge that they understood the information being given them when in actual fact they may not.
161 Provider: visits anywhere that they say they understand but as soon as they step outside the door. [Provider #13] racy level was also advocated terminology. Provider: at I think as far as helping is concerned, if when people are training and going in and morning with one p having them reiterate think if we could do going on. [Provider#13 recommendation ] Patient: I go on the computer . online, and I read up on my medications. And if I someone who can break it down for me to understand it, because the words that the doctors use would say emm a medical doctor, but if you will tell me in a way, I would s Instrumental support patient education and counseling: This to some providers was the key to patient medication adherence. There was a lot of advocacy in their narratives for continued patient education and adhe interviews also reflected the impact of this provider role in changing disease and treatment perception and therefore enhancing medication adherence. Another form of instrumental support discussed was the provision of reminder t ools such as alarms and pill boxes which have been previously discussed.
162 Provider: rtant for them to keep the medications routinely being given rather than skipping doses. [#13] Patient: Well my health care provider sat me down and talked to me about it the if go down that road of being bad. I wanted to have a good health, and so far my health is good if you come down to my HIV. [#07] Current Practice versus Provider Perceived Patient N eeds The fourth objective of this study was to identify gaps between current care practices and what was care providers perceived as effective in meeting the needs of patients in the target population. There were some current practices in the HIV care process t hat were perceived as being more detrimental than beneficial to persons in the target population. These included 1. Immediate/urgent efforts to link patients to care ; 2. Excessive paperwork ; 3. Restrictive medication related policies: example medication cut offs for defaults in ADAP [Aids Drug Assistance Program] ; 4. Generalized versus individualized care related policies ; and 5. Inefficient dispensing of antiretroviral medications Immediate/urgent efforts to link patients to care: Active referral, though mor e effective than passive referral in linking people to care, it was perceived as being too quickly implemented in the process of care. The current practice of having a patient just diagnosed with HIV immediately initiate contact with agencies that provide financial assistance and facilitate the care process was not always successful in linking people to care Provider s were concerned about the timeliness of these e fforts since they were made at a time when the patient was still processing the news of their diagnosis. From the narratives, both care providers and patients agreed that the moment following diagnosis may not be the best time to try to get them into care. There were suggestions
163 that focus should be more on counseling the patient and getting her to a place where she could be more receptive to the information being provided versus trying to immediately enroll the person in care. Provider: in the office and call. That point in time is not the best time for that person to call. They're not ready. They're processing, "Oh, my goodness. I've just been told I'm HIV positive. What am I gonna do now? Oh, who's this person I need to talk to? Why do I need to call them?" I get that a lot. "I don't know why I'm calling you, but I have to call you. They told me I need to call you." . I feel like they get so much information when they're first diagnosed that, one, they're overwhelmed with their diagnosis, [cross talk 31:11] t wo, they're overwhelmed with the information that's gi ven to them and even scared [provider #10] Patient: back asked me how I felt about the whole thing. And you know at that moment I Recommendation: Providers recommended that following diagnosis, patients should be counseled and allowed some time to come to terms with their status before actively engaging them in the process of enrolment into treatment unless their health status was very severe and required immediate treatment. Provider: They need to be told they're HIV positive and a counselor right there with them to talk through or br ing a family member with you that you're really comfortable with . so they're not in this room, sitting there by themselves, given this diagnosis shocked and, "Oh, my gosh. What am I thinking now?" They need a little bit of time to process that. Let 'em go home after they speak to a counselor or whatever. Come back. Call 'em back the next day. "How are you doing? What's going on?" Maybe two days later, call 'em back and say, "Okay. We need to get you into care. This is really important." The t hing is, HRSA, we have a lot of really strict guidelines now about getting newly diagnosed people into care super quickly. [Provider #08]
164 Excessive paperwork: To obtain financial assistance for healthcare, PLWHIV were required to meet certain eligibility criteria based on income level, family composition and employment status. Majority of persons in the target population were usually eligible for these services. However they were required to re certify their eligibility every 6 months. This re certificatio n process involved filling out paper work and returning same in a timely manner to maintain continuity of care. While some patients in this population were good with doing this, some others had difficulties keeping up with this requirement. Some of the iss ues included i. Not receiving the forms because of frequent movement from one place of residence to another; ii. Difficulty filling the forms due to literacy problems (case manager would usually help out those who could not read or write but it was still a cumbe rsome task for the client); and iii. Simply forgetting because of other priorities in their lives especially care giver responsibilities and financial burdens. Provider: It slows the process down in my opinion. I have to keep my mouth shut about that. I d paperwork to people who are already overburdened and many of them are improving their quality of services, or is improving their getting any cut that out . It bugs me, b all hung up on it because some big wig in state decided this was gonna be such a won derful thing. My attitude is how is extra paperwork and slowing ve added layers of paperwork to what I have to do, which again keeps me from taking care of my clients.[Provider #06] The point made by care providers is that six month re certification was not necessary since the economic context of most members of this population did not tend
165 to change much if all. Recommendation is that the re certification be done annually and the number of forms reduced. Provider: We've discussed changing the re determination for eligibility to every year from every six months. Their argument is, "Well, food stamps is every six months, so they can do it at the same time." Well, it's not always at the same time [laughter] their foo d stamps is. For a lot of our clients that are low income and have food stamps, if they provide proof of food stamps, then that waives a lot of the information that we have to get from them regarding their income. If they maintain their food stamps, which sometimes doesn't happen but for the majority they do, because that's a really needed service . . I feel like if we did it once every year, it might help. Then, it also might we might get a backlash of, "Oh, it's only every year now? Now, I really fo rget." You know? [Provider #10] Restrictive policies: To continue to receive drugs paid for by ADAP, patients were required to strictly keep up with their follow up clinic visits and laboratory tests. In addition they were under perpetual threat of havi ng their medication cut off if they missed picking up their refills. One of the care providers suggested that patients be given multiple chances and receive continuous patient education and counseling to help them understand the importance of medication ad herence rather than cut ting off their m edication supply Suspending dispensing of medication was viewed as sending mixed messages to patients since it seemed to contradict the core purpose of the medication counseling medication. It was thought to undermin e the whole message around the importance of medication adherence. Provider: being able to their medicine. we take care of them and all of that and I think it just crea tes problems right and left h to keep getting your gotta
166 It does frustrate patients. It upsets them and that comes out ways. [Provider #17] Generalized versus individualized care related polici es Some providers viewed some of the policies as not being patient centered and the care protocol as being insufficient in their flexibility to accommodate specific needs of patients. When strictly implemented, some rules were viewed as doing more harm t han good for individual patients. Provider: friendly . the system just does not make it bad. [Provid er #17] The recommendation was that much as rules were necessary, room should be made for exceptions with the larger objective of achieving better health outcomes for this population. Provider: I think pharmacy is just now getting there to the point wher e I can call a doctor and be, like, "It's just not happening. I know you want her to take one twice a day, but she's not doin' it. It's not gonna happen, so find another way because telling her and then watching her not do it is pointless." . I think with women I'm giving them listening to what is the barrier I think is key. Yeah. "Why is it that you don't wanna do it?" Being honest and making it very clear, "I'm gonna try to find another way? What is it about this way that you don't like? What is it about this drug that doesn't make it happen?" rather than just watching someone decline and then yelling at them about it cuz I think that a lot of times women if it doesn't work out, they just don't do it. [Provider #20] Inefficient dispensing of ant iretroviral medications: A care process that was considered harmful was the partial dispensing of an antiretroviral regimen consisting of
167 more than one drug. A care provider described an undesirable practice of giving a patient some of the drugs prescribed and asking them to come back for the other(s) because it was out of stock Provider: We have pharmacies who will give patients two out of their three Provider : A lot of times, they come in and get one, and two, we're out of stock. They gotta come back. We try to make sure that that doesn't happen. [Provider #20] The recommendation was that sufficient pills be given to at least cover the period the patient has to wait before getting the complete refill. Provider: to bring in their pill bottles so you can see to You know recommendation ] Another issue with medication was policies about replacing lost medication. Reportedly, getting medicatio ns to replace legitimately lost pills was very difficult as current policies did not allow for such augmentation separate from the usual refill. Provider: An average HIV regiment's about three grand a month. It's not cheap. You and I both pay for it, bu t we're not perfect and sometimes people legitimately lose their drugs. Either you leave it on the subway or as someone happened yesterday, she left it in her car and it got stolen. Well, in New York if I had that happen to me, I would call Medicaid and say, can put like a seven in their computer, hand it out, and then give it to them. Down in Florida, forget about it. If you get a police report and you gotta prove it, and by that time, the damage will be done . Yesterday I was able to fortunately, the time that she lost it, I still could fill it but it was really a nightmare. See, I think it's harder down here. [Provider#11]
168 Other recommendations from care providers included peer education/ navigation and patient advisory groups. Peer education & peer navigation : Many of the care providers were not knowledgeable about the role of peer navigators in HIV care. Some of the providers were aware that such services existed but did not have a first hand experience of how this service worked or the benefits to persons living with HIV. However, they acknowledged (and some recommended) that having persons living with HIV included in the process of care would be beneficial especially for this population. Provider: I just found out in another conference that there are peers who have HIV volunteers who are willing to talk, and I think we have to make more use of them. I didn't even know . [Provider #19] Patient: doing positive things first of all, that will kinda take the stigma away because you feel so alone when whaa [Patient #01] Patient Advisory Groups : One of the providers shared an experience that she said enhanc concerns and needs. providers some insight into their needs and the assessment of the care being given to them was thought to be potentially useful in evaluating quality of care. Provider: They bring panels of HIV patients just for us to hear their stories: What would you like us to do? What 's the worst interaction you ever had? What's the best interaction you ever had at any pharmacy? . just to give us an idea of if it is appreciated, cuz we don't get to hear that from our patients all the time. That we feel it's a service worth speci alizing, cuz you can't sell what you don't believe in . We do that twice a year. We go
169 down. They bring different panels. Some of the patients are repeat patients, and we know them. [Provider #20] Summary of Findings A conceptual model was develope d using the data collected from the interviews conducted with health care providers. The model was similar to the model developed components that interact to influence linkage to care and medication adherence in the target population. The differences lay mostly in the specific issues identified within each category and the perception of how some of the sub categories (or themes) were related. For example th ough there w e re similarities in provider and patient perceptions of the phases of the patient illness experience ( Figures 4 1 and 4 2, also T ables 4 10 and 4 11) there were subtle differences in how patients transitioned through those phases A key difference was the inclusion of the socio economic context of the patient in the conceptual model of provider perceptions. The socio economic circumstance of patients in the target population was perceived by providers as underlying most of the factors considered as barriers to care and medication adherence in the target population. be a more linear process with patients progressing from the initial phase of denial to a state of acceptance of their HIV status. Patients then reportedly went on to perceiving themselves as having control over the disease. This was usually as a result of increased knowledge or a sense of empowerment that came with disclosing their HIV status to other people and/or being open about it. Then there was the point of
170 realization that their lives had some purpose and that they were in some way relevant to others. From the provider perspective, the illness experience was viewed slightly differently in that patients were se en as going from denial to acceptance but the points of perceived control and self disclosure were perceived as probable but not necessarily routes to the point where patients were perceived as being motivated to stay in care and take their medications. Wi th respect to patient characteristics, mental health issues were identified by care providers as having significant effect on patient care considering the impact on management of dise ase. From the provider perspective, mental health was associated with domestic violence, physical/ sexual abuse, and substance abuse as an addiction. On the other hand, patient participants talked about depression mostly in association with denial and its role in medication adherence, but other psychiatric conditions were not mentioned. Substance abuse was also used as a coping mechanism by some persons versus being strictly a pre HIV diagnosis addiction. Other patient related factors that drew contrasting perspectives were faith in God and characteristics of the medication regimen. Faith in God while acknowledged as a factor in patient wellbeing was not regarded by providers in the context of enhancing self efficacy in behavior change. Diff erent characteris tics of the regimen were identified by providers and patients respectively. While providers cited the complexity of the regimen as a barrier, patients were more concerned with chronic medication use and reported a sense of being overwhelmed by the notion o f a never ending regimen.
171 For health care system and provider related factors, care providers interviewed touched on all the areas that patient participants considered important or of influence in their health related behavior and also identified transport ation as a major barrier. Providers were also considerably knowledgeable about aspects of care and approaches that were important to and preferred in this patient population. Gaps in current practices that were thought to affect patients in this populatio n were mostly policies that did not make accommodation for unique patient challenges including literacy and unstable housing. Peer navigation, utilization of patient advisory potentially effective intervention strategies to enhance medication adherence in this population alongside making policies more patient centered. individuals, care provider s had a broader perspective of barriers and facilitators of medication adherence in this population and could make distinctions between sub groups within the target population Therefore, some factors identified were more specific to some subgroup s of pati ents while not necessarily applicable to all
172 Table 4 1 Summary of prov characteristics Professional Discipline Nurse Practitioner/Registered Nurse Pharmacist Physician Public Health Professional Social Worker Community Health Worker Number 3 3 8 1 5 1 Primary Functional role in HIV care Clinician Nurse Case Manager Pharmacist 10 2 7 2 Primary employment setting* State/Local Health Department Academic Health Center Private Practice Not for profit Organization Specialty Pharmacy Retail Pharmacy Outreach clinics 7 8 3 8 1 1 1 Care site location** Rural Suburban Urban 14 19 9 Gender Male Female 7 14 Racial/Ethnic group (self identified) Caucasian (non Hispanic) Asian/Asian American (non Hispanic) Latino/Hispanic (White) 16 3 2 Age Category < 30years 30 39 years 40 49 years 50 59 years 60 69 years 1 8 1 3 8 *Some care providers are employed by multiple agencies ** Some providers work in more than one care setting
173 Table 4 2 Category 1: Socio economic context themes and summary of perceptions A. Income Level B. Care giver role/Financial responsibility C. Instability Job Relationship Housing Incarceration D. Education/ literacy E. Lifestyle High risk sexual behavior [multiple partners, unprotected sex] Substance abuse [alcohol, illicit drugs] F. Domestic violence/ sexual abuse G. Life changing traumatic event economic context The social context and economic burden borne by members of the target population reportedly makes them more vulnerable to certain lifestyles, employment conditions, living circumstances and abusive situations; all of which present barriers to HIV care and medication adherence. Less education/ lower literacy level appears to be correlated with cognitive ability (in understanding HIV disease and treatment); and is associated with poor adherence regardless of race/ethnicity. Persons who are more educated and have good jobs (earned higher income) appear to have a better understanding of the disease and treatment, have better coping skills and are therefore more likely to be adherent to their medication. African American wome n living with HIV however were more likely than not to be in the lower income stratum and have low educational attainment/ literacy level. Persons in the target population commonly bore the financial and care giver responsibilities in their families These responsibilities took priority over their self care of HIV disease. In the target population, instability [relationship, job, incarceration, and especially housing] was perceived to be a significant barrier to medication adherence. Substance abuse was thought to be more prevalent in a sub group (usually younger patients) of the target population and therefore was not considered a significant barrier in the general target population. Traumatic life changing events like the death of a loved one was obs erved to impact adherence behavior negatively.
174 Table 4 3 Category 2: Pa tient illness experience themes and summary of perceptions A. Denial 1. At diagnosis 2. Asymptomatic 3. Undetectable viral load B. Acceptance 4. HIV knowledge/understanding 5. Faith in God C. Perceived Control of Disease 6. Perceived efficacy of treatment 7. Clinical Outcomes [CD4 count, viral load] D. Disclosure E. Motivation 8. HIV knowledge 9. Maintenance of a simple regimen 10. To see their children grow up 11. Care giving responsibility [children, elderly] 12. Perceived efficacy of treatment 13. 14. Faith in God/ spiritual encounter Denial is a common experience immediately following diagnosis of HIV. Persons in denial are unlikely to follow through with linkage to HIV care and/ or adherence to treatment regimen. Denial and acceptance of status are not necessarily static states p ersons may fall back into denial when they become asymptomatic or their viral load becomes undetectable especially if they have a poor understanding of HIV disease. Denial and medication adherence are not necessarily mutually exclusive. Some persons in the target population may take their medication and still be in denial. Denial is more common among persons who did not expect to be infected with HIV; persons who en gage in risky sexual behavior seem less in denial and more accepting of their diagnosis, but do not necessarily perceive themselves as having control of the disease. Acceptance of HIV status usually occurs over time, which period varies from person to per son and is associated with change in disease perception. Persons who have accepted their status are more likely to stay in care and take their medication.
175 Table 4 3. Continued With the acceptance of the diagnosis, persons in this population are more likely to disclose their status to someone else and therefore have more social support available to facilitate self care. Perceived control of disease is thought to be a function o f adequate knowledge and understanding of HIV disease and treatment resulting from continuing patient education. Perceived control is reinforced by efficacy of treatment and the experience of positive health outcomes (no sick days, no hospitalizations, e tc.). Persons who stay adherent to their prescribed treatment, usually have some motivation to do so (eg. children and care giver responsibility to elderly relatives). Providers facilitate medication adherence in this population by determining potential
176 Table 4 4. Category 3 : Mental and emotional health themes and summary of perceptions A. Psychiatric Disorders Untreated pre existing conditions HIV disease progression B. Depression HIV related Pre existing C. Emotional Distress Anxiety, Shame, Guilt, D. Living in fear Disclosure/Exposure of status Being Ostracized/Abandoned Stigma/Discrimination Etiology: Substance abuse Physical/sexual abuse HIV diagnosis Mental health issues are perceived to be prevalent in a sub group of the target population and thought to pose significant threat to medication adherence. Psychiatric disorders are perceived as being associated with substance abuse and history of physical and/or sexual abuse at both childhood and adulthood in this population. Prior to HIV diagnosis, these are often untreated. Mental health illnesses (including depression) are also commonly assoc iated with HIV diagnosis and outcomes of HIV disease progression in this population. Mental health services even where available may be under utilized because of the stigma associated with mental health illness
177 Table 4 5. Category 4: Support sub categories themes and summary of perceptions A. Social Support [Emotional] Family Church B. Instrumental Support Healthcare providers Supportive services (housing, transportation) Assistance programs (Ryan White case management, counseling; ADAP, Pharmaceutical companies payment for antiretroviral drugs) C. Peer Support [Affliational support] Peer navigation Support group Having some form of support is perceived as significant in facilitating adherence to antiretroviral treatment in the target population. Information, tools and assistance provided by healthcare professionals and support services may be more distal with re gards to influencing care seeking and medication taking behaviors. being more proximate in terms of facilitating adherence in this population. Social support is contingent on self disclosure of HIV status. Generally, members of the target population are hesitant to disclose their status and therefore tend to lack the needed support. However, they usually receive support (from family) when they disclose their status. Support fr om other persons living with HIV (PLWHIVs) may be pivotal in changing adherence behavior as members of the target population may be more receptive to counsel from persons who they perceived to be able to identify with their specific illness experience. Including PLWHIVs in the care process can make navigating the health care system much easier for newly diagnosed patients from this population. Interaction at support groups may provide some premise for engaging in vicarious conditioning (observational le arning) with regards to care seeking and adherence behavior.
178 Table 4 6. Category 5: A ccess to care themes and summary of perceptions A. Availability of health care services Rural versus urban Under utilization [Stigma, lack of information] B. Affordability of health care services Insurance coverage Financial assistance C. Accessibility to healthcare facilities Transportation a. Availability b. Under utilization [Stigma, Waiting time, Co ordination] A considerable proportion of the target population (likely a function of SES) is resident in rural and semi rural areas where there are limited resources (particularly public transportation) and fewer HIV care related services (eg. mental health, substance abuse rehabilitation). Relevant services where available may not be accessible to persons who do not have the necessary insurance coverage and/or are not eligible for assistance programs that pay for or provide those services. Services may be under utilized because patients are unaware of these services (eg. private practice settings that undertake care for the uninsured, assistance programs that undertake payment for relevant care, social security bus) or because patients are unwilling to acce ss them because of perceived stigma (mental health services, Medicaid bus).
179 Table 4 7. Category 6: T he healthcare system themes and summary of perceptions A. Complexity and Inefficiency of the care process B. Fragmentation of the System C. Characteristics of the Care Setting D. Resources Excessive paperwork Restrictive policies Eligibility re certification Insurance/billing Medication dispensing Enrolment into care (waiting list; retention policy) Passive referral Co ordination of care (co morbidities, type of insurance) Integration (care providers accessing records, information on con concurrent treatments) Privacy Consistency of the care provider Waiting time/Face time with care provider Availability Allocation In providing care to persons living with HIV (PLWHIV), the healthcare system is perceived as being considerably focused on cost savings but relatively effective in linking persons who are newly diagnosed to care services. The policies (especially for eli gibility and referral), the care process and the way care is structured are (with follow up visits and medication) for sub groups of persons in the target population. The paperwork involved in the process of care for persons living with HIV is perceived as excessive and often overwhelming for members of the target population who are uneducated and/or have low literacy levels. Some policies are perc eived as being more restrictive than inclusive with respect to engaging and keeping persons in care and enhancing medication adherence in this population. Policies that c ut off medical care services (for example patients about the necessity of medication adherence to their health outcome. The fragmented structure of care interferes with continuity and/or comprehensiveness of care especially for persons in the target population who receive care fr om multiple providers; with consequent impact on medication adherence. Care experiences of long waiting times during clinic visits can be significant barriers; whi ch may result in loss to follow up. Persons in the target population are more likely to stay in care and be adherent when a relationship with their care provider is established. Building a provider patient relationship is more easily facilitated by havin g a consistent care provider and sufficient interaction per clinic visit. In addition to resources being very lim ited in this local setting, there are beliefs that these may not be efficiently allocated for the best care outcomes.
180 Table 4 8 Category 7: Provider patient interaction themes and summary of perceptions A. Provider Patient Relationship Accessibility Knowledge [of patient] Rapport Trust Care/Commitment B. Care Approach Holistic Patient centered [Individualized, Patient preference, Patient participation in decision making, accommodation, appropriate timing, negotiating, etc.] A ddressing problems/offering solutions [empathy/ sympathy, eliciting information ] Time investment Incremental goal setting Collaborative effort Vicarious conditioning Treating patient as a person [Physical touch, Respect] Positive rei nforcement C. Provider Patient Communication Non judgmental attitude Active listening patient interaction The key characteristic being. Other features of the provider patient relationship perceived to be important to the target population and therefore contributory to enhancing care seeking and adherence behavior include i. Being readily accessible both at the care site and outside clini c hours; ii. Developing a personal relationship so that care can be tailored to meet patient specific needs; iii. Building rapport with patient so that that they feel comfortable enough to participate in their care [ask questions, give information that may be relevant to their care, etc.]; iv. Building trust historical and personal experience of the healthcare system has led to some level of mistrust. Patients also need to perceive their care provider as knowledgeable and competent in managing them.
181 Table 4 8. Continued patient interaction Given [the complexity of ] their socio economic context, the care approach that will be most effective in achieving desired outcomes needs to take into account non m edical aspects and therefore should be holistic and patient centered rather than disease centered. With regards to care approach, the following perceptions were identified from the data analysis. It is important to this population that they perceive themselves as being treated with respect and acknowledged as autonomous individuals as opposed to feeling like they are being treated as just another patient. Care for some members of this population may be more time intensive than for the average patient living with HIV. Time is needed to establish a relationship, build trust, educate and counsel. Effective communication skills can help identify patient needs and levers include active listening and motivational interviewing. Focusing on small inter mediate goals may achieve more results. For desirable lifestyle changes (substance abuse, prostitution) total abstinence be more achievable and more receptive to the patient. Communication and collaboration among all care providers seeing a patient are helpful in coordinating care for this population and ensuring that problems are identified and adequately addressed. Talk ing to persons in this population about the success stories of other patients may motivate them to pattern their behavior after the examples a sort of vicarious learning by proxy. Communication from the care provider needs to be perceived as non judgmen tal. Celebrating small successes such as making it for a follow up visit, when celebrated serves as positive reinforcement and could enhance adherence in this population.
182 Table 4 9. Category 8 : P atient characteristics themes and summary of perceptions A. Patient Knowledge & Understanding HIV knowledge [prior to diagnosis] Patient education/counseling Cognitive ability B. Patient Disease/Treatment Perception Normative beliefs Patient education/counseling Medication related experience [side effec ts; perceived efficacy] C. Patient Responsibility/Self Management Patient participation in care [passive vs. active involvement] Dependence on care giver [cognitive functional ability] Maturity [Age] coping D. Self efficacy Lifestyle change [motivation, maturity] Medication adherence [complexity of regimen, side effects] Most persons in the target population have little or no knowledge of HIV at the time of diagnosis. Perception of H I V disease and antiretroviral treatment is often shaped by misconceptions rooted in normative beliefs and reinforced by invalid information from sources outside the healthcare system such as relatives and friends. V disease and/or treatment is perceived as significantly influencing adherence behavior. understanding of HIV may lead to change in perception of HIV disease and/or treatmen t; resulting in better adherence to prescribed regimen. HIV knowledge alone is not always sufficient to motivate most patients in the target group to adhere to their prescribed regimen some patients who are assessed as being knowledgeable are still foun d to be non adherent. Non adherence in these cases may be attributable to other barriers. In a subset of the target population, patient education does not appear to increase HIV knowledge or change adherence behavior. Persons in this subgroup are thought to have low cognitive function that may limit their ability to adequately process and understand the information provided. Self management may not be effective in achieving desired health outcomes. Adherence in this subgroup is more likely if a care giver (who understands the impact of antiretroviral treatment on HIV disease) undertakes responsibility for their care.
183 Table 4 9. Continued The experience of side effects in the absence of adequate patient education may beneficial. Persons who take responsibility for their care are more likely to actively participate in their care process [pro active in monitoring progress, asking questions, involved in decision making] and tend to be more compliant in taking their prescribed medications. Persons who are more educated and have more stability in their lives (steady income, housing) are more likely to take responsibility for their care. Older persons in the target population are also more likely to take responsibility for their care compared to younger patients who tend to be more dependent on a care giver. Persons who had some motivation were more likely to have the self efficacy to make changes that enhanced adherence behavior. Maturity was associated with self efficacy in this population. Simpler regimen was also associated with increased self efficacy. Some patients (in spite of conti nued education and motivation) simply did not have the self efficacy to take their medica tions.
184 Table 4 10. Summary of comparative analysis : patient and provider perspectives Contrasting perceptions a. Dynamics of the transition from states of denial to acceptance b. Necessity of perceived control of HIV disease c. Motivation for adherence versus finding purpose/relevance Patient Characteristics a. Substance abuse as an addiction versus substance abuse as a copi ng mechanism b. c. The etiology of mental health problems d. Cognitive ability related to self management e. Faith in God as a facilitator of self efficacy f. Complexity of regimen versus chronic administration as a significant barrier g. Perceived significance versus actual experience of peer support in HIV care The Healthcare System a. Access to care Transportation b. Healthcare process Restrictive policies Excessive paperwork c. Healthcare structure Fragmentation Privacy in care settings Provider related Factors Provider patient communication Information overload Redundancy of information Language barrier Socio economic Context a. Income level b. Care giver role/ financial responsibility c. Instability (particularly housing) d. Education/literacy e. Lifestyle f. Domestic violence/ sexual abuse g. Life changing traumatic event
185 Table 4 10. Continued Similar perceptions Patient illness experience Different phases following HIV diagnosis a. Denial b. Acceptance of HIV status c. Perceived control of HIV disease d. Self disclosure of HIV status e. Motivation (provider) / Finding purpose/relevance (patient) Patient characteristics a. b. Medication related experience (side effects) c. Patient responsibility/ self management (passive patient role) d. Perceived social support e. Perceived peer support f. Self efficacy to make lifestyle changes The healthcare system Access to care Lack of knowledge of available services Healthcare Process Active vs. passive referral Healthcare structure consistency of healthcare provider Care provider related factors a. Provider patient relationship Accessibility Care and commitment Personal patient knowledge Building trust b. Provider care approach Non judgmental attitude Treating pati ent as a person Holistic care Physical touch Positive re enforcement c. Provider patient communication Appropriate health literacy level d. Instrumental support Patient education and counseling Adherence tools (pill boxes, alarms, reminders)
186 Table 4 11. Summary of Current practice Recommendations Immediate/Urgent efforts to link patients to care state concerns Adequate counseling over time Excessive paperwork [6 monthly re certification to maintain eligibility for aid] Annual re certification Fewer forms to fill Restrictive policies [medication cut offs for defaults in ADAP] Offer solutions/ suggestions [using motivational interviewing] Continue patient education to increase patient knowledge and understanding Care related policies/protocol that are not patient centered More flexibility in implementing policies and protocols Prioritize tailoring care process to meet patient needs and preferences rather than adherence to policies/protocol Policies about dispensing of antiretroviral medications Partial dispensing of antiretroviral regimen Non replacement of lost medications patient over while stock is replenished Ensure that medication is always in stock Replace lost medications especially for a one time occurrence Other recommendations Peer education and peer navigation as part of HIV protocol of care Implementation of Patient Advisory Groups [PAGs] Read back/Teach back in patient communication
187 Figure 4 1 Conceptual model: Care provider perceptions of care seeking & adherence behavior among African American women living with HIV/AIDS
188 Figure 4 2. Conceptual model: Care seeking & adherence behavior among African American women living with HIV/AIDS p atient perceptions
189 CHAPTER 5 DISCUSSION AND CONCLUSIONS In th is chapter, the key study findings are discussed for each study objective. practice to ensure more patient centered care. F uture research directions are also discussed. Stu dy Objective 1 The first study objective was to derive a comparative model of medication adherence behavior of African American women living with HIV/AIDS based on health care provider perceptions and experiences. The conceptual model was developed based on care provider perceptions and experiences as narrated in their interview s ( F igure 4.1 above). The model is similar to the conceptual model developed from ( F igure 4.2 above) both had the same basic components interacting to influence the treatment process in the target population the patient, the provi der and the healthcare system. In addition to these components, the model developed from provider perceptions included the socio economic context of the target population as an underlying factor enabling many of the barriers to linkage to care and medicati on adherence in the target population. This component may not have been and participants may not have readily made the connections between their social and economic circumstances and the barriers/facilitators of adherence to their medications.
190 Other differences in the models were the mental and emotional health element as well as sub themes under the healthcare system and provider related characteristics. These are all discussed in mo re detail in subsequent sections. Study Objective 2 The second study objective was to compare patient perceptions and health care provider perceptions of factors that help to facilitate early linkage of African American women newly diagnosed with HIV to care. Care provi ders identified patient related and healthcare system related factors that they considered to influence early linkage to care in the target population. These included the following 1. ersus being in denial 2. Active versus passive referral 3. Housing as a major socio economic factor acceptance of HIV status: According to provider perceptions, p atients who are still in a state of denial are not likely to engage in care even when linkage has been facilitated by care providers. The key factor that providers perceive d to drive the care seeking behavior of these patients is the perception of HIV disease and /or treatment The lack of HIV knowledge and misconceptions about the disease was reportedly based on normative beliefs the patients had prior to HIV diagnosis. This mirrors the perceptions of the patients interviewed in the preliminary study regarding barriers to early linkage to care M embers of the target population interviewed reported that they did not seek care when they are initially diagnosed because they are in denial. This is also consistent with findings from other studies where denial of HIV status has been cited as a major barrier to entry into HI V care
191 (Konkle Parker, Amico & Henderson, 2010; Jenness et al., 2012). The longer newly diagnosed persons stay in denial, the longer it takes for them to enter into care. Provider: The people that aren't ready to accept their diagnosis and be in care, I f eel like those are the people that really need the mental health counseling services. They really need someone to talk to, to help get them through that diagnosis and make them realize, "It's okay. You can live through this." What happens to them? I do n't know. Sometimes, we get 'em a year later. Sometimes, we get 'em six months later. [Provider #10] Patient: [ Question: So in those 6 months (following diagnosis) what were you thinking? How were you living?] In that 6 months period of time I was just b lank. I was trying to numb everything out. I to get it out of my mind. With that I did drugs to keep it out . yeah, to wash it away. [Patient #03] According to findings from a stu perceptions may be an additional step to acceptance of HIV status for patients to enter into care. Fagan et al. in their investigation focused on persons living with HIV who had never been in care. One of the reasons that some of the participants in their study gave for not seeking treatment was the belief that though they were seropositive, medical care was not necessary if one was not sick. Hence even though these patients had accepted their status, they did not see the need for care since they had not experienced any symptoms of disease yet. In this dissertation research, neither providers nor of the necessity of HIV treatment. This was noted and has been included fo r investigation in future research. Healthcare system related active versus passive referral: A key factor perceived as facilitating early linkage to care in this population is the initiation of an active referral process following HIV diagnosis. Care pr oviders (specifically case managers) describe d an engagement process whereby patients newly diagnosed are
192 asked to call supportive services (to determine eligibility for financial aid with treatment, housing, etc.) right there from the care setting where t hey were told o f their status. An appointment was then quickly scheduled giving the potential client the option of a home visit or meeting in any other venue of mutual convenience. On certification of eligibility, clients may then enroll in care at the C ounty Health Department. While patients interviewed in the preliminary study did not explain the process in this detail, those who entered care soon after diagnosis were generally those who were given guidance on how and where to access care, and had an ap pointment fixed for them to see a care provider. These were generally those who had their diagnosis done at the County Health Department. Those who had their test results shared with them in other facilities ( for example drug rehabilitation center) were s imply told to seek medical care at the health department or other healthcare facilities. enrolled into care. However, there are concerns about the timing of this referral process. Most patients from the target population are described by both providers and patients as being in a state of emotional upheaval at the time they are told of their diagnosis. Thus for some of these patients, even when they were actively referred, there was no guarantee that they would follow through as most of the information given to them at diagnosis was unlikely to be retained. There are study findings that demonstrate that following HIV diagnosis, when referrals to HIV care and support services are faci litated for the patient by someone else who is designated with this responsibility (e.g. case manager), they were more likely to follow through with entry into care in a timely manner (Gardner, Metsch, et.al., 2005; Gilman, Hidalgo, Thomas, et.al., 2012). However, more
193 research is needed to determine how effective the active referral process is when initiated immediately after diagnosis in this population versus when the newly diagnosed person is more accepting of their status and more receptive to informat ion. Provider: "I was told I need to call here. The health department told me I needed . Right. Before I really get into, "Let me get all of this information that I have to get from you on the phone," I explain the process of, "Okay, in order to g et your services for free at the health department, to see the doctor, to get your medications for free, you have to come to this program. I will meet with you in person. We'll go over this paperwork. I need all of this information. Then, I will refer you and point you in the direction of the services that you need." Then, they usually have a little bit of a better grasp of it. Then, when I meet with them in person is when we really can sit down and talk about, "Okay, you've been diagnosed. Now, this is your next step. This is what you need to do. Here's what I'm gonna do to help you along the way." [Provider #10 explaining the referral process ] Patient: When I got the news they immediately made the appointment for me because see at that time I wa s living out in ----County at that and they meds. [Patient #08] Housing opportunity : Another factor perceived by care providers as facilitating early linkage to care is housing. As par t of care services available to PLWHIV, there is opportunity for obtaining assistance for rent payment through a program called the Housing Opportunity for Persons living with HIV/AIDS [HOPWA]. There we re suggestions that persons in this population are som etimes motivated to enroll in care for the purpose of this benefit. Policies require that they be enrolled in care to be considered for this service. However, participants in the patient study sample did not mention housing opportunity as a motivation for early linkage to care. Provider: or where some clients will find out about the certain out what they can get from it. Not to help themselves, or to be in care. [Provider #08]
194 Research has shown that stable housing enhances positive health outcomes among persons living with HIV (Kidder et al., 2007; Kidder et al., 2007a; Parashar, 2011). In a systematic review of studies focused on examining the association between housing and medication adherence; utilization of health and social services; health status; and HIV risk behaviors among PLWHIV, there was a significant positive association betwee n housing stability and health related outcomes (Leaver, 2007). As was observed by care providers in this study when PLWHIVs are homeless, their risk for adverse outcomes increases. In the literature, h ousing is considered an important support mechanism i n HIV care for vulnerable populations (Leaver, 2007). Study Objective 3 The third objective was to compare patient perceptions and health care provider perceptions of factors that influence medication adherence behavior of African American women living w influencing medication adherence behavior are for the most part in concordance ( T able 4 10). The factors on which both patients and providers are in agreement as being associated with medicat ion adherence are as listed in T able 4 11. However the key provider perceptions not reflected in patients narratives that may be of significance in medication adherence behavior in this population are those on the socio economic context of the target populati on and concerns around mental health. Other issues centered round patient illness experience, patient characteristics, the provider patient interaction and the healthcare system
195 Socio economic C ontext Providers interviewed emphasized the significance of socio economic circumstances. While these included components commonly used to assess socio economic status ( SES), it went beyond educational level, income and employment. Other factors such as t giver, bread winner), substance abuse, prostitution, incarceration, and domestic violence were reported as socially and economically. The socio economic context was therefore perceived by providers as not entirely synonymous with socio economic status which association with medication adherence has been investigated in other studies discussed in the following section. Socio economic status & medication adherence: From the literature, it is not quite ce rtain that there is a significant association between socio economic status (SES) and medication adherence in PLWHIV. A systematic review of studies, examining the impact of income and education on HIV medication adherence did not find any conclusive evide nce of this association (Adler & Newman, 2002) The study did observe a positive trend between SES components education, income and occupation and adherence in many of the reviewed studies. Generally SES has been shown to be an underlying factor in thr ee major determinants of health healthcare, environmental exposure, and health behavior (Adler & Newman, 2002). Chronic stress associated with low SES is also believed to contribute to morbidity and mortality. SES components such as education and income explain some of the racial/ethnic disparities in health and therefore need to be addressed alongside trying to change individual health behavior such as medication adherence, but a lot still remains unexplained and more research is
196 needed to ascertain othe r possible factors that contribute to these disparities (Sudano & Baker, 2006; Kirby, Taliaferro & Zuvekas, 2006). Transportation as socio economic factor: There are several study findings demonstrating that lack of transportation is indeed a major barrier to accessing HIV care services especially for women living in rural areas (Sanquist et al., 2011; Kempf et al., 2010; Moneyham et al., 2010). The issue of transportation can be viewed from two perspectives. It can be considered a structural level problem in terms having a public transport system in place to facilitate mobility especially in the more rural areas. It may also be considered a problem at the individual level where moving from one place to another was limited on account of one not having a car. Most of the women in the target population were described by the providers as being in the low er income bracket and had no car. If they lived in an area where there was no viable public transport system, they had to rely on relatives who they may not want to know their HIV status or use assisted transportation if available and if they qualify for it. Lack of transportation was reported as not only affect ing their clinic and laboratory appointments, but wa s also a barrier to obtai ning timely refills. For the later, mail order pharmacies have reportedly come to the rescue, but this service was not always patronized especially if the patient had not disclosed her status and therefore did not want other family members at her home to begin to ask questions when their pills arrived in the mail. However, from the literature, t here are concerns that though convenient, cost saving an d having potential to enhance medication adherence (where transport is a problem), patients using mail order pharmacies may be losing out
197 on the benefits of face time and medication counseling with the pharmacist especially when they are newly diagnosed pa tients (Kibicho, Owczarzak, and Pinkerton, 2012). Patient related F actors Mental health & medication adherence: Persons with chronic illnesses, and particularly those that are considered life threatening, commonly experience some form of psychological dist ress, and patients with HIV/AIDS are no different in this regard. Research findings among those living with HIV suggest that women generally experience higher levels of psychological distress when compared to men (Kennedy et al., 1995; Rabkin et al., 1997) More severe symptoms of depression and higher levels of anxiety have been associated with HIV related stigma (perceived and internalized), perceived lack of social support and use of fewer active coping strategies ( Prachakul, Grant & Keltner, 2007; Catz et al. 2010; Vyavaharkar et al., 2010) These features are typically descriptive of African American women living with HIV, as corroborated by data from our study. The prevalence of mental health issues among African American women living with HIV wa s no t all attributable to having HIV. Care providers interviewed report ed that their medical history often show ed that many of these women had mental health issues like bi polar disorder and dementia prior to their HIV diagnosis. Findings from the study and co rroboration from literature suggest that some of these conditions may be as a result of domestic/partner violence, substance abuse and prostitution which have been associated with childhood physical and sexual abuse (Goodman & Fallot, 1998). Persons who ha ve a history of abuse tend to engage in high risk behaviors (multiple sexual partners, intravenous drug use) that make them more vulnerable to HIV infection
198 (Goodman & Fallot, 1998). Women living with HIV who have been abused are more likely to report symp toms of depression and anxiety, and more likely to have thought of al., 2005) From provider perceptions in this study, t here is a high incidence of childhood/ adult physical and sexual abuse among African American women. HIV diagnosis in this sub set of African American women was said to further compound their me ntal illness and greatly impact their care seeking behavior and adhere nce to their antiretroviral medication. Providers also reported that m ental h ealth services where available we re under utilized because of the stigma associated with mental illnesses. In the literature, t his is the case particularly in the more rural areas probably because everyone knows everyone else around. In a study by Reif et al. (2006), the investigators found that PLWHIV living in rural areas were less likely to utilize mental health services. In turn, living in rural areas was significantly associat being African American, Acceptance of HIV status: Denial was reported a s a common experience for most people following HIV diagnosis. Both providers and patie nts interviewed acknowledged that p ersons newly diagnosed with HIV are usually overwhelmed by multiple and mixed emotions including disbelief. Until PLWHIV ca me to ter ms with having the virus, they we re unlikely to be in treatment. However, where linkage t o care ha d occurred and persons diagnosed ha d been initiated on antiretroviral treatment, persons still in denial we re likely to be non adherent to their medication because it was a reminder that they we re infected by the virus. In another study, o vercomin g the denial
199 and becoming more accepting of their HIV state w as associated with gaining control in their lives and increasing self efficacy to effectively manage HIV which includes adherence to medications (Laws et al., 2012) Self disclosure & availabilit y of social Support: Several studies have associated social support with enhanced antiretroviral medication adherence (Gonzalez et al., 2004; Ammassari et al., 2006; Holstad et al., 2006). In the target population, perceived social support has also been sh own to be predictive of medication adherence (Vyavaharkar, Moneyham, et al., 2011). However, to receive social support PLWHIV need to disclose their HIV status. In the target population, providers reported that those who had disclosed their HIV status espe cially to family members usually receiv e d social support. In the literature, p erceived availability of and satisfaction with social support has been suggested as mediating the effect of depression in African American women living with HIV (Vyavaharkar, Moneyham, et al., 2011a). Depression is considered a key predictor of medication adherence in PLWHIVs (Wendorf and Mosack, 2013). As part of the protocol of care and in appreciation of the potential impact of social support on health outcomes, providers interviewed said they routinely encourage newly diagnosed (non adherent) patients t o disclose their HIV status to someone who they perceived as most likely to be accepting of the disclosure. The goal from the provider perspective wa s the availability of social support with the expected outcome of enhanced medication adherence and better quality of life overall. Consistent with literature, providers report ed that older pers ons from the target population we re more hesitant to disclose their HIV status than younger women (Foster and Gaskins, 2009). However, older women living
200 with HIV have a lso been found to have better coping skills compared to their younger counterparts (Miles et al., 2007) Patient Involvement/Self management: Considering the chronic nature of antiretroviral treatment, providers said that part of the care goal wa s to have p atients manage their own care. They report ed that p atients who took up the responsibility for their care or became involv ed in managing their condition we re usually more compliant with taking their medication. This involved being pro active with seeking in formation; asking questions about their treatment and the disease itself; and monitoring their those who were more involved in their care we re usually those with more educ ation and economi c stability and the majority of the target population do not fall into that category H owever, the y report ed that the more p atients perceive d themselves to be in control of their condition, the more pro active they became in managing it. S ome patients from this population we re described by providers as unable to engage in self management because of their low cognitive function or poor mental health. perspective, t his sub group of the target population wa s more effect i vel y managed on ART if they had a dependable care giver. mbers of the target population we re generally passive in their care process. From the interv iews with care providers there wa s a clear expectation of patients in this population to take responsibility for their care. In the literature however, there is some contrast to this expectation. A recent study by Nazione and Silk (2013) examined the intentions of providers to help patien ts and their self reported bias based on race/ethnicity and
201 (including having empathy) was influenced by their perception of patient responsibility; with increased perceive d patient responsibility leading to increased anger and reduced willingness to help. In that study, p interacted with patient race; with particular bias to African American patients based on on of patient characteristics (Nazioe and Silk, 2013) The passive role of this population may therefore be a response based on their percep tion of what the provider wants from them in terms of participation in care. Passive patient role may also be associ ated with perceived discrimination or classism; which are reported more with African American patients compared with Whites (Hausmann et al., 2011) Motivation: While external factors such as healthcare system and provider related characteristics are shown to have some influence in enhancing medication adherence in PLWHIV adherence to medication is largely perceived by PLWHIV as a patients and p roviders in this stu dy acknowledge d going on that culminates in a point where persons diagnosed with HIV have some motivation to actually take their medication (s) as prescribed and stay on treatment Motivational factors vary for individual s, but for this population care giver role, the desire to see their children grow up, experience of poor health (near death experience), increase in HIV knowledge and perceived efficacy of treatment wer e some common perceived motivators reported by provid ers Providers suggest ed that i nterventions by care providers to enhance medication adherence in this population may seek ways to help patients along the continuum of their illness experience to this point of autonomous
202 motivation where they are more likel y to be adherent to their medication. In the literature, m otivational interviewing has been projected as an effective intervention strategy in behavior change to enhance medication adherence in patients dealing with chronic conditions but especially for pe rsons living with HIV (Holstad, Dilorio & Magowe, 2006; Konkle Parker, 2001; Cooperman & Arnsten, 2005) Faith in God: The African American community is known for its religious beliefs and strong faith in God especially as regards his sovereignty and power over life and death (Johnson et al., 2005). As reported by patients in the preliminary study, p ersons diagnosed with HIV in the target population are in a very vulnerable state that often times than not made them gravitate towards the spiritual as a coping mechanism for their illness. Anecdotally, a couple of the providers acknowledged that those wh o had a spiritual inclination did better in terms of health outcomes. A search of literature found some evidence to support this notion. In a study by Kremer and colleagues (2009), HIV positive patients who were on treatment and believed in or relied on th eir spirituality to enable them to cope reported fewer side effects, fewer symptoms and better medication adherence. This suggests that those who express faith in God could be encouraged to maintain their trust in his ability to help them stay on their cou rse of treatment and minimize any associated adverse effects. African American women in particular have been found to be very reliant on prayers as a coping strategy (Coleman et al., 2006; Coleman et al., 2006a) Providers therefore, need to be sensitive t o this element (the spiritual) in the lives of the women in this population and integrate it into their care. Peer Support: The support available from other persons living with HIV (peer support) was perceived by both patients and providers as having some influence in
203 medication adherence. Providers suggest ed that persons in this population may be more receptive to encouragement, mentoring, counseling and/or education from someone who they perceived as not only understanding what it is like to live with HI V, but ha d also achieved control over the disease. In confirmation, patient participants acknowledged that encounters with other PLWHIV (especially persons with similar challenges) changed their perception of HIV and antiretroviral treatment and increased their self efficacy to stay in care and take their prescribed medication. There is limited literature on the efficacy of peer support based interventions on medication adherence in PLWHIV, but findings suggest that peer support is associated with higher ad herence levels (Simoni et al., 2007; Marino, Simoni & Silverstein, 2007). Peer based interventions have been considered a potentially useful strategy particularly in sub groups of patients with lifestyles (prostitution, substance abuse) that pose challenge s to medication adherence (Broadhead et al., 2002; Deering et al., 2009). Change in illness/treatment perception : In the target population, knowledge o f HIV and antiretroviral drugs wa perceptions of the di sease and the treatment w ere often shaped by misconceptions and normative beliefs, hence the reluctance to be initiated on antiretroviral medications and a plausible reason for non adherence when started on treatment. There wa s a general consensus from bo th groups of study participants that as patients gain ed more knowledge (primarily from their care provider) their perception of HIV and the treatment changed. Studies have shown that there is a correlation between patient HIV knowledge and medication adher ence (Weiss et al., 2003; Jones et al., 2013). As seen in literature, patient participants attest to HIV related knowledge aiding the change of their
204 et al., 2006). Ano efficacy of treatment for non adherent persons who had experienced an HIV related health condition which may have landed them in the emergency room or for which they felt they were g oing to die from and then had good treatment outcomes following a period of ART adherence. This wa for some persons in this population. Gao et al. (2000) in a study investigating the relationship between disease severity, health beliefs and adherence to antiretroviral medications found that patient who were severely ill had a perception of higher risk of HIV related complications being associated with non adherence when compared to patients who were as ye t asymptomatic. However, the investigators also found that this risk perception did not necessarily translate to medication adherence A distinctive factor th at patient participants identified as dramatically changing their il lness and treatment perception wa s the observation of oth er PLWHIV who had lived with the condition for many years and were perceived to ha ve relatively good quality of life This they readily attribut e d to taking their medications as prescribed. This to chang e their illness and treatment perception, but also increase d self persons as described above has been advocated for in interventions to enhance medication adherence in newly diagnosed patients (Decroo, et al., 2012). The i r study results suggest that a part from being a motivational factor, other PLWHIV they can help
205 the newly diagnosed patient learn the self management skills necessary for successful HIV self care. Medication related experience side effects: In this research, treatment perception was also associated with medication adherence mostly concerns about adverse versus efficacious effects of medication and beliefs about necessity especially for patients who had not experienced any HIV related illness prior to diagnosis. Patient beliefs about HIV medication have been associated with adherence (Horne et al., 2004; Hor ne et.al., 2007). Side effects we re identified as a major barrier to medication adherence; with some patient participants attesting to stopping their treatment because of the experienced effects. How ever, when adequate counseling wa s given prior to treatment initiation and care providers work ed with patients to amel iorate these effects, patients we re more likely to stay on their prescribed regimen. Side effects have been associated with non adherence in the general population of persons living with HIV (Ammassari, et al., 2001; Achappa, et al., 2013). Medication related experience regimen: A po int of subtle divergence in rriers to medication adherence wa s the overwhelming chronic administration which patients were more concerned with a s opposed to the complexity of the regimen that providers reported as a barrier It is however arguable that the regimen is more overwhelming when there are multiple pills and/or several doses to take daily. With simpler regimen, patients were reported b y providers as being more likely to adhere to their prescribed regimen. T here are several studies linking the complexity of antiretroviral regimen to medication adherence (Stone et al., 2001; Trotta et al., 2002; Portsmouth et al., 2005). Providers in this study talked
206 about emphasizing to patients the prospect of losing a simp le regimen (like the one pill a day dosing) to a more complex regimen with increased likelihood of side effects if they continued to be non adherent to their current regimen. Reportedly, this serves to motivate some patients on a simple regimen to be adher ent as they usually would not want to have to deal with multiple dosing and polypharmacy. Healthcare System related Factors Consistent care provider & personal knowledge of patient: In terms of how care is structured, there we re concerns about having a co nsistent care provider. Some of the target population access clinical care at sites where different care providers are rotated throug h the clinic days. Patients have no guarantee that the same care provider will be available at each follow up clinic visit. At the academic health care setting, if patients preferred, they could see a particular member of the medical team if the person requested at the time of clinic visit was available. In this study havin g a consistent provider enhanced provider patient relationship whereas having different attending clinicians was associated with lower patient satisfaction with care, communication gaps in the care process, and unnecessary changes in regimen. The strategy that some of the provide rs reportedly adopted wa s to build a relationship with the patient as a team and share pertinent patient information with each other using the electronic medical records. However, patient participants in this research stress ed the importance of being known personally by their care provider. Those who ha d a consistent care provider we re more likely to establish a personal relatio nship with their providers. It wa s important to the patient that the provider knew them as a person (not just their medical history ) and t his is in consonance with findings in the literature (Brion,
207 2013). Again, w hile electronic medical records are helpful in sharing patient i nformation, providers still have to select and note what non medical information that they think is relevant to care and this would differ from provider to provider. For patients interviewed in this study being known personally by their care provider increased their confidence in his/her recommendations for their care as they believe d that their context wa s put into consideration in prescribing medications and making health related recommendations for them. Care Provider related Factors Provider patient relationship: The key characteristic of the provider patient roviders in our study samples was care and commitment from the provider. When patients perceived that the person(s) deliver ing medical care really cared about them and demonstrated that they had a stake in their wellbeing, they often would respond by makin g the effort to take their medications knowing that their clinical values would alert the provider if they were non the viral load to the level where it was undetectable by the usual laboratory tests. This is consistent with other studies where a caring attitude and a partnership rather than a paternalistic relationship was preferred by patients (Brion, 2013; Mallinsonet al., 2007). Another characteristic of the provider pa tient relationship identified was accessibility of the care provider outside clinic hours. Knowing that they could reach their care provider at any time to discuss their HIV related concerns and have any medication related challeng es addressed immediately ensured that patients stay ed on their medication as opposed to stopping the medication and waiting till the next clinic
208 appointment to talk to their provider. K nowing that that they could reach their provider at any time was also reported to convey a sense of being cared for and being relevant as also corroborated by another study that assessed provider patient relationship in Trust has long been an issue with health care in the African American p opulation (Halbert et al., 2006; Jacobs et al., 2006; Kennedy et al., 2007). In HIV care, persons from minority populations are more likely to report experiences of discrimination in healthcare interactions and incomplete trust in their healthcare provider (Thrasher et al., 2008). To establish a viable relationship, patients in the target population often need to be assured that care providers who are more often than not non African American, genuinely have their interest at heart. Care providers reported t hat build ing trust with this population w as an intentional process aimed at getting the patients to become comfortable with interacting with them and being open to share their concerns, challenges and other information that may be useful in decision making for their treatment. Having trust in their care provider has been cited by PLWHIVs as being a key influence in their adherence behavior (Malcolm et al., 2003; Graham et al., 2010). Knowing the patient personally is also important to patients, and this is not uncommon among patients living with HIV (Brion, 2013). Provider care approach: Most members of the target population become infected with HIV through heterosexual contact. In the African American community, there is a prevalent notion that contracting HIV is an indication of a promiscuous lifestyle hence the associated stigma (Konkle Parker, 2013). Providers reported that e ven legitimately married African American women who have been faithful to their significant
209 other that become infected still experience some shame and guilt. When patients perceive any hint of judgmental attitude fr om the provider, they are unlikely to open up about their health related problems and non medical challenges that could impact treatment. As a consequence, these could remain unaddressed resulting in poor adherence to medication. Providers emphasized the n eed to intentionally try to communicate a non judgmental attitude to these patients through actions, words and a show of empathy. Essentially, patients who perceive d a judgmental attitude from care providers reportedly we re likely to be less communicative about the context of their lives withholding information that may be pertinent to the delivery of competent care. African American women have historically lived under the internalized stress brought on by experiences of racism, segregation and discrimina tion actual and perceived (William, 1999) In addition, perceptions of HIV disease shaped by normative beliefs at the time of diagnosis have been associated with internalized stigma (Konkle Parker, 2013). With these internalized feelings, positive respon se to care was reportedly enhanced if patients from this population perceive d that they were being treated as persons (as acknowledged by both providers and patients) wa s all the more impactful when providers reach e d out to express their care, concern, or empathy with physical touch such as a hug. Physical touch has been shown to give PLWHIV a re assurance of the disease as a condition that does not in any way take away from the person they are (Brion, 2013). Living with HIV is not just a medical condition; it has huge impact on the psycho social and socio n can be viewed
210 medically, the illness is experienced differently by the patient; affecting daily living, social interactions and economic activities. To provide care effectively, providers stressed the need to consider and address other aspects of the pat are often sources of barriers to medication adherence in this population. Celebrating the achievement of care goals whether as little as showing up for their scheduled clinic visit or as much as getting viral load down to an undetec table level is important in this patient population, considering the burden of other competing leader. Positive re enforcement is strategic in keeping patients moti vated to meet their clinic appointments and stay on their medication. Transportation as a structural barrier in access to care: Transportation is a significant problem for the target population and especially for those living in rural areas (Sanquist et al ., 2011; Pellowski, 2013). In more urban areas, persons who do not have cars are able to get to their clinic appointments because there is an organized public transport system. However in rural areas, where there is no public system in place, it is more di fficult to get to the clinic especially if the care site is not within the same county. In area 3/13, some county health departments do not have enough clientele to warrant having full time HIV care providers assigned to them. Patients then have to go to o ther counties for care. Providers noted that m aking arrangements for assisted transportation can be very overwhelming for persons in this population because of other competing needs and the multiple roles they play in their families.
211 Study Objective 4 Obje ctive 4 was to explore differences between health care provider perceptions of medication adherence needs of African American women living with HIV/AIDS and current HIV care practices. To provide more patient centered care to t his population, health care providers made suggestions on how the structure and process of care could be modified. The key suggestions include 1. social needs at time of diagnosis; 2. Minimizing the red tape associated with HIV care (especially the paper work); and 3. Reviewing and revising medication related policies that do not promote medication adherence for patients. Focus on immediate emotional and psycho social needs: At the time of diagnosis, most people are overwhelmed by the news of their status. Patients commonly experience a range of emotions shock, fear, anger, depression, disbelief. For most PLWHIV, their immediate concerns are non medical as they are confronted with a condition that will af fect all aspects of their lives going forward. Their emotional state is described as often un stable and it usually takes time for them to process what they just heard and come to terms with it. A lot of information is given to the newly diagnosed which the y may not be able to assimilate at that point. HRSA guidelines impact on their ability to retain and act on information given to them. By inference, trying to get newly diagnosed persons to enroll in care immediately may often be ineffective.
212 Providers recommend that e immediate concerns; the goal being to get them to come back. Talks about treatment can be initiated in follow up visits. There are concerns from the provider perspective about patients who are not immediately enrolled in care before they leave the facility following disclosure of their status, getting lost to follow up. This is the point where peer educa tors/navigators are thought to be most useful in connecting with and helping to address concerns that the newly diagnosed patients may have. Providers suggest that n ewly diagnosed patients may also be more open to home visits by peers or just further inter action with others living with HIV (peers) These peers could help to educate and help them come to terms with the condition and begin to build self efficacy to manage it like any other chronic condition. Minimize the red tape associated with HIV care (pap er work): Providers acknowledged that while s ome of the policies associated with HIV c are are laudable in theory, when implemented may not work to produce the ultimate care goal which is the health outcome of persons in this population. The paperwork that is required for assurance of eligibility to access assistance for care and related services is reportedly aimed at minimizing expenditure as i t ensure s that persons who receive these services are in need of them. However, the effort needed to keep up with the process of re certification every six months may be more than some members of the target population are willin g and/or able to deal with. These women have so much to take on in their lives that the additional paperwork may just constitute more of a challenge than facilitating the care process for them. Frequent breaks in care (and consequently medication refills)
213 due to defaults in eligibility contribute to non adherence in this population and possibly development of drug resistance. Review and revise policies that do not promote medication adherence: P roviders acknowledge that p olicies are necessary in any system and the health care system is no different. However, they argue d that policies need to be flexible to accommodate differences in patient populations. They recommend that w hen patients default in meeting up with requirements for continuous enrolment in aid programs like ADAP, rather than cut off their medication supply, efforts should be made to work with patients to identify and address their challenges. Also for loss of medication or out of stock drugs, efforts should be made to give patients sufficient pi lls to cover the period before their next refill or the time when out of stock drug will be available respectively. Pharmacies that have clients living with HIV are urged to monitor their refills to ensure that all the drugs on the regimen are readily avai lable. Other recommendations made by the care providers interviewed included the use of patient advisory groups as a resource to care providers on patient perceived needs and assessment of adequacy of care being provided; peer educators/navigators; and th e teach back technique in provider patient communication. Patient Advisory Groups [PAGs]: Using patient advisory groups (PAGs) is recommended by the Health Resources and Services Administration as a valuable tool to providers for the delivery of patient c entered care in patient populations living with HIV (HRSA). The Health Resources and Services Administration (HRSA), is an agency of the U.S. Department of Health and Human Services, which primary function is the
214 improvement of access to health care servic es the uninsured, isolated or medically vulnerable populations (HRSA). The PAG is a patient panel that makes suggestions to providers and advises them from a patient perspective on ways to improve patient care and satisfaction. It involves inic problems, recommending changes in the research has been done to determine the impact of PAGs in HIV care outcomes, but there are studies demonstrating the potential fo r patients as educators to health care providers (Towle et al., 2010; Towle & Godolphin, 2013; Doucet et al., 2013). A medical treatment model that uses the same principles as the patient advisory meet with their care provider for their usual clinic visit as opposed to meeting with the care physician one on one. Patients in this group setting would usually receive education on their disease condition but also have opport unity to communicate their concerns to the care provider as well as ask questions. This model of care has been shown to be effective in improving health outcomes and enhancing patient satisfaction with care in chronic disease management (Sadur et al., 1999 ; Wagner et al., 2001; Scott et al., 2004). By inference, there may be potential benefit in the use of patient advisory groups to improve medication adherence in the target population. Peer educators/ navigators: on of peer educators and peer navigators in HIV care as an effective strategy in helping patients build self management skills, overcome care related barriers and increase in HIV knowledge; while also facilitating entry into and retention in care, and medi cation adherence (HRSA, 2009; Ryan White, 2010; IAPAC, 2013). Research findings
215 demonstrate that including other persons living with HIV who are successfully managing their condition and are knowledgeable about the disease and treatment in the care team is beneficial in facilitating entry and retention in care, and also medication adherence particularly among vulnerable populations like the target group (HRSA, 2013; PEERC; Turner, & Shepherd, 1999; Population Council). Read back/Teach back in patient commu nication : There are concerns that English with a distinct foreign accent) some patients may not easily understand the information being passed on to them. More often tha n not, when patients are asked if not. The read communication and has been shown to improve patient und erstanding and consequently health outcomes (The Joint Commission, 2007; Indian Health Service; NCEHC, 2006; Kripalani & Weiss, 2006). Conclusions Care seeking behavior and medication adherence among African American women living with HIV/AIDS are product s of the complex interplay of personal, inter economic context. Key finding #1 Provider insight is critical to understanding barriers to care for the target population: Patients are more acutely aware of the personal and interpersonal factors that influence their HIV care related and medication taking behavior s Compared to patients, health care provide r s are in addition, also
216 knowledg e able about the broader context of the barriers to earl y linkage to care and medication adherence in this population These barriers are more structural and socio economic (for example housing, transportation, availability and accessibility of mental health services and policies about dispensing of medication s ) P atients f r om the target population that were interviewed did not mention these barriers suggesting that they may not be aware of the impact these factors have on their ability to access care and stay on course with their regimen or simply accept these as how the system is structured Providers have a more comprehensive overview of these barriers and how they influence patient behavior and care outcomes. They are therefore strategically positioned to strongly advocate for polic ies that provide more patient centered care and eliminate some of the structural barriers to care and medication adherence in this population. Key finding #2 : While structural level problems (such as the fragmentation of the he alth care system, restrictive policies and the unavailability of transportation) are significant barriers, they may only make it more difficult for patients in the target population to access and/or stay in care if they are actually willing to engage in HI V treatment T experience may be the key limiting factor to change in health related behavior. Interactions with other PLWHIV and health care providers can positively impact this experience. Understanding the illne ss trajectory of the patient can help health care providers better evaluate and monitor patients Providers can also utilize appropriate tools and strategies (such as peer education/ navigation, HIV education) to expedite the
217 internal illness process and g et them to the point where they are not only willing or motivated, but have the self efficacy to effectively engage in self care. Key finding #3 Impact of socio economic context: The narratives of the providers as well as findings from the literature suggest that the relationship between race/ethnicity and medication adherence may be confounded by socio economic status which includes variables such as income level housing, education, employment status and place of residence (rural versus urban). However, after controlling for these variables, racial/et hnic disparities in HIV care seeking and health related behaviors still persist. These variables differentiate sub sets of p atients within this population who may have unique problems associated with entry into and retention in care, and medication adherence but do not fully explain the disparities Findings from this study suggest that there are characteristics of the socio e conomic context of the target population that include but also go beyond the SES. The re are contextual factors that are unique to sub groups within this population These include the care giver role; carrying the financial burden of the home; history of se xual abuse; prevalence of domestic violence; and the instability with employment, relationships and housing. and take it into account in their care delivery. Interventions to facilitate l inkage to care and/or enhance medication adherence therefore need to be tailored to individual patients or designed to target specific sub groups within this patient population. Key finding #4 Potential for significant impact using peer educators/ naviga tors: Patient perspectives strongly suggest that interaction with other PLWHIV who are perceived as having a good quality of life (QoL) significantly affects perception
218 of HIV disease and ART Newly diagnosed patients from the target population, who percei ve this health outcome (Q oL) to be attributable to effective treatment with ART are more accepting of HIV treatment more likely enter into care early. Interaction with peers (especially those with similar demographics socio economic context) also helps to increase self efficacy for medication adherence in this population Formal t raining and i nclusion of peers in HIV care as educators and/or navigators should therefore be considered as a potentially effective strategy in improving early linkage and medication adherence in this population Key finding #5 in their care delivery: Provider perspectives on potential strategies to enhance competency of care delivery to this population support t he recommendations b y HRSA to utilize PAGs as a tool in HIV care. Members of the target population are characteristically described as passive in their patient role and may not readily give feedback to their care providers on their satisfaction with care while in the care set ting. However, they may be more forthcoming in a n on clinical setting where they are invited as advisors to share their experiences from interacti o n with the healthcare system and care providers Such a forum would give providers an opportunity to gain ins ight into any challenges th is patient population face s in the process of accessing and receiving care. The recruitment of patients as in their care is expected to guide policy making that is more patient centered and provide constructive feedback t hat would enable healthcare providers deliver more competent care to the target population. This study gives a broad overview of barriers and facilitators associated with linkage to care and medication adherence in the target population. The f actors identified
219 provide useful information for the design of interventions. However, more research is recommended to determine the specific mechanisms by which these factors exert influence on health related behavior in this population. Study Limitations Volunteer bias: The study sample in the preliminary study was skewed in that persons who volunteered to participate in the study were mostly middle aged to elderly women who had similar characteristics. They were all enrolled in care and self reported hig h levels of adherence. Most of them were involved in support groups and some had publicly disclosed their HIV status and openly engaged in HIV advocacy activities in their communities. Their perceptions may differ markedly from those who are not currently engaged in care, have been lost to follow up or are non adherent to their antiretroviral medications. Efforts were made to recruit persons out of care, but did not meet with any success as confidentiality policies precluded approaching persons in the targe t population unless they initiate contact with the investigator. Interviews with patient participants therefore sought to explore their earlier experiences with HIV and health related behavior prior to becoming adherent. While one may argue that recall bia s is a pivotal and life changing nature of an HIV diagnosis. Convenience sampling & selection bias: While purposeful in the sampling approach (careful to include diverse types of providers), there was an obvious selection bias Care providers approached to participate in the study were those whose contact information was available, and those who consented were essentially agreeing to invest their time despite thei r busy schedule. Participants therefore may be those overly
220 concerned about the target population and their views may not accurately represent the general perceptions of all care providers in the target area (3/13) Sample size & generalizability: The stu dy samples (for both patients and care providers) were relatively small compared to the sizes of the actual populations of the target group and care providers, respectively. This does not limit the applicability of the findings in designing interventions f or African American women living with HIV/AIDS within the target region (area 3/13) since interviews for both patient participants and care providers were conducted until the point of saturation was reached. However, application of the findings to women in the target group residing in other areas is dependent on the similarities of their context to the population studied. Hence some validation may be required in other population s It should be noted that the study was not inferential, but rather exploratory While the methodological approach is considered appropriate and sample size adequate, further research is needed to validate these findings. Personal bias: By the very nature of the study (qualitative), there is potential for personal bias. Time and reso urces were limited hence data coding and analysis was done by a single researcher. Inter rater reliability assessment of assigned codes and categorizations to make the findings less subjective was not feasible. However, member check was done whereby some o f the participants (n = 8) were presented with the findings for confirmation that they were accurate representations of their perceptions as note where her assumptions were outlined to help distinguish between her perceptions and those of the participants.
221 Potential response bias: The investigator who conducted the interview is a black female, though not African American. Perception of the interviewer as being closely a ssociated with the racial background of the target population may have Caucasian. Again, most of the care providers interviewed have a diverse patient population. There were responses to interview questions that tended to apply to the general population of patients living with HIV and not necessarily to the target population. Efforts were made during the interviews to intermittently remind participants that questions were specific to the target population. Next Steps Designing Targeted Interventions Ultimately, the purpose of this research is to facilitate the design of targeted interventions that can facilitate early linkage to HIV care and enhance medication adherence in among African American women living with HIV. This portion of the research has identified numerous issue associated with linkage and medication adherence as perceived by both patients and care providers. These provide useful information to stakeholders interested in implementing programs aimed at addressing HIV related morbidity and mortality in the target population. An overview of the factors identified is given in an integrated model ( F igure 5 1). Integration of Conceptual Models The various factors identified by patients in the target group and those drawn from the perceptions of healthcare providers have been integrated into one conceptual model. The result is a comprehensive model describing the potential interactions between factors at the individ ual, inter personal and structural levels that affect care
222 seeking behavior and medication adherence in the target group. While some of the perspectives, a search of literat ure confirms that all the factors mentioned directly or indirectly affect how members of the target group enter into care and take their antiretroviral medication (preliminary study in chapter one and the discussion section in the following chapter). The i ntegrated model provides a comprehensive overview of factors associated with medication adherence in the target population and provides more holistic picture useful in selecting an area(s) of focus and designing effective interventions ( T able 5 1). Selecti ng an Intervention Focus: Priority Matrix From the research, several factors have been identified as influencing or affecting medication adherence behavior in the target population. A number of intervention strategies are also suggested based on recommenda tions from both limited and in implementing an intervention, the goal is usually to select an area(s) of focus that achieves the most impact for the resources invested. To d etermine the area(s) to focus on for intervention in the target, a priority matrix was constructed ( F igure 5 2 ). The matrix differentiates problem areas based on two criteria [1.] the importance of its influence on the targeted behavior and [2.] the degr ee to which it is amenable to change. The factors that are more important and easier to change are those recommended for focus in designing a cost effective intervention(s) in the target population. Moving forward, two key areas will be focused on for furt her research and intervention peer support and patient advisory groups.
223 Impact of Peer Education/Nav igation on L inkage to care and Medication Adherence Findings from this study strongly suggest that peer navigation and peer support may be very significan t in facilitating early linkage to HIV care and enhancing medication adherence in the target population. Peer support was perceived by patients interviewed to have significant impact on linkage to care and medication adherence. While providers agreed that there may be some benefit to integrating peer educators and/or navigators into the HIV care team, there is no documented evidence yet of the impact in the target population. Future research efforts will therefore focus on determining the impact of peer sup port (peer education and peer navigation) on linkage to care and medication adherence among African American women living with HIV/AIDS. Implementing a Patient Advisory Group One of the recommendations from care providers interviewed in this dissertation r esearch was the establishment of patient advisory groups from the target population. Another research being considered is the implementation and evaluation of the impact knowledge of patient needs.
224 Figure 5 1 Integrated model: Care provider and patient perceptions of care seeking & adherence behavior among African American women living with HIV/AIDS
225 Figure 5 2 Priority matrix S electing target areas for intervention
226 A PPENDIX A PATIENT INTERVIEW GUIDE Demographic Data (pre interview) 1. Ethnicity Native born African American African Caribbean 2. Country of birth United States of America Other country __________ 3. Age: < 20yrs 20 24yrs 25 29yrs 30 34yrs 35 39yrs 40yrs and above 4. Marital Status: Single Married Separated Divorced Widowed 5. How many children do you have? ____________________________________________ 6. In which year were you diagnosed with HIV? ______________________________________ 7. What is the highest level of education you have had? No education Elementary/Middle school (State Grade level) ____ High school College Graduate school 8. Are you currently employed? Yes if so, full time or part time? _________________________________ No Interview Guide Questions/*Prompts 1. Do you remember when you were first diagnosed with HIV? Can you tell me about it? Prompts i. The circumstance ii. Where were you? iii. Who told you? iv. How were you told? 2. What was your initial reaction on learning that you were positive?
227 Prompts i. How did you feel? About the disease, yourself, your life, etc. ii. What did you do? iii. Did you have any concern(s) at that time? iv. Would anything have made a difference? 3. When did you start taking HIV drugs? Can you tell me how you started? Prompts i. How long was it from the time you knew you were positive? ii. What was the experience like? iii. Do you think you were ready to start taking the drugs? Why? iv. How did you feel about taking the drugs? v. How were you taking the drugs? vi. Did you have any challenges? 4. What has been your experience with the drugs since then? Prompts i. Are you still taking the drugs? ii. How are you taking the drugs now? Why? iii. How do you feel about taking the drugs now? iv. Have there been any changes in how you take your drugs? If so, what? When? How? Why? 5. Given your experiences, what do you think can be done to help other African American women who are living with HIV become more adherent to their medication? *Prompts To be used ONLY when necessary. Otherwise, participants will be allowed to just talk about their experiences as related to medication use.
228 APPEN DIX B PROVIDER INTERVIEW GUIDE Protocol Title: Health care provider perceptions about medication adherence among African American women living with HIV/AIDS 1. Please tell me about your general experience with African American women living with HIV/AIDS Prompts How would you describe this population? Ho w is this population similar and/or different from other populations living with HIV/AIDS? 2. Drawing from your experience, can you describe what your first encounter with an African American woman newly diagnosed with HIV would typically be like? Prompts Yo ur assumptions (if any) Your approach Care process 3. Can you tell me about any specific concerns that you may have about this population? Prompts With regards to linkage to care With regards to medication adherence 4. How would you compare African American women living with HIV with women from other racial/ethnic backgrounds also living with HIV/AIDS with regards to what facilitates Linkage to care Medication adherence
229 5. in this population? In what way(s) can other healthcare providers enhance medication adherence in this population? 6. Can you tell me what specific things you as a health care provider are doing to enhance medication adherence in this population? 7. In your assessmen t, how efficient is the health care system in a. getting persons in this population into care b. following up clients to ensure retention in care 8. In your assessment, how helpful are (i.) health care providers such as yourself and (ii.) the healthcare system in general in a. Facilitating linkage to care for members of this population b. Enhancing medication adherence among your clients in this population? 9. What do you think will be most helpful in improving medication adherence in this pop ulation?
230 APPENDIX C PROVIDER DEMOGRAPHIC INFORMATION FORM Protocol Title: Health care provider perceptions and beliefs about medication adherence among African American women living with HIV/AIDS We would like to ask you a few questions about your demographic characteristics. This is to facilitate the interpretation of the data collected from this interview. 1. What is your primary professional discipline? O Nurse Practitioner O Pharmacist O Physician O Health Educator O Mental/Behavioral Health Professional O Other Public Health Professional O Social Worker O Substance Abuse Professional O Community Health Worker O Other (please specify): _______________________ 1a. How long have you been in this professional discipline? (Please state no. of years) _____ 2. What is your primary functional role in HIV care? O Clinician O Nurse O Case Manager O Pharmacist 2a. How long have you been functioning in this role? (Please state no. of years) _________ 3. What is your primary employment setting? Name of agency __________________________ 3a. Type of agency O State/Local Health Dept. O Academic Health Center O Private Practice O Other (please specify) ___________________ 3b. Location
231 O Rural O Suburban O Urban 4. Gender O Male O Female 5. What is your racial/ethnic group? O Caucasian/White O African American/Black O American Indian/Alaska Native O Asian American O Latino/Hispanic O Native Hawaiian/ Other Pacific Islander O Other (please specify) __________________________ 6. Are you Hispanic? O Yes O No 7. What is your age category? O < 30 years O 30 39 years O 40 49 years O 50 59 years O 60 69 years O 70 years and above 8. How long have you been working with persons living with HIV/AIDS? (Please state no. of years/ months) ______________________________ 9. On the average, how many patients/clients living with HIV do you see in a month? _____________
232 APPENDIX D PROFILE OF CARE PROVIDER PARTICIPNTS Participant #1 Primary profession/ discipline Primary role in HIV care Employment setting Care site(s) Gender Race/ethnicity Age category Years working with PLWHIV Average no. of clients / month Registered Nurse (RN) 33years Nurse/ Case manager 14years Non profit organization Rural, suburban, urban Female Caucasian, non Hispanic 60 69 years 40years 50 60 Participant #2 Primary profession/ discipline Primary role in HIV care Employment setting Care site(s) Gender Race/ethnicity Age category Years working with PLWHIV Average no. of clients / month Physician (primary care) 22years Clinician 22years State/County Health Department (16 years) Rural Male Caucasian, non Hispanic 50 59 years 22 years 10 15 Participant #3 Primary profession/ discipline Primary role in HIV care Employment setting Care site(s) Gender Race/ethnicity Age category Years working with PLWHIV Average no. of clients / month Physician (infectious disease specialist) 19 years Clinician 16 years Academic; State/County Health Dept., Non profit Org. Rural Female Caucasian, non Hispanic 40 49 years 16 years 75 100 Participant #4 Primary profession/ discipline Primary role in HIV care Employment setting Care site(s) Gender Race/ethnicit y Age category Years working with PLWHIV Average no. of clients / month Social worker Case manager Non profit organization Rural, suburban, urban Male Caucasian, non Hispanic 60 69years 5 years Variable: 0 25
233 Appendix D continued Participant #5 Primary profession/ discipline Primary role in HIV care Employment setting Care site(s) Gender Race/ethnicity Age category Years working with PLWHIV Ave r age no. of clients / month Social Worker 8 years Case manager 3 years Non profit organization Rural, suburban, urban Female Latino/Hispanic 30 39 years 3 years About 30 Participant #6 Primary profession/ discipline Primary role in HIV care Employment setting Care site(s) Gender Race/ethnicity Age category Years working with PLWHIV Average no. of clients / month Social Worker 15 years Case manager 12 years Non profit organization Rural, suburban, urban Female Caucasian, non Hispanic 60 69 years 11 years 30 40 Participant #7 Primary profession/ discipline Primary role in HIV care Employment setting Care site(s) Gender Race/ethnicity Age category Years working with PLWHIV Average no. of clients/ month Community Health Worker 20 years Case Manager 12 years Non profit organization Rural, suburban, urban Female Caucasian, non Hispanic 60 69 years 12 years 10 Participant #8 Primary profession/ discipline Primary role in HIV care Employment setting Care site(s) Gender Race/ethnicity Age category Years working with PLWHIV Average n o. of clients/ month Social Worker 10 years Case manager 5 years Non profit organization Rural, suburban, urban Female Caucasian, non Hispanic < 30 years 5 years About 100
234 Appendix D Continued Participant #9 Primary profession/ discipline Primary role in HIV care Employment setting Care site(s) Gender Race/ethnicity Age category Years working with PLWHIV Average no. of clients /month Physician ( primary care ) 20 Clinician 17 State/County health Department; Private practice Sub urban Male Latino/Hispanic 50 59 years 17 > 100 Participant #10 Primary profession/ discipline Primary role in HIV care Employment setting Care site(s) Gender Race/ethnicity Age category Years working with PLWHIV Average no. of clients / month Social Worker 7 years Case manager 7 years Non profit organization Rural, suburban, urban Female Caucasian, non Hispanic 30 39 years 10 years 8 10 Participant #11 Primary profession/ discipline Primary role in HIV care Employment setting Care site(s) Gender Race/ethnicity Age category Years working with PLWHIV Average no. of clients / month Pharmacist 19 Pharmacist 15 Specialty pharmacy Suburban Male Caucasian, non Hispanic 50 59 years 19 years 7 Participant #12 Primary profession/ discipline Primary role in HIV care Employment setting Care site(s) Gender Race/ethnicity Age category Years working with PLWHIV Average no. of clients (PLWHIV) seen per month Physician (Infectious disease specialist) 30 years Clinician 30 years Academic Health Center Suburban Female Caucasian, non Hispanic 60 69 years 32 years 20
235 Appendix D Continued Participant #13 Primary profession/ discipline Primary role in HIV care Employment setting Care site(s) Gender Race/ethnicity Age category Years working with PLWHIV Average no. of clients / month Nurse 40 years Case manager 16 years Academic Health Center; State/County Health Department Rural, suburban Female Caucasian, non Hispanic 60 69 years 28 50 60 Participant #14 Primary profession/ discipline Primary role in HIV care Employment setting Care site(s) Gender Race/ethnicity Age category Years working with PLWHIV Average no. of clients / month Physician 3 years Clinician 1.5 years Academic Health Center (Resident) Suburban Male Asian, non Hispa nic 30 39 years 3.5 years 10 12 Participant #15 Primary profession/ discipline Primary role in HIV care Employment setting Care site(s) Gender Race/ethnicity Age category Years working with PLWHIV Average no. of clients / month Physician 7 years Clinician 3 years Academic Health Center (Resident) Suburban Male Asian, non Hispanic 30 39 years 10 years 8 10 Participant #16 Primary profession/ discipline Primary role in HIV care Employment setting Care site(s) Gender Race/ethnicity Age category Years working with PLWHIV Average no. of clients / month Nurse Practitioner 45 years; Associate Professor Clinician Academic ; State/County Health Department Rural, suburban, urban Female Caucasian, non Hispanic 60 69 years 19 30 40
236 Appendix D Continued Participant #17 Primary profession/ discipline Primary role in HIV care Employment setting Care site(s) Gender Race/ethnicity Age category Years working with PLWHIV Average no. of clients / month Physician (Pediatrician) 30 years Clinician 30 years Academic Health Center; outreach clinics Rural, suburban, urban Male Caucasian, non Hispanic 60 69 years 30 years 5 10 Participant #18 Primary profession/ discipline Primary role in HIV care Employment setting Care site(s) Gender Race/ethnicity Age category Years working with PLWHIV Average no. of clients / month Medical assistant Nurse Private clinic Suburban Female Caucasian, non Hispanic 30 39 years 4 years 50 Participant #19 Primary profession/ discipline Primary role in HIV care Employment setting Care site(s) Gender Race/ethnicity Age category Years working with PLWHIV Average no. of clients / month Physician (Infectious disease specialist) 12 years Clinician 7 years Academic Health Center Suburban Female Asian American, non Hispanic 30 39 years 10 years 20 25 Participant #20 Primary profession/ discipline Primary role in HIV care Employment setting Care site(s) Gender Race/ethnicity Age category Years working with PLWHIV Average no. of clients (PLWHIV) seen per month Pharmacist 13 Pharmacist 5 Retail pharmacy Suburban Female Caucasian, non Hispanic 30 39 years 13 years 15 20
237 Appendix D Continued Participant #21 Primary profession/ discipline Primary role in HIV care Employment setting Care site(s) Gender Race/ethnicity Age category Years working with PLWHIV Average no. of clients (PLWHIV) seen per month Pharmacist 4 Clinical Pharmacist 2 Academic Health Center; State/County Health Department Suburban Female Caucasian, non Hispanic 30 39 years 5 years >100
238 LIST OF REFERENCES Abel, E., & Painter, L.(2003). Factors that influence adherence to HIV medications: Perceptions of women and health care providers. Journal of the Association of Nurses in AIDS CARE, 14(4) 61 69. Achappa, B ., Madi, D ., Bhaskaran, U ., Ramapuram, J.T ., Rao, S ., & Mahalingam, S (2003) Adherence to Antiretroviral Therapy Among People Living with HIV. N Am J Med Sci 5(3):220 3. doi: 10.4103/1947 2714.109196. Adler, N.E., & Newman, K. (2002). Disparities in Health: Pathways and Policies. HEALTH AFFAIRS 21(2)60 76. Ahdieh Grant, L., Tarwater, P., Schneider, M., Anastos, K., Cohen, M., Khals, A., et al., (2005). Factors and temporal trends associated with high active antiretroviral Journal of Acquired Im mune Deficiency Syndrom 38(4), 500 50. AIDSMAP. Factors affecting HIV related sexual risk taking in people living with HIV. Retrieved from http://www.aidsmap.com/Factors affecting HIV related sexual risk taking in people living with HIV/page/1442638/ Alfonso, V., Toulson, A., Bermbach, N., Erskine, Y., & Montaner, J. (2009).Psychosocial issues influencing treatment adherenc e in patients on multidrug rescue therapy: Perspectives from patients and their health care providers. AIDS PATIENT CARE & STDs 23(2) 119 126. Altice, F.L., Mostashari, F., & Friedland, G.H. (2001).Trust and the acceptance of and adherence to antiretro viral therapy. J Acquir Immune Defic Syndr 28:47 58. Opt imizing Long Term Outcomes and Adherence in Patients With HIV: 2010 Update APhA Special Report Retrieved from http://coldfusion.cecity.com/cecity/components/util/pdf/docs/pdf/15244_print.pdf American Public Health Association (2004) Adherence to HIV Treatment Regimens: Recommendations for Best Practices. Retrieved from http://www.apha.org/NR/rdonlyres/A030DDB1 02C8 4D80 923B 7EF6608D62F1/0/BestPracticesnew. pdf Ammassari, A ., Murri, R ., Pezzotti, P ., Trotta, M. P ., Ravasio, L De Longi s, P ., Lo Caputo, S ., N arciso, P ., Pauluzzi, S ., Ca rosi, G ., Nappa, S ., Piano, P ., Izzo, C.M ., Lichtner, M ., Rezza, G ., Monforte, A ., Ippolito, G ., d'Armini o Moroni, M ., Wu, A.W ., Antino ri, A .; AdICONA Study Group (2001). Self reported symptoms and medication side effects influence adherence to highly active antiretroviral therapy in persons with HIV infection. J Acquir Immune Defic Syndr 28(5):445 9.
239 Ammassari, A ., Trotta, M.P ., Murri, R ., Castelli, F ., Narciso, P ., Noto, P ., Vecchiet, J ., D'Arminio Monforte, A ., Wu, A.W ., Antinori, A .; AdICoNA Study Group (2002). Correlates and predictors of adherence to highly active antiretroviral therapy: overview of published literature J Acquir Immune Defic Syndr 15;31 Suppl 3:S123 7. Anastos, K., Schneider, M., Gange, S., Minkoff, H., Greenblatt, R., Feldman, J., Levine, et al.,(2005). The association of race, sociodemographic, and behavioral characteristics with response to highly active antiretroviral therapy in women. Journal of Acquired Immune Deficiency Syndromes and Human Retrovirology 39(5), 537 544. Andersen, R., Bozzette, S ., Shapiro, M., St Clair, P., Morton, S., Crystal, S., Goldman, D., Wenger, N., Gi ord, A., Leibowitz, A., Asch, S., Berry, S., Nakazono, T., Heslin, K., & Cunningham, W. Access of Vulnerable Groups to Antiretroviral T erapy Among Persons in Care for H IV Disease in the United States. HCSUS Consortium. (2000). HIV Cost and Services Utilization Study, Health Services Research 32(2), 389 416. Anderson, J.R.(1996).Peer counseling for HIV infected women. The Hopkins HIV Report, 8(2), 3.5. Retrieved from http://www.thebody.com/jh/hivrept/jul96/anderson.html Apollo, A ., Golub, S.A ., Wainberg, M.L ., & Indyk, D (2006). P atient provider relationships, HIV, and adherence: requisites for a partnership. Soc Work Health Care 42(3 4):209 24. Arnsten, J.H., Demas, P.A., Farzadegan, H., Grant, R.W., Gourevitch, M.N. Chang, C.J., Buono, D., Eckholdt, H., Howard, A.A., & Schoenbaum, E.E. (2001). Antiretroviral therapy adherence and viral suppression in HIV infected drug users: comparison of self report and electronic monitoring. Clin Infect Dis 33:1417 23. Ashford, L.S., (2006 ). How HIV and AIDS affect populations. Population Reference Bureau. Retrieved from http://www.prb.org/pdf06/howhivaidsaffectspopulations.pdf Bailey, E.J. Black Journal of the National Medical Association 79(4), 389 392. Bakken, S ., Holzemer, W.L ., Brown, M.A ., Powell Cope, G.M ., Turner, J.G ., Inouye, J ., Nokes, K.M ., & Corless, I.B (2000). Relationships between perception of engagement with health care provider and demographi c characteristics, health status, and adherence to therapeutic regimen in persons with HIV/AIDS. AIDS Patient Care STDS, 14(4):189 97.
240 Bangsberg, D.R., Hecht, F .M., Charlebois, E.D., Zolopa, A.R., Holodniy, M, Sheiner, L., Ba mberger, J.D., Chesney, & M.A., Moss, A. (2000). Adherence to protease inhibitors, HIV 1 viral load, and development of drug resistance in an indigent population. AIDS 14(4):357 66. Baron R. M., & Kenny, D. A. (1986). The moderator mediator variable distinction in social psychological research: Conceptual, strategic and statistical considerations. Journal of Personality and Social Psychology, 51 1173 1182. Beach, C.M., Saha, S., Korthius, P.T., Sharp, V., Cohn, J., Wilson, I.B., Eggly, S., Cooper, L.A., Roter, D., Sankar, A., & Moore, R. (2011). Patient Provider Communication Differs for Black Compared to White HIV Infected Patients. AIDS Behav, 15:805 81 1. Beedham, H ., & Wilso n Barnett, J (1995). HIV and AIDS care: consumers' views on needs and services J Adv Nurs, 22(4):677 86. Black, B.P., & Miles, M.S. (2002). Calculating the risk s and benefits of disclosure in African American women who have HIV. J Obstet Gynecol Neonatal Nurs 31(6):688 97. Blackstock, O.J ., Addis on, D.N ., Brennan, J.S ., & Al ao, O.A (2012). Trust in primary care providers and antiretroviral adherence in an urban HIV clinic J Health Care Poor Underserved 23(1):88 98. doi: 10.1353/hpu.2012.0006. Blaikie, N. (2000), Designing Social Research, 1st ed, Polity Press, Cambridge. Bofill, L.M ., Lopez, M ., Dorigo, A ., Bordato, A ., Lucas, M ., Cabanillas, G.F ., Sued, O ., Cahn, P ., Cassetti, I ., Weiss, S ., & Jones, D (2013). Patient provider perceptio ns on engagement in HIV care in Argentina. AIDS Care [Epub ahead of print] doi: 10.1080/09540121.2013.844767. Bowers, B. (1989). The grounded theory method: From conceptualization to research process. In B. Sarter (Ed., pp. 33 59), Paths to knowledge: Innovative research methods in nursing Nursing National League for Nursing. Boyatzis, R.E. (1998). Transforming qualitative information: Thematic analysis and code development. Thousand Oaks, London,& New Delhi: SAGE Publications. Brandon, D.T., Isaac, L.A., & LaVeist T.A. (2005). The legacy of Tuskegee and trust in medical care: Is Tuskegee responsible for race differences in mistrust of medical care? J Natl Med Assoc, 97(7): 951 956. Brashers, D.E ., Haas, S.M ., & Neidig, J.L (1999). The patient self advocacy scale: measuring patient involvement in health care decision making interactions. Health Commun, 11(2):97 121.
241 Brion J (2013). The Patient Provider Relationship as Experienced by a Diverse Sample of Highly Adherent HIV Infected People. J Assoc Nurses AIDS Care S1055 3290(13)00008 3. doi: 10.1016/j.jana.2013.01.006. Broadhead, R.S., Heckathorn, D.D., Altice, F.L., van Hulst, Y., Carbone, M., Friedland, G.H., & Selwyn, P.A.( to HIV treatment: results of a peer driven intervention feasibility study. Social Science & Medicine, 55 (2 ), 235 246. Broadhead, R.S ., Heckathorn, D.D ., Altice, F.L ., van Hulst, Y ., Car bone, M ., Friedland, G.H ., O'Connor, P.G ., & Selwyn, P.A .. (2002). Incre asing drug users' adherence to HIV treatment: results of a peer driven intervention feasibi lity study. Soc Sci Med, 55(2):235 46. Burns Tisdale, S., Duprat, L., & Wells, C. (1994). Caring for people with human immunodeficiency virus: Incorporati ng patient perspective. Journal of Nursing Administration, 24(9), 52 60. Castanga, A., Galli, L., Torti, C. et al. Predicting the magnitude of short term CD4+ T cell recovery in HIV infected patients during first line highly active antiretroviral ther apy. Antivir Ther, 2010; 15(2): 165 75. Catz, S.L., Gore Felton, C., & McClure, J.B.(2002). Psychological Distress Among Minority and Low Income Women Living With HIV. Behavioral Medicine, 28(2):53 60. CDC (2011). Fact Sheet: Estimates of New HIV Infecti ons in the United States, 2006 2009. Retrieved from www. cdc .gov/nchhstp/ new sroom/docs/ Hiv infections 2006 2009 .pdf CDC (2012a). HIV Surveillance Report, Vol. 22. Retrieved from http://www.cdc.gov/hiv/surveillance/resources/reports/2010report/index.htm CDC (2013). HIV Surveillance Report Vol. 23 ; February 2013. (HIV diagnosis data are estimates from all 50 states, the District of Columbia, and 6 U.S. dependent areas. Rates do not include U.S. dependent areas.) CDC. (2010). Slide Set: HIV Mortality (through 2008). Retrieved from http://www.cdc.gov/hiv/topics/surveillance/resources/slides/mortality/index.htm CDC. (2012b) HIV Surveillance Supplemental Report Vol. 17, No. 4; December 2012. (Data are estimates and do not include U.S. dependent areas). Retrieved from http://www.cdc.gov/hiv/pdf/statistics_hssr_vol_17_no_4.pdf
242 CDC. (2012c) HIV Surveillance Supplemental Report 20 12, Vol. 17, No. 3 (Part A). Monitoring Selected National HIV Prevention an d Care Objectives by Using HIV Surveillance Data United States and 6 U.S. Dependent Areas 2010. Retrieved from http://www.cdc.gov/hiv/surveillance/resources/reports/2010supp_vol17no3/index. htm CDC. (2012d). Fact Sheet: HIV in the United States: The Stages of Care. July, 2012. Retrieved from http://www.cdc.gov/nchhstp/newsroom/docs/2012/Stages of careFactSheet 508.pdf Charmaz, K. (2006). Constructing grounded theory: A practical guide through qualitative analysis Thousand Oaks, CA: SAGE Publications. Chesney, M.A. (2006). The elusive gold standard. Future perspectives for HIV adherence assessment and intervention. J Acquir Immune Defic Syndr, 3(Suppl 1):S149 155. Coetzee, B ., Kagee, A ., & Vermeulen, N (2011). Structural barriers to adherence to antiretroviral therapy in a resource constrained setting: the perspectives of health care providers. AIDS Care 23(2):146 51. Cohen, D., & Crabtree, B. (2006). Qualitative Research Guidelines Project. Retrieved from www.qual res.org Cohen, M., Cook, J., Grey, D., Young, M., Hanau, L., Tien, P., et al., (2004). Medically eligible women who do not use HAART: the importance of abuse, drug abuse, and race. American Journal of Public Health 94(7), 1147 1151. Cohen, S., Syme, S. L. (1985). Social Support and Health. San Francisco, CA: Academic Press. Coleman, C.L ., Eller, L.S ., Nokes, K.M ., Bunch, .E ., Reynolds, .N.R Corless, I.B ., Dole, P ., Kemppainen, J.K ., Kirksey, K ., Seficik, L ., Nicholas, P.K ., Hamilton, M.J ., Tsai, Y.F ., & Holzemer, W.L (2006a). Prayer as a complementary health strategy for managing HIV related symptoms among ethnically diverse patients. Holist Nurs Pract. ;20(2):65 72. Coleman, C.L ., Holzemer, W.L ., Eller, L.S ., Corless, I ., Reynolds, N ., Nokes, K.M ., Kemppainen J.K ., Dole, P ., Kirksey, K ., Seficik, L ., Nicholas, P ., & Hamilton, M.J (2006). Gender differences in use of prayer as a self care strategy for managing symptoms in African Americans living wit h HIV/AIDS. J Assoc Nurses AIDS Care, 17(4):16 23. Cook, J., Cohen, M.H., Grey, D., Kirstein, L., Burke, J., Anastos, K., Palacio, H., Richardson, J., Wilson, T.E., & Young, M. (2002). Use of highly active antiretroviral therapy in a cohort of HIV seropositive women. Am J Public Health 92:82 87.
243 Cook, J.A ., Cohen, M.H ., Burke, J ., Grey, D ., Anastos, K ., Kirstein, L ., Palacio, H ., Richardson, J ., Wilson, T ., & Young, M (2002) Effects of depressive symptoms and mental health quality of life on use of highly active antiretroviral therapy among HIV seropositive women. J Acquir Immune Defic Syndr 30(4 ), 401 409. Cooperman, N.A ., & Arnsten, J.H (2005). Motivat ional interviewing for improving adherence to antiretroviral medications. Curr HIV/AIDS, 2(4):159 64. Cunningham, W.E., Andersen, R.M., Katz, M.H., Stein, M.D., Tur ner, B.J., Crystal, S., Zierler, S., Kuromiya, K., Morton, S.C., St. Clair, P., Bozzette, S.A., & Shapiro, M.F. (1999). The Impact of Competing Subsistence Needs and Barriers on Receiving Care in the United States, Medical Care 37(12), 1270 1281. Dalmida, S.G., Holstad, MM., Dilorio, C., Laderman, G. (2012). The Meaning and Use of Spirituality among African American Women Living with HIV/AIDS. West J Nurs Res, 34(6):736 65 Re trieved from http://wjn.sagepub.com/content/early/2012/05/03/0193945912443740 Decroo, T ., Van Damme ,W ., Kegels, G ., Remartinez, D ., & Rasschaert, F (2012). Are Expert Patients an Untapped Resource for ART Provision in Sub Saharan Africa? AIDS Res Treat 2012:749718 doi: 10.1155/2012/749718. Epub 2012 Apr 19. Deering, K.N ., Shannon, K ., Sinclair, H ., Parsad, D ., Gilbert, E ., & Tyndall, M.W (2009). Piloting a peer driven intervention model to increase access and adherence to antiretroviral therapy and HIV care among street entrenched HIV positive women in Vancouver. AIDS Patient Care STDS 23(8):603 9. doi: 10.1089/apc.2009.0022. Demmer, C (2003). Relationship with health care provider and adherence to HIV medications. Psych ol Rep 93(2):494 6. DiIorio, C ., Resnicow, K ., McDonnell, M ., Soet, J ., McCarty, F ., & Yeager, K (2003). Using motivational interviewing to promote adherence to antiretroviral medications: a pilot study. J As soc Nurses AIDS Care 14(2):52 62. Doucet, S., Lauckner, H., Reg, O.T., & s Messages as educators in an interprofessional health education program. Journal of Research in Interprofessional Education 3(1): 92 102. Dutcher, M. V., Phicil, S.N., Goldenkranz, S.B., Rajabiun, S., Franks, J., Loscher, B.S., & Up Approach to Identifying Best Practices in HIV Care and Treatment Based on the Experiences of Peer Educators. AIDS PATIENT CARE and STDs, 25(7):403 11. Edwards LV. (2006) Perceived social support and HIV/AIDS medication adherence among African American women. Qual Health Res, Vol. 16: 679 692.
244 Escobar, I ., Campo, M ., Martn, J ., Fernndez Shaw, C ., Pulido, F & Rubio, R (2003). Factors affecting patient adherence to highly active antiretroviral therapy. Ann Pharmacother, 37(6):775 81. Evers, A.W., Kraaim att, F.W. Illness Cognition Questionnaire (1998). Retrieved from www.floriskraaimaat.nl/pdfiles/ ICQ %20inventory%20English.pdf Eversley, R., Israelski, D., Smith, S., & Kunwar, P. (1998). Satisfaction with medical care is associated with race, HIV symptoms and recovery from substance abuse among HIV infected women. Paper presented at the XII International Conference on AIDS. Geneva, Switzerland. Fagan, J.L., Beer, L., Garland, P., Valverde, E., Courogen, M., Hillman, D., B rady, K., Bertolli, J., et al., Never In Care Project. (2012). The influence of perceptions of HIV infection, care, and identity on care entry. AIDS Care 24(6):737 43. Falgas, M.E., Zarkadoulia, E.A., Pliatsika, P.A., & Panos, G. (2008). So cioeconomic status (SES) as a determinant of adherence to treatment in HIV infected patients: a systematic review of the literature. Retrovirology 5:13. doi: 10.1186/1742 4690 5 13. Fife, B.L., & Journal of Health and Social Behavior, 41(1), 50 67. Fleishman, J.A ., Gebo, K.A ., Reilly, E.D ., Conviser, R ., Christopher Mathews W ., Todd Korthuis P ., Hellinger, J ., Rutstein, R ., Keiser, P ., Rubin, H ., Moore, R.D .; HIV Research Network Among HIV Infected Adults in Care 2000 Medical Care 43(9 Su ppl):III40 52. Florida Department of Health, (2012). HIV among Blacks. Retrieved from http://www.floridahealth.gov/dise ases and conditions/aids/surveillance/_documents/fact sheet/2012BlackFactSheet.pdf Florida Department of Hea lth, (2012a ) HIV among women Retrieved from http://www.floridahealth.gov/diseases and conditions/aids/surveillance/_documents/fact sheet/2013 women.pdf Flor ida Department of Health, (2012 ). Florida HIV/AIDS Annual Report 2012. Retrieved from http://www.floridahealth.gov/diseases and conditions/aids/surveillance/epi profiles/HIVAIDS annual morbidity 2012.pdf Flor ida Department of Health, (2013 ). HIV mortality in Florida, 2012.Retrieved from http://www.floridahealth.gov/diseases and conditions/aids/surveillance/_documents/HIV AIDS slide%20sets/State_Deaths_2012.pdf
245 Florida Department of Health, Office of Vital Statistics, Death Certificates (as of 10/25/11). Retrieved from www.doh.state. fl .us/disease_ctrl/aids/.../State_ Deaths _2010.pdf Ford, N., Darder, M., Spelman, T., Maclean, E., Mills, E., & Boulle, A. (2010). Early adherence to antiretroviral medication as a predictor of long term HIV viro logical suppression: five year follow up of an observational cohort. PLoS One 5:e10460. Foster, P.P ., & Gaskins, S.W (2009). Older African Ame ricans' management of HIV/AIDS stigma. AIDS Care, 21(10):130 6 12. doi: 10.1080/09540120902803141. Gant, L., & Welch, L. (2004). Voices less heard: HIV positive African American women, medication a dherence, sexual abuse and self care. Journal of HIV/AIDS and Social Services 3(2), 67 91. Gao, X ., Nau, D.P ., Rosenbluth, S.A ., Scott, V ., & Woodward, C (2000). The relationship of disease severity, health beliefs and medication adherence among HIV patients. AIDS Care. 12(4):387 98. Gardner, L.I ., Metsch, L.R ., Anderson Mahoney, P ., Loughlin, A.M ., del Rio, C ., Strathdee, S ., Sansom, S.L ., Siegal, H.A ., Greenberg, A.E ., & Holmberg, S.D (2005). Antiretroviral Treatment and Access Study Study Group Efficacy of a brief case management intervention to link recently diagnosed HIV infected persons to care. AIDS, 4;19(4):423 31. Gielen, A.C ., McDonnell, K.A ., O'Campo, P.J ., & Burke, J.G (2005). Suicide risk and mental health indicators: Do they differ by abuse and HIV status? Womens Health Issues, 15(2):89 95. Gilman, B ., Hidalgo, J ., Thomas, C ., Au, M ., & Hargreaves, M (2012). Linkages to care for newly diagnosed individuals who test HIV positive in non primary care settings. AIDS Patient Care STDS, 26(3):132 40. Giordano ,T.P ., Bartsch, G ., Zhang, Y ., Tedaldi, E ., Absalon, J ., Mannheimer, S ., Thomas, A ., & MacArthur, R.D (2010). Disparities in outcomes for Afric an American and Latino subjects in the Flexible Initial Retrovirus Suppressive Therapies (FIRST) trial. AIDS Patient Care STDS 24(5):287 95. Gla nz, K., Rimer, B., & Lewis, F. eds. Health Behavior and Health Education: Theory, Research, and Practice, 4th ed. San Francisco, CA: Jossey Bass, 2008:179 205. Glaser, B. & Strauss, A. (1967). The discovery of grounded theory. New York: Aldine Publishing Company. Glaser, B. (1978). Theoretical sensitivity. Mill Valley, CA: The Sociology Press
246 Gonzalez, J.S ., Penedo, F.J ., Antoni, M.H ., Durn, R.E ., McPherson Baker, S ., Ironson, G ., Isabel Fernandez, M ., Klimas, N.G ., Fletcher, M.A ., & Schne iderman, N (2004). Social support, positive states of mind, and HIV treatment adherence in men and women living with HIV/AIDS. Health Psychol, 23(4):413 8. Goodman, L.A., & Fallot, R.D. (1998). HIV risk behavior in poor urban women with serious mental disorders: association with childhood physical and sexual abuse. American Journ al of Orthopsychiatry, 68(1): 73 83. Graham, J.L ., Giordano, T.P ., Grimes, R.M ., Slomka, J ., Ross, M ., & Hwang, L.Y (2010). Influence of trust on HIV diagnosis and care practices: a literature review J Int Assoc Physicians AIDS Care, 9(6):346 52. doi: 10.1177/1545109710380461 Grimes, R.M., & Grimes, D.E. (2010). Readiness: The state of the science (or the lack thereof). Curr HIV/AIDS Rep, 7(4):245 52. Guba, E. G., & Lincoln, Y. S. (1989). Fourth generation evaluation London: SAGE Publications. Halbert, C.H ., Armstrong, K ., Gandy, O.H. Jr & Shaker, L (2006). Racial differences in trust in health care providers. Arch I ntern Med, 166(8):896 901. Hausmann, L.R ., Hannon, M.J ., Kresevic, D.M ., Hanusa, B.H ., Kwoh, C.K ., & Ibrahim, S.A (2011). Impact of perceived discrimination in healthcare on patient provider communication Med Care. 49(7):626 33. Health Resources and Serv ices Administration, HIV/AIDS Bureau. (2009). The Utilization and Role of Peers in HIV Interdisciplinary Teams: Consultation Meeting Proceedings. Retrieved from http://hab.hrsa .gov/newspublications/peersmeetingsummary.pdf Health Resources and Services Administration, HIV/AI DS Programs (2011). Supporting patients in care Retrieved from http://hab.hrsa.gov/deliverhivaidscare/clinicalguide11/cg 101_supporting_patients.html Health Resource s and Services Administration. HIV/AIDS Bureau. (200 3). The Power of Peers on Engagement and Retention i n Care among People of Color. Special Projects o f National Significance Retrieved from http://hab.hrsa.gov/abouthab/s pecial/cyperspnsoctober2013.pdf Health Resources and Services Administration. HIV/ AIDS Bureau. (2005). Providing HIV/AIDS care in a changing environment. Retrieved from http://hab.hrsa.gov/publications/june2005/
247 Hodder, S., Justman, J., Hughes, J., et al. (HIV Prevention Trials Network 064 Study Team ). The HPTN 064 (ISIS Study). HIV Incidence in Women at Risk for HIV: US.19th Conference on Retroviruses and Opportunist ic Infections (CROI 2012). Seattle, WA. March 5 8, 2012. Abstract 1048 Holstad, M.K ., Pace, J.C ., D e, A.K ., & Ura, D.R (2006). Factors associated with adherence to antiretroviral therapy. J Assoc Nurses AIDS Care, 17(2):4 15. Holstad, M.M ., DiIorio, C ., & Magowe, M.K (2006). Motivating HIV positive women to adhere to antiretroviral therapy and risk reduction behavior: the KHARMA Project. Online J Issues Nurs, 11(1): 5. Horne, R ., Buick, D ., Fisher, M ., Leake, H ., Cooper, V ., & Weinman, J (2004). Doubts ab out necessity and concerns about adverse effects: identifying the types of beliefs that are associated with non adherence to HAART Int J STD AIDS 15( 1):38 44. Horne, R ., Cooper, V Gellaitry, G ., Date, H.L ., & Fisher, M (2007). Patients' perceptions utility of the necessity concerns framework. J Acquir Immune Defic Syndr 1;45(3):334 41. Horne, R., Weinman, J. & Hankins, M. (1999). The Beliefs about Antiretroviral medication Questionnaire: The development and evaluation of a n ew method for assessing the cognitive representation of medication. Psychology and Health 14,1 24. Howard, A.A., Arnsten, J.H., Lo, Y., Vlahov, D., Rich, J.D. Schuman, P., Stone, V.E., Smith, D.K., & Schoenbaum, E.E. (2002). A pros pective study of adherence and viral load in a large multi center cohort of HIV infected women. AIDS 16:2175 82. Hudson, A. L., Lee, K. A., Miramontes, H., & Protillot, C. J. (2001). Social interactions, perceived support and level of distress in HIV positive women. Journal of the Association of Nurses in AIDS Care 2(4), 68 76. Ickovics, J.R ., Meade, C.S (2002). Adherence to HAART among patients with HIV: breakthroug hs and barriers. AIDS Care, 14(3):309 18. International Association of Physicians in AIDS Care (IAPAC). Optimizing Entry into and Retention in HIV Care and ART Adh erence for PLWHIV. Retrieved from http://www.iapac.org/uploads/T the T_Manual_092612d.pdf Jacobs, E.A ., Rolle, I ., Ferrans, C.E ., Whitaker, E.E ., & Warnecke, R.B (2006). Understanding African Americans' views of the trustworthiness of physicians. J Gen Intern Med (6):642 7.
248 Jallow, A., Klvemark Sporrong, S., Walther Jallow, L., Persson, P.M., Hellgren, U., & Ericsson, O. Pharmacy care perspectives on problems with HIV antiretroviral therapy in Sweden Pharm World Sci 2007 Aug;29(4):412 21. Epub 2007 Feb 28. Jenness, S.M ., Myers J.E ., Neaigus, A ., Lulek, J ., Navejas, & M ., Raj Singh, S (2012). Delayed entry into HIV medical care after HIV diagnosis: risk factors and research methods. AIDS Care, 24(10):12 40 8. Jevtovic, D.J., Salemovic, D., Ranin, J ., ., Zerjav, S ., & (2007). Longterm survival of HIV infected patients treated with highly active antiretroviral the rapy in Serbia and Montenegro. HIV Med, 8:75 9. Johnson, K.S., Elbert Avila, K.I., & Tulsky J.A. (2005). The influence of spiritual beliefs and practices on the treatment preferences of African Americans: a review of the literature. J Am Geriatr Soc 53( 4):711 9. Johnson, M.O., Chesney, M., Goldstein, R.B., Remien, R.H ., Catz, S ., Gore Felton, C ., Charlebois, E ., Morin, S.F .; NIMH Healthy Living Project Team (2006). Positive provider interactions, adherence self medications among HIV infected adults: A mediation model. AIDS Patient Care STDS, 20(4):258 268. Jones, D ., Cook, R ., Rodriguez, A ., & Waldrop Valverde, D (2013).Personal HIV knowledge, appointment adherence and HIV outcomes. AIDS Behav 17(1):242 9. doi: 10.1007/s10461 012 0367 y. Kempf, M.C ., McLeod, J ., Boehme, A.K ., Walcott, M.W ., Wright, L ., Seal, P ., Norton, W.E ., Schumacher, J.E ., Mugavero, M & Moneyham, L (2010). A qualitative study of the barriers and facilitators to retention in care among HIV positive women in the rural southeastern United Sta tes: implications for targeted interventions. AIDS Patient Care STDS, 24(8):515 20. Kennedy, B.R ., Mathis, C.C ., & Woods, A.K (20 07). Africa n Americans and their distrust of the health care system: healthcare for diverse populations J Cult Divers 14(2):56 60. Kennedy, C.A., Skurnick, J.H., Foley, M., & Louria, D.B. (1995). Gender differences in HIV related psychological distress in heterosexual couples. AIDS Cure, 7(suppl I):S33 S38. Kibicho J., Owczarzak, J., & Pinkerton, S.D. (2012). Opinions of a small sample of pharmacists about pharmacy setting and patient adherence to antiretroviral therapy. J Manag Care Pharm, 18(6):446 52. Kibicho, J., Owczarzak, J. (2003). Pharmacists' strategies for promoting medication adherence among patients with HIV. J Am Pharm Assoc, 2011 Nov Dec;51(6):746 55. doi:10.1331/JAPhA.2011.10190.
249 Kidder, D.P ., Wolitski, R.J ., Campsmith, M.L ., & Nakamura, G.V (2007 ). Health stat us, health care use, medication use, and medication adherence among homeless and housed people living with HIV/AIDS. Am J Public Health 97(12):2238 45. Epub 2007 Oct 30. Kidder, D.P ., Wolitski, R.J ., Royal, S ., Aidala, A ,, Courtenay Quirk, C ., Holtgrave, D.R ., Harre, D ., Sumartojo, E ., Stall, R .; Housing and Health Study Team (2007). Access to housing as a structural intervention for homeless and unstably housed people living with HI V: rationale, methods, and implementation of the housing and health study. AIDS Behav 11(6 Suppl):149 61. Epub 2007 Jun 2. Kirby, J.B., Taliaferro, G., & Zuvekas, S.H. (2 006). Explaining racial and ethnic disparities in health care. Med Care, 44(5 Suppl):I64 72. Kitshoff, C., Campbell, L., & Naidoo, S.S. (2012). The association between depress ion and adherence to antiretroviral thera py in HIV positive patients, KwaZulu Na tal, South Africa. S Afr Fam Pract, 54(2):145 150 Konkle Parker D. (2013). Community level HIV stigma is a publ ic health threat. HIV Clin 25(2):7 9. Konkle Parker, D.J (2001). A motivational intervention to improve adherence to treatment of chronic disease. J Am Acad Nurse Pract. 13(2):61 8. Konkle Parker, D.J ., Amico, K.R ., & Henderson, H.M (2011). Barriers and facilitators to engagement in HIV clinical care in the Deep South: results from semi structured patient interviews. J Assoc Nurses AIDS Care 22(2):90 9. Konkle Parker, D.J., Erlen, J.A., & Dubbert, P.M. (2008). Barriers and facilitators to medication adherence in a Southern Minority population with HIV disease. J Assoc Nurses AIDS Care, 19(2): 98 104 Kremer H., Ironson G., & Porr M.(2009). Spiritual and Min d Body Beliefs as Barriers and Motivators to HIV Treatment Decision Making and Medication Adherence? A Qualitative Study. AIDS Patient Care STDS 23(2): 1 27 134. Kripalani, S., & Weiss, B.D. (2006). Teaching About Health Literacy and Clear Communication. J Gen Intern Med, 21(8):888 90. Laschinger, S.J ., Van Manen, L ., Stevenson T ., & Fothergill Bourbonnais, F (2005). Health care providers' and patients' perspectives on care in HIV ambulatory clinic s across Ontario. J Assoc Nurses AIDS Care 16(1):37 48 Laws, M.B ., Rose, G.S ., Bezreh, T ., Beach, M.C ., Taubin, T ., Kogelman, L ., Gethers, M ., & Wilson, I.B (2012) T reatment acceptance and adherence in HIV disease: patient identity and the perceived impact of physician patient communication. Patient Prefer Adherenc e, 6 :893 903.
250 Lazarus, R.S., & Folkman, S. (1984). Stress, appraisal, and coping. New York: Springer. Lazo, M., Gange, S.J., Wilson, T.E., Anastos, K., Ostr ow, D.G., Witt, M.D., & Jacobson, L.P. (2007). Patterns and Predictors of Changes in Adherence to Highly Active Antiretroviral Therapy: Longitudinal Study of Men and Women. Clin Infect Dis, 45(10):1377 85. Epub 2007 Oct 11. Leaver, C.A ., Bargh, G ., Dunn, J.R ., & Hwang, S.W (2007). The effects of housing status on health related outcomes in people living with HIV: a systematic review of the literature. AIDS Behav 11(6 Suppl):85 100. Epub 2007 Aug 8. Lee Ougo, W ., Boekeloo, B.O ., Thompson, E.E ., Funny, A.S ., Jackson, R.E ., ShuTangyie, G ., & McNeil, J.I (2003). Provider perceptions of key barriers to providing state of the art clinical care for HIV infected African American patients. J Natl Med Assoc 9 5(2 Suppl 2):12S 20S. Lichtenstein, B.(2003).Stigma as a barrier to treatment of sexually transmitted infection in the American deep south: Issues of race, gender and poverty. Social Science & Medicine 57(12), 2435 2445. Linn, J. G., Poku, K. A., Cain, V. A., Holzapfel, K. M., & Crawford, D. E. (1995). Psychosocial outcomes of HIV illness in male and female African American clients. Social Work in Health Care, 21, 43 60. Little, P., Everitt, H., Williamson, I., Warner, G., Moore, M., Gould, C., Ferrie r, K., & Payne, S. (2001). Observational study of effect of patient centredness and positive approach on outcomes of general practice consultations. BMJ, 323:908 11. Low taner, J. (2002). Adherence to triple therapy and viral load response. J Acquir Immune Defic Syndr, 23:360 361. Maggiolo, F ., Ripamonti, D ., Arici, C ., Gregis, G ., Quinzan, G ., Camacho, G.A ., Ravasio, L ., & Suter, F (2002). Simpler regimens may enhance adherence to antiretrovirals in HIV infected patients. HIV Clin Trials 3(5):371 8. Malcolm, S.E., Ng, J.J., Rosen, R.K., & Stone, V.E. (2003). An examination of HIV/AIDS patients who have excellent adherence to HAART. AIDS Care 15, 251 261. Mallinson, R.K ., Rajabiun, S ., & Coleman, S (2007).The provider role in client engagement in HIV care. AIDS Patient Care STDS, 21 Suppl 1:S77 84. Malta, M ., Strathdee, S.A ., Magnanini, M.M ., & Bastos, F.I (2008). Adherence to antiretroviral therapy for h uman immunodeficiency virus/acquired immune deficiency syndrome among drug users: a systematic review. Addiction, 103(8):1242 57.
251 Mannheimer, S., Friedland, G ., Matts, J., Child, C., & Chesney, M. (2002). The consistency of adherence to antiretroviral therapy predicts biologic outcomes for human immunodeficiency virus infected persons in clinical trials. Clin Infect Dis, 34(8):1115 21. Marelich, W.D ., & Murphy, D. A (2003). Effects of empowerment among HIV positive women on the patient provider relationship. AIDS Care 15(4):475 81. Marelich, W.D ., Johnston, R.K Murphy D.A ., & Callari T (2002) HIV/AIDS patient involvement in ant iretroviral treatment decisions. AIDS Care, 14(1):17 26. Marino, P Simoni, J.M ., & Silve rstein, L.B (2007).Peer support to promote medication adherence among people living with HIV/AIDS: the benefits to peers. Soc Work Health Care, 45(1):67 80. Ma rtin, M., Del Cacho, E., Codina, C., Tuset, M., De Lazzari, E., Mallolas, J., Miro, J.M., Gatell, J.M., & Ribas, J. (2008). Relationship between adherence level, type of the antiretroviral regimen, and plasma HIV type 1 RNA viral load: A prospective coh ort study. AIDS Res Hum Retrovirus, 24:1263 1268. McNabb, J., Ross, J.W., Abriola, K., Turley, C., Nightingale, C.H., Nicolau, D.P. (2001). Adherence to highly active antiretroviral therapy predicts virologic outcome at an inner city human immunodeficie ncy virus clinic. Clin Infect Dis 33(5):700 5. Merenstein, D., Schneider, M., Cox, C., Schwartz, R., Weber, K., Robinson, E. et al. (2009). Association of child care burden and household composition with adherence to high active antir study. AIDS Patient Care and STDS 23(4), 289 296. Miles, M.S ., Holditch Davis, D ., Pe dersen, C ., Eron, J.J. Jr Schwartz, T (2007). Emotional distress in African American women with HIV. J Prev Interv Community 33(1 2):35 50. al. (2003). Decline in the AIDS and death r ates in the EuroSIDAstudy: An observational study. Lancet, 362:22 29. Moitra, E., Herbert, J.D., & Forman, E.M. (2011). Accept ance Based Behavior Therapy to Promote HIV Medication Adherence. AIDS Care, 23(12):1660 7. doi: 0.1080/09540121.2011.579945. Moneyham, L., Murdaugh, C., Phillips, K. D., Jackson, K., Tavakoli, A., Boyd, M., & Vyavaharkar, M. (2005). Pat terns of risk for depressive symptoms among HIV+ women in the southeastern United States. Journal of the Association of Nurses in AIDS Care 16(4), 25 38.
252 Moneyham, L., Sowell, R., Seals, B., & Demi, A. (2000). Depressive symptoms among African American women with HIV. Scholarly Inquiry for Nursing Practice 14(1), 3 33. Morisky, D.E., Ang, A., Krousel Wood, M., & Ward, H.J. (2008). Predictive Validity of A Medication Adherence Measure in an Outpatient Setting. J Clin Hypertens (Greenwich), 10(5): 348 354. Mruck, K., Breuer, F. (2003). Subjectivity and Reflexivi ty in Qualitative Research The FQS Issues. Forum: Qualitative Social Research 4 (2), Art. 23, Retrieved from ht tp://nbn resolving.de/urn:nbn:de:0114 fqs0302233 Munakata, J ., Benner, J.S ., Becker, S ., Dezii, C.M ., Hazard, E.H ., & Tierce, J.C Clinical and economic outcomes of nonadherence to highly active antiretroviral therapy in patients with human immunodeficiency virus. Med Care, 44(10):893 9. Murphy, D.A ., Marelich, W.D ., Hoffman, D ., & Steers, W.N (2004). Predictors of Antiretroviral Adherence. AIDS Care, 16(4):471 84. Murphy, K., Hoover, D., Shi, Q. et al. The association of race with death from AIDS in continuous HAART users: WIHS. 19th Conference on Retroviruses and Opportunistic Infections (CROI 2012). Seattle, WA. March 5 8, 2012. Abstract 1045 Musgrave, C.F., Allen, C.E., & Allen, G.J (2002). Spirituality and health for women of color. Am J Public Health, 92:557 560. Muturi, N., & An, S. (2012). HIV/AIDS stigma and religiosity among African American women. J Health Commun, 5(4):388 401. Nachega, J.B., Hislop, M., Dowdy, D.W., Chaisson, R.E., Regensberg, L., & Maartens, G. (2007). Adherence to nonnucleoside reverse transcriptase inhibitor based HIV therapy and virologic outcomes. Ann Intern Med, 146:564 574. National Center for Ethics provider patient communication. Retrieved from http://www.ethics.va.gov/docs/infocus/InFocus_20060401_Teach_Ba ck.pdf National HIV/AIDS Strategy for the US (NHAS). (2010). Reduc i n g H I V Re la ted Di sp ari t i es a nd H e al th Ine q u i t i es. Retrieved from http://www.whitehouse.gov/sites/default/files/uploads/NHAS.pdf Nazione, S ., & Silk, K.J (2013). Patient race and perceived illness responsibility: effects on provider helping and bias. Med Educ 47(8):780 9. Retrieved from www.cdc.gov/ nchs /data/ nvsr / nvsr60 / nvsr60 _03.pdf
253 Norris, A.E ., & DeMarco, R (2005). The experience of African American women living with HIV: creating a prevention film for teens. J Assoc Nurses AIDS Care, 16(2):32 9. Owens, S. (2003). African American women living with HIV/AIDS: Families as sources of support and of stress. Social Work, 48(2), 163 71 Palella, F.J. Jr., Delaney, K.M., Moorman, A.C., Loveless, M.O., Fuhrer, J., Satten, G. A., et al. (1998). Declining morbidity and mortality among patients with advanced human immunodeficiency virus infection. HIV Outpatient Study Investigators. N Engl J Med 338:853 860. Parashar, S ., Palmer, A.K ., O'Brien, N ., Chan, K ., Shen, A ., Coulter, S ., Montaner, J.S ., & Hogg, R.S (2011). Sticking to it: the effect of maximally assisted therapy on antiretroviral treatment adherence among individuals living with HIV who are unstably housed. AIDS Beh av 15(8):1612 22. doi: 10.1007/s10461 011 0026 8. Park Wyllie, L.Y ., Kam, D ., & Bayoumi, A.M. (2009). The adherence support gap: the 'ideal' versus 'reality' of antiretroviral adherence support provided by HIV health providers in clinical practice. Ann Pharmacother 43(6):1036 44. Paterson, D.L., Swindells, S., Mohr, J., Brester, M., Vergis, E.N., Squier, C., Wagener, M.M., & Singh, N. (2000). Adherence to protease inhibitor therapy and outcomes in patients with HIV infection. Ann Intern Med 133(1):21 30. Patton, M. Q. (2002). Qualitative Research and Evaluation Methods Thousand Oaks: Sage. Paxton, S.(2002).The paradox of public HIV disclosure. AIDS Care 14(4),559 567. Peer Education and Evaluation Resource Center. Integrating peers into HIV care and treatment teams. Retrieved from http://peer.hdwg.org/lessons/ Pellowski, J.A (2013) Barriers to care for rural people living with HIV: a review of domestic research and health care models. Assoc Nurses AIDS Care, 24(5):422 37. doi: 10.1016/j.jana.2012.08.007. Epub 2013 Jan 22. Phillips, K., Moneyham, L., Murdaugh, C., Boyd, M. Tavakoli, A., Jackson, K. et al. 2005). Sleep disturbance and depression as barriers to adherence. Clinical Nursing Research 14(3), 27 Population Council. Horizons Project. Peer education and HIV/AIDS: past experience, future directions. Retrieved fr om www.popcouncil.org/pdfs/peer_ed.pdf Portsmouth, S.D ., Osorio, J ., McCormick, K ., Gazzard, B.G ., & Moyle, G.J ( 2005). Better maintained adherence on switching from twice daily to once daily therapy for HIV: a 24 week randomized trial of treatment simplification using stavudine prolonged release capsules. HIV Med, 6(3):185 90.
254 Prachakul, W., Grant, J.S., & Keltner, N.L. (2007). Relationships among functional social support, HIV related stigma, social problem solving, and depressive symptoms in people living with HIV: A pilot study. Journal of Association of Nurses in AIDS Care 18 (6): 67 76. Puigvents, F ., Riera, M ., Delibes, C ., Pearanda, M ., de la Fuente, L ., & Boronat, A (2002). Adherence to antiretroviral drug therapy: A systematic review. Med Clin ( Barc), 119(4):130 7 Rabkin, J.G., Johnson, J., L in, S. & Lipsitz, J.D. (1997) Psychopathology in male and female HIV positive and negative injecting drug users: Longitudinal course over 3 years. AIDS, 11 : 507 515. Raja, S., McKirnan, D., & Glick, N. (2007). The Treatment Advocacy Program Sinai: A Peer Based HIV Prevention Intervention for Working with African American HIV Infected Persons. AIDS Behav, 11:S127 S137. Ramrez, G.P & Ct, J.K (2003). Factors affecting adherence to antiretroviral therapy in people living with HIV/AIDS. J Assoc Nurses AIDS Care 14(4):37 45. Reif, S ., Whetten, K ., Ostermann, J ., & Raper, J.L (2006). C haracteristics of HIV infected adults in the Deep South and their utilization of menta l health services : A rural vs. urban comparison. AIDS Care, 18 (Suppl) 1:S10 7. Richards, L., & Morse, J. M. (2007). methods (2 nd ed.) Thousand Oaks CA: SAGE Publications. Roberts, K.J (2002). Physician patient relationships, patient satisfaction, and antiretroviral medication adhere nce among HIV infected adults attending a public health clinic. AIDS Patient Care STDS, 16(1):43 50. Russell, J. M., & Smith, K. (1999).Aholistic life view of human immunodeficiency virus: African American women. Journal of Holistic Nursing 17 331 346. Ryan White Program. Peer Navigators: An added enhancement to your program. Ryan White Conference. August, 2010. Retr ieved from http://aidsetc.org/target/rw2010/papers/G 13.pdf Sadur, C.N ., Moline, N ., Costa, M ., Michalik, D ., Mendlowitz, D ., Roller, S ., Watson, R ., Swain, B.E ., Selby, J.V ., & Javorski, W.C (1999). Diabetes management in a health maintenance organization: Efficacy of care management using cluster visits. Diabetes Care, 22(12):2011 2017.
255 Saha, S ., Jacobs, E.A ., Moore, R.D ., & Beach, M.C (2010). Trust in physicians and racial disparities in HIV care. AIDS Patient Care STDS, 24(7):415 20. Sankar, A., Luborsky, M., Schuman, P., & Roberts, G. (2000) Adherence discourse among African American women taking HAART. AIDS CARE, 14(2): 203 218 Sarnquist, C.C ., Soni, S ., Hwang, H ., Topol, B.B ., Mutima, S ., & Maldonado, Y.A (2011). Rural HIV infected women's access to medical care: ongoing needs in California. AIDS Care, 23(7):792 6. doi: 10.1080/09540121.2010.516345. Savini, C .J ., James, C.W ., & DiGu glielmo, D.J (2003). Survey of pati ent and clinician attitudes on adherence in a rural HIV clinic. J Assoc Nurses AIDS Care 14(3):72 5. Schackman, B.R ., Ribaudo, H.J ., Krambrink, A ., Hughes, V ., Kuritzkes, D.R ., & Gulick, R.M (2007). Racial differences in virologic failure associate d with adherence and quality of life on efavirenz containing regimens for initial HIV therapy: results of ACTG A5095. J Acquir Immune Defic Syndr, 46(5):547 54. Schietinger, H., & Daniels, E.M. (1996). HIV infection. What nurses need to know. The consumer perspective. Nursing Clinics of North America 31(1), 137 152. Schneider, J., Kaplan, S.H., Greenfield, S., Li, W., & Wilson, I.B. (2004). Physician Patient Relationships and Adherence Better Physician Patient Relationships Are Associated with Higher Reported Adherence to Antiretroviral Therapy in Patients with HIV Infection. J Gen Intern Med 19:1096 1103. Schrimsh aw, E.W., Siegel, K., & Lekas, H.M. (2005). Changes in attitudes toward antiviral medication: a comparison of women living with HIV/AIDS in the pre HAA RT and HAART Eras. AIDS Behav, 9(3):267 79. Scott, J.C ., Conner, D.A ., Venohr, I ., Gade, G ., McKenzie, M ., Kramer, A.M ., Bryant, L ., & Bec k, A (2004). Effectiveness of a group outpatient v isit model for chronically ill older health maintenance organization members: a 2 year randomized trial of the cooperative health care clinic. J Am Geriatr Soc. 52(9):1463 70. Serovich, J.M., Craft, S.M., & friends. AIDS PATIENT CARE and STDs, 26(4), 2012. DOI: 10.1089/apc.2011.0319. Shapiro, M.F., Morton, S.C., McCaffrey, D.F., Senterfitt, J.W., Fleishman, J.A., Perlman, J.F., et al. (1999). Variations in the care of HIV infected adults in the United States. JAMA 218: 2305 2315. Sharpe, T.T., Lee, L.M., Nakashima, A.K., Elam Evans, L.D., & Fleming, P.L. Crack cocaine use and adherence to antiretroviral treatment among HIV infected black women. (2004). Journal of Community Health 29(2), 117 27.
256 Sharpe, T.T., Vote, C., Rose, M.A ., Cleveland, J., Dean, H.D., & Fenton, K. (2012). Journal of Women's Health, 21(3): 249 254. doi:10.1089/jwh.2011.3350. Shuter, J., Sarlo, J., Kanmaz, T., Rode, R., & Zingman, B. (2007). HIV infected patients receiving lopinavir/ritonavir based antiretro viral therapy achieve high rates of virologic suppression despite adherence rates less than 95%. J Acquir Immune Defic Syndr, 45:4 8. Siegel, K., Ravels, V. H., & Gorey, E. (1998). Barriers and pathways to testing among HIV infected women. AIDS Educat ional Prevention 10 114 127. Simoni, J.M., Demas, P., Mason, H.R.C., Drossman, J.A., & Davis, M.L. (2000). HIV disclosure among women of African descent: Associations with coping, social support, and psychological adaptation. AIDS Behav 4:147 58 Simoni, J.M., Mason, H.R.C., Marks, G., Ruiz, M.S., Reed, D., & Richardson, J.L. (1995). disclosure of HIV infection: Rates, reasons, and reactions. J Consult Clin Psychol, 63:474 478. Simoni, J.M ., Pantalone, D.W ., Plummer, M.D ., & Huang, B (2007). A randomized controlled trial of a peer su pport intervention targeting antiretroviral medication adherence and depressive symptomatology in HIV positive men and women. Health Psychol, 26(4):488 95. Smith, C.J ., Staszewski, S ., Sabin, C.A ., Nelson, M ., Dauer, B ., Gute, P ., Johnson, M.A ., Phillips, A.N ., & Gazzard, B (2004). Us e of viral load meas ured after 4 weeks of highly active antiretroviral therapy to predict vir ologic outcome at 24 weeks for HIV 1 positive individuals J Acquir Immune Defic Syndr 37: 1155 1159 Sowell, R.L ., Phillips, K.D ., Murdaugh, C ., & Tavokali, A (1999). Health care providers' influence on HIV in fected women's beliefs and intentions related to AZT therapy. Clin Nurs Res, 8(4):336 54. Sowell, R.L., Seals, B.F., Phillips, K.D., & Julious, C.H. (2003) Disclo sure of HIV infection: how do women decide to tell? Health Education Research 18(1):32 44. Stewart, M. (2001). Towards a global definition of patient centered care. BMJ 322(7284): 444 445. Stirratt, M.J., Remien, R.H., Smith, A., Copeland, O.Q ., Dolezal, C ., Krieger, D .; SMART Couples St udy Team (2006). The role of HIV serostatus disclosure in antiretroviral medication adherence. AIDS Behav, 10:483 493.
257 Stone, V.E ., Hogan, J.W ., Schuman, P ., Rompalo, A.M ., Howard, A.A ., Korkontzelou, C ., Smith, D.K .; HERS STUDY (2001). Antiretroviral regimen complexity, self reported adherence, and HIV patients' understanding of their regimens: survey of women in the her study. J Acquir Immune Defic Syndr, 28(2):124 31. Stone, V.E ., Jordan, J ., Tolson, J ., Miller, R ., & Pilon, T (2004). Perspectives on adherence and simplicity for HIV infected patients on antiretroviral therapy: self report of the relative importance of multiple attributes of highly active antiretroviral therapy (HAART) regimens in predicting adherence J Acquir Immune Defic Syndr, 36(3):808 16. Struass, A., & Corbin, J. (1990). Basics of Qualitative Research: Gr ounded Theory Procedures and Techniques Newbury Park: Sage Publications. Sudano, J.J., & Baker, D.W. (2005). Explaining US racial/ethnic disparities in health declines and mortality in late middle age: the roles of socioeconomic status, health behavio rs, and health insurance. Soc Sci Med, 62(4):909 22. The Antiretroviral Therapy (ART) Cohort Collaboration. (2007). Prognosis of HIV 1 infected patients up to 5 years after initiation of HAART: collaborative analysis of prospective studies. AIDS, 21:1185 97. The Antiretroviral Therapy (ART) Cohort Collaboration. (2008). Life expectance of individuals on combination antiretroviral therapy in high income countries: a collaborative analysis of 14 cohort studies. Lancet, 372:393 9. protect patient safety. R etrieved from http://www.jointcommission.org/assets/1/18/improving_health_literacy.pdf The Kaiser Foundation (2012). National Survey of Teens and Young Adults on HIV/AIDS. Retrieved from http://kaiserfamilyfoundation.files.wordpress.com/2013/01/8386 f.pdf The Kaiser Family Foundation. (2011). Data Source: Centers for Disease Con trol and Prevention, Division of HIV/AIDS Prevention Surveillance and Epidemiology, Special Data Request; 2011. Retrieved from www.statehealthfacts.org T he Kaiser Foundation (2013). Black Americans and HIV/AIDS. Retrieved from http://kff.org/hivaids/fact sheet/black americans and hiv aids/#footnote cdcfsnewinfections Thompson, M.A ., Mugavero, M.J ., Amico, K.R ., et al. (2012). Guidelines for improving entry into and retention in care and antiretroviral adherence for persons with HIV: evidence based rec ommendations from an International Association of Physicians in AIDS Care panel. Ann Intern Med, 156(11):817 33, W 284 W 294. Epub 2012 Mar 5.
258 Thrasher, A.D., Earp, J.A., Golin, C.E., & Zimmer, C.R. (2008). Discrimination, distrust, and racial/ethnic disparities in antiretroviral therapy adherence among a national sample of HIV infected patients. J Acquir Immune Defic Syndr, 49:83 93. Towle, A ., & Godolphin, W. (2013). Patients as educators: Interprofessional learning for patient centred care. Med Teach, 35(3):219 25. doi: 10.3109/0142159X.2012.737966. Epub 2013 Feb 20. Towle, A ., Bainbridge, L ., Godolphin, W ., Katz, A ., Kline, C ., Lown, B ., Madularu, I ., Solomon, P ., & Thistlethwaite, J (2010). Active patient involvement in the education of health professionals Med Educ, 44(1):64 74. doi: 10.1111/j.1365 2923.2009.03530.x. Trotta, M.P ., Ammassarim, A ., Melzi, S Zaccarelli, M ., Ladisa, N ., Sighinolfi, L ., Mura, M.S ., d'Arminio Monforte, A ., Antinori, A .; AdICoNA Study Group (2002). Treatment related factors and highly active antiretroviral therapy adherence. J Acquir Immune Defic Syndr, 31 Suppl 3:S128 31. Trzynka, S., & Erlen, J. (2004). HIV disease susceptibility in women and the barriers to adherence. Med Surg Nursing ,13(2), 97 105. Tufts, K., Wessell, J. & Kearney, T. (2010). Self care behaviors of African American Women living with HIV: a qualitative perspective. Journal of the Association of Nurses in AIDS Care 21(1), 36 52. Turner, G., & Shepherd, J. (1999). A method in search of a theory: Peer education and health promotion. Health Education Research, 14(2):235 247. T urner,B.J.,Fleishman,J.A.,Wenger,N.,London,A.S.,Burnam,M.A.,Shapiro, M.F., Bing, E.G., Stein,M.D., Longshore,D., & Bozzette,S.A., (2001). Effects of drug abuse and mental disorders on use and type of antiretroviral therapy. in HIV infected persons. J. Gen. Intern. Med 16, 625 633. U.S. Census Bureau. (2012). The 2010 Census Brief: Overview of Race and Hispanic Ori gin. Retrieved from http://www.census.gov/population/race/ U.S. Department of Health and Human Services, Indian Health Service. Health Communications: Patient provider Communication Toolkit. Retrieve d from http://www.ihs.gov/healthcommunications/index.cfm?module=dsp_hc_toolkit Valverde, E.E ., Waldrop Valverde, D ., Anderson Mahoney, P ., Loughlin, A.M ., Del Rio, C ., Metsch, L ., & Gardner, L.I (2006). System and patient barriers to appropriate HIV care for disadvantaged populations: the HIV medical care provider perspective J Assoc Nurses AIDS Care, 17(3):18 28.
259 Vervoort, S.C., Borleffs, J.C., Hoepelman, A.I., & Grypdonck, M.H. (2007). Adherence in antiretroviral therapy: a review of qualitative studies. Adherence in antiretroviral therapy: a review of qualitative studies. AIDS, 21:271 281 Vyavaharkar, M ,. Moneyham, L ., Tavakoli, A ., Phillips, K.D ., Murdaugh, C ., Jackson, K ., & Meding, G (2007). Social support, coping, and medication adherence among HIV positive women with depression living in rural areas of the southeastern United States. AIDS Patient Care STDS, 21(9):667 80. Vyavaharkar, M., Moneyham, L., Corwin, S., Saunders, R., et al. (2010). Relationships between stigma, social support, and depression in HIV Infected African American women living in the rural Southeastern United States. Journal of the Association of Nurses in AIDS Care 21(2) : 144 152 Vyavaharkar, M ., Moneyham, L ., Corwin, S ., Tavakoli, A ., Saunders, R ., & Annang, L (2011). HIV disclosure, social support, and depression among HIV infected African American women living in the rural southeastern United States. AIDS Educ Prev, 23(1):78 90 Wagner, E., Grothaus, L., Sandhu, N., Galvin, M.S ., McGregor, M ., Artz, K ., & Coleman, E.A (2001). Chronic care clinics for diabetes in primary ca re: a system wide randomized trial. Diabetes Care 24(4):695 700. Wagner, G.J., Kanouse, D.E., Koegel, P., & Sullivan, G. (2003). Adherence to HIV antiretrovirals among persons with serious mental illness. AIDS Patient Care STDS 17:179 86. Waldrop Valverde, D ., Jones, D.L ., Gould, F ., Kumar, M ., & Ownby, R.L (2010). Neurocognition, health related reading literacy, and numeracy in medic ation management for HIV infection AIDS Patient Care STDS, 24(8):477 84. doi: 10.1089/apc.2009.0300. Waldrop Valverde, D ., Osborn, C.Y ., Rodriguez, A ., Rothman, R.L ., Kumar, M ., & Jones, D.L (2010). Numeracy skills explain racial dif ferences in HIV medication management. AIDS Behav 14(4):799 806. doi: 10.1007/s10461 009 9604 4. Epub 2009 Aug 8. Watkins lack Women Living with HIV/AIDS in Gender and HIV in the Caribbean and Beyond. Rhoda Reddock, Sandra Reid, Dianne Douglas, and Dorothy Roberts (Editors). Kingston, Jamaica: Ian Randle Publi shers Watkins Hayes, C., Pittman Gay, L., & Framing institutions and the coping processes of African American women living with HIV/AIDS. Soc Sci Med 74(12):2028 36. doi: 10.1016/j.socscimed.2012.02. 001. Epub 2012 Mar 9.
260 Weaver, K.E., Llabre, M.M., Duran, R.E., Antoni, M.H., Ironson, G., Penedo, F.J., et al. (2005). A stress and coping model of medication adherence and viral load in HIV positive men and women on highly active antiretroviral therapy (HAART). Health Psychology 24, 385 392. Weiss, L ., French, T ., Finkelstein, R ., Waters, M ., Mukherjee, R ., & Agins, B (2003). HIV related knowledge and adherence to HAART. AID S Care, 15(5):673 9. Weiss, L ., French, T ., Waters, M ., N etherland, J ., Agins, B ., & Finkelstein, R (2006). Adherence to HAART: perspectives from clients in treatment support programs. Psychol Health Med 11(2):155 70. Well Florida. Area 3 /23 HIV/AIDS Prevention Needs Assessment. June, 2010. Retrieved from http://wellflorida.org/wp content/uploads/2012/10/HIV combined document FINAL.pdf Wendorf, A.R ., & Mosack, K.E (2013). Navigating hazardous conditions: understanding HIV medication adherence in the context of depression. Qual Health Res, 23(4):541 54. doi: 10.1177/1049 732312469462. Whetten, K., Leserman, J., Whetten, R., et al. (2006). Exploring lack of trust in care providers and the government as a barrier to health service use. Am J Public Health 96:716 721. Williams, D.R (1999). Race, socioeconomic status, and health. The added effects of racism and discrimination. Ann N Y Acad Sci, 896:173 88. Wilson, H.W ., Emerson, E ., Donenberg, G.R ., & Pettineo, L (2013). History of sexual abuse and development of sexual risk behavior in low income, urban African American girls seeking mental health treatment. Women Health, 53(4):384 404. Wingood, G.M ., & DiClemente, R.J (19 97). Child sexual abuse, HIV sexual risk, and gender relations of African American women. Am J Prev Med 13(5):380 4. Wiskniewski, A., Apel, S., Selne s, O., Nath, A., McArthur, J., & Dobs, A. (2005). Depressive symptoms, quality of life, and neuropsychological performance in HIV/AIDS: the impact of gender and injection drug use. Journal of Neuro Virology 11, 138 143. Wood, S.A., Tobias, C. & McCree, J. (2004). Medication adherence for HIV positive women caring for children: in their own words. AIDS Care 16(7): 909 13. World Health Organization (WHO) (2003) Adherence to long term therapies: Evidence for action. Retrieved from http://apps.who.int/medicinedocs/en/d/Js4883e/8.6.4.html#Js4883e.8.6.4 World Health Organization (WHO) (2003) Adherence to long term therapi es evidence for action. Ret rieved from http://www.who.int/chp/knowledge/publications/adherence_full_report.pdf
261 BIOGRAPHICAL SKETCH Olihe Okoro earned her Bachelor of Pharmacy degree (BPha rm) from the University of Nigeria in 1998. She also received her Master of Pharmacy degree in Clinical Pharmacy/Pharmacology from the same University in 2004. Prior to her admission into the PhD program, she worked as a pharmacist in diverse practice sett ings including retail pharmacy, pharmaceutical industry and hospital. She also worked as a volunteer pharmacist in a PEPFAR funded HIV clinic located in a rural setting in Easter Nigeria where she developed an interest in patient outcomes research. While pursuing her PhD in the University of Florida, Olihe worked as a teaching assistant in the Department of Pharmaceutical Outcomes and Policy, College of Pharmacy. In this role she helped to prepare course curriculum, facilitated student group discussions, g She also worked as a research assistant on a project where she developed and taught modules to train over 200 community health workers. Alongside her PhD studies, she was enrolled in a non tr aditional dual degree program and earned a Master of Public Health (MPH) in Social and Behavioral Sciences (2013). Olihe Okoro has been a recipient of numerous honors and awards including the Faculty for the Future Scholarship for two consecutive years; Competency and Diversity Award and the Marilyn Little Scholarship for international students. Olihe has carried out research focusing on cultural competency in Pharmacy Education and health disparities in HIV/AIDS. Her research has bee n accepted for
262 presentation at national and international conferences including the Annual Meetings of the Association of American Colleges of Pharmacy (AACP) and the XIX International AIDS Conference, 2012. In addition, Olihe has published her work in the American Journal of Pharmacy Education Patient and Health Care Provider Perceptions on Linkage to Care and Medication Adherence among African American Women living with HIV/AIDS A Comparative Qualitative Analysis was supervised by Dr. Folakemi Odedina. Following her graduation, Olihe plans to continue building a career in the academia and conducting patient outcomes research.