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1 A COMMUNITY BASED PARTICIPATORY APPROACH TO FACILITATE LINKAGE TO CARE FOR PERSONS WITH HIV By CHRISTA L. COOK 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 2013
2 2013 Christa L. Cook
3 To my husband Bob and sons, Cameron, Noah, and Christian
4 ACKNOWLEDGMENTS The process of completing a PhD and writing a dissertation is a challenge without the support of many people in your life. My dissertation chair, Dr. Barbara Lutz, began mentoring me long before assuming the lead position on my committee. She has helped me immensely as a source of knowledge and support throughout this process. Dr. Allyson Hall helped me understand the larger picture of access to and became a friend in the process. Dr. Mary Ellen Young connected me to a new body of counseling literature that allowed me to find missing links in my data. Dr. Jeanne Stacciarini and Dr. Bridgett Rahim Williams expanded my awareness regarding community engagement and cultural inclusion in the way I examined the probl em. I would like to thank Sigma Theta Tau, Alpha Theta Chapter, for providing me with the funding necessary to complete the study. The Florida Association of Public Health Nurses and the College of Nursing Deans Office provided needed financial support through scholarships and stipends. The staff in the Office of Research Support Dr. Jennifer Elder, Patti Jamison, Laurie Rinfret, and Pam Selby helped me numerous times in grant submissions. Friends help lift you up and help you remember there is a life outside of graduate school. I want to acknowledge my Fermenting Friday neighbors, Angie, Joe, Jeff, and Silvia, who always provided a laugh and much needed reprieve from the demands. My book club friends welcomed me month after month even though I rarely read the book. My mother understood this process like no one else in my life. She knew when to provide refuge, editorial support, organizational help, and fundamental challenges when trying to understand topics such as philosophy. I am proud to follow in her steps
5 and complete doctoral level education. My inlaws assumed many child care duties and emergency help when I had to be in several places at once. Members of the community were largely responsible for the success of this research. It is easy to get lost in research literature and to forget the data reported in journals do not adequately reflect the individual challenges of s uccessfully living with HIV. I want to thank my mentors at the Alachua County Health Department (Bobby, Gay, Martha, Tammy, Teresa), Well Florida (Karen), my Community Advisory Board, members of the local Area 3/13 Ryan White Care Consortium, PEP club, and GAAP. They kept me in touch with the reality of living with HIV. And most importantly, I want to thank the participants in this project who were courageous and willing to share their stories with me and assist me in this next phase of my career. Finally I want to acknowledge my kids and husband for letting me go for a few years to finish this process. They put up with the rollercoaster of demands and emotions that comes with completing a PhD and provided hugs and encouragement when needed. Additionall y; they tolerated an unclean, disorganized house, as well as more than a few make your own dinners. I look forward to our lives returning to normal just a bit!
6 TABLE OF CONTENTS page ACKNOWLEDGMENTS .................................................................................................. 4 LIST OF TABLES ............................................................................................................ 9 LIST OF FIGURES ........................................................................................................ 10 LIST OF ABBREVIATIONS ........................................................................................... 11 ABSTRACT ................................................................................................................... 12 CHAPTER 1 WHY RESEARCH LINKAGE TO CARE? ............................................................... 14 Reducing Health Disparities .................................................................................... 16 Overview of Linkage to Care Barriers ..................................................................... 16 HIV Linkage to Care in Florida Current Picture .................................................... 20 Preliminary Work .................................................................................................... 21 Summary ................................................................................................................ 22 2 LITERATURE REVIEW .......................................................................................... 24 Barriers to Linkage to Care ..................................................................................... 24 Clin ical and Epidemiological Review of HIV and Linkage to Care .................... 24 Qualitative Review of HIV and Linkage to Care ................................................ 26 A Review of Interventions for Newly Diagnosed HIV .............................................. 28 Public Health Case Management Model .......................................................... 29 Transitional Care Models .................................................................................. 32 Patient Centered Medical Home Model ............................................................ 34 Disparities and Linkage to Care .............................................................................. 36 Summary ................................................................................................................ 37 3 CONCEPTUAL FRAMEWORK AND METHODS ................................................... 41 A Note about Perspective ....................................................................................... 41 Conceptual Frameworks ......................................................................................... 41 Social Ecological Models .................................................................................. 42 Symbolic Interactionism .................................................................................... 46 Grounded Theory ............................................................................................. 47 Strengths and Limitations of Using Grounded Theory ...................................... 49 Community Based Participatory Research ....................................................... 51 Summary of Conceptual Frameworks .............................................................. 54 Researcher Assumptions (Reflexivity) .................................................................... 55 Research Methods .................................................................................................. 58
7 Specific Aims .................................................................................................... 58 Sampling Plan and Recruitment ....................................................................... 59 El igibility criteria. ............................................................................................... 64 Recruitment ...................................................................................................... 64 Procedure (Data Collection) ............................................................................. 64 Aim 1 Community Advisory Board .......................................................... 64 Aim 2 Participant Interviews .................................................................... 65 Data A nalysis ................................................................................................... 69 Aim 1 Analysis ........................................................................................... 69 Aim 2 Analysis ........................................................................................... 70 Integrity and Prot ection of Human Subjects ............................................................ 73 Evaluation Criteria ............................................................................................ 73 Protection of Human Subjects .......................................................................... 75 Sources of data .......................................................................................... 75 Potential risks ............................................................................................. 76 Protections against risk .............................................................................. 77 Potential benefits of the proposed research to human subjects and others ..... 78 Importance of the knowledg e to be gained ....................................................... 78 4 COMMUNITY ADVISORY BOARD......................................................................... 95 Demographics ......................................................................................................... 96 Perspectives on Linkage to Care ............................................................................ 96 Interactions with Providers or Health Care System .......................................... 96 Impact of Diagnosis .......................................................................................... 98 Individual Circumstances .................................................................................. 99 Summary of Community Perspectives on Linkage ......................................... 100 CAB Study Method Recommendations ................................................................. 102 Sample and Recruitment ................................................................................ 102 Data collection ................................................................................................ 104 Evaluation of CBPR .............................................................................................. 105 Summary .............................................................................................................. 110 5 PARTICIPANT INTERVIEWS ............................................................................... 114 Demographics ....................................................................................................... 114 The Decision Process and Recommendations of Linkage to Care (Model Description) ....................................................................................................... 115 The Context of Linkage to Care: Stigma ............................................................... 117 Stigma and Rural or Small Metropolitan Areas ............................................... 118 Stigma and Minorities ..................................................................................... 120 Stigma Summary ............................................................................................ 122 What are t he Conditions that Influence Linkage to Care? ..................................... 122 Defining Care ................................................................................................. 122 Engaging in Care ............................................................................................ 124 Conflicting Messages of Care ......................................................................... 126 Ce ntral Need throughout Trajectory: Support ................................................. 127
8 The Process of Linking to HIV Care and Decision Points of Linkage .................... 130 HIV Diagnosis ................................................................................................. 130 Anticipatory guidance ............................................................................... 131 Diagnosis delivery .................................................................................... 132 Grief or Crisis Response ................................................................................ 133 Maintaining connection through the transition .......................................... 136 Navigation ................................................................................................ 138 Counseling ............................................................................................... 140 Resolution (Re Appraisal): The Decision Point of HIV Care ........................... 141 HIV Care ......................................................................................................... 142 Holistic understanding beyond the patient ............................................... 143 Decision making ....................................................................................... 145 Delay or Intermittent Care .............................................................................. 146 Pivotal Events ................................................................................................. 147 Summary .............................................................................................................. 150 6 DISCUSSION ....................................................................................................... 153 Support ................................................................................................................. 153 HIV Care Decision Making: Crisis and Decisions ................................................. 156 Crisis and Decisions ....................................................................................... 156 Crisis Decision Theory .................................................................................... 157 Goals .............................................................................................................. 159 Quality ............................................................................................................ 160 Anticipatory Guidance .................................................................................... 161 Patient Centered Care .......................................................................................... 162 Implications for Practice ........................................................................................ 163 Pivotal Events: A New Opportunity for Intervention .............................................. 164 Limitations ............................................................................................................. 165 Directions for Futur e Research ............................................................................. 167 HIV Diagnosis ................................................................................................. 167 HIV Care that is Patient Centered .................................................................. 168 CBPR ............................................................................................................. 169 Summary .............................................................................................................. 169 APPENDIX A RECRUITMENT FLYERS ..................................................................................... 174 B PARTICIPANT INTERVIEW GUIDE AIM 2 ........................................................ 176 C FOCUS GROUP OUTLINE/QUESTION GUIDE ................................................... 178 LIST OF REFERENCES ............................................................................................. 179 BIOGRAPHICAL SKETCH .......................................................................................... 192
9 LIST OF TABLES Table page 1 1 Engagement in Care Continuum (HRSA, 2006) ................................................. 23 2 1 Case Management Models ................................................................................. 39 3 1 Mc Leroys (1988) Adaptation of Bronfenbrenners Social Ecological Model ....... 81 4 1 Demographics of Community Advisory Board Participants .............................. 112 5 1 Demographics of Participant Interviews ........................................................... 151 6 1 HIV Linkage to Care The Disconnect between Patient and System .............. 171
10 LIST OF FIGURES Figure page 3 1 Bronfenbrenners Social Ecological Model ......................................................... 80 3 2 Development of a Linkage to Care Grounded Theory Using a Social Ecological Model ................................................................................................ 82 3 3 The Relationships Among Conceptual Models ................................................... 83 3 4 Area 3/13 ............................................................................................................ 84 3 5 Barriers to Ca re Model Presented to Community Advisory Board ...................... 85 3 6 Draft Linkage to Care Advertisement for Community Advisory Board Meeting .. 86 3 7 Representation of Drawing used in Select Participant Interviews ....................... 87 3 8 Early Model Iteration ........................................................................................... 88 3 9 Gr ounded Theory Analytical Process ................................................................. 89 3 10 Example of Early Analytic Memo Support as a Mediator for Crisis and Outcomes ........................................................................................................... 90 3 11 Example of Process Diagram from Early Coding ................................................ 91 3 12 Excerpt from Spreadsheet used to compare data within and between participants. ........................................................................................................ 92 3 13 Initial Coding Categories and Schatzmans (1991) Explanatory Matrix .............. 93 3 14 Example of Exploration of Conceptual Ideas in Data .......................................... 94 4 1 Community Advisory Board Overview of Area 3/13 Linkage to Care ................ 113 5 1 HIV Care Decision Process Model ................................................................... 152 6 1 Adaptation from McNairy and El Sadr (2012) ................................................... 172 6 2 Revised Social Ecological Model ...................................................................... 173
11 LIST OF ABBREVIATIONS HIV Human Immunodeficiency Virus, the virus that causes AIDS. The virus is known for destroying cells critical to a persons immune response (http://www.cdc.gov/hiv/topics/basic/index.htm). AIDS Acquired Immunodeficiency Syndrome. The late stages of HIV infection in which a persons immune response is compromised making them at risk of infections and cancers. A CD4 cell count less than 200 is classified as AIDS (http://www.cdc.gov/hiv/topics/basic/index.htm). CD4 T C ELL A type of cell in the body that is important in fighting infection. The HIV virus destroys these cells (http://www.cdc.gov/hiv/resources/qa/definitions.htm). Ryan White A teenager who contracted HIV from a blood transfusion and became nationally known when he was expelled from school because of fear of HIV. Congress passed the Ryan White CARE Act months before he died. R YAN W HITE CARE ACT The Comprehensive AIDS Resources Emergency (CARE) Act was passed by Congress in 1990 to assist persons with HIV/AIDS to pay for HIV/AIDS treatment if no other sources of payment are available. It has been reauthorized 4 times (1996, 2000, 2006, 2009) and is now called the Ryan White HIV/A IDS Treatment Extension Act of 2009. CD4 T C ELL A type of cell in the body that is important in fighting infection. The HIV virus destroys these cells (http://www.cdc.gov/hiv/resources/qa/definitions.htm). Ryan White CARE Consortium A requirement of Part A of the Ryan White Care Act requires each eligible metropolitan area to develop a local planning council that includes representation from providers and consumers of Ryan White services to plan for the provision of services with allocated Federal fun ds. The name of this council in Area 3/13 is the Ryan White CARE Consortium (RWCC). A REA 3/13 A 15 county service area in North Central Florida (Figure 3 4). L INKAGE TO CARE A term used among persons working in the HIV field that refers to the process of a person with HIV not seeking care for their HIV and changing this to when they engage in the healthcare system. CBPR Community Based Participatory Research (CBPR) is an approach to research focusing on the research needs identified through partnerships between the community and the researcher.
12 Abstract of Dissertation Presented to the Graduate School of the University of Florida in Partial Fulfillment of the Requirements for the Degree of Doctor of Philosophy A COMMUNITY BASED PARTICIPATORY APPROACH TO FACILITATE LINKAGE TO CARE FOR PERSONS WITH HIV By Christa L. Cook May 2013 Chair: Barbara Lutz Major: Nursing Sciences This dissertation research serves as a foundation for building an ongoing program of research devoted to facilitating linkage to care among persons with Human Immunodeficiency Virus ( HIV ) Approximately 25% of persons testing positive for HIV infection do not access healthc are for HIV infection within 3 months of diagnosis. Increasing the proportion of newly identified persons who are linked to HIV care is currently a high priority for HIV prevention. Several barriers in linkage to care have been identified, and the few intervent ions to improve linkage involve additional healthcare resources that may not be available outside a research setting or in small metropolitan or rural areas. Thus, there is a critical need to identify strategies to improve linkage to care for HIV th at do not require additional resources. In completing this research, we used a Community Based Participatory Research (CBPR) approach to partner with community providers, consumers and advocates to identify linkage strategies that would not further strain current limited resources. The project consisted of two components. First, we establish ed a Community Advisory Board (CAB) for Area 3/13 (a 15county area in North Central Florida that provides a range of HIV related services). The CAB provided input on all phases of the
13 research process. Second, we conduct ed a qualitative grounded theory study with a sa mple of 19 persons with HIV who were representative of HIV infected persons in North Central Florida. To gain understanding of the spectrum of issues invol ved in seeking HIV care, we recruit ed participants who had not initiated HIV care, who delayed seeking HIV care, and who initiated HIV care as soon as they wer e diagnosed. Transcripts were anal yzed using grounded theory methods and we developed a theory id entifying the provision of support throughout the care trajectory as the central influence on linkage to HIV care. Participants identified when and how support should be provided. Results from this research will be presented to the CAB, and members will th en help to identify specific intervention strategies to improve linkage to care. B ased on these findings we will develop and test an intervention for linkage to care.
14 CHAPTER 1 WHY RESEARCH LINKAGE TO CARE? Every nine and a half minutes someone in the United States is diagnosed with Human Immunodeficiency Virus (HIV), the virus that causes Acquired Immune Deficiency Syndrome (AIDS) ( Centers for Disease Control, n.d. ) Th e virus is transmitted primarily through unprotected sex, needle sharing and perinatal (mother to child) transmission. In the US, approximately 1.1 million persons are living with HIV/AIDS, and 56,300 are newly infected with HIV each year ( Centers for Disease Control, 2010; Florida Department of Health, 2013) In Florida, there were 5,608 new cases of HIV diagnosed last year, and there are approximately 117,612 Florida residents livin g with HIV/AIDS ( Florida Dep artment of Health, n.d. ) In a 15county region of North Central Florida, there are almost 2,900 persons living with HIV/AIDS ( Florida Department of Health, 2013) In recent years, as part of prevention efforts for Human Immunodeficiency Virus (HIV), there has been increased focus on helping people become aware of their HIV status through expanded testing efforts. However, not everyone testing positive for HIV seeks medical care for the disease. National estimates indicate approximately 25% 31% of persons with HIV/AIDS fail to seek treatment after initial diagnosis (Gardner, McLees, Steiner, Rio, & Burman, 2011; Marks, Gardner, Craw, & Crepaz, 2010; Torian & Wiewel, 2011) The State of Florida estimates 63% of persons diagnosed with HIV link to HIV care within 90 days. Within the North Central Florida region, approximately 57% link to care within 90 days ( Florida Department of Health, 2012) The Centers for Disease Control (CDC) have implemented several strategies to advance HIV prevention, among them to prevent new infections by educating persons diagnosed with
15 HIV (and their partners) about the importance of care. Thus, to address the CDC strategy, persons with HIV must initiate care. The process of being diagnosed and seeking care for the disease is known among people who work with HIV patients as engagement in HIV care or linkage to care and empirical evidence supports timely linkage for prevention. Linkage to care encompasses a continuum of HIV care that ranges from those who are unaware of their HIV status to persons fully engaged in care (Table 11) ( Health Resources and Services Administration, 2006) Currently, the local standard for linkage to care is a passive referral system in which a newly diagnosed person is told of care op tions. This leaves the next steps of facilitation for his or her own care up to the person with HIV. For many, this transition is apparently a challenge. The significant number of people newly diagnosed with HIV who are not seeking treatment despite avail able resources for HIV care (i.e., Ryan White HIV/AIDS Program) has led to a surge of interest in investigating what is happening with this population. While prevention efforts and improved screening methods have fostered identification of more persons wi th the disease, an important issue remains: how can we encourage or facilitate persons newly diagnosed with HIV/AIDS to seek care that will help them transition into chronic disease management specifically, management that will decrease spread of the infec tion? Improved outcomes from engaging in HIV care can be seen at both individual and population levels. At the individual level, persons engaged in care experience decreased mortality and fewer opportunistic infections. Persons who do not engage in HIV care in the first year after diagnosis have a 2.3 times higher mortality risk than
16 those who do engage in care ( Mugavero et al., 2009) I n a recent study of HIV transmission risk behaviors among persons successfully linked to care, researchers found that persons seen at least 3 times for HIV care 6 months after their initial diagnosis were twice as likely to abstain from having unprotected sex with a person whose status was HIV negative or unknown ( Metsch et al., 2008) Furthermore, pers ons engaged in both care and Highly Active Antiretroviral Therapy (HAART) have a decreased viral load and are less likely to transmit the virus which further aids in prevention strategies ( Quinn et al., 2000 ) Reducing Health Disparities Health disparities, such as those in HIV/AIDS, are at the forefront of concern for public health, and reducing these disparities was identified as one of the main goals in the National HIV/AIDS Strategy for the United St ates ( Obama, 2010 ) While African Americans/Blacks comprise approximately 13% of the total U.S. population, approximately 50% of the HIV/AIDS cases diagnosed between 20052008 were African American/Black ( Laffoon, Johnson, Cohen, Hu, & Shouse, 2011) Men who have sex with men experience the greatest burden in this population (Laffoon et al., 2011) Among women, African American/Black women account for 65.9% of diagnoses, with most being through heterosexual contact (Laffoon et al., 2011) Latinos are also di sproportionately impacted by HIV, accounting for 13.4 % of the total population, and 17.8% of HIV diagnoses (Laffoon et al., 2011) To address disparities among those being infected with HIV/AIDS, persons infected with this disease must be linked to care. Overvie w of Linkage to Care Barriers To understand the complexity of linkage to HIV care, Social Ecological Models can help differentiate the levels of influence in the decision to link to HIV care. At the
17 intrapersonal level, issues such as lack of knowledge about HIV, care options, attitudes, beliefs, mental health issues, substance abuse, and socioeconomic status can hinder persons with HIV from linking to care ( Tobias, Cunningham, Cunningham, & Pounds, 2007) Low socioeconomic status may, for example, hinder linkage, since priorities for basic needs such as food and shelter compete with health care needs (Tobias et al., 2007) Barriers to HIV care at the interpersonal level include stigma and homophobia (Tobias et al., 2007) HIV related stigma refers to prejudice and discrimination toward people with HIV/AIDS. Homophobi a is a dislike or aversion to individuals with a samegender sexual orientation (homosexual), with which the disease has been associated ( Herek, 2009) Community, organizational and policy influences on barriers to HIV linkage to care include integrated surveillance, testing, support services, clinical care services, treatment guidelines, funding, limited workforce, and reimbursement for HIV services ( Mugavero, Norton, & Saag, 2011) Influences on the decision to seek HIV care have been investigated only in large metropolitan areas. Beer and colleagues ( Beer, Fagan, Valverde, & Ber tolli, 2009 ) conducted a qualitative analysis of 37 persons from five US cities and found three key themes that influenced persons decisions to initiate care: disbelief about HIV status; conceptions of illness and appropriate health care; and negative experiences and distrust of health care. Alfonso, Bermbach, Geller, and Montaner ( 2006) used a critical incident technique that specifically addressed initiation of antiretroviral therapy and identified four categories of decisional influence: medication factors, mood, lack of support, and outc ome expectancies. Both studies identified interpersonal, intrapersonal, and organizational influences on the decision to seek HIV care.
18 However, given the geographic regions of these studies (5 major cities and Canada), processes of decision making may differ for persons in smaller metropolitan or rural areas. For example, stigma associated with obtaining care and limited numbers of providers in rural areas provide additional challenges for persons diagnosed with HIV who are afraid of their status being discovered. Current literature identifies several successful strategies for linkage to care including case management, system navigation, outreach models, and integrated health care systems. For example, findings from the Antiretroviral Treatment Access S tudy (ARTAS), a strengths based case management intervention, revealed significant increase in linkage to care for the intervention group (Gardner et al., 2005) While these findings show promise, small metropolitan or rural health departments do not have access to the same amount of funding as larger metropolitan regions. Thus, without additional funding, they do not have resources to i mplement this type of case management strategy. System navigation, an intervention modality that is based on a social work model, assists patients to overcome barriers (structural, financial, and personal), improve mediators (efficacy of treatment, quality of treatment, adherence), and improve outcomes (morbidity, mortality, well being, and functioning) ( Bradford, Colem an, & Cunningham, 2007) This type of model requires assistance from trained personnel to help patients navigate through the system and treatment, but personnel are not always adequately trained for the challenging evaluation process involved (Bradford et al., 2007) Similar to system navigation, outreach initiatives for linkage to care have also shown some promising results in larg er metropolitan areas. In the California Bridge
19 Project, peer based staff assisted with linkage to care for approximately one third of HIV positive persons not currently in care (Molitor et al., 2006; Mugavero et al., 2011) However, this effort was time and resourceintensive. Finally, integrated health care systems such as Kaiser and the Veterans Administration (VA) have adopted system level improvements to streamline the process from diagnosis to care, but these systems do not have the same types of service fragmentation seen in a majority of US health care systems (Mugavero et al ., 2011) While innovative strategies enhancing linkage to care have shown promise in large metropolitan areas, implementation in smaller targeted metropolitan/rural areas, such as Area 3/13, have met with considerable challenges in funding and feasibility (Davis, 2010; Mugavero et al., 2011) Thus, with our currently available resources, we have not been able to foster linkage to care for persons diagnosed with HIV. Furthermore, national funding shortages for HIV care prevent implementation of linkage to care strategies that require additional personnel (Mugavero et al., 2011) Despite these limits, while working as a public health nurse intern in the Alachua County Health Department, the author was able to envision ways to adapt aspects of current successful i nterventions (e.g., ARTAS program, see Aims page) for integration with the present system of care. Mkanta and Uphold ( 2006) recommended researchers explore qualitative approaches to explore HIV related utilization to provide detailed descriptions of the barriers and facilitators persons with HIV face when seeking care. Using a CBPR approach, key community s takeholders can help identify what works best in the system to determine strategies for change to address linkage to care for people with HIV.
20 Community based participatory research (CBPR) is an approach that incorporates involvement of community stakeholders in all stages of the research process and has been successfully used to address issues related to HIV ( Berkley Patton et al., 2010; Corbie Smith et al., 2010 ; Rhodes et al., 2010) Through development of an HIV Community Advisory Board (CAB) and through individual interviews with persons wit h HIV, members of the HIV community have the potential of working together with a research team to identify issues impacting linkage to care for persons with HIV and help propose feasible, affordable, and equitable solutions. This dissertation study will serve as a foundation for building an ongoing program of research devoted to facilitating linkage to care among persons with HIV that would be effective in nonurban settings in the southeastern US. The goals of this program of research are to promote health for persons with HIV and reduce disparities among special populations. These goals are also in line with the Presidential National HIV/AIDS Strategy (NHAS) ( Obama, 2010) to increase access to care and improve health outcomes. While recommendations in t he Presidents NHAS are clear, funding to support them is sparse (Mugavero et al., 2011) especially given the countrys current economic crisis, The results of this research will help to identify strategies that will improve linkage to care without putting further strain on scarce resources. This research is novel because it is the first, to my knowledge, to employ a CBPR approach to examine the decisionmaking process of linkage to care among persons with HIV in small metropolitan and rural areas. HIV Li nkage to Care in Florida Current Picture Current practices in Florida for linkage to care services involve a passive referral made during the delivery of HIV counseling and testing services. A disease
21 investigation specialist (DIS) makes contact with a newly diagnosed patient for partner identification and notification within a few days of diagnosis. The DIS provides the client with information about HIV services in this visit, and contact between the DIS and HIV client is then terminated. In Florida, HIV is considered super confidential prohibiting the release of HIV test results to unauthorized persons. Public health officials can only access results if directly participating in diagnosis or care (Florida Statutes, 2011) .This has been operationalized as data entering surveillance systems (one way in), but providers and HIV/AIDS prevention staff are not allowed access. This policy prevents any integrated means of tracking clients statewide, although some health department s have attempted handtracking newly diagnosed clients through health department medical records. Preliminary Work In preparation for this dissertation research, I chose to conduct my Masters of Science in Public Health Nursing Internship at the Alachua County Health Department Linkage to Care Program (Summer 2010). In this program, I managed and refined a database of 1400 individuals with HIV in the local health department and made system revisions for better tracking related to linkage to care and adherence to treatment. In collaboration with local and state health department representatives, we were able to locate 249 out of 300 persons diagnosed with HIV who were lost to follow up. I attended monthly staff meetings to discuss issues related to link age and met with staff in each department to discuss their roles in linkage to care. I also implemented a gift card program/policy for persons newly diagnosed to receive incentives for treatment while waiting for eligibility to the Ryan White HIV/AIDS Pro gram for HIV care. Finally, I worked with health department staff to implement a follow up/tracking system for
22 persons newly diagnosed with HIV. In working with local and state agencies, I learned about the problems existing in small metropolitan and rur al areas in linking persons with HIV into care, such as absence of a centralized database for tracking persons entering care, and the stigma associated with receiving HIV care in small communities. Furthermore, in conversation with an HIV positive communi ty member, I learned that nocost, simple strategies such as removing HIV related posters and literature from exam rooms would have helped her feel less stigmatized about seeking care. Summary Linkage to care is identified as a priority by the Presidential National HIV/AIDS Strategy (NHAS), the CDC, and the Health Resources and Services Administration (HRSA). Several strategies were identified in the literature that enhanced linkage to care, but these were implemented in largely urban populations with adeq uate resources. To date, there appears to be no CBPR research that has examined linkage to care issues for persons with HIV in small metropolitan (<500,000) and rural areas. Thus, this dissertation research is innovative in that it provides a foundation that incorporates community involvement, through a CBPR approach, in identifying strategies to improve linkage to care while decreasing strain on scarce resources in small metropolitan and rural areas. Findings from the Community Advisory Board (CAB) and individual interviews with persons with HIV will be used to develop a linkage to care intervention that is sensitive to both barriers faced by persons with HIV and financial limitations of small metropolitan and rural health care providers.
23 Table 1 1. Engagement in Care Continuum (HRSA, 2006) Not in Care In Care Unaware of HIV status. Aware of HIV status but not in care. Receiving Medical Care but not HIV specific care. Entered HIV care but lost to follow up. Receiving HIV care intermittently. Fully engaged in HIV care.
24 CHAPTER 2 LITERATURE REVIEW Historically, research regarding new HIV care linkage in the quantitative and qualitative literature has been sparse. Research related to linkage has fallen into two main categories describing barriers to linkage to care, and interventions to enhance linkage to care. Linkage to care represents a transition, or movement, from not having HIV, a chronic, highly stigmatized disease, to learning how to live with and manage the disease. After reviewing recent literature focusing on descriptions and interventions specific to linkage to care and decisions to seek care, I will explore literature specific to transitions in health: public health nursing case management, transitional care models, and patient centered medical homes, to uncover concepts that may contribute to the decision to link to care. Finally, the disparities in linkage to care and the concepts identified in the literature that may help overcome disparities in HIV c are will be addressed. Barriers to Linkage to Care Clinical and Epidemiological Review of HIV and Linkage to Care The HRSA definition of in care is considered a proxy measure of care and focuses on the clinical aspects of care; i.e., CD4 counts, Viral Loads and visits with an HIV provider ( Health Resources and Services Administration, 2006) For example, in Florida, in care is considered to be in receipt of two viral load/CD4 tests and/or two provider visits within a 6 month period ( Davis, 2013) HRSA (2006) also recognizes the fluidity of the definition of care, since people can fall in and out of care for various reasons. To help clarify the concept of HIV care, HRSA created the Engagement in Care Continuum ( Health Resources and Services Adm inistration, 2006) (Table 11).
25 Mathematical models support strategies for preventing the spread of HIV that help individuals learn their HIV status through testing and decrease viral load through treatment with antiretroviral therapy (Gardner et al., 2011) Gardner, et al., (2011) estimated that among the total number of people with HIV in the United States (1,106,400), 79% (874,006) know their status. Of those that are aware of their status, only 75% (655,542) link to care and only 19% of all people with HIV (diagnosed and undiagnosed) are adherent with ART and have a suppressed viral load (Gardner et al., 2011) Interventions need to address multiple social and ecological influences to successfully increase the proportion of people with an undetectable viral load. Several models of care addressing linkage have been discussed in the literature, including case management, navigation, and outreach. Perhaps the most well known intervention to date addressing linkage to care is the Anti Retroviral Treatment Access Study (ARTAS), in which investigators found that a brief, strengths based case management intervention improved linkage to care when compared to standard of care (SOC) (Gardner et al., 2005) While improving linkage proportions fr om 60% in the SOC arm, to 78% in the intervention arm at 6 months, and from 49% (SOC) to 64% (intervention) at 12 months, there were still many who did not link to care (Gardner et al., 2005) Furthermore, while the researchers in ARTAS felt costs of the intervention were reasonable, from about $600$1200 per client linked to care (Gardner et al., 2005) costs may be prohibitive in areas without large amounts of HIV funding. With the fragmentation in HIV services, people newly diagnosed are challenged in understanding where to seek services for HIV. Navigation models are similar to care coordination models and can help assist people newly diagnosed with HIV to access
26 care res ources, develop health communication skills, and enter HIV care (Bradford et al., 2007) HIV navigation models are similar to cancer navigation models in which patients are taught how to find the services they needed from multiple areas (Bradford et al., 2007) A specialized type of HIV navigation has also emerged in the HIV literature peer navigation. In peer navigation models, people with HIV have assisted with educating, recruiting, navigating and retaining other people with HIV into care ( Hallum Montes, Morgan, Rovito, Wrisby, & Anastario, 2013) Helping people navigate into the clinical setting has improved linkage for many. However, it has also been met with challenges such as lack of communication between the peers and providers and an increased risk of emotional burnout for the peers (Hallum Montes et al., 2013) Qualitative Review of HIV and Linkage to Care Using the social ecological model as a guiding framework for assessment, exa mination of the process of linkage to care was done through review of the qualitative literature. Using a photovoice methodology of persons with HIV, Rhodes, Hergenrather, Wilkin, and Jolly (2008) identified facilitators of successfully living with HIV. These factors included independence, responsibility, social support, goal setting, personal growth, spirituality, and desire to contribute. They also identified challenges of being HIV positive, including substance use, and fear and ignorance about HIV wi thin the community. Examining the processes of living with HIV in a rural environment, Leasure, Seideman, and Pascucci (2009) identified similar themes: support, managing symptoms, receiving health care, and altering life plans. While both of these studi es contribute strongly to the understanding of the context of living with HIV, the persons
27 participating in the studies were receiving HIV care, and therefore explorations into the decisions related to the initiation of care were not addressed. Adherence t o antiretroviral medications is also of great interest in the HIV/AIDS research community. Adherence, for the purposes of this research, implies that a person has already chosen to initiate care by HRSA standards and has decided either to maintain or not maintain HIV care. In examining the adherence literature to identify issues that may be related to the decisionmaking process to initiate care, medication side effects and scheduling of medications were important themes (Adamian, Golin, Shain, & DeVellis 2004; Beusterien, Davis, Flood, Howard, & Jordan, 2008; Kremer, Ironson, & Porr, 2009). Provider communication was also addressed in this literature and reflects organizational influences on outcomes (Adamian, et al., 2004; Beusterien, et al., 2008). U sing a different approach, Lewis, Erlen, and Meyers (2006) examined characteristics of people 100% adherent to HIV medications. Three themes emerged from this analysis: regimen (tailoring treatment to fit lifestyle), self (owning problems and pride), and environment (support and health care provider relationship). Since adherence literature focuses on persons who have already decided to engage in care, it may offer limited insight into the decision to initiate care after diagnosis. Finally, examination of the literature specifically addressing initiating HIV Care after diagnosis yielded somewhat different results. Beer, Fagan, Valverde, and Bertolli (2009) conducted a qualitative analysis of 37 persons from five U.S. cities and found three key themes t hat influenced the decisions of people to initiate care: disbelief about HIV status, conceptions of illness and appropriate health care, and negative
28 experiences and distrust of health care. Utilizing a critical incident technique and specifically address ing the initiation of antiretroviral therapy, Alfonso, Bermbach, Geller, and Montaner (2006) identified four categories of decisional influence: medication factors, mood, lack of support, and outcome expectancies. Both studies identified individual and contextual influences on the decision to seek HIV care. However, it is possible that given the geographic regions of the studies (5 major cities and Canada), the processes of decisionmaking may differ for persons in north central Florida (specifically Area 3/13). With the sparseness and inconsistencies of the research literature specific to the decision process to initiate HIV care, the current research is timely and will investigate the process associated with the likelihood to initiate and maintain HIV care. While there is overlap in the conceptual themes identified from case management models, transitional care models, and patient centered medical home models, evaluation of the relationships among the themes is important in the development of theory. The establishment of theory influencing the decisionmaking process related to HIV care will foster research towards the development of effective interventions with this hardto reach population. Strategies, including case management, navigation and outreach, have been shown to improve linkage to care. Most of these strategies have been instituted in larger urban areas where adequate funding is available. It is necessary to determine what aspects of these models may be effective in areas where HIV funding is sparse. A Review of Interventions for Newly Diagnosed HIV This dissertation research, CBPR to Facilitate Linkage to Care for Persons with HIV begins to identify the decision making process of persons newly diagnosed with
29 HIV. However, in planning a program of research, considerations need to be made about what has been done in the past, what is currently being done, and what could be done with the findings in the current project. The following sections will compare, contrast, and critique several chr onic disease management models popular in the literature (public health case management, transitional care, patient centered medical home) and identify the potential benefits and weaknesses in addressing the health care needs for persons with HIV. Ethical social, policy, economic and cultural issues relevant to these models will be incorporated throughout the paper, as well as how the models may be used to address health disparities in the HIV population. Public Health Case Management Model Case managem ent models in HIV care have focused primarily on people who have already engaged in care. Of the transition models of care reviewed for this research, public health case management in the treatment and management of disease and illness has a long and diverse history in both social work and nursing ( Zander, 2002) Case management is used extensively in the HIV population and is the only model in this paper that has been tested for efficacy and effectiveness for linkage to HIV care (Craw et al., 2008; L. I. Gardner et al., 2005) While the case management models effectiveness has been determined, the costs associated with utilizing this particular case management intervention remains prohibitive for smaller health departments ( Davis, 2010) Though it is practiced among a variety of disciplines (nursing, social work, rehabilitation), and in a variety of settings (hospital, community, insurance, and private industry) ( Huber, 2002 ) there is no specific standardized model of case management. Table 21 highlights the diversity of many case management models and the focus areas for each model.
30 Given the number and diversity of case management models found in the literature, the model(s) presented in this dissertation research have been used primarily in HIV care. The HRSA HIV/AIDS Bureau (HAB) outlines the concepts of HIV medical case management as being client centered, focused on linkages, coordination, and continuity of care and services ( Health Resources and Services Administration, 2008) The Federal Interagency HIV/AIDS Case Management Work Group identified six core functions that serve as the foundation for HIV case management practice in federally funded programs ( U.S. Department of Health and Human Services, 2008) Functions include: cli ent identification, outreach and engagement, assessment, planning, coordination and linkage, monitoring and reassessment, and discharge. Approaches to HIV case management are determined by the agency and program goals. Agencies can choose from several mod els including: gatekeeper, generalist, intensive, strengths based, broker, and assertive community treatment ( U.S. Department of Health and Human Services, 2008) Variance of the models among agencies and programs include: duration, intensity, focus, resource responsibility, availability, location of services, and staffing patterns (Morse, 1999) The variability of case management has the advantage of adaptability to resources, needs, and goals of the target population. However, different models, educational requirements and methods used by each model within an agency have led to confusion about the concept of case management and whether it is a profession, method, or a group of activities ( U.S. Department of Health and Human Services, 2008) This confusion is also experienced by the HIV client in terms of which case manager is in charge of the different services ( U.S.
31 Department of Health and Human Services, 2008) Some HIV clients may have 56 differen t case managers and there is a significant lack of communication between case managers due to fragmentation in service delivery ( U.S. Department of Health and Human Services, 2008 ) A number of ethical, social policy, and economic, issues are associated with case management interventions for linkage to care. Each type of case manager has a specific code of ethics, which vary depending upon departmental and public health regulations, state and Federal laws protecting health information, and goals of the agency for case management services. For example, circumstances such as poverty, geographic location, transportation, and child care can create challenges for clients needing to enroll in multiple case manageme nt services. Furthermore, clients can become confused or annoyed by the need for repetitive assessments for each case management agency, possibly contributing to a failure to seek care ( U.S. Department of Health and Human Services, 2008) Limited funding creates competition for scarce resources, and case management agencies may discourage collaboration as they try to win contracts Categorical funding also prohibits collaboration and coordination because agenc ies are not able to pool resources to streamline care. While Federal guidelines allow for flexibility, an absence of a consensus has contributed to the fragmentation and oversight in some services Caseloads and tensions between competing case managers furt her contribute to fragmentation ( U.S. Department of Health and Human Services, 2008) In short, case management interventions are beneficial for people with HIV but clients do not always understand the scope o f practice of their different case managers.
32 Limited funding, competition, and multiple guidelines further complicates the issue making it difficult for client to navigate the system and receive the unified care they need. Transitional Care Models Colema n and Berenson ( 2004) define transitional care as a set of actions designed to ensure the coordination and continuity of health care as patients transfer between different locations or levels of care (p.533) The authors cite evidence that patient care is compromised during transitions. The idea of transitional care has become popular in recent years. Through randomized clinical trials, transitional care has generated evidence that help support its incorporation into healthcare practice and the Affordable Care Act of 2010 ( Naylor, Aiken, Kurtzman, Olds, & Hirschman, 2011; Naylor & Sochalski, 2010) In the development of their transitional care model, Brooten and Naylor were influenced by t he quality of care framework outlined by Doessel and Marshall ( 1985) which focused on three variables: outcomes, costs, and satisfaction ( Brooten et al., 2002) With outcomes and costs defined as the endpoint in the model, the authors developed an intervention centered on the concepts of comprehensive discharge planning (patient readiness, environmental adequacy, and coordination of discharge), and home follow up (assessment, monitoring, direct c are, environmental assessment, support assessment, referral to community resources, teaching and counseling). To carry out both parts of the intervention, an advanced practice registered nurse was chosen to ensure quality of care delivery and attention to costs (Brooten et al., 2002) The model has been repeatedly tested and refined with populations throughout the
33 lifespan; however it focuses specifically on the transition from hospital (acute care setting) to home. Studies identified in a systematic review of transitional care identified coaching, comprehensive discharge management, follow up, and Telehealth as effective interventions to address transitional care (Naylor et al., 2011) Another transitional care model, delivered by a nurse transitions coach, added the concepts of a dynamic patient centered health record and empowerment to concepts identified from the Naylor model ( Parry, Coleman, Smith, Frank, & Kramer, 2003) The delivery of transitional care models for persons newly diagnosed with HIV/AIDS may be difficult to implement. Twenty one studies, recently presented in a systematic review of transitional care, were implemented in acute care settings; 18 with a nurse delivering the intervention (Naylor et al., 2011) Research appears sparse concerning the effectiveness of transitional care interventions initiated in community settings, and delivered by nurses. Furthermo re, cost constraints in public health make hiring registered nurses (or advanced practice registered nurses) to facilitate transitions to care prohibitive. Some concepts underlying transitional care and case management, however, may be appropriate for the HIV population, and will be explored in developing a model in the conclusion of this paper. Upon closely examining the definition of transitional care, concepts similar to case management emerge coordination (discharge planning), continuity of care (hom e care follow up) and patient centered care (patient centered health records). Transitional care models may be considered a specialized form of case management with an emphasis on nursing intervention and transition between levels of care. Both
34 have the advantage of helping patients navigate their way through our current healthcare system. Improved health outcomes and potential overall cost savings may also be an advantage when using both transitional care models and case management models. Limitations of the models include the potential for duplication of services within the hospital (discharge planners), home health nursing or in the community (medical, psychological, and social) (Parry et al., 2003; U.S. Department of Health and Human Services, 2008) Patient Centered Medical Hom e Model Medical home models have also gained popularity in the delivery of health care and management of chronic disease. The concept of the medical home was first introduced by the American Academy of Pediatrics in 1967. In 2004 and 2006, the American A cademy of Family Practice and the American College of Physicians developed their own patient centered care models ( American Academy of Family Physicians, American Academy of Pediatrics, American College of Physicians, & American Osteopathic Association, 2007 ) The Affordable Care Act of 2010 also includes a provision for Patient Centered Medical Homes to improve quality, reduce costs, focus on preventive services, and decrease reliance on emergency care ( Haney, 2010) Medical homes have the overarching goal of system integration. Concepts central to medical homes include: improved coordination, improved communication, streamlined protocols for health across the continuum, colocation of services, and utilization of health teams ( Willenbring, 2005) Furthermore, the concepts of patient centered care include: incorporating patients perceptions of illnes s and care goals, understanding of the entire patient (beyond the biological aspect) including culture and values, seeking to find a common perception of health issues, focusing on prevention
35 and health promotion, and providing continuity between the patient and the healthcare system ( Stewart, 2001 ) Coordination, continuity, and patient centered care are core concepts emerging in all of these models. The patient centered medical home concept is an attempt to reorient the way health care is delivered from a systems approach. The focus is on integrat ion, patients actively participating in health care decisions, and the primary provider taking responsibility for arranging all care services (American Academy of Family Physicians et al., 2007) Case management and transitional care models reflect an attempt to address an individual level within the current healthcare system. In these models, providers target gaps in care in to overcome some of the existing fragmentation. There are limitations, however, in utilizing a medical home model for HIV care in the current healthcare system. First, if an established patient in a medical home is diagnosed with HIV, the fragmentation of the system does not allow the primary care provider to be aware of the diagnosis, as Florida Statutes prohibit the release of HIV test results without written authorization from the client (Florida Statu tes, 2011) Obstacles to incorporating a medical home model include a shortage of HIV providers, ethical concerns if the client does not want his/her provider to be aware of their status, and complications in the way Ryan White care services are currently delivered. Ryan White case management is currently contracted through a single agency, while Medicaid medical HIV case management is contracted through a different agency. Partnership agreements between agencies need to be negotiated for a medical h ome model to work, and at present developing partnerships is challenging since
36 agencies are competing for provider contracts. While patient centered medical homes may represent an ideal approach to assist persons newly diagnosed with HIV to transition into care, the concepts central to the model, based on the principles of integrative care, may foster greater HIV care engagement and retention. Moreover, the development and testing of patient centered medical homes in the current healthcare system may o ffer future possibilities for HIV medical homes. Disparities and Linkage to Care Disparities exist in the provision of care for persons with HIV. Factors associated with persons receiving highly active antiretroviral therapy (HAART) for HIV include: race/ ethnicity, insurance status, educational background, competing demands, and transmission category ( Andersen et al., 2006) Among these factors, include linkage to HIV care may possible explains some of the disparities. African Americans/B lacks and Hispanics often delay entering care at least 3 months and enter treatment with more advanced disease (Andersen et al., 2006) Individuals in these disparate groups, and those living more than a mile from the nearest clinical trial center appear less likely to participate in research for investigational therapy (Andersen et al., 2006) HIV clients in rural areas and clients who saw generalists with few HIV patients were also less likely to receive HAART (Andersen et al., 2006) Addressing cultural norms and incorporating cultural values and expectations into healthcare practices may help address some of these disparities including linkage to HIV care ( Chin, Walters, Cook, & Huang, 2007) Exploring culture in HIV intervention research, Wyatt, Williams, Gupta, and Malebranche ( 2011) examined 166 HIV intervention prevention studies, and found only 34 addressed some aspect of culture. The Working Group on Changing Health Care Professionals Behavior ( Horner et al.,
37 2004) suggested the following methods for reducing disparities in care: Providing training in cultural awareness and sensitivity; monitoring processes of care related to disparities; certification of cultural competence training; monitoring of licensing boards for cultural competence training; and promoting workforce diversity. A community model that reduces disparities, from the Bureau of Primary Health Care and the chronic care model, includes an element of care incorporating empowerment, collaboration, cooper ative decisionmaking, integration of clinical systems, healthcare teams, and development of partnerships to address disparities ( Baquet, Carter Pokras, & BengenSeltzer, 2004) These concepts are very similar to those in the patient centered medical home. Summary All of the mod els of care presented in this section deal with similar concepts including: coordination, continuity, advocacy, outcomes, quality, and costs. The differences are the scope of the model, the time in the continuum of wellness and illness in which the patient engages in the model, and the healthcare setting of the model. The patient centered medical home is the most comprehensive in scope and encompasses many aspects of case management. Transitional care models, a type of case management model, focus primari ly on transitions in healthcare settings specifically from acute care to community or home. Case management models are the most diverse and the most flexible. They have been applied and tested in numerous settings with multiple diseases and conditions, and they have been adapted to streamline care, conserve resources, or enhance service delivery. The concepts central to case management, as it was originally implemented, are aligned with the concepts of both medical homes and transitional care.
38 Linkag e to HIV care remains an important concern among healthcare providers and public health officials. Implementing concepts from case management, transitional care, and the patient centered medical home will provide integration into the current system of HIV care and may fill a critical gap in healthcare coverage for persons with this disease. Through enhanced cultural training for providers of HIV/AIDS care and services, we can also begin to address disparities that impact populations at risk.
39 Tab le 2 1. Case Management Models Model Setting Focus Key Features Nursing Models Management of health/illness/disease Nursing Care Management Hospital Outcomes management to balance costs, process, and outcomes. Extension of Primary Nursing Community Based Case Management Community Clients at high risk from acute care to community Care across continuum, chronic care, broker Social Work Models development of new resources, linkages to existing service agencies, coordination of care, advocacy, teaching Broker Varies Clients receive the right services in a timely manner Traditional linkage function and direct service coordination. Often temporary, once services provided, CM relationship terminated. Interdisciplinary Team Full Support Often inpatient Team CM Approach. CM coordinates care and provides clinical support and life skills training. Each member serves the need reflective of their expertise. Relationship between CM and client is ongoing during treatment. Comprehensive Rehabilitation Long Term Care Comprehensive Services Social and emotional support, vocational training, residential services. Assists client in overcoming barriers (medical, social, emotional, physical) that prevent independent functioning in the community. Personal Strengths Varies Self management through recognition of personal strengths Assist people to develop personal potential in accessing available resources. Does not focus on needs based on disease process, but focuses on promoting self determination in the client. Strong emphasis on client CM relationship. Other Healthcare Models Rehabilitation Assertive Community Treatment Varies Medically related condition or psychosocial condition Occupational Health Workplace Interaction between client and workplace Coordinate, monitor, advise, and advocate for employee
40 Table 21. Continued Model Setting Focus Key Features Medical (Disease Management) Insurance Industry High Cost/High Volume Diseases Monitor across continuum of disease Insurance Insurance Industry Emphasis on conservation of benefits Brokerage with no provision of direct service Gatekeeper (Managed Care and HMO) Insurance Industry Manage access to services and promote cost effective alternatives Restrict access and control utilization and subsequently costs. Success depends on available alternatives Catastrophic Varies Life Care Planning Diseases such as brain injury or AIDS. Maximize benefits that may be capped. Adapted from Huber (2002) and Fleisher and Henrickson (2002)
41 CHAPTER 3 CONCEPTUAL FRAMEWORK AND METHODS In the first part of this chapter, the perspective and conceptual frameworks used to design this dissertation research and identify the researcher assumptions prior to initiation of the project are reviewed. Next, the methods used to conduct the research, evaluative criteria, and protections of human subjects are evalua ted. A Note about Perspective Perspective is our interpretation of the world around us. It helps people mak e sense of the world, understand phenomena and describe reality Furthermore, when trying to understand and describe reality, we cannot isolate our views into one single perspective, and instead must use many perspectives to interpret and describe a phenomena of interest ( Charon, 2010) Perspective is important in studying linkage to care because while some aspects of linkage to care can be measured, these measurements may not tell you how someone will act, respond, or construct meaning in a situation. Constructivists consider reality as socially constructed, and suggest that science can never be fully objective as individuals are constantly negotiating the interplay between objectivity and socially constru ction (Morse et al., 2009) Conceptual Frameworks The theoretical underpinnings of this research are based on social ecological theory and symbolic interactionism utilizing a Community Based Participatory Research (CBPR) approach. S ocial ecological model s (SEM) address multiple determinants of health and provide a conceptual framework for investigating linkage to care ( Committee on Educating Public Health Professionals for the 21st Century & Insti tute of Medicine, 2003) In this study, qualitative, constructivist grounded theory methods were chosen to
42 identify broader social (ecological) and personal factors related to linkage to HIV care ( Braun & Clarke, 2006) The constructivist grounded theory approach further expands on Social Ecological Models and is used to explore how persons perceive phenomena within a larger social context It is based on the theoretical perspective of symbolic interactionism in which human beings are active, interact with others, and use their perspective and experiences to define situations from social interactions ( Charon, 2010; Richards & Morse, 2007; Strauss, 1987) After describing social ecological models, symbolic interactionism, and constructivist grounded theory, I will summarize how the theoretical foundations are appropriate to use with a CBPR approach to study linkage to care for persons with HIV. Social Ecological Models The social ecological model s can be used to examine populations at any point i n the lifespan and can range from individual behavior, social, family and community networks, living and working conditions to broad social economic, cultural health and environmental conditions and policies ( National Cancer Institute, 2005; Shortell, Weist, Sow, Foster, & Tahir, 2004) There are n umerous versions of Social Ecological M odels but all have key features that include 45 levels of influence on an individual: interpersonal, intrapers onal, organizational/community, and public policy ( Committee on Educating Public Health Professionals for the 21st Century & Institute of Medicine, 2003; Glanz, Rimer, & Viswanath, 2008) Endorsed by the Institute of Medicine, social ecological model s address multiple determinants of health ( Committee on Educating Public Health Professionals for the 21st Century & Institute of Medicine, 2003) and allows for use of smaller, midrange theory to explain relationships among the broader constructs. Established theory can be employed to explore and test these relationships,
43 or an interpretive approach may serve to develop a new theory explaining relationships among constructs Using an ecological model as a framework to analyze factors that influence linkages to HIV care is the first step in identifying areas of possible intervention. In his ecological model, Urie Bronfenbrenner acknowledged a wide variety of influences on behavior, including personal environment, external influences on environment, and relationships of a person within and to the environment ( Bronfenbrenner, 1977 ) The model in Figure 31 portrays Bronfe nbrenners version of a Social Ecological model and included four nested levels: microsystem, mesosystem, exosystem, and macrosystem. Bronfenbrenner ( 1977) describes the principal main effects of this system as the interactions between the systems and each of the specific properties of each of the levels (Figure 3 1). The individual lies at the center of the model and the nesting of the levels allows us to see the levels of influence and interaction on the individual. Properti es of the microsystem include the physical environment social roles, and relationships as an influence on the organism ( Bronfenbrenner, 1994 ) Examples of influence at this level would include family, schools, and work. Bronfenbrenner (1994) describes the mesosystem as an interaction between microsystems, such as work and school, that impact on the developing organism. The exosystem also represents interactions between settings, h owever, these settings may or may not have a direct impact on the developing organism ( Bronfenbrenner, 1994) For example, a parents social network may have an indirect influence on the
44 development of a child. The macrosystem represents the overall characteristics of a culture and society ( Bronfenbrenner, 1994) While Bronfenbrenner focused on a social ecological model for application in developmental psychology, others have expanded on this model for use in health b ehaviors Social Ecological M odels have been utilized in a wide variety of health promotion topics including tobacco cessation, diabetes care, injury and violence prevention, diet, and exercise. Glanz (2008) suggests multiple versions of Social Ecologica l M odels presented in the literature have four core principles: 1) Influences on health behavior exist at interpersonal, intrapersonal, organizational, community, and policy level; 2) Influences interact across these levels; 3) Models should be behavior sp ecific, and 4) Multiple level interventions are strongest when they are behavior specific. McLeroy, Bibeau, Steckler, and Glanz ( 1988) adapted Bronfenbrenners model specifically for use in health promotion. An important consideration when utilizing the Social E cological Models is that at all levels of intervention, the target of the intervention is t he individual (Kok, Gottlieb, Commers, & S merecnik, 2008; McLeroy et al., 1988) Another important factor in Social Ecological M odels is the interaction among the levels (Kok et al., 2008) Several problems are associated with the use of Social E cologic al M odels These models are nonspecific in guiding conceptualizations or interventions (McLeroy et al., 1988) and utilize domains of variables instead of specific variables ( Elder et al., 2007) Elder, et al. (2007) further explained that Social Ecological M odels must be adapted to specific behaviors or healthrelated problems since environmental influences differ depending
45 on the behavior or condition. Incorporation of other theoretical models to explain specific co ncepts may also be utilized in Social Ecological M odels (Elder et al., 2007) Specific to HIV, social ecological models have been utilized in many prevention programs Sumarto go ( 2000) identified specific factors, individual and societal, at each level of influence related to HIV prevention programs Individual level factors may include knowledge of HIV and risk behaviors, prevention, individual characteristics, and personal vulnerabilities Macrosystem or societal factors affecting HIV prevention include the socioeconomic status of populations and societal vulnerabilities such as discrimination, class, race, and gender inequalities Several outreach initiatives which were utilized early in the AIDS epidemic to promote prevention measures included the distribution of condoms, bleach kits, and education materials by community workers (Tobias et al., 2007) and interventions at multiple levels individual, intrapersonal, and community DiClemente, Salazar, and Crosby ( 2007) reviewed interventions to prevent HIV in adolescents utilizing an ecological approach and stressed the importance of multilevel interventions In a comparative study of urban and rural African American women with HIV/AIDS which incorporated aspects from Social Cognitive Theory, Theory of Reasoned Action, Health Belief Mode l, and the Transtheoretical model, investigators found an ecological approach useful in addressing knowledge, attitudes, and behavior dynamics ( Williams, Ekundayo, Udezulu, & Omishakin, 2003) Mugavero ( 2011) recently used a social ecological model to identify barriers for Linkage to HIV Care. While ecological models are beneficial to identify multilevel barriers for linkage to care, more research needs to be done to address this issue.
46 Symbolic Interactionis m The development of Symbolic Interactionism as a perspective was strongly influenced by pragmatist philosophy and the works of George Herbert Mead ( Charon, 2010) Pragmatist philosophy focuses on how humans interpret, define, and actively participate in their environment ( Charon, 2010) Mead emphasized that consciousness (or perceived self) is the result of the inter action between a person and the environment with an emphasis on the interaction within the persons social environment ( Coser, 1971) Mead and Blumer identified two types of social interactions: nonsymbolic interaction and symbolic interaction ( Coser, 1971) Non sy mbolic interaction takes place when humans respond without interpreting the action of another (such as in reflexive action) ( Blumer, 1969; Coser, 1971) Symbolic interaction involves a response through interpretation of anothers action, and this interpretation is based on the meaning of that acti on ( Blumer, 1969; Coser, 1971) Charon ( 2010) identified five central ideas of symbolic interactionism. First, humans are social beings and our interactions in a social system influence our actions. Second, humans think, and therefore action is not only the result of social interactions, but also a result of the interaction within themselves through thought. Third, humans define their environment through the use of symbols. The symbols are a result of the ongoing interaction of the person within a social system. Fourth, the cause of human action is based on that which is currently happening and not what is in the past. While past interactions, and how they were defined (meaning) may influence human action, current action is oriented in the present. And fifth, humans are not passive to the stimuli from their
47 environment, but are active and ca n overcome environmental influences ( Charon, 2010) Herbert Blumer identified meaning as a result of the interaction between people ( Coser, 1971) There are three central premises to Symbolic Interactionism as defined by Blumer human action is based on meaning, meaning is defined through social interaction and process, and meaning is modified through an ongoing interpretative and interactive process ( Blumer, 1969) Charon (2010) explains how we use symbols (words, objects, and acts) to communicate the interaction between the environment and ourselves. When someone is diagnosed with HIV, the meaning of that experience is based on the interaction between the provider and client during that experience and the clients previous interactions in their social system. Their subsequent decision t o seek care will be influenced by the meanings that are formed during these interactions. The perspective of Symbolic Interactionism (SI) helps to identify individual and social responses to HIV and through the process of the inquiry into this research, t he meaning of the process of linkage to care can be identified. Grounded Theory Glaser and Strauss (1967) introduced methods for the discovery of grounded theory, or theory derived from the data in their book The Discover of Grounded Theory: Strategies f or Qualitative research. The methods introduced in their first book were reflective of their academic backgrounds from the Chicago School of Sociology and Columbia University Department of Sociology. The Chicago School adhered to a pragmatist approach to research, whereas Columbia was well known for a more positivist approach ( Charmaz, 2006 ; Glaser & Strauss, 1967) Glaser and Strauss
48 introduced the methods of comparative analysis and theoretical sampling in the formation of grounded theory. Today, multiple versions of Grounded Theory exist, but core characteristics exist in most versions: 1) simultaneous data collection and analysis; 2) use of coding and categories devel oped from the data and not predetermined based on knowledge or experience; 3) development of theory to explain behavior or process; 4) the use of memos or analytic notes to build theory; 5) theoretical sampling of participants and data to complete the development of theory; 6) initial brief literature review to sensitize to topic and broad literature review specific to concepts identified in data ; and 7) the constant comparison of the data and developing theory throughout the analytic process ( Glaser & Strauss, 1967) ( Charmaz, 2004) Since g rounded theory is suitable in studies where the researcher seeks to understand social processes it is appropriate to investigate the decisionmaking processes of linkage to care for people with HIV ( Charon, 2010; Richards & Morse, 2007) As grounded theory evolved, Glaser (and followers) took a positivist stance about grounded th eory in which the researcher discovers theory that exists within the data independent from the researcher ( Charmaz, 2006) Strauss and Charmaz took a constructivist approach, believing the interpretive nature in the generation of theory could not be overlooked and theory was discovered through shared interpretation of the data between t he researcher and participant ( Charmaz, 2006) Charmaz (2006) explains the interpretive approach of constructivist grounded theory in how and why participants construct meaning and action. Similar to ecological theory and how an organism behaves based on the environment (context) constructivist gr ounded theory (based in symbolic interactionism), explores how persons perceive phenomena within
49 the larger social context ( Charmaz, 2006) In this study, I chose a constructivist qualitative grounded theory methodology to develop a theory that identifies broader social (ecological) and personal factors that influence linkage to HIV car e and seek the methods through which decisions are made to link to HIV care. Figure 3 2 illustrates relationships between a Social Ecological Model the generation of grounded theory, and outcomes of linkage to care. Constructivist g rounded theory methodology will assist in the discovery of the nature of the relationships between persons with HIV and their environment, and the decisional processes they use to seek care. An inductive comparative analysis will guide development of theoretical constructs ( Charmaz, 2006) and how system factors influence these decisions Using comparative analysis, substantive theory explaining factors related to linkage to HIV care can be developed Insights gained from using grounded theory methods in combination with the CBPR approach and Community Advisory Board (CAB) collaborations will lead toward development of the next phase in this program of research. Strength s and Limitations of Using Grounded Theory Grounded theory is not suited for the determination of direct causality. Positivist approaches, including the randomized controlled trial, are better suited to determine the effect of an intervention (i.e. medicine or procedure) on outcomes such as morbidity and mortality ( Stolberg, Norman, & Trop, 2004) Biomedical models, which have been the dominant theoretical foundation of heal thcare research, indicate a causal relationship between disease and pathology R andomized controlled trials have been the hallmark for testing this causal relationship ( Wade & Halligan, 2004) However, as science progresses, many researchers are realizing there may be other influences on
50 illne ss which are more challenging to explain with biomedical models ( Wade & Halligan, 2004) The CBPR to Facilitate Linkage to Care for Persons with HIV study recognizes that despite recommendations and encouragement from the healthcare system that people receive treatment immediately after diagnosis (the evidencedbased recommendation), there are still large percentages of persons who do not seek care. A causal or biomedical approach to the question is not appropriate. Grounded Theory, when it was introduced by Glaser and Strauss ( 1967) began to merge positivist and interpretivist philosophies by upholding a systematic and rigorous approach to the collection of qualitative data and the generation of theory. Green and Britten ( Green & Britten, 1998) highlight ways qualitative research can address a different focus of clinical research that cannot be explored with purely quantitative methods including providers and patients attitudes and beliefs about treatment(s), preferences, and translating research into practice. Using orientations prevalent in qualitative research, e.g. naturalism, interpretation, process, interaction, and relativism, we can begin to address the limitations of RCTs and other quantitative methods ( Green & Britten, 1998) Qualitative research is a method that will inform the evidence base in relation to why and how an intervention works (its effectiveness), and integrate influences from cultural values, beliefs, social, environment, and policy into research ( Weiner, Amick, Lund, Lee, & Hoff, 2011) Qualitative methods may be more appropriate for addressing issues such as determining aspects of the community that encourage a more positive outcomes or having community members identify determinants of health instead of the traditional positivistic needs assessment ( Raphael, 2000) Qualitative methods are also
51 appropriate for explaining study variability and contextualizing results from quantitative methods ( Fagan, Bertolli, & McNaghten, 2010 ; Garland et al., 2011; Gruber et al., 2011; Kempf et al., 2010 ; Kneipp et al., 2012; Mallinson, Rajabiun, & Coleman, 2007 ; Petticrew & Roberts, 2003; Prost et al., 2007 ; Thomas et al., 1999) Qualitative methods including grounded theory, may be more appropriate for exploring issues such as determining aspects of the community that encourage a n outcome, or having community members identify determinants of health instead of a traditional positivistic needs assessment ( Raphael, 2000) Using a grounded theory method, it may be possible to determine what aspects of the HIV counseling, testing, and diagnosis process support or do not support linkage to HIV care. Community Based Participatory Research Community Based Participatory Research (CBPR) is a method of community engagement that involves full collaboration and shared decisionmaking in all phases of the research process, and builds on existing knowledge, skills and resources known to the community, while addressing health from an ecological perspective ( Israel, Schulz, Parker, & Becker, 1998) With a CBPR orientation, the creation of evidence can shift from an intervention delivered to a community (best practices) to an intervention developed by the community (best processes) with attention to the ecological environment influencing the outcome ( Trickett et al., 2011) Types of research appropriate for CBPR include: descriptive research to understand determinants of health, research to understand disparities, community assessments, and resear ch to design and improve existing community policy ( Israel, Coombe, & McGranaghan, 2009) Research designs appropriate to CBPR are similar to other traditional research designs
52 except the design must be acceptable to the community partners and the focus of the research must benefit the community (Israel et al., 2009) Community Based Participatory Research includes eight key principles (Israel et al., 2009) 1. The community is the unit of identity in the research and members share a common culture, norms, and values. 2. CBPR builds on the strengths and resources within a community to improve the health and quality of life in the community. 3. CBPR promotes an equitable partnership in all phases of the research. 4. CBPR facilitates co learning and capacity building. 5. CBPR fosters a balance between knowledge generation and action for the benefit of the community. 6. CB PR focuses on the determinants of health from a local perspective within an ecological approach. 7. CBPR disseminates the findings to all partners and involves the partners in the dissemination of the research. 8. CBPR promotes a long term process and a co mmitment to sustainability. CBPR is based on the work of Kurt Lewin, who used action research to address social problems, and later work by Paulo Freire, who had communities identify their own problems and create tailored solutions ( The Examining Community Institutional Partnerships for Prevention Research Group, 2006) At this time, scienti sts realized that successful interventions discovered in traditional research methods were still not addressing complex mutli level social issues (i.e. disparities in hypertension control) ( The Examining Community Institutional Partnerships for Prevention Research Group, 2006) By using a CBPR approach, community member researcher partnershi ps were able to take an approach to the research process that would yield culturally relevant interventions ( The Examining Community Institutional Partnerships for Prevention
53 Research Group, 2006 ) Furthermore, feelings of being used for research sometimes exist within a community, and these feelings can impede the research process (i.e. rec ruitment). The CBPR process helps to overcome these feelings and also helps the community to build trust and respect for the researcher and research process ( The Examining Community Institutional Partnerships for Prevention Research Group, 2006) During preliminary work, I initiated the CBPR process by engaging in conversations and meetings with providers of HIV care, HIV prevention specialists, and consumers of HIV care services Through these interactions, I learned how stakeholders in the community valued linkage and adherence to care and offered ideas to enhance these areas As the diss ertation proposal began to emerge, community members embraced the idea of a research project that would recognize how HIV was different for people in their community, involve members of the community in the design of a culturally sensitive intervention, an d ultimately help members of the community achieve better health outcomes. After the preliminary work in the community I began to formalize the CBPR process by convening a Community Advisory Board (CAB) for a linkage to care research project for smaller metropolitan and rural areas. In CBPR, community members are considered the experts and focus group discussions are appropriate to elicit their experiences with linkage to care and recommendations to address linkage ( Olchansky, 2008) In addition to the focus group during the initial CAB meeting, community partners reviewed preliminary materials (question guides, advertisements, recruitment strategies) for appropriateness and cultural sensitivity. Results from the focus group and review of materials are covered in Chapter 4.
54 Summary of Conceptual Frameworks The relationships among the conceptual models from this research are shown in Figure 33. As stated in the previous section on Symbolic Interactionism (SI), George Herbert Mead, was heavily influenced by pragmatist philosophy, and later inspired the works of Kurt Lewin. Lewin, whose research also focused on the interaction between environment and person, helped introduce the idea of participatory action research which led to the development of CBPR. Bronfenbrenner, who was inspired by the works of Kurt Lewin, applied the interactive concepts between person and environment to the field of ecology which led to the development of modern social ecological theories. A constructivist approach and the SEM both provide a combined framework to explore how persons perceive phenomena within a larger social context These approaches are consistent with CBPR principles whereby reality is constructed upon the interactions and interpretations between the researcher and all involved community participants (Charmaz, 2006; Israel et al., 1998) Social ecological models represent a method to analyze a situation at a specific moment in time, but it is difficult to analyze a process at multiple levels of in fluence. Symbolic interactionism helps in understanding how decisions and actions are made based on previous and current interactions within a system. A constructivist Grounded Theory method and a CBPR approach will allow me to bridge SEM and SI through inquiry specific to the decisionmaking process. SI acknowledges the use of symbols to convey meaning in a culture while the SEM has more of a biopsychosocial orientation and focuses on the physical organism in the physical and social environment Both are relevant in examining how a different perspective may evaluate a phenomenon of interest. As a result of these evaluations,
55 all three frameworks (SEM, SI, CBPR) appealed to me in the design of this dissertation research. Researcher Assumptions (Reflexivity) Reflexivity is a process of examining the potential biases a researcher can bring to the research process in qualitative analyses (Cohen & Crabtree, 2006). There are several mechanisms that help the researcher develop reflexivity in the research design. First, the researcher needs to include multiple investigators in the process Second, the researcher will develop a reflexive journal, which aids in determining the personal thoughts and feelings that may influence the decisionmaking process during the course of the study Finally, the researcher endeavors to disclose any perspectives, values and beliefs that emerge during the process of the research study (Cohen & Crabtree, 2006). For the purposes of this doctoral project, other investigat ors will include members of the students doctoral committee who have been chosen due to their expertise in grounded theory methodology and HIV. Also f or this proposal, the investigator worked towards equality of treatment for persons with HIV through wor k, education and prior research endeavors. How these experiences potentially influenced the findings from the research were reviewed and discuss ed with other members of the research team In addition, methods of disclosure in manuscripts and publications were evaluated. I came into the dissertation process with experiences that would influence my thoughts, decisions, directions and interpretation about the data. Exploration of my personal history helped me to recognize whether my methodological decisions and analytical interpretations were based on the data or personal perspectives. In this
56 section, I will share this history so the reader may draw his or her own conclusions about the decisional process of my research. I began nursing school in the mid1990s as a seconddegree student My first degree, psychology led me to work at an inpatient psychiatry unit For the first time in my life, I felt excited about what I could do as a profession. Teasing out the reasons for this excitement remains an ongoi ng process, but I think it comes from my childhood experiences. My mother remarried several times and as I changed schools, I felt like I never fit in (although I realize now this is a normal feeling kids have) For me however, I went from fitting in at one school, to not fitting in at another I was the same person and did not understand the social issues at play T his experience helped develop a keen awareness of how people who are perceived of as different feel when those around them do not unders tand or accept who they are. Psychiatric patients are viewed as different by our society and I felt the need to reach out and help. As a result of my experiences, I enrolled in nursing school to become a psychiatric nurse. During the time between when I graduated with my psychology degree (1990) and undergraduate nursing degree (1996), HIV was in the news a great deal Ryan White a teenage hemophiliac who acquired AIDs from a contaminated blood treatment, die d; a teen was set on fire because of HIV ; AI DS wa s considered the leading cause of death for African Americans, basketball player Magic Johnson admit ted to having HIV ; and Olympic diver Greg Louganis admit ted his HIV status Debate ensued over forced disclosure of someones HIV/AIDs status ( The Kaiser Family Foundation, 2012) In nursing school we discussed HIV/AIDS and universal precautions I realized many of my classmates were clearly afraid of caring for someone with HIV, despite the absence
57 of risk of contracting the disease as long as universal precautions were used. The paranoid reactions many nurses (and other healthcare professionals) displayed towards persons with HIV contributed to the psychosocial stress of the patients. My feelings of helping out a group that was being treated differently surfaced again and I joined forces with several nursing student colleagues to educate ourselves and classmates about HIV I learned of the interplay between psychosocial issues and HIV (stigma, depression, etc.) and decided to do my honors thesis on the psychosocial issues of HIV positive African American women. A t that time, African American women were disproportionately impacted by the disease, but not seeking care. I moved to Pittsburgh, started a position in inpatient psychiatry, had chil dren, and began graduate school with the intention of continuing with the research begun in my undergraduate honors thesis Instructors urged me towards a PhD and seeking grant funding for expansion of the undergraduate thesis Due to a hectic schedule, I was forced to put my research on hold. Ten years later (winter 2008) I attended a nursing research conference while debating whether I should finish my masters or get a PhD. At the conference, I saw a poster on the topic of my undergraduate thesis and, after talking with the author, sadly realized nothing had changed in the 810 years since I had last examined the topic Four years after seeing the poster, I can now describe these feelings within the epistemology of my profession (public health nursing ) S ocial justice, and equal treatment for all is crucial and persons with HIV are not receiving equal treatment for a multitude of reasons I will continue to explore and journal about how my experiences in childhood, college, and professional life hav e impacted the choices that have led me to a program
58 of research assisting people newly diagnosed with HIV into care. It is clear that this population is a vulnerable group often treated as different because of their diagnosis Unfortunately, the paranoi d reactions of my classmates 15 years ago are still evident in many health care professions today with those newly diagnosed referred to hospice or excluded from a medical practice. When I started this reflexivity statement, I was early in the process or my program of research. Ho w these experiences have impact ed my decisions and analysis is yet to be fully discovered. I put forth mechanisms to assist with the subjectivity of my research: inclusion of multiple researchers, a reflexive journal, and di sclosure of perspectives, values and beliefs (Cohen & Crabtree, 2006) First, multiple researchers were incorporated into this process through my dissertation committee and members of the University of Florida Health Science Center Qualitative Data Analys is Group. As Glesne (1999) also suggests, I needed to be aware of the inter subjectivity between my participants and myself By choosing a Community Based Participatory Research approach, I hope to understand how the research relationship with the partic ipants and community impact ed the process This reflexive journal was incorporated into the analytical process so I could understand the interplay of my feelings, values, and experiences and the research. Finally, I plan to disclose my perspectives to others in my writings and discussions in order to allow others to understand how it is used in my research and evaluate the integrity of the findings (Glesne, 1999). Research Methods Specific Aims The primary purposes of this study were to initiate a community partnership with local HIV agencies and persons with HIV and to identify decision points and factors that
59 impact the decision to seek HIV related health care among a spectrum of persons with HIV The long term goal of this research program is to prev ent the spread of HIV through increasing both early linkage to and retention in HIV care for persons with HIV/AIDS Early linkage may be a key in decreasing: (a) HIV related mortality and opportunistic infections at the individual level and (b) transmissi on risk behaviors and infectiousness at the population level Specifically, the aims of this study were to: 1) Create an HIV l inkage to a Care Community Advisory Board (CAB) for a 15county area in North Central Florida 2) Identify decision points (timing) and factors that influence decisions regarding the likelihood to initiate (i.e. linkage to) HIV care among persons with HIV Based on study findings, I plan to collaborate with the CAB to develop a community based intervention for persons with HIV in future research beyond the dissertation. Sampling Plan and Recruitment In the state of Florida, geographical regions divide HIV/AIDS services Area 3/13 is a 15county network of HIV care providers and consumers in North Central Florida (which in cludes both small metropolitan and rural areas) (Figure 3 4). The Alachua County Health Department ( ACHD) is an Area 3/13 provider of HIV prevention services and case management to persons who have sought care Additionally, Well Florida Council, a planning group, oversees federal ly allocated Ryan White funding and conducts meetings with consumers and providers through the Area 3/13 Ryan White CARE Consortium ( Area 3/13 RWCC ), which determines priority needs for the are a. Faculty at the University of Florida, the ACHD, and the RWCC played integral roles in
60 assisting with identification of a C AB and study participants. I have been building strong ties with the ACHD and RWCC for th e past two and a half years Both of these organizations have strengths in addressing and supporting the needs of the local HIV community while operating on a limited budget and have identified engagement in HIV care as a priority need ( Well Florida Council, 2010) I have also been attending RWCC meetings for over 2 year s, I currently serve on the RWCC Board as chair, and completed clinical experiences for an MS in Public Health Nursing with the Linkage to Care program at the ACHD to establish collaborative relationships with the community Purposeful sampling involves selecting participants for inclusion in the research based on specified characteristics and includes many variations, such as criterion, theoretical, snowball, critical case, etc. ( Patton, 2002 ) For the aims of this research, participant s were sampled using purposeful sampling, specifically, convenience and snowball. Convenience sampling targets participants who are avai lable for recruitment and snowball sampling identifies participants from previous participants or people familiar with the research ( Patton, 2002) Theoretical sampling involves seeking data specific to development of the emerging theory with the goal of saturating the properties of categories ( Charmaz, 2006) For development of the CAB (Aim 1), CAB members were identified through contacts at the ACHD, Area 3/13 RWCC, and the University of Flor ida (UF) Members of the CAB included providers of HIV care and services, community based organizations, and consumers of HIV care and services from Area 3/13. A suitable University of Florida representative was also identified to assist in the CBPR/CAB process (for a total of 8 10 members) The University of Florida member had extensive
61 experience in both CBPR and HIV, and was able to mentor me as well as contribute expertise to the focus group process. All CAB members were 18 or older. Once a potenti al member was identified, written informed consent was sought. The consent was carefully reviewed and all questions were answered prior to collection of any study data Once members were identified and agreed to participate, a convenient time and place t o meet was arranged. I met with the seven members of the CAB to discuss issues related to linkage to HIV care and sought recommendations for addressing this issue in Area 3/13 At the end of the CAB meeting, participants not affiliated with the Department of Health or the University were offered a gift card ($25) from a local business to compensate them for tim e, transportation, and parking. For the participant interviews (Aim 2), participants from the community who were over 18 and had a diagnosis of HIV were recruited. All interview participants provided written informed consent. Under Florida law, 18 is the age of majority and is, therefore, the usual age at which participants can consent to engage in research. Participants contacted me by phone or e mail and I described the study for them in detail, allowing them time to ask questions. If they were interested in meeting and reviewing the consent, I scheduled an appointment at a time and place that was convenient, yet offered a private place to conduc t interviews. For example, the Alachua County Health Department allowed me to use their case management interview rooms for individual interviews. I was responsible for all recruitment but enlisted assistance from the CAB and members of the community to facilitate the process (inform potential participants about the study). Recruitment of participants took place through Area 3/13 RWCC, support
62 groups conducted through Area 3/13 health departments (e.g., Positives Empowering Positives (PEP Club ) and Heal th Street, a local agency affiliated with the university that seeks to identify community members with health issues or concerns and help to connect them with local research projects. To recruit participants from Area 3/13 RWCC, I explained the study and passed out informational flyers at the monthly meetings I already attend. Participants interested in the study either called or emailed me to discuss further. To recruit from HIV support groups (e.g., PEP Club), a member of the group that attends these m eetings assisted by inviting me to the meetings to explain the study and distribute informational flyers. One support group shared the flyer with their members, and the members individually selected times for me to come during a lunch and conduct intervie ws in a private conference room. For HealthStreet recruitment, I met with their navigator and submitted a copy of my recruitment flyer and consent form. She contacted HealthStreet participants who were HIV positive and had expressed interest in research participation. She briefly explained the study to them and if participants were interested in hearing more information, she provided me with their contact information. I would then call and describe the study in more detail, answer questions, and set up an appointment to fully review the consent and participate in an interview. For each interview completed by a participant, an incentive of a gift card for $25 was provided to compensate for time, transportation, and parking. Participants completing int erviews were asked if they were aware of others interested in the research. From these initial interviews, theoretical concepts were identified and theoretical sampling was used to identify participants based on emerging concepts or gaps
63 identified from the ongoing data analysis ( Patton, 2002, Charmaz, 2006) For example, I specifically sought people who were n ot currently receiving care once I realized the initial interviews focused on people who were currently receiving HIV care. Theoretical sampling continued until theoretical saturation occurred, or no new categories emerged from the ongoing analysis of the data (Charmaz, 2006). For example, in later interviews in the category of support, participants did not identify any other dimensions beyond emotional, cognitive, and tangible. At that point, I concluded theoretical saturation was achieved in that category. Saturation for all categories was reached with a final sample of 20. Three types of participants were targete d for conducting interviews. Sampling from these diverse groups allowed me to set parameters within the sampling process, given the scope of this research, but still allow ed for a more complete picture of the processes these individuals employed in decidi ng to seek care or not to seek care ( Miles & Huberman, 1994) The first type of research participant consist ed of persons who engaged in care immediately after receiving the diagnosis (usually within 6 weeks due to system delays) From this group, I attempted to capture the decision making process and influencing factors that contributed to seeking immediate care The next type of participant consist ed of persons currently engaged in care but who had a delay in care of 9 months or more I encouraged them to reflect on the factors influencing them to delay seeking care The final type of participant consist ed of people diagnosed with HIV who had not engaged in HIV care. My close connections within the HIV community and support
64 from the local HIV community enhance d my ability to recruit an adequate number of participant s. However I was limited to people who had engaged in care at some point in the HIV care trajectory. HIV positive people who had not received any care present ed recruitment challeng es Given the parameters of the IRB approved protocol, I did not collect any personal health information prior to a participant signing the consent. Therefore, I was not able to ask about care status until after a participant had enrolled. This limitation prevented me from targeting specific subgroups in the HIV care trajectory. Eligibility criteria. Inclusion Criteria : Age 18 or older, fluent in English, and have a diagnosis of HIV or AIDS Exclusion Criteria: None Recruitment Procedure (Data Coll ection) Aim 1 Community Advisory Board In Aim 1 an HIV CAB based using a CBPR approach was established. The CAB was used for collaboration, network building, and promotion of research among (a) persons with HIV, (b) community HIV agencies, (c) local he alth departments, and (d) the University of Florida Colleges of Nursing and Public Health/Health Professions. Responsibilities of this board were to identify key barriers to linkage to care and potential solutions, provide input on study design and recrui tment strategies for study participants, and ensure cultural sensitivity for data collection. At the conclusion of this
65 research, I will engage the CAB i n dissemination of data, and seek guidance for the next phase of this research. Through the creation of the CAB, I built on the relationships established from my ongoing work in the community. At the first meeting of the CAB, I conduct ed a focus group to review linkage to care issues for Area 3/13 The outline/procedure for the focus group interview is presented in Appendix C. The CAB focus group last ed approximately 2 hours, and the meeting was recorded and transcribed verbatim To begin the focus group dialogue, Community Advisory Board member s were presented with a table of known barriers to linkage to care identified in the literature, and then asked how things may be different in this area or small metropolitan and rural areas in North Florida (Figure 35). After reviewing and discussing ex periences and perspectives regarding HIV Linkage to Care, the CAB reviewed the research procedures (i.e., who should conduct interviews), the participant interview guide (Appendix B) and draft advertisements (Figure 36). They discussed alternative approaches and made recommendations, such as altering the advertisement to improve sensitivity to the participants. Specific recommendations are covered in Chapter 4. Analysis of the focus group data (discussed later) took place prior to data collection with i nterview participants in order to inform the data collection process for Aim 2. Aim 2 Participant Interviews Data collection for this aim of the research project consist ed of in depth interviews with persons with HIV In qualitative research, data coll ection with interviews involves an interactive process between the researcher and the participant ( Richards & Morse, 2007) A semi structured, interactive interview format in a private setting was chosen in order to allow the participant to tell his or her story. Clients consenting to
66 participate in the study scheduled a time to conduct the first interview at a time and place of their convenience. Before beginning each interview, the consent form was reviewed with participant s, with pauses to allow time for questions. If they consented to be in the research, we signed two copies of the consent. One copy was given to the participant, and I then turned on the recorder and began the interview. The first interview last ed approximately one hour. Participants were told they may be co ntacted for an additional interview which would range f rom 30 45 minutes. The intended goal of the second interview was to review, clarify and verify my interpretations of the concepts identified from the initial analysis of data to show they reflected an accurate representation of the process of HIV linkage to care. However, i nstead of conducting a second interview, the process of verification took place by discussing earlier study findings at the conclusion of interviews with participants 1220. While the constructivist nature of grounded theory does not call for a detailed interview guide, most ethics review boards and Institutional Review Boards require interview guides to ensure adequate protection of subjects (Charmaz, 2006). Examples of ques tions from the interview guide are as follows: (1) What was it like to find out you had HIV? What thoughts did you have? (2) Tell me about how you decided to seek [or not seek] care once you learn ed you were HIV positive. Ap pendix B provides a sample of questions that were utilized in the interview process, although questions were adapted specifically for each individual interview following the study participants lead a nd as theoretical coding directed. For example, as the conditions of support began to emerge, I questioned participants in more detail
67 about support including types of support, who best delivered support, and the timing of support. During the interviews with participants 112, in order to probe the perceptions of t hese participants regarding linkage to care barriers and suggestions for overcom ing barriers, I drew a model to visually describe the fragmentation of HIV care between prevention and patient care. Figure 37 is a representation of the drawing used during the interviews. In this figure, a wall was placed in the middle with HIV Diagnosis (prevention) on one side and HIV care (patient care) on the other side. The wall represent s the barriers between prevention and patient care. I used this figure to explai n the current process of passive linkage as being equivalent to throwing a ball over the wall, with the ball representing the person with HIV. Due to fragmentation between patient care and prevention, the patient care side did not always know the ball was coming and sometimes missed it ( i.e., was not aware there was someone in need of care ) There could also be a situation where the wall was too high (there were too many barriers) for the prevention person to throw the ball (i.e., the system does not have enough time to help the person navigate the barriers they may face). Using this sketch, I asked each participant to tell me how they could have been helped over the wall (if they delayed care), or what helped them over the wall (if they entered care). I also asked them to think about what others may need to get over the wall. This technique helped facilitate discussion regarding strategies to promote care engagement and to visually orient the participant to the phenomenon of interest. Questions evolved as a result of ongoing analysis. For example, in early interviews, participants discussed grief and crisis. In later interviews (1220), I specifically asked participants to explain the grief or crisis experience, what types of
68 support were needed and when, and their recommendations for intervention at diagnosis. To facilitate their understanding, I shared early iterations of the draft versions of the HIV Care Decision Process Model (example Figure 3 8). Towards the end of each interview, I explained to them that I wanted to share with them a model of the data I had collected to that point and to examine the model and identify what was missing, and how it did or did not work to explain their process. This procedure continued until the model was complete (i.e., participants did not have anything more to add) and saturation was reached. As an example, from the initial model, participants modified the initial perspective that once someone entered care, they stayed in care. Participants noted that the process did not stop after engagement in HIV care They pointed out that even if someone was receiving care, they could still experience a pivotal event that might lead them out of care. During the interv iews and immediately afterwards, I wrote fie ld notes on the interview guide. Field notes included points for probing during the interview (i.e., remember to probe about person they said was just awful), initial thoughts during the interview (i.e., sounds like grief response) and potential areas of questioning to pursue in future interviews (i.e., concepts specific to patient centered care such as understanding patient context) During the initial coding, I reviewed the field notes and began to record analytic memos in NVivo10TM ( QSR International Pty.Ltd., 2012) All interviews were digitally recorded and transcribed by a professional transcriptionist Transcriptions were spot checked for accuracy and an error rate greater than 5% would have necessitate d re transcription of the interviews ; no transcriptions met these criteria.
69 Data Analysis Data analysis began immediately in the CAB focus group and individual interviews, and continued during each inter view and afterwards A qualitative data analysis management program, NVivo 10TM ( QSR International Pty.Ltd., 2012) was used to manage transcripts, coding, mem os, and literature specific to linkage to care. NVivo 10TM was chosen because of its ability to retrieve and code data and tools to aid in theory building, such as hierarchical coding and modeling ( Jones, 2007) Aim 1 Analysis Community Advisory Board Focus group transcripts were analyzed using a thematic analysis. Using thematic analysis techniques and coding methods developed by Charmaz ( 2006) I initially coded segments of data and identified specific codes that were identified in the data ( Braun & Clarke, 2006) Constant comparison of codes began in this stage, with all new codes compared to existing codes. Within the iterative process of coding, focused coding assisted in synthesizing initial codes into conceptual categories. Finally, code s were examined for relationships to aid in the emergence of the final themes and model. Peer debriefing with the Health Science Center Qualitative Data Analysis Group assisted the research team in validation of emergent themes. For example, provider kno wledge, provider communication, and cultural understanding were categorized under the theme of Interactions with Providers or Health Care System. The themes identified during the thematic analysis helped to sensitize me to the perspectives from area exper ts regarding linkage to HIV care. Detailed results from the thematic analysis of the CAB focus group are presented in Chapter 4.
70 Aim 2 Analysis For the participant interviews, techniques in grounded theory guided the process of analysis and include d metho ds by Glaser & Strauss ( 1967 ) S trauss & Corbin ( 1990 ) and Dimens ional Analysis ( Schatzman, 1991) Grounded Theory is an iterative process, and the stages listed do not necessarily occur in order but happen throughout analysis. A visual overview of the analytical procedure used f or the analysis in this research is depicted in Figure 39. During the interview, the researcher interprets the answers to the questions and makes decisions about the direction of questioning ( Richards & Morse, 2007) Analysis began during the interview with the interaction process between this r esearcher and the participant. As described earlier, field notes and memos were also written and used throughout the analysis process. After transcriptions were received, interview transcripts were read and all identifying information was removed. Even though coding and the generation of grounded theory is an iterative process, the process must have an entry poi nt for coding. Given the sparse amount of research and theory related to engaging in HIV care, lineby line open coding was used to ensure that I remained open to what emerge d from the data ( Charmaz, 2006) and to develop provisional concepts from the initial codes that were grounded in the data ( Strau ss, 1987 ) Open coding aided in sorting and clustering of data into concepts, and memos were created for areas that need ed further investigation ( Charmaz, 2006) For example, as crisis and support began to appear frequently in early coding, I created a memo of how these may be related (Figure 3 10). Open coding thus help ed determine the fit and relevance of the data and aided in removing personal interpretations ( Ch armaz, 2006)
71 Next, a process map for each participant in the research was created (Figure 311) to understand that persons comprehension of and experience with the HIV Linkage to Care process. The process diagrams also helped identify concepts from the initial coding and how they related to timing within the HIV Care Trajectory and to the move towards preliminary identification of relationships in the data among the individual participants. Once the initial codes become saturated, or reached a cri tical mass, and process maps were complete, I began using dimensional analysis techniques to examine the data f or conditions, context, processes, and consequences To facilitate this process, I creat ed a spreadsheet of each persons process map ( Kools, McCarthy, Dunham, & Robrecht, 1996; Schatzman, 1991) A partial segment of this spreadsheet is presented in Figure 312. The spreadsheet allowed a visualization and comparison within and between subjects and aided the process of constant comparison in which coded data is continuously compared, with emergi ng categories, and with emerging theory. Similar to axial coding as described by Strauss and Corbin ( 1990) Dimensional Analysis and the Explanatory Matrix was also used to guide the coding process Initial concepts (and representative codes and quotes) were printed on card stock and sorted according to an explanatory matrix: conditions, context, processes or consequences (Kools et al., 1996; Schatzman, 1991) According to Kools, (1996) and Schatzman ( Schatzman, 1991) context represents the situation in which the dimensions exist, conditions influence action and interaction of the phenomena or process, processes are i nfluenced by conditions and result in intended or unintended actions or interactions, and consequences are the outcomes of these actions or interactions. The results of this
72 initial sort are included in Figure 313. When using Dimensional Analysis, the analyst examines the data in its totality seeking to discover all that is happening and examines each code with the potential of it providing the most explanatory power of the phenomenon of interest ( Schatzman, 1991) A more formalized card sort was conducted with the University of Florida Qualitative Data Analysis Group after the completion of open coding, process diagramming, and categorization using the Explanatory Matrix for the first 12 interviews. Card sorts for qualitative research can assist the researcher in arranging coded segments of the data into categories and begin the process of moving from initial codes to more abstract conceptualizations ( Ryan & Bernard, 2003) The card sort technique helped move analysis into the next phase of the coding process. As the core cat egories beca me saturated and the categories were examined by later participants using the explanatory matrix analysis moved toward theoretical coding For theoretical coding, I re examined the data specific to emergent categories to help establish dimen sions for each category (Charmaz, 2006; Kools et al., 1996; Schatzman, 1991) Theoretical coding helped identify areas in the data that should be explored by theoretical sampling. As these areas were identified, earlier interviews were sampled to explore how the concepts were presented. For example, as the concept of support emerged as a condition with the most explanatory power, I reexamined earlier interviews to understand what support looked like, when it was provided, how it w as provided, and the role of support at each stage of the HIV Linkage to Care process. An example of this examination of the process is represented in Figure 314.
73 Four criteria will be used to evaluate the applicability of the developed grounded theory t o HIV linkage to care ( Struass & Corbin, 1990) In this study the theory 1) must fit the area of HIV linkage to care, 2) should be understandable by persons with HIV and other members of the CAB, 3) should be general enough that it can be applied to many persons newly diagnosed with HIV (not only those in a certain situation such as substance abuse), and 4) must have enough structure and control for persons using the theory to apply it in everyday situations Integrity and Protecti on of Human Subjects Evaluation Criteria Guba and Lincoln ( 1989 ) identified criteria used in c onstructivist inquiry for use in evaluation of qualitative research to enhance trustworthiness of the data and conclusions: credibility, dependability, confirmability, and transferability Credibility, similar to internal validity in quantitative research, refers to the truth in findings that is established between participants and the researcher (Guba & Lincoln, 1989). To enhance credibility in this proposal, peer debriefing and member checks were employed. Peer debriefing occurred through the presentat ion of data and conclusions to the HSC Qualitative Data Analysis Group during all stages of the research process Member checks with participants (via phone or in person) were conducted after initial coding and categorizing to confirm that the conclusions adequately reflect ed accuracy of the initial analysis of interview data (Cohen & Crabtree, 2006) Dependability in qualitative research, similar to reliability in quantitative research, can be achieved when outside reviewers can reach the same conclusions from the research process This is measured through an inquiry audit (Guba & Lincoln, 1989) To ensure dependability, the investigator will prepare for an audit trail by keeping careful
74 track of both the content and quality of the data and methodological decisions (Cohen & Crabtree, 2006) Using the same audit trail, I will seek confirmability of the research to ensure all conclusions are reflective of participants (and not the researcher) (Cohen & Crabtree, 2006) Finally, transferability ensures that the findings from this research will have applicability in other contexts and this will be ensured by the utilization of thick description. Thick (i.e., rich, in depth) description aims to provide enough detail that conclusions can be transf erable (Cohen & Crabtree, 2006) and can be achieved by obtaining detailed narratives from transcriptions of taped interviews and detailed field notes from the researcher ( Charmaz, 2006) Thick description will be incorporated in all presentations and publicat ions to enhance transferability The development of a reflexive journal will aid in determining personal thoughts and feelings that may influence decisionmaking and findings during the course of the study (Cohen & Crabtree, 2006) I have experience in working toward equality of treatment for persons with HIV through employment, education and prior research, including that with persons who have HIV It will be necessary to rev iew how these experiences may potentially influence findings from the research, and this will be discussed with members of my committee as well as disclosed in manuscripts and publications. During the coding process, I met with select participants advisor y board members, faculty advisors, and community advocates to discuss interpretation of the data (member checking) Throughout the research process, from open coding to theoretical development I review ed the analysis process and use d peer debriefing with the multidisciplinary HSC Qualitative Data Analysis Group to ensure that the codes
75 being developed were grounded in the data Led by Dr. Lutz ( chair ), this group is comprised of expert faculty and graduate students with experience in qualitative methods and backgrounds in public health, nursing, and disability research. The group meets biweekly to review and critique qualitative proposals, analysis, and publications from faculty and student research. I present ed my ongoing data analysis and memos (sever al times throughout the dissertation research process ) to this group for feedback and assistance with data analysis Dr. Lutz and I also meet regularly for feedback and to review ongoing analysis and evaluate theory development Protection of Human Subjects Sources of data Data were obtained from participants in the form of voice recordings and demographic data including age, race, ethnicity, gender, and contact information. No tissue, blood, or body fluids were collected. Voice recordings were tr anscribed verbatim, and no identifying information was included in the transcriptions (deidentified) although the voice recordings themselves are considered identifying information. A UF approved professional transcription service was employed for trans cription of all recorded interviews All voice recordings will be destroyed six years after the close of the study, per University of Florida policy. Study materials were kept in a locked cabinet in a lock ed office at all times. The only people allowed to see the raw data received training in the protection of human subjects and privacy and were approved by the University of Florida Institutional Review Board. My dissertation committee, mentors in the Colleges of Nursing, Public Health and Health Profes sions, College of Medicine, consultants and the Health Science Center Qualitative Data Analysis Workgroup may review deidentified data
76 Pot ential r isks Issues related to HIV/AIDS are sensitive and may be difficult for some persons to discuss. Aim 1 Participants in the CAB were not expected to disclose their HIV status or discuss any issues that cause d discomfort Furthermore, engagement in the CAB took time, without pay, from the participant s schedule s. I tried to remain sensitive and resp ectful o f this contribution at all times (i.e., making sure I kept the focus group within the allotted time frame). I reminded CAB members of the importance of complete confidentiality of all discussions at the beginning and end of each session. During the consent process, all participants were duly informed of the potential for other group members to disclose another members HIV status outside of the CAB if a participant chooses to reveal his or her HIV status A brief training session about th e importance of confidentiality was conducted at the beginning of the study and all CAB members were reminded at the beginning and end of sessions to respect the confidentiality of all participants Aim 2 Although the primary risk of study participati on was a risk of disclosure of HIV status related to issues of confidentiality, this risk was expected to be minimal according to IRB 01 policy and regulations ( University of Florida Institutional Review Board, 2010) Some persons may experience psychological discomfort when discussing issues related to HIV/AIDS and I rem ain ed sensitive to this all times Participants were not required to answer any questions that caused discomfort and they had the option to discontinue their participation at any time if they desired.
77 Protection s against r isk Prior to any study and enr ollment procedures, the research was approved by the University of Florida IRB 01 (University of Florida Health Science Center) for both aims in this application Risk of Confidentiality Precautions were taken to ensure all research materials were not available to anyone except the researcher and the committee chair. De identification of participants names or any other identifying information bega n with the interviews all participants were assigned a study number that corresponded with their interview Documents linking participant ID numbers to participant names were kept in a locked file cabinet in a locked office at all times Participant contact information was kept on a password protected encrypted drive managed by the College of Nursing Information Technology staff. Digital recordings were stored on a digital recorder and transported in a locked case between the place of interview and the computer where they were uploaded to the protected drive. At completion of the upload of the recording, the digital recorder was reformatted to erase the recording from the portable device. Any information in the transcriptions that reveal ed the identity of the participant was re moved. Prior to presenting any data to the UF Health Science Center Qualitative Data Analysis Group, I ensured there was no identifying information contained in the transcripts and no results will ever be reported in a personally identifiable manner My chair (Dr. Lutz) has extensive experience in the protection of data and helped oversee this process to ensure confidentiality. Risk of Psychological Distress Issues related to HIV/AIDS are sensitive and may be difficult or cause psychological discomfort during discussions in CAB sessions and interviews. I remain ed sensitive to this at all times, and participants were reminded
78 they were not required to answer any questions that cause d discomfort I have several years experience as a psychiatric staff n urse and was able to provide psychosocial care if needed or refer distressed clients to the Crisis Center (in Alachua County Health Department) if deemed necessary. Potential benefits of the proposed research to hu man subjects and o thers There were no dire ct benefits to participants for participation in this research. However, CAB participants may have become more knowledgeable about issues related to HIV and linkage to care, and may be empowered to work more effectively with persons with HIV/AIDS and to l earn about the research process Interview participants may have gain ed knowledge about HIV care options and feel enc ouraged about seeking care. S uccessful strategies to enhance linkage to care identif ied from results of this study have the potential to improve outcomes and may eventually be seen at (a) the individual level through decreased mortality and fewer opportunistic infections and (b) the individual and population level through decreased transmission risk behaviors and infectiousness of persons w ith HIV. Importance of the knowledge to be g ained This research is the first, to our knowledge, to examine the decision making process of linkage to care among persons in small metropolitan (<500,000) and rural areas who have been diagnosed with HIV and not sought care, who delayed care for over 9 months, and who initiated care immediately after diagnosis The incorporation of community involvement in identification of barriers to seeking care for HIV and potential solutions to facilitate linkage to car e is expected to yield important data for informing the development of a future intervention. Implemented and refined in a future study, the intervention is expected to provide benefits at both individual and population levels by
79 improving linkage to car e while being sensitive to both the barriers faced by persons newly diagnosed with HIV and the financial limitations of small metropolitan and rural health care providers.
80 Figure 31. Bronfenbrenners Social Ecological Model Macrosystem Exosystem Mesosystem Microsystem = Individual
81 Table 31. McLeroys ( 198 8 ) Adaptation of Bronfenbrenners Social Ecological Model Intrapersonal Characteristics of the individual such as knowledge, attitudes, and behaviors Interpersonal Formal and informal social relationships and support systems such as family and friends Organizational Social institutions with organizational characteristics (i.e. workplace) Community Groups to which individuals belong, relationships among organizations and groups, and/or geographical or political community Public Policy Local, state national laws and policies to protect the health of the community.
82 Figure 32. Development of a Linkage to Care Grounded Theory Using a Social Ecological Model
83 Figure 33. The Relationships Among Conceptual Models Kurt Lewin Behavior is a function of person and environment and should be studied in real life events Participatory Research CBPR Pragmatism Symbolic Interactionism Ecological Models Social Ecological Model Mead Development of the mind is a social/interactive process Bronfenbrenner A variety of influences on behavior, including personal environment, external influences on environment, and relationships of a person within and to the environment
84 Figure 34. Area 3/13
85 Figure 35. Barriers to Care Model Presented to Community Advisory Board North Central Florida HIV Care Trajectory (Adapted from Mugavero, 2011) Unaware of HIV StatusHIV DiagnosisLinkage to CareHIV CAREHIV Care RetentionOutcomes System Level Actions Decrease in use tertiary care resulting in overall health care savings. Community Level Actions Neighborhood, Poverty, Education, Social Norms, Stigma, Trust Decreased transmission, decresased incidence Client Level Actions Seeks HIV TestObtains Results Sexual Risk Factors, Substance Abuse, Transportation, Housing, Income, Education Attends ClinicAttends Regularly Decreased Viral Load, Improved CD4, Fewer Opportunistic Infections Private, Public, Ryan White funding for care. HIV Care Providers (Physicians, Nurses, Case Managers, Pharmacists, Dieticians) Prevention Specialists, community volunteers, (and some health care providers) identify at risk persons and provide counseling and testing services. DIS interviews positive persons. Surveillance identifies all HIV positive test results for tracking purposes. Separate database compiles all lab notifications of CD4 and HIV viral load lab results. No integration of databases. One way data goes into surveillance but not out to public health departments for tracking. HIV Testing/Treatment Guidelines, Funding, Workforce, Reimbursement, Surveillance, Service Integration, Clinic Distance, Clinic Culture, Appointment Availability
86 Figure 36 Draft Linkage to Care Advertisement for Community Advisory Board Meeting
87 Figure 37. Representation of Drawing used in Select Participant Interviews
88 Figure 38 Early Model Iteration
89 Figure 39 Grounded Theory Analytical Process
90 Figure 310. Example of Early Analytic Memo Support as a Mediator for Crisis and Outcomes
91 Participant #4 Process Diagram Before Diagnosis Diagnosis Immediate Response Transition Decision to Initiate Care Recommendations Risky Behaviors Mandatory Testing in Jail Denial Went back to streets Did not know if it had moved from HIV to AIDS Privacy Jail Just give me a piece of paper Did not want to accept it No support Niece pushed her to find out. Said a lady her age should not be in the streets. Confidential situation (have RN consultant in jail to talk to) Drugs You got to fend for yourself Didnt want to face reality Kept on doing drugs Spiritual awakening. Realization she had hit bottom. Help people with all they need at one time Trouble I was shame I wasnt living, I was existing Have need for caring personality to reach out to those hurting I was hurted Saying you have it can mess up your life (stigma) Build place of support Cried for a month Disclosed to mom at first and then mom died. Went back to streets. Notes: Going from day to day trying to struggle, trying to survive I trust in God to carry me Figure 311. Example of Process Diagram from Early Coding
92 Age Circumstances of Infection Ethnicity Race Highest Level Education Place of Diagnosis Stigma Response to Diagnosis Barriers to Care 4554 Risky Behaviors and Substance Use Non Hispanic Black or African American High School Diploma Rehabilitation (Drug) When, um, me and my physician talked about it, it was like I was scared because I didn't want anything to change. I didn't want to lose my a ppearance. I didn't want to lose some things. Because then, the whole world would know. Yeah, she got it. Somebody said she did and I wasn't sure. So I was, I was struggling with the image thing of what people think. Increase Risky Behavior and reluct ance to deal or cope with diagnosis. Not ready to deal. Competing life stressors. Figure 312. Excerpt from Spreadsheet used to compare data within and between participants.
93 Figure 313. Initial Coding Categories and Schatzmans (1991) Explanatory Matrix
94 Participant 4 Before Diagnosis At Diagnosis After Diagnosis Prior to Care Initiation Support What did it look like? None None Handed Paper None Direct When provided? X How was it provided? Direction and concern from niece. Spiritual awakening (God provided support). Role of support at each stage. Not influential Not influential Brief support from mom until death. Afterwards, not influential Influential Pivotal Moments People? Niece Life Events? Spiritual Awakening System Initiated? Impact of Others? Niece Activation Physical Niece began, HD promoted Emotional Interpersonal decision from spiritual awakening Figure 314. Example of Exploration of Conceptual Ideas in Data
95 CHAPTER 4 COMMUNITY ADVISORY BOARD As outlined in Chapter 3, I formed a community advisory board to oversee and advise on the research process. The advisory board met once, and a focus group format was used to help elicit their perspectives on linkage to care. At the beginning of the first meeting and focus group, I reviewed the definition and objectives of CBPR research, asserted my desire to work in partner ship with the members of the CAB, and welcomed feedback at all points in the process. I offered suggestions for operating guidelines that included respect for confidentiality, respect for other members of the CAB, shared decision making, identification of common goals and objectives, democratic leadership, and access to data. Re sponsibilities of the board included shar ing perspectives regarding barriers to linkage to care and to offering potential solutions In addition, the advisory board would provide i nput on study design and recruitment strategies for study participants, to promote cultural sensitivity for data collection The focus group format elicit ed important information regarding each of the tasks set before the CAB and will be reviewed in this chapter. The results of the focus group were analyzed for thematic awareness and not for the generation of grounded theory. The themes presented in the first half of this chapter were a means of synthesizing the data to orient me in regards to the local perceptions of Linkage to HIV Care in Area 3/13. The second half of this chapter presents the CAB recommendations about the methods of the research. Finally, an evaluation of the CBPR process is presented at the end of the chapter.
96 Demographics The CAB consisted of seven participants ranging in age from 35 64 and included representatives from the local health department, local planning council, the University of Florida and consumers of HIV services The three male and four female representatives included r acial representation from the following groups: white, American Indian/Alaska Native, and Black/African American. Table 41 summarizes the demographics of the CAB. Several participants had more than 20 years of experience working with persons with H IV, either as advocates or through employment. Perspectives on Linkage to Care Members of the focus group acknowledged the concepts identified as barriers from The Linkage to Care Model (Figure 3 6). In their discussions, they identified what they perceived were the key barriers and facilitators regarding linkage to care. Three major themes emerged from the analysis of the focus group: interactions with the health care system, the impact of an HIV diagnosis, and individual circumstances. Interact ions with Providers or Health Care System Three types of provider issues were raised by the CAB: education, communication, and cultural understanding Participants identified four types of education present in the linkage process: basic education or healt h literacy of the client, provider knowledge of pathophysiology, provider knowledge of history of HIV, and provider knowledge about communication. First, basic education (reading and writing) is helpful to understand the information provided by providers for clients In addition, providers need to understand the basic pathophysiology of HIV and the history of HIV However, CAB members were most adamant about provider knowledge of communication, or how to discuss issues related to HIV and sexuality For example:
97 CAB Member: I think you can add a fourth education, knowledge thing to that in with the practitioners, they may be book smart, they may be smart about the disease, but when it comes to interaction with people, we have had practitioners who do not have bedside manners CAB Member 2 : And clients are put off by that CAB Member: That, and I have to say that is not specific to just HIV Nor is the lack of ability to take a sexual history and talk straight faced is restricted to HIV. Another factor regarding communication and linkage to care focused on how the providers deliver ed the diagnosis They felt there were certain ways that the diagnosis could be delivered that would have an impact on the client and the decision to link to care For exampl e : CAB Member: Even Ive heard clients in the old days talk about [name deleted] when [name deleted] used to give results from, the counseling and testing days And they would say [providers name] r saved my life He told me I have a choice. I can eith er die or I can keep living And I mean, you know something in that theres that just that linkage person. We didnt have a very developed, we didnt have a system back in those days But still, that person that delivers that message and how they, how that message comes Its not just here is your test results, next. While the participants considered knowledge of the disease and how to talk to people as important competencies the concept of cultural understanding and sensitivity was also introduced during the CAB focus group. Participants felt a better understanding of cultural differences was necessary in order to help clients link to care. As noted by one member : CAB Member: Theyre not sensitive to the transgender population I think there is cul tural sensitivity that still needs to be addressed as far as .. I think there is just a lot of cultural issues, gender issues that still need to be addressed that play a big part in a clients decision to seek care.
98 In the scientific literature, the conc ept of cultural competence in HIV care was recently examined to understand how it contributes to racial disparities, receipt of antiretroviral therapy, and suppressed viral load. Investigators found that providers with low cultural competency had more rac ial disparities in receipt of ARV and suppressed viral load ( Saha et al., 2013) Impact of Diagnosis The impact of a persons new HIV diagnosis centered on fear of disclosure, stigma, responsibilities to get into care, and needed support Focus group participants described the impact of an HIV diagnosis as leaving the person in shock and with the perception that everyone would know his or her status Living in a small community further impacted the fear of disclosure, even if someone was only testing for HIV For example, a participant discuss ed a comment made by her son when he was tested: CAB Member: My son got tested by a community health worker And his first question to her was well is this, just, gonna, will my mom get this? Because I am with a local AIDS organizationI mean that OK, hes a little close. He kind of knows something about HIV But, you know they do, they think that everybody knows If you are connected in any way, everybody knows. In addition to the immediate fear of others finding out about their HIV status, newly diagnosed clients are overwhelmed with information and tests Often they are not able to process all the information that is being delivered at the time of diagnosis The advisory board described the following situation: CAB Member: Well somebody thats newly diagnosed not only do they have to accept and get over that initial shock of the diagnosis, someones telling them youve got to get into care, youve got to get on meds, you ve got to do eligibility, you need to see where your insur ance will send you, if you dont have insurance, youve got to apply for Medicaid, I mean its just CAB M ember 2: More needles sticks.
99 Members of the advisory board talked extensively about the support needs of clients newly diagnosed and commented abou t how for some, the se support needs continued into the HIV care environment Support can have many dimensions: informational, emotional, and tangible ( Peterson, RintamkI, Brashers, Goldsmith, & Neidig, 2012) While the board members stressed an overload of informational support, they felt emotional support was not adequately met CAB Member: And that, and that crosses all kinds of cultural groups Because I think at the core of what you are talking about, in terms of prevention, is about getting emotional needs met You really hit it right on the heart It doesnt matter, rich, poor gay, straight. Later in the focus group, emotional support came up again, and this time it was compared to a cancer diagnosis as a board member talked a bout how the emotional support he received when he had cancer helped him connect He explained that with cancer, the emotional support was there for you without having to look, along with other services that were readily explained and available. CAB Membe r: Well that is kind of interesting because the cancer kind of thing was kind of in that mode. I t was the first person before you would go in for your treatment of the day or whatever kind of thing, that was a hand hold, before you would go to the treatment center, or the chemo, the lab. And that was an important linkag e point and they were, they werent I dont know if they were full RNs or what, but they were hand holdersCan we get you something? Can we do this for you? Are you comfortable? Is the temperature too w arm? Is it too cold? A ll of those kinds of things a ffect how you might be affec ted by the treatment kind of stuff. Individual Circumstances Oftentimes, other issues in a persons life can influence the decision to seek HIV care Basic needs such as food and shelter may need to be met before someone can consider taking the necessary steps to seek HIV care. As the CAB deliberated on this subject, a member noted the increased challenge when diagnosing someone with HIV
100 CAB Member: I think th at something that interferes too is just that people, some people, have this overall life chaos And I say this a lot HIV is t he least of the problems of our clients You know they are dealing with basic needs (background people saying right ) CAB M ember 2 : Necessities including food, jobs, kids That kind of stuff Where are they going to sleep tonight? (someone in background saying right ) CAB Member: S o us giving them a diagnosis that requires kind of high level thinking in terms of pla nning and doing the right things when they are hungry or thei r kids are hungry (someone in background saying right ) Views of HIV illness and treatment may impact the decision to seek care. Several times during the focus group, CAB members compared an HIV diagnosis to a cancer diagnosis The trajectory of illness for HIV is unique in that people often feel better in the first years after contracting the virus For exampl e: CAB Member: I just think its much easier for someone to be in denial with HIV than it is with cancer when they might get really ill with cancer three months after their diagnosis And HIV we have people that never take drugs, they may have low CD4 counts and high viral loads b ut they dont feel ill CAB Member: Were telling them that they are sick. Summary of Community Perspectives on Linkage Community perspectives regarding linkage to care suggest a myriad of influences on the decision to seek care. The complexity of personal, social, cultural, and system factors impacting linkage to care reflected other research in this area For example, Beer and colleagues (Beer et al., 2009) conducted a qualitative analysis of 37 persons from five major US cities and found three key themes that influenced their decisions to initiate care: disbelief about HIV status ; conceptions about illness and appropriate health care; and negative experiences and distrust of health care closely
101 related to the themes about the impact of diagnosis and individual circumstances which are represented in Figure 41 Provider sys tem interactions have also been highlighted in previous research regarding linkage to care. Gilman ( 2012) examined successful linkage to care programs and noted a lack of adequate training among clinicians as a challeng e for linkage Furthermore, Gilman (2012) reported staff perceptions of challenges to linkage included a patients lack of knowledge about HIV, stigma, and cultural issues In our data, cultural barriers and lack of knowledge were also reported. H owever, the CAB focus group stressed a lack of knowledge and cultural barriers among providers rather than among patients. HIV models of care tested in the literature deal with concepts including: coordination, continuity, advocacy, outcomes, quality, and costs. Most successful Linkage to Care models and concepts are initiated after an HIV diagnosis (Bradford et al., 2007; Gardner et al., 2005) However, from the analysis of the CAB focus group data, some barriers to HIV care can exist before someone is diagnosed (individual circumstances) It is possible that we should begin the idea of engagement in HIV care when the client is seeks an HIV test In summary, the CAB confirmed the Linkage to Care Model (Figure 3 5 ) but also highlighted specific areas to target Future research should explore interventions to address barriers to linkage at testing As noted in the findings, an HIV diagnosis can be traumatic for many given the stigma associated with the disease. Client responses to the diagnosis are sometimes equated to a traumatic event with increases in depression, denial, substance use, risky behaviors, shame, and suicidal ideation ( Stevens & Doerr, 1997; Stevens & Hildebrandt, 2006) Consideration of when care begins for the newly
102 dia gnosed patient to ensure continuity through the entire course of illness may be necessary CAB Study Method Recommendations Sample and Recruitment I shared possible recruitment strategies with the advisory board, including where to recruit, who to recruit, and methods of increasing participation. Board members were initially concerned that the planned recruitment locations would only gather information from the public health care sector and the private sector would not be adequately represented. T hey recommended a diverse sample be ensured by recruitment through SHANDS Infectious Disease Clinics or the Veterans Health Administration Clinics. Subsequently, extension of recruitment through HealthStreet was able to address this recruitment concern an d ensure representation from both the public and private health care system. After reviewing the literature, I found that women with HIV who become pregnant, or pregnant women who are newly diagnosed with HIV in their pregnancy, receive additional linkage to care strategies to protect the child from vertical transmission. Furthermore, people in jail who are known to be HIV positive or are diagnosed in the jail also receive additional services to engage in HIV care. Initially, the plan was to gain understanding only from those who did not receive support services. The thinking was that people who had received such services could possibly bias the results. The community advisory board was the first to point out that the perspectives of people who had addit ional services were important to include because they would provide valuable information about what worked for people who did link to care after receiving these types of services. Furthermore, as I learned more about constructivist grounded theory,
103 I real ized the concept of bias did not fit with the conceptual framework guiding this research. Bias is a term used to describe the inability of a researcher to remove his or her perspective from the research process. and the perspectives of all were needed to inform the creation of grounded theory. Therefore, the decision was made that participants in the research would include anyone over 18 with a diagnosis of HIV. Board members had many recommendations regarding enhanced recruitment strategies, including ad vertisements and incentives. When reviewing the draft advertisement (Figure 36), board members from the public health care sector initially commented on the prominence of the HIV Red Ribbon badge. They felt some people with HIV were tired of being assoc iated with the HIV badge. Board members representing the private sector felt the badge was important to help people with HIV identify that the study may be of interest. There were a few things board members felt were lacking: a clear explanation of who c onstituted the research team; why participants should trust the team; and that all results were confidential. Members felt the study explanation and inclusion criterion was too academic and wordy. They said community perceptions of academia being uppity and could be a barrier. One board recommendation was that the study title be removed from the flyer since it sounded too academic and there was sometimes distrust of the academic community. However, this was a violation of IRB policy. We were able to reach a compromise by placing the title at the bottom with less emphasis. While the board felt it was important to include the incentive, IRB policies required me to remove mention of them from the advertisement. The modified, final IRB approved version of the participant interview recruitment flyer is included in Appendix A.
104 Some board members expressed concern about the incentive to participate. They worried that if participants who were on the border for eligibility of services reported the $25 income, this could cause them to lose HIV services and assistance with care and medicines. In order to address this concern, I included an option for participants who might be worried about their eligibility. Instead of the $25 giftcard, they could receive $25 of goods they were unable to purchase through federal assistance (foodstamps), such as toilet paper and paper towels. Data collection Data collection was discussed with the board, including who should conduct the data collection, what format it should tak e, and a review of a tentative interview guide for comprehensiveness and cultural sensitivity. I expressed concern to the board that some people who were not in care might be hesitant to discuss issues regarding care with me since I was a nurse. I specif ically asked if they thought I would get data more reflective of the process if I were to find someone to interview participants who they could relate with. The board felt I would be the best person to collect the data. However, they encouraged me to be sensitive and aware of the possibility of discomfort and to make sure I did not make the participant feel guilty about not being in care. We also discussed whether an interview format was the best for data collection. Board members thought interviews woul d elicit more honest information since HIV is a sensitive issue. However, they felt a focus group format with peer navigators may elicit interesting information. While I decided it would be too challenging to coordinate focus groups, I was able to gain p erspectives from peer navigators on data collection by specifically including people with peer navigation experience in the participant interviews.
105 Finally, I reviewed a tentative interview guide with the Community Advisory Board. They recommended starting with a clearer explanation of why I was conducting this research. Board members also identified words like should that seemed judgmental and replaced them with words like need. For example, they suggested replacing the question, Do you think you should receive HIV treatment? with Do you think you need HIV treatment? Finally they offered suggestions for questions they thought would build rapport and trust, such as describe an average day before or after diagnosis and what are your beliefs regarding HIV treatment. Evaluation of CBPR Mercer, et al. ( 2008) established guidelines to determine the extent a research project adheres to the princi ples of CBPR. The guidelines include 4 categories, each with multiple defining characteristics. The defining characteristics of each guideline are weighted along a continuum from no community participation to full engagement and partnership between researcher and community. For this section, I will identify each guideline from Mercer, et al. (2008) and address the level of community participation for each of the defining characteristics. The first guideline of the CBPR evaluation begins by reviewing t he participants and the nature of their involvement in the research. The first defining characteristic of this guideline evaluates the description of community participants. The community participants were briefly described earlier in this chapter H owe ver the sensitive nature of the research question and the agreement of confidentiality at the initial meeting prevent s explicit descriptions in publically available written materials. The second defining characteristic addresses representation of the comm unity to benefit intended users. I sought to achieve representation from case managers, prevention specialists,
106 administrators, planners, consumers, minority advocates, and researchers. At the initial meeting, due to unforeseen circumstances, the minorit y advocate and one consumer were not able to attend. I was able to speak with both after the meeting and the consumer felt participation in the interviews (Aim 2), instead of the board, would allow her voice to be heard. The minority advocate was unable to attend because of competing priorities at the time of the meeting, but will be included in future meetings. The third defining characteristic evaluates the effort to address barriers to participation in the research process by members who may be underr epresented. In order to focus on barriers that could limit participation, members requested the use of email correspondence instead of frequent meetings to address any issues that would arise in the conduct of the research. Given my inexperience in the C BPR process, I chose to keep the initial board small which may risk underrepresentation. As I become more familiar with the CBPR process, future steps will include possible expansion of the existing board to assure adequate representation from the community. The fourth defining characteristic addresses the establishment of trust between researchers and intended users participating in the process. To address this, I began the process of building trust years before the initiation of the project through r egular attendance at community advocacy meetings and by volunteering at the local health department. The final defining characteristic of the first guideline regards the use of formal or infor mal agreements in the project. During the initial focus group meeting, guidelines and operating norms were reviewed and agreed upon by participants. The second guideline to evaluate the CBPR process focuses on shaping the purpose and scope of the research. The first defining characteristic evaluates the
107 development of the research question. For this project, prior to creating the CAB, I met with health department representatives to discuss linkage to care after reviewing the literature in a health promotion class. The health department representatives agreed that linkage to care was an important concern in the community and, given the limitations in staffing, welcomed my work on the project for an internship. The development of the research question came from that initial work with the members of the community (pr oviders and consumers of HIV services ) The second defining characteristic of this guideline assesses the applied knowledge of the CAB in the design of the research. While the research question originated with the community, the researcher introduced the initial design. However, during the CAB focus group, design issues such as inclusion/exclusion criteria, who should conduct the interviews, and review of interview guide questions relied on the expertise of the members from the CAB. The provision of mutual learning between the researcher and community was the third defining characteristic. For this project, mutual learning was optimal for two reasons. First, the topic, linkage to care, was important to providers and consumers in th e community and they do not have adequate resources to address the problem. Second, the question was of interest to me, the researcher, to help achieve my goals in learning the research process and helping the community. Determining whether the research addresses multiple ecological levels is the fourth defining characteristic of this guideline. This was evident in the initial focus group meeting as we reviewed current barriers to linkage from an ecological framework (Figure 35) that addressed multiple determinants of health. The final defining characteristic evaluates the plans to build capacity to address the multiple ecological influences on linkage to care. For this
108 characteristic, while I am hopeful for continuation of the collaboration, plans to build capacity will be evaluated after the results of this research are presented to community members. The third guideline focuses on research implementation and context. This guidelines defining characteristics relate to the application of the CAB experience in implementation, providing opportunities for mutual learning between the researcher and community, agreement regarding changes in methods, and opportunities for community involvement in data collection, analysis, and interpretation. For the imple mentation of the research, I relied heavily on the CABs knowledge and experience for identification of participants, advertisements, and strategies for conducting the research that would assist in obtaining an accurate representation of the participants experiences. We agreed that any major changes in methods beyond the advisory group meeting would be addressed by email correspondence. For data collection, analysis, and interpretation, there was a varying amount of participation from the CAB. Due to t he sensitive nature of the participant stories, the details of their experiences revealed in the interviews, and the involvement of the CAB with members of the community at large, I was not able to allow the CAB members to see the data without potentially breaching confidentiality of the participants. However, as the theory began to be developed I met individually with members of the CAB to discuss the model, and gain their perspective on the emerging theory They were able to offer feedback and clarific ation on several issues. For example, when understanding activation in care, I met with a CAB member, described the concept identified from the data, and gained an understanding of the department of health protocol regarding how
109 engagement is implemented with the pregnancy of a woman with HIV. I will continue to work with the CAB to interpret the data and theory developed from the analysis, and further develop the program of research. The final guideline used in evaluating adherence to the principles of C BPR is concerned with the nature of the research outcomes. The defining characteristics of this guideline pertains to the commitment of the CAB to use the outcomes of the research for action, an agreement for resolving differences in interpretation, owner ship and sharing of the data, feedback of research results, dissemination, and application of the results. During individual interactions, members of the CAB have expressed enthusiasm regarding the results of this research. Furthermore, they have expressed an appreciation of my willingness to share the results with the community saying in many cases they never learned the outcomes of research conducted on members within the community. As covered in the initial meeting, any differences in interpretation, feedback, dissemination, and application of the research results will be resolved using a democratic process. The CAB understands that I will need to retain ownership of the data due to regulatory guidelines from the University of Florida Institutional R eview Board (IRB). However, any member of the CAB who wishes to complete necessary IRB training may request access to deidentified data. During my work with community members before the formalization of the CAB, select members of the community served as co authors on poster presentations. CAB members contributing to the preparation or review of manuscripts for dissemination will be offered authorship on publications.
110 Finally, application of the findings from this research, as well as plans for the next phase of this research, will be negotiated in the next meeting. Using a CBPR approach to research is an ongoing and lengthy process. The investigator must take time to earn the trust of the community in order to begin to build an effective partnership. This dissertation research initiated the CBPR process with community members who were knowledgeable about HIV prevention, care, and linkage. While I did not meet formally with CAB members beyond the initial focus group meeting, I was able to individually engage with them at least monthly for discussions regarding the research process. In future collaborations, I will strive to address the guidelines and defining characteristics that did not offer complete partnership between me and the community, includi ng more comprehensive representation of community members, plans for sustainability, inclusion in the development of the next research question, formally convening CAB members for interpretation of analysis, and creating formal agreements for management of the project, changes in the research process, and offering community members the option of participating on the research team. I will continue to donate my time to the community (Ryan White Care Consortium and Statewide HIV Prevention Planning Group) to promote trust and build the partnership. Summary Members of the HIV Linkage to Care Community Advisory Board assisted in the process of inquiry by orienting me to the issues and culture within Area 3/13. The CAB resulted in collaborati on network building and promotion of research among (a) persons with HIV, (b) community HIV agencies, (c) local health departments, and (d) the University of Florida Colleges of Nursing and Public Health/Health Professions. The
111 CAB was able to identify local perspectives o n linkage to care specific to interactions with providers, the impact of the diagnosis, and individual circumstances. Members of the CAB offered solutions to improve HIV linkage to care, make recommendations on study design and recruitment strategies for participants interviews and encourage cultural sensitivity for data collection.
112 Table 41 Demographics of Community Advisory Board Participants Variable n= 7 Gender Male 3 Female 4 Age Group 25 34 0 35 44 1 45 54 3 55 64 3 Race Black or African American 1 White 5 American Indian/Alaska Native 1 Ethnicity Not Hispanic 6 Hispanic 1
113 Figure 41. Community Advisory Board Overview of Area 3/13 Linkage to Care 1) Provider Knowledge 2) Provider Communication 3) Cultural Understanding 1) Fear of Disclosure/ Stigma 2) Information Overload 1 ) Competing life demands 2 ) Illness trajectory and views of illness HIV Care Provider/System Interactions Impact of Diagnosis Individual Circumstances
114 CHAPTER 5 PARTICIPANT INTERVIEWS The previous chapter covered the first aim of this research, the formation of a community advisory board ( CAB ) In this chapter, the results of the second aim, the participant interviews, will be presented. In qualitative research, the findings are a combination of what we are told during data collection and interpretations through the analytic process. Therefore, in this chapter, both the conceptual findings and discussion relevant to the concepts presented will be reviewed. The chapter begins with a description of the sample followed by a conceptual overview of the Decision Process and Recommendation Model. Next I will describe the context of Linkage to HIV Care and conditions that influence linkage to care In later sections each component of the model will be described in more detail integrating and discussing literature relevant to that concept, and including participant recommendations for system interventions to promote linkage at that stage. Demogr aphics There were 10 men and 10 women participating in this phase of the study Participants ranged from ages 2564 and represented a variety of HIV transmission categories, including heterosexual, men who have sex with men, rape, and blood transfusion. Education levels varied among the participants, ranging from less than a high school education to a masters degree. Participants had been diagnosed HIV positive on a timescale of between the past 2 years to 25 years. See Table 51 for complete demographi cs.
115 The Decision Process and Recommendations of Linkage to Care (Model Description) From the data collected during 20 participant interviews, I create d a theoretical model that depicts the decision process from HIV diagnosis to HIV care and recommendations to promote improved linkage to care. Figure 51 presents the conceptual model of the grounded theory generated from the data in the research, A CBPR Approach to Facilitate Linkage to Care for Persons with HIV. According to the HRSA Linkage to Care contin uum (Table 11), the process of linkage to care begins when a person is infected with HIV. However, the focus of data collection in this research is on the process beginning when the person receives an HIV diagnosis. The model represents the context of l inkage, conditions that impact the linkage to care decision, the decision process for linking to care, and participant recommendations to improve the linkage process. In this section, I will briefly describe the model and in subsequent sections of this ch apter, carefully describe each aspect of the model and incorporate representative quotes from the data and discussion from relevant literature. At the top of the model (Figure 5 1) the word stigma is in grey. The grey color extends to the box that encomp asses the model. The area in the grey box represents the context of the linkage to care process. From the description of Dimensional Analysis in Chapter 3, recall that context represents the environment in which the dimensions of the phenomena of interest exist (Kools et al., 1996; Schatzman, 1991) For people diagnosed with HIV, that context is stigma. Stigma influences the entire HIV Care Trajectory and will be fully described in the next section. Conditions influence action or interaction in the process of Linkage to Care (Kools et al., 1996; Schatzman, 1991) In the model, conditions are shown in an orange
116 color. From the data, some conditions influence the decisionmaking process after the diagnosis, including a persons definition of care, t heir activation in care, and conflicting messages of care. The large arrow of support (in orange and grey) serves a dual purpose in the model. First it is a condition that influences the decision process and is critical before a person is diagnosed, thr oughout the decision process, and continues after they link to HIV care. Second, participants recommended the provision of support throughout the entire process. According to dimensional analysis, processes are influenced by conditions and result in inten ded or unintended actions or interactions (Kools et al., 1996; Schatzman, 1991) In this model, t he decision process begins with the HIV diagnosis, continues to the grief response, and then comes to the point of resolution or appraisal. At this decision point, a person will decide to begin the HIV care process (intended action) or delay care (unintended action). The length o f time a person will stay at their resulting decision can vary and therefore is not depicted linearly in the model. Pivotal events, in the blue box at the bottom of the model, bring the person back to the decision point of resolution and (re)appraisal. T he light grey boxes under the blue boxes in the decision process represent participant recommendations to promote linkage to care. For example, participants recommended anticipatory guidance and improved diagnosis delivery during an HIV diagnosis. Durin g the crisis period, participants recommended three ways that would help facilitate entry into care. These included maintaining a connection between the client and healthcare system; assistance in navigation of available resources, and counseling
117 to help them through the crisis period and deal with the grief and loss of being diagnosed with HIV. Once someone entered care, a holistic understanding and shared decisionmaking were important. Specific aspects of the model are explained more thoroughly in the following sections. The Context of Linkage to Care: Stigma As shown in the model (Figure 5 1) s tigma provides the cultural context for HIV Linkage to Care in the United States, and in particular, in the small metropolitan and rural areas of North Central Florida. Stigma refers to prejudice and discrimination of people with HIV/AIDS ( Herek, 2009) and is considered a personal/cultural barrier to HIV care in the social ecological model constructs (Tobias et al., 2007) Stigma can be a characteristic someone possesses that is viewed negatively by others, or it can be considered an outcome when someone is associated with the characteristic and subse quently experiences negative consequences ( Berger, Ferrans, & Lashley 2001) Without the stigma surrounding HIV, Linkage to Care would not be as challenging as it is today. In general, barriers to health care exist, but when those barriers are combined with a stigmatized disease, such as HIV, accessing health care is more difficult. The fear of disclosure of a stigmatizing condition such as HIV leads to decreases in HIV testing and linkage to HIV care (Berger et al., 2001) Participants discussed stigma extensively in the interviews and included examples of stigma : Participant: When me and my physician talked about it, it was like I was scared beca use I didn't want anything to change. I didn't want to lose my appearance. I didn't want to lose some things. Because then, the whole world would know Yeah, she got it. Somebody said she did and I wasn't sure So I was, I was struggling with the ima ge thing of what people think. HIV related stigma is not only prevalent outside of healthcare. Stigmatizing attitudes, or attitudes correlated with misunderstandings and misperceptions regarding HIV also
118 exist within the healthcare system ( Parker & Aggleton, 2003) People knowledgeable about HIV and how it is transmitted still stigmatize HIV. A participant commented on his experiences in a healthcare setting (hospital). Par ticipant: In this day and age, you know? Yet they [healthcare providers] dont realize that theyre taking aif theyre sitting on a toilet in a public restroom. And this happened at the Local Hospital, we had people who would, thered be a known HIV or an AIDS patient, and I had staff say, You, you cant use that. Theyd say, Wheres the bathroom? We dont have any bathrooms on this floor, you have to go down to the first floor. And Im like why did you tell the patient that? Well I dont, I use that bathroom down there, I dont want them to use it. Well, what about all the people who might have AIDS that are using that bathroom that you dont know about? If it bothers you that much, then wipe the seat off. Take some spray disinfectant and wipe the seat off if thats your problem, but you cant tell patients that they cant use the bathroomJust because you use that bathroom, you know? And they just look at you with this blank stare on their face. Stigma is challenging because it creates an insurmountable barrier for HIV linkage to care for many people with HIV Fear of rejection or being rejected because of the stigma influences decisions to engage anywhere in the HIV Care Trajectory. While HIV related stigma is prevalent throughout our s ociety, the impact of living in a small metropolitan or rural area can further increase feelings of stigma. Stigma and Rural or Small M etro politan A reas Confounding stigma is the geographical location of people with HIV in small metropolitan or rural areas. Stigma may be amplified if the person with HIV fears status disclosure due to limited choices of providers and support services. Friends and relatives may work in the offices providing care. Participants in this research identified issues related to privacy and confidentiality due to living in a small town or rural area and how the stigma of HIV impacted their decision to engage in HIV care. For example, one participant talked about the thought processes of someone newly diagnosed:
119 Interviewer: Esp ec ially when you just found out? Participant: Because you, you, you know, you, you gonna withdraw You know what Im saying? You all already put in your mind, Oh, hell, I dont want nobody to know Im sick. You know? People gonna talk about you again, especially when you think you [finger snap] was the shit on the streets. See what Im saying?...You know, you had it going on and all this here. Dont want anybody to know you sick. Hell, I mean, thats the real thing. You dont want nobody to know you sick. And another participant commented on the challenges of getting care in a rural area where people know each other. Participant: That's a smaller, a small little town and everybody knows everybody's business and a lot of people that's in that in that t own, they could have HIV and they wouldn't even know it because they're scared to go to the health department because of people that works there that knows everybody. It's like everybody knows everybody, where they work and basically, they might even tell you who's sleeping with who [laughter]. Interviewer: Yeah. So they the people they just don't trust the system there? Participant: Right. They don't trust the system. You said it. Bingo. Interviewer: And is that just because of the nature of the small town or Partic i pant: YesI'd say the nature of the town. Another participant, who was diagnosed in jail, decided when she was released she wanted to get into care. She describes how living in a small town and awareness of the delivery of HIV care impacted her decision. Participant: I had to think. Um, I had to get more information on how would me goin to the Health Department here in Local City how can I keep it from gettin out to the community Because you have the Health Department in Large Cit y 2 hours away They the Health Department that they have for HIV and AIDS people is just for those people. They have no more services goin on in that particular Health Department So, when I came home from t he jailhouse, I was likeis our Health Departm ent like that? At that point we had prenatal care, we had STDs, we had all other services there at the Health Department. So, I was like, Wow. Throughout your care at the Health Department, I noticed that you only go on two particular days.
120 Given t he social nature of stigma, living in areas with low populations and fewer choices for healthcare and related support services increases the challenges presented when someone begins the decision process to link to care. Feelings regarding being treated di fferently were similar to findings in other research regarding HIV related stigma in small areas Zukowski and Thorburn ( 2009 ) explored stigma and discrimination in a predominantly rural area in Oregon and differentiated their findings between the experiences in day to day life and experiences with providers. In their day to day lives, participants feared social rejection, differing rules of social contact, and being treated differently. They described their experiences with providers as feeling the providers were afraid of them, providers refused to care for them, or they were treated differently by providers. A study focusing on provider perspectives in a rural Midwestern town revealed four ways in which stigma impacted linkages to HIV services: staff of medical referral agencies stigmatizing clients; physicians stigmatizing clients; medical specialists stigmatizing clients; and client perceived stigma ( Yanessa, Reece, & Bastia, 2008) Similar to Yanessa, et al. (200 8), the community advisory board identified ways in which providers in Area 3/13 stigmatize their clients and interview participants shared experiences of perceived stigma. Stigma and M inorities Blacks have been disproportionately affected by HIV since the epidemic began ( Centers for Disease Control and Prevention, 2011) Stigma has been associated with negative attitudes towards the groups that are believed to be effected by HIV ( Parker & Aggleton, 2003) Participants spoke of how having HIV w as different if you were a member of a minority population, and research has shown stigma is greater for some
121 populations than others in regards to HIV ( Wilson, Wittlin, Munoz Laboy, & Parker, 2011) Participant: Family situations, weve got people who are afraid that their families are going to find out that theyre HIV positive even in this day and age. We have, um, uh, one person who I know of who, uh, basically hides their medicine because theyre afraid somebody will see it and then go Google their medication and find out its only used to treat HIVSo there is still a tremendous amount of lack of support, particularly in the black community. Lack of understanding, lack of understanding of transmission. This same client tells these horrendous stories about how some of the family comes to their house or they go there, they make them put paper on the toilet or something like that, you know? And another participant commented on his experiences with the transgender community and being black: Participant : And I still find some of that right now is that the transgender community is its although its part of the community, its not really part of the communi ty. Its like just there, and I I felt that way about the black community, because, you know, for some reason theres that stigmatism. We will not call any of our children crazy after or have mental problems, and Lord forbid we say that any of them are H IV positive. Thats just tabooYeah, yeah, because most transgender African American people, a lo t of them grew up in the church And we know the stance of the church on homosexuality, and we know the stance of the church on AIDS, and so, you know, its just one of those things thats kind of like, shh, its a wig, dont tell. When the people in someones social system perceives HIV negatively, fear of being stigmatized compounds the challenge of linking to HIV care. The reasons for the stigmatization of H IV are complex and often associated with the black community perceiving HIV as a disease more prevalent among homosexuals. In community supp ort group meetings, providers and consumers in the local community have indicated that a black man diagnosed with H IV is more stigmatized than if that same man goes to prison.
122 Stigma S ummary As presented in the data and evident in the literature, stigma exists throughout the Linkage to Care trajectory ( Parker & Aggleton, 2003) Research has indicated high levels of stigma are associated with poor self reported access to medical care ( Sayles, Wong, Kinsler, Martins, & Cunningham, 2009 ) Parker and Aggl eton ( 2003) thoroughly explore the concept of stigma and place stigma at the intersection of culture, power, and difference. They conclude that in order to fully understand the rol e stigma plays in HIV/AIDS, we must begin to address stigma as part of a social process and not from a behavioral or psychological stance. What are the Conditions that Influence Linkage to Care ? According to Schatzman, conditions facilitate, block, or shape actions or interactions within the chosen perspective (Kools, et al., 1996). Conditions regarding how participants defined and engaged in care, and the conflicting messages of care in the system impacted the decision process for linkage to care. Anticipatory guidance and improvements in the delivery of the diagnosis were suggested as a means to facilitate linkage to HIV care after diagnosis. Defining C are Multiple challenges exist in defining care status and defining HIV care may be a matter of perspective. Health Resources and Services Administration ( HRSA ) ( 2006) describes several ways of defining HIV care and acknowledges the fluidity of the concept of in HIV care Possible ways to define care include: Clinical measures (the most frequently used in the Linkage to Care literature) What qualifies as HIV care (medical visits, case manager visits, ancillary services)? Client needs and choices Self Reports can be accurate with clear definitions of time and services Disconnected data sources to monitor multiple care sources
123 The Engagement in Care Continuum (Table 11) was designed to take into account the complexities o f defining care, However, system practice still considers the clinical measure the dominant means of determining someones care status Participants talked about the fluidity of care and how they did not define themselves as being in care until they reac hed acceptance of their HIV diagnosis, even if they were attending appointments and following HRSA guidelines For example, one young woman interviewed met the conditions of being in care as defined by HRSA (regular attendance at HIV appointments and rout ine lab testing), and yet talked about how she had just entered care even though she had been receiving services for three y ears : Participant: And I was still out there doing what I wanted to do. I was still drinking, clubbing I was still having sex. U p until January of this year, I just came and said, Okay, this is this is real. Now Im ready to learn about whats going on with my body. And up until that, I still I was going through the motions. I was still going to my doctors appointment, because the la dy made the appointment for me. And I went to my first appointment and they did, you know, the process that they have to do when they draw your blood. And then you go to the doctor, and then they reschedule my appointment every three months. So I was going through the process because of how I was raisedyou have to go to the doctor to see about yourself. So I think my background of how I was raised has something to do with that as well. S o she made my appointment, and I continued to go to the doc tor, but inI was still in denial. I was still in denial, but I would still make sure Id go to my appointments. But I was just going through the motions of I was just going through the motions just just going Through the process of going through the mo tions, when the participant above was ready to fully engage in care according to her perception or definition of care, she was already receiving services in the HIV care system. How a patient defines care, and provider awareness of how they define care, are important facets of the linkage process. While affirming the clients perception, providers can share their perception of
124 care, and both can move towards mutual goals of care. When the provider can understand that the client is going through the moti ons, the provider may feel less frustrated that the client is not reaching the providers care goals through behavior change and adherence to antiretroviral therapy. Engaging in C are Hibbard, Stockard, Mahoney, & Tusler, ( 2004 ) identified 4 stages of engaging in the health care syst em: 1) believing the patient role is important, 2) having the confidence and knowledge to engage in health care, 3) actively taking action to improve health, and 4) staying active in the system, even during times of stress. It is interesting to note that none of these stages include a measureable lab value or clinical value, suggesting engagement in care goes beyond showing up at a doctors appointment and having lab values measured. Furthermore, in this study, the measures developed to determine engagement represented persons who had already entered the care process, but had varying levels of activation within the care process. Participants in this study were activated to enter into the health care system by a feeling of responsibility for someone else (a child or family member), or someone close to them urging them to move forward (family member, close friend, or health care system) For example, when one participant became pregnant, the health care system provided broker style case management (Table 21 ) to protect the child from vertical transmission. This added support often brought participants into the system, but did not necessarily keep them in the system. One participant commented on staying adherent to her medications throughout her pregnancy but stopping after her baby was born. Participant : I went to Local Area Health Care System I actually went and I stayed there the whole time. I mean, they put me on all these different medications and stuff like that but I stayed there the whole time.
125 Interviewer: How was that process? Participant : For the medication? Interviewer: The medication. Participant : Medication. It was all right because I was like in denial. I was still in denial. I took it due to the fact I was pregnant. To keep that baby from getting it, I took my medicine. Interviewer: How about when the baby was born? What did you decide to do then? Participant : When she was born I continued to take it for a while, then I stopped. Then I take it, then I stop. Its like an on/off switc h because it depends on what medication it is. Basically sometimes I just feel out of it, wont move, wont budge, stuff like that. Then be time I do go to the doctor and they check my T cells, theyre back, Oh, theyre too low. Then they switch medic ine again. Then, I even have it to wherecuz I can get sick at any time. A nother participant experienced a health care system initiated activation into care while she was in jail and pregnant. For her, the support she received from this activation helped her to stay in care. Participant: They didD epartment of C orrections, I don't even want to call it a jail, but they really help provide structure for me to say, this is your life (begins to cry ). This is your child's life (quiet pause while crying). W hen I got out, I mean everybody I got all the special attention, 'cause ev erybody want to see my baby and and it was good to know that people didn't look at me being ones that knew didn't look at me as somebody that had, that had a virus or a disease. They just want to say a person's going to have a baby. So after I got out, I stayed in contact with RW Case Manager and Jail Linkage Coordinator. And I've been on my meds ever since. I go through things. That's when I got involved with the Local Support Group at the health department. And I met the Regional Minority AIDS Coordinator, Local Support Group Leader Again, a common reason why people activate in care is because of a feeling of respons ibility for someone else. For example, one participant talked about her daughter and her choice to seek care: Participant: S o Im just ready to deal with it. I wanted to find out what was going on with my body. I wanted to find out what this virus is and how can I maintain a healthy body. How can I maintain a healthy life? Because I
126 have an 11year old daughter and this year she just entered middle school. So I want to live aroundI want to be around for my child. Identifying ways to activate someone in care is an important strategy for programs devoted to linking persons with HIV to care. System programs exist that assist people into care such as jail and pregnancy programs. However, pregnancy programs are not universally accessed. For example, in Area 3/13, if someone receives their first diagnosis when they are pregnant, the county health department will offer services to prevent vertical transmission. If someone is already receiving HIV care or nonHIV care and becomes pregnant, getting services is more complicated ( Davis, 2013) Conducting a comprehensive assessment of the person with HIV may help identify possible motivators to help activate someone in care. For example, a c lient may feel responsibility towards a child and that feeling of responsibility can be used to help motivate them towards engagement in care in order to be able to care for the child. Conflicting Messages of C are Participants sometimes identified receipt of mixed signals from various health care providers. Some participants received the emotional support they needed to enter care, but once at the providers office, were told there was nothing that could be done at that time. For example, one participant decided to make an appointment to enter care and, once at the clinic office, was confused by the message he received from the provider. Participant: He says, well, he says, everythi ng with you is clear. He said, your viral counts are high. Youre not l ow enough to even start taking medication right now, so basically, theres nothing we can do for you. ..So that was another blow. It was, like, okay. Hold on a minute. Ive finally got myself up the nerve to come and get tested again to see if I can get some help, and now you wanna tell me I cant receive help because Im not sick enough? And I I took it the wrong way and just startedI became rebellious. Like, what kinda mess is this? How are you gonna say
127 youre gonna help me, and then I come and take a test and and then now youre telling me Im not sick enough? What you want you want me to be sick before I can get some help? And so I kinda took it the bad way, and I went and talked to one of the counselors there who I had met who I had, who I h ad connected well with. This participant was confused by receiving messages to enter care from the person providing the counseling and testing, and then going to the provider and hearing there was nothing that could be done. As noted in the case management section of the literature review, fragmentation in health care is a challenge to care delivery and often results in poor communication between providers ( U.S. Department of Health and Human Services, 2008 ) Ce ntral Need throughout Trajectory: Support As d efined by the Oxford English Dictionary ( 2013b) support means, the action or an act of helping a person or a thing to hold fir m or not to give way. While the definition seems simple, support is a complex term with many dimensions formal, informal, social, physical, emotional, cognitive, tangible, etc. Support began was a central theme early in the coding. The type of support, the timing of support, and who delivered the support seemed to have an important impact on the participants perception of the care process and their recommendations about what is needed in the care trajectory. Types of support predominant in the results were emotional and cognitive support. When tangible support was mentioned, it was more in terms of learning where to get services i.e. informational support Participants commented that support was needed through the entire HIV care trajectory. However, when asked to think about the types of support and when support should be delivered, most said that emotional support at diagnosis was critical. For example, a participant who was
128 diagnosed over 25 years ago and worked for years with people newly diagnosed commented on the need for emotional support at diagnosis. Participant : That care is available, theyre not alone. F irst of all theyre not alone. Theres other people out there like them There is treatment available, even if they cant afford it And theres probably people who have been through some similar experiences that theyre going through. The participant stressed the importance of letting the person with HIV know they are not alone, an d there are others going through similar experiences. The stigmatization of HIV leads some people to believe they are going to be alone. Another participant talked about the need for immediate emotional support before other types of support were deliver ed. Participant : No, thats when you really need emotional support; it is diagnosis when youve been diagnosed. Because when youve been diagnosed, I mean somebody come and tell you something, but like I say for instance, if a friend of mine went, and th ey had HIV tested, and they come to me, and they be like, Im afraid to go find out what my results is. I need you to go I want you to go with me for support. Of course, Im gonna go, because I know how it was for me when I found out With me, it was I wa s more concerned with my life, and how I was gonna deal with this, and how I was gonna tell tell my family, and how my family was gonna accept me now, and how Im gonna live with it. What was surprising was how participants did not want to learn about the technical /medical aspects of HIV such as viral loads, CD4 counts, and Antiretroviral Therapy, which is the type of information many providers provide when delivering test results. The preference for who delivered the support varied among participants. Some strongly felt the initial support should come from a peer (with HIV) in order to alleviate the anxiety related to disclosure. Others felt it was not necessarily about who was delivering the support, but instead, what was more important was how the s upport was
129 delivered. One male participant who went directly into care after diagnosis shared the following: Participant : I thi nk it would be great. Y ou just start right off the bat. I mean what really gets what really gets it started is a smileAnd it's the personality and how you talk to the person. You don't want to talk to them aggressively you need to do this and you need to take this and you need tothat doesn't get it. In his experiences, the providers he encountered in the transition from di agnosis to care showed support through kindness and understanding. For example, Participant: I mean because they treated me real nice. And, I mean they knew what my symptom was. They knew, I guess it was my personality, how I would, you know, talk to t hem and how I would treat them and it's just like, I never gotten an ugly responseOut of the whole eight years, I never gotten an ugly responseSo it wasimmediately started talking to me and everything and they understood my situation. And once I unders tood a person knows my situation and how they respond to me, then I can respond to them back in that same tone now, in that same tone. For him, the supportive environment contributed to linking to HIV care. However, a supportive environment may not always be present, such as with the new home HIV test kits. Another participant commented: Participant : Thats dangerous. You dont know how a persons mind is gonna perceive this but if its someone thats living with this. Okay, I see somebody right there j ust told I just went to the doctor finding I was HIV positive. I feel that doctor should say well let me let you talk to somebody that understands where you are right now. And take me, walk me to the peer as living with this, introduce me and let them know okay this person here has just been diagnosed. And Im bringing you to this person here because they understand because theyre living with it. [Coughing] And if the person thats the peer never gave, came, came, opened up and said that theyre pos itive they dont need to be there. The provision of support was clearly an important theme brought up by participants. They felt the receipt of support led to better outcomes and lack of support led to poor outcomes. While all types of support were important, emotional support delivered at
130 diagnosis was the most salient. Other specific types of support were discovered in the interviews (i.e., counseling, navigation) and will be discussed more in the next sections. The Process of Linking to HIV Care and Decision Points of Linkage HIV Diagnosis Participants in this research received their HIV diagnoses in a variety of settings including the local county health department, substance use and physical rehabilitation facilities, jail, primary care physicians offices, and obstetrics and gynecology offices. Some were aware they were being tested for HIV while others were tested because of institutional policies. Participants mentioned that improvements could be made to help people transition to HIV care by ev aluating the way the diagnosis was delivered and improving the lack of direction after diagnosis. There is limited evidence evaluating the quality and delivery of counseling and testing services, and attention to the provider role in the delivery of these services is in much need of future study ( Obermeyer & Osborn, 2007) Participants in the ARTAS study completed a questionnaire about their perceptions of counseling and testing services. The perception by 27% of the sample was that the counselor did not spend enough time with them, and 21% said the counselor failed to answer all of their questions. Participants were more likely to indicate inadequate time spent or questions were not answered if the testing took place in an emergency room/hospital, private setting, or jail ( Rudy et al., 2005) Participants in this research identified a need for anticipatory guidance and improved diagnosis delivery to pro mote linkage to care at the diagnosis point in the model.
131 Anticipatory guidance Participants described a need for anticipatory guidance, an intervention frequently utilized in the pediatric discipline to guide parents with practical information about potential challenges and impending changes ( Titley, 2006) Participants in this study talked about the need to be informed of the process ahead, such as what to expect in the next few days, what the clinic visit would be like, and how it was going to feel to adjust to the news. The earlier participant, who described the conflicting message of care, went on to describe what he thought was needed to help him understand the process. Participant : So I went and talked to him (prevention counselor), and he explained to me what was going on and he called them (provider), and he (provider) says, Well, Im sorry that happened. He said, Well, whats gonna happen now, he said, they are gonna set you up with a case manager. as you go throug h the rest of the process, theyll get you started and get you in where you can get receive help. And he said, Take it easy. Just come back and keep getting checked out and make sure everythings fine. He said, Right now, we cant provide you any as sistance medically until you are at a certain pointHe said thats just the way our system runs. And I I just dont understand that. What was my purpose of even coming here to get tested if I cant get help now. And thats just the way I saw it. And so when that happened, I left himI called Another participant and told Another participant and then he tried to call and schedule me for another appointment, cause they wouldnt do it when I called I called a few times, and they didnt even return my c all back, so I guess they kinda felt like I didnt want the help, and the truth was that I just didnt I truly did not understand. It was shocking. As he stated, he felt like he did not understand the process of entering HIV care because it had not been explained to him after he was diagnosed. He was angry and confused about the situation and felt they did not want him there. Fortunately, he was able to contact a family member (with HIV) for guidance. Other participants also commented about how they needed to have an understanding of what were the next steps in relation to their care. Study participants believed that providers often assumed
132 that persons with HIV automatically knew the process and assumed participants had a high degree of health literacy. Furthermore, patients were often too upset about hearing they had HIV to process complex directions about seeking care. Anticipatory guidance can begin at diagnosis and be reinforced by all providers a patient encounters in the system to help maximiz e the chances of linking someone into care. Diagnosis d elivery The advisory board members brought up the diagnosis delivery during the meeting and in the individual interviews. Some participants reflected on the way they were told and others on how they wish they had been told. For example: Participant: The most I say, support, andand having the person thats gonna tell it to you be sensitive and caring enough not to just blurt it out. Oh, you got HIV. You know, thats not nowhere near thats not no way to do it. Another participant was told of her HIV status when she went for a prenatal visit. At the time, she did not have any suspicion that she was HIV positive. She commented: Participant: When I was diagnosed with it when I was diagnosed with it, it was when I was pregnant with my child. When they did the blood work or whatever at the doctor when I went back in it was like, oh, we cant see you here anymore. Im like, Why? No, I was actually shocked, to be honest with you. I was shocked. Wh en they told me that I wasnt that far along when they told me but it shocked me to where I actually you know how you think you like in a dream or something? Its like okay; I went straight to the bottle cuz Im I cant believe this. I think I drunk that whole bottle. It was real confusing cuz Im like how that so? I just had a child (a few years earlier). And another participant spoke of feeling judged when he received his diagnosis: Participant: Well, when I was given my results, the person that gave em to me knew that I was employed and just gave me the results, and was nas ty and sent me on my way. H is remark to me was, Whatev er behavior you were doing that got yougot yourself in this trouble, you need to stop now. This is in fron t of my aunt. And then he said then his next comment was, Now, when you came to me and did your test, you wrote that if you were tested positive, you would kill yourself. Do you intend to? I said, No. He said, Okay, good. And I left.
133 For people with HIV who h ave little experience with the health care system, negative experiences during diagnosis can influence the decision to link to care. It is not surprising that if someone is scolded for a behavior at diagnosis and they already feel discomfort getting care due to stigma, it may impact their decision to not return to care. Garland, et al. ( 2011) interviewed people with HIV who had never received medical care and asked them what could have been done differently. Most participants in t hat study were dissatisfied with their counseling and testing experience and said they needed more support, including counseling and active linkage. Grief or Crisis Response Grief is a response to an anticipated or perceived loss and most often associated with the death of someone close ( Mallinson, 2013) When HIV was first emerging as an epidemic, and before antiretroviral treatment, there was a loss and grief component associated with the disease as partners died. However, grief responses can also be associated with the diagnosis of a chronic illness since the person perceives a loss from not being able to fully return to their formal lifestyle or function ( Sidell, 1997) A crisis is a temporary alteration or disruption in a persons normal ways of coping and can be experienced as a result of rec eiving bad news such as an HIV diagnosis ( Lewis & Lewis, 1989) Consequences of a grief response to a chronic illness diagnosis are similar to the crisis response, and are the result of a feeling of threat or disruption to normal function ( Sidell, 1997) Reactions to a diagnosis of a chronic illness may include depressi on, alienation, withdrawal, anxiety, abandonment, etc. ( Sidell, 1997) All participants in this research described a crisis and/or grief response after they were told the results of their HIV test. Their responses included feelings of anger, denial, disbelief and fear. Participants also stated they felt dirty, numb, hurt and
134 overwhelmed. Even participants who knew they were most likely positive because of an infected partner experienced a crisis response after confirmation of the diagnosis. Behaviorally, participants said they withdrew, continued or initiated risky behaviors, gave up living (passive suicidal ideation), and ran away. The tone of one participants description of the situation resonated throughout the interviews: Participant: With me it was devastating. It was heartbreaking. Like I said, I screamed. I hollered. I told the doctor to get out of my room. I didnt want to see him. I did it all. Another participant described the grief response and agreed that grief was an accurate description of her response to being diagnosed. Participant : I think it should be for everyone, because everybody's gonna go through all the emotions. You're gonna go through depression. You're gonna go through anger. You're gonna go through not accepting it, disbelief, all of it, until you come to terms. Then, once you come to terms with what's really goin on, you're willing to let go and let God. Interviewer: The words you were just using sound very familiar to a grief response. Participant : Yeah. Interviewer: Do you think that that is explains how you were feeling? Participant : Yeah. Grief. Interviewer: What are you grieving? Participant : Oh, just knowin that my life will be cut short because of this. That's something that is hard to grab onto. To grasp. But I figured I don't know I figured it's like with God, I have good closeness with God, and I think when your time's up, your time is up. This participant described feelings of depression, denial, and shock. However, she talked about having s upport through her family and spiritual foundation, as well as encouragement and referral from her provider to attend support groups, and assistance to work through her grief response and move into acceptance and HIV care. At the end of the interview she stated:
135 Participant: Yeah. It's wonderful. I'm just happy about it. I'm not happy that I have it, but I'm happy that I've come this far. I've seen a lot of changes in my life, and it just is wonderful. I've become a stronger person. However, other par ticipants withdrew, continued or initiated risky behaviors, gave up living (passive suicidal ideation) and ran away. One participant described her experience, stating that she liked drugs and that she ended up leaving the rehabilitation facility where she was diagnosed. Participant: To be honest, I liked it (drugs). And, um, I end ed up walking away from the place and when I walked away from the place I walked to the streets because theres nowhere. I, I couldve went homeI didnt and the drugs just, they just seemed to be the filler for that moment And it was easy to just fall into that loop and just be numb. Because I didnt wanna feel. It was too much pain, pain was coming from every angle. I didnt they didnt give me a therapist to talk to She spent 13 years on the streets, in and out of rehabilitation centers, before being able to overcome her grief and enter care through support from her church and a therapist that took time with me. Several participants interviewed knew they were probably HIV positive before they took the test. Their responses also included elements of crisis/grief. For example, one participants partner was diagnosed with AIDS and since they had been together for many years, he knew he probably had it and said he delayed testing because he felt he could not deal with a positive diagnosis at the time. As he reflected on the time when he finally found out, he responded: Participant: So when I when I got that, I thought, Oh, boy, here we go.And then a couple of rashes. I didnt know, but I suspected. I thought, Oh, wow. Not at first, with the thrush. I thought, Oh maybe, I [laughter] thinking, Oh, maybe it could be something.You know, I have allergies...There are a lot of trees here. I do take, uh, allergy medicine, so I thought, Oh, maybe its that. But when I started to get a little bit of rash on my legs and on my arm, I thought, Uhoh, something is bothering me here environmentally, and the reason why its bothering me is because my
136 immune system must be suppressed, so you better need to check this out, and thats what I did. Interviewer: So what was it like to find out for sure? Participant: Devastating. Interviewer: Even though you suspected it? Participant: Yeah. Yeah, it sure was. And another subject, diagnosed 20 years ago, w hose partner was positive, also suspected he might also be infected. He commented on how it felt to definitively know he was positive: Participant : So, yeah it put a, it put a knot in my stomach and scared the shit out of m e. But after that I got over it pretty quickly andbecause there wasnt anything I could do about it. As a person works through the crisis or grief period, he or she comes to a decision point about whether to engage in HIV care. Successful resolution of the grief/crisis period tended to move people towards HIV care. Participants were asked what they thought our system could do to facilitate entry into care and responded with concepts about transition and ideas for facilitating transition, including navig ation and counseling. Maintaining c onnection through the t ransition A transition is described as a process of change or movement from one condition to another and an HIV diagnosis represents a transition into wellness ( Oxford University Press, 2013c ) Participants felt like the crisis period follo wing diagnosis was overwhelming and maintaining a connection (contact) through this transition was important for linkage to care. One participant provided her perspective on how people with HIV would end up at the point of delaying HIV care if connection was not maintained.
137 Participant: Yeah, because I think at that point in time (resolution) that you can really, youll catch that person. Youll catch that person and be able to really help them get on the right trackBefore they get lost. Because they will get lost. You dont want em to get lost, you want to be able to keep connected to em. You want it because, I know I got lostBecause you dont really have anything to connect to once they tell you youre positive. They might tell you to go to the health department. What? Who? This participant recognized the challenges of linking to care due to unfamiliarity with services and a feeling of being lost in the system She felt maintaining contact with health care providers or prevention counselor s was important in keeping people moving towards care. Another participant had similar comments about connection: Participant: That way, they can call me and say Hey, Mr. [participants name] This is so andso. I remember you came and saw us at the health department, but we were just calling, just check in on you, and we havent seen you in a couple of months. You want, you know, you wanna set an appointment to come back in and and and see where youre at now? Someone to kinda monitor you and kinda keep you wanting to come back and still get checked, but cause, see, once you gonna find out and they tell you, okay, youre fine y and you get like, I get busy with things, and I kinda just g I keep going, okay, all right. They said Im fine. Im not gonna worry about it. Oh, they said I was okay. Ill Ill go in a couple of months And I dont know what can happen in those couple of months. Some in those couple of months, something can happen to me and I can get just sick as I dont know what, and because I didnt have someone, you know, checking in to let me hey, Mr. [participants name]. Were not calling to aggravate you, just calling to see how youre doing, if see if you wanted to schedule another appointment. When HIV care providers call to inquire about how the person with HIV is doing and ask to schedule an appointment it convey a message of caring and offers an opportunity for Linkage to Care. Most participants described a need for active connection from the health care system during this transition tim e meaning they did not want to only feel the connectedness when they chose to engage in care. They wanted representatives
138 from the healthcare system to actively reach out and connect with clients who may have been lost to follow up. Partici pant : I think the physician, the health care community needs to work with patients D ont just tell them theyre positive, you need to go seek treatment, heres an appointment card; go talk to these people. You need to have some follow up, nurses need to call the patient T ransition them into and be supportive during that transition period and dont let them fall through the cracks. And in this day and age with cost of health care a nd the stresses on the heal th care system people easily fall thro ugh the cracks. I guess they need support from the very timeeven before they get tested, especially if they have risk factors. Even before they get tested you need to start that transition in case they are positiveNow if you are positive, this is what well do, blah, blah, blah. And let them start thinking about it. And you do have some risk factors, you know, for this. And, uh, therefore if you do turn up positive then we need to think about how to get you into treatment and lets talk about some of the ways we could do that, right there. Even maybe even before testing. If they have risk factors. There is literature supporting the concept of connec tion to transition people to HIV care. Participants in a study by Mallinson, et al. ( 2005) identified connectedness as important for engagement in HIV c are and patients who had a perceived personal connection with staff were able to transition into care. Similarly, Rajabiun, et al. ( 2007) found that when program staff facilitated communication between patients and doctors or sent appointment reminders, patients said it felt like someone cared and helped them stay in care. Navigation As stated in the literature review, system navigation and peer navigation are interventions for linkage to care that have yielded positive outcomes (Bradford et al., 2007; Hal lum Montes et al., 2013) Participants in this research commented on navigation after diagnosis and the importance of havi ng someone to help them through the crisis into care. While some said anyone caring and compassionate would be able to provide system navigation, most said they felt like it should come from a peer, i.e.,
139 someone with HIV, immediately after diagnosis, since they had a better understanding of what it was like to be diagnosed and live with HIV. For example: Participant: Okay, you get diagnosed, dont leave me there to figure it out, to understand because now Im in a state of mind where I dont know what to do. Okay, thats when you need to take my hand to help, to guide me to the point where I know I need to get into care. I know that how important it is to get into care and I need to know someone like meBecause youre not the person I want to talk to, y ou aint HIV positiveYou dont understand what Im going through. I need someone thats dealing with what Im dealing with, that understands, thats compassionate but strong. I dont need someone to s you know, thats not, not gonna put me on the righ t track Or to make me feel like I, Im not strong enough to stand up, uh, on my own two feet. But I need your compassion as well but I need to understand how important that I do the things I need to do to stay healthy. So you dont want someone thats gonna hold your hand and lead you around. You want someone thats gonna put you in the position where you can take care of you the way you need to be taken care of. Interviewer: But you need somebody to give you those tools. Participant : Yeah. So the tools will come from someone thats dealing with this, thats living with it, thats doing the things theyre supposed to do. HIV Linkage to Care in Florida consists of passive referrals which are made when someone is diagnosed. In the practice setting, staff have commented that people with HIV need to take responsibility for their own care. While this may be true in some situations, the woman above identifies the gap in the logic. As she explains, someone newly diagnosed may not have the knowledge or abilit y (tools) to navigate into HIV care. She also explains how someone with HIV who is already linked into care ( i.e. a peer) can help the navigation process better than others because they understand the challenges of living with HIV day to day. Finally, she feels providers need to go beyond holding someones hand and telling them where to go. Once the initial crisis of the diagnosis is resolved, it is necessary to teach people how to advocate for themselves as they enter HIV care. Mallinson, et al. ( 2005 ) found the ability to navigate and
140 understand the complexities of HIV care influenced health literacy and subsequent engag ement in HIV care. Counseling At a recent Ryan White Care Consortium meeting, a representative from a local mental health agency came to the meeting to share services available for HIV patients. The consumers in the meeting were so passionate about the topic that we had to delay some topics until the next meeting so we could adequately address mental health support. Patients shared many ways in which counseling helped them decide to enter care. For example, one participant who delayed care and later received counseling stated she needed counseling at diagnosis. Participant: I feel that they should have had counseling available. I felt like they should have had more people to come and just cuz I was in a total wreck. Often, as subjects thought about what they would tell someone newly diagnosed, they brought up counseling. One participant who delayed care, and continued with a risky lifestyle for many years, said what assisted him onto HIV care was counseling. When asked what he would tell someone newly diagnosed, he responded: Participant : I would tell them, Id say, Listen, its not as bad as you think it is. You know, um, like I said, I could sit down and tell you my story, if that would help you. We can sit down and we can do that. But, my advice is, I know youre going through some stuff, its best to get yourself some counseling, man. Listen and talk with your doctors. If you can get around people that are positive and doing positive things, you can see the difference. Its not bad as we take it to be. Its just a disease. Its justand they got so much good medication now till you may outlive, you know, your brother. You know, I actually would really give them some good information to motivate them to lift their head up. Call me anytime if you need me. If you need me, call me. Offering counseling services may help people effectively work through the grief/crisis period that results from an HIV diagnosis. Joseph, et al., ( 2011) found
141 participants from focus groups wanted to be linked immediately to ongoing mental health services. However, not everyone diagnosed with HIV will want counseling. Like H IV, mental health services carry a stigma in our society. Assessment at diagnosis is needed in order to determine if counseling services are desired and appropriate. Resolution (Re Appraisal): The Decision Point of HIV Care With varying amounts of time, all participants came to a decision point about whether they would begin HIV care or they would delay care. When asked what factors helped them decide, it was discovered that the decision was not always a choice. The decision to enter care may have been i nfluenced by an external conditi on (see Engaging (or Activation) above, such as pregnancy or a feeling of responsibility towards someone else. Some moved into care because this was the way theyd been raised, while others sought care because of a feeling of responsibility for someone else. However, coming to terms with the HIV diagnosis helped people make the decision to engage in HIV care and work towards acceptance. For example, one participant commented: Participant : Its just like one of the steps w ith the twelve step program With twelve steps. When you accept that you have it, you can move on. You can start gettin the care that you need, youll start I mean, its like basically livin a normal life But you have to accept what you have first. If you cant accept it, then you gonna be depressed, you gonna be sad You gonna be angry. And with me Youll stay in that space (of delayed or intermittent care) This participant compared the decision to her experiences with substance use treatment. In 12step programs, in order to move away from dysfunctional behaviors, one has to accept that he/she has a problem ( Alchoholics Anonymous, 2013) She went on to describe how people would begin to experience a physical health decline, and would count, your CD4, your um, viral load, all of that, if they chose to delay care.
142 While the resolution (re)appraisal point is the critical decision point in this model, it is also complex. Many personal, community, and system factors can influence this decision but it is different for each person. For most, the decision is not a clearly defined point. Instead it is a part of the process in the trajectory. Recommendations to influence the decision therefore happen at other points in the system such as at diagnosis, dur ing crisis and grief, and during HIV care (discussed next). HIV Care As described in the section above concerning conditions influencing linkage, defining HIV care is a challenge. Participants in this research had varying views of what being in care meant Some told me they were not in care, yet later in the interview they would reveal that they attended care but did not like it. Or they would tell me they just entered care, but later admitted they had regularly attended all of their HIV appointments for years. What seemed important about those who considered themselves in care was that they had come to terms with their diagnosis, and this led to acceptance, change in poor preventive health behaviors, or an engagement with the system to help identify when the need for more serious engagement in the system was needed (i.e., the initiation of Antiretroviral Therapy to achieve viral suppression and maintain CD4 counts). HIV care is considered the outcome of this process model even though it is not necessari ly the outcome of the linkage to care trajectory as defined by the health care system. People with HIV, who had made it to this point in the model, described steps necessary to stay in care once introduced. These recommendations included a holistic under standing beyond the patient role, and the initiation of shareddecision making.
143 Holistic u nderstanding beyond the patient A holistic approach to care looks beyond a persons diagnosis and attempts to understand the whole patient their physical, mental, social, and spiritual health. In other words, an attempt is made to understand living conditions, values, spi ritual needs, relationships, and anything about a patient that may influence health and quality of life. Failure to understand the patient from a holistic perspective can hinder engagement or continued adherence to care. For example, one participant talked about the delivery system at a providers office and the challenges of keeping her appointments due to child care issues. She thought that pr oviders office was her only choice for care, but asked for alternatives. She commented: Participant: Basically if your appointment is like 10:00You actually be there until about 4:00, 5:00, yeah...Okay. I have kids. I cant do that Then I end up swit ching up to go to [ Local Area Health Care System ] They (Health Department) used to make it sound like I couldnt go no other place but the Health Department I s there anywhere else I can go? No. I didnt have a choice of where to go. I had to go to the H ealth Department. Then, later on down the line let me tell you how I found out [ Local Area Health Care System ]. I do the program. Ryan White. Ive seen him for the first time and the case manager was talking to me, explain to me about the about the medicine and stuff and how it works and showed me a little diagram and stuff like that. T alked to me. Y ou know theres other places you can go, right? Im like no, cuz every time I ask nobody answers that. Thats why I been coming here and then thats when she told me about [ Local Area Health Care System ] She was the one that actually scheduled an appointment through them and told them to follow up with them and thats what I did. In the interview she described being a very active person and did not like to take the antiretroviral medications because the medicine made her feel sick to her stomach and that made her stay in bed all day. She wanted a way to be in care that did not make her feel sick and she felt like the providers did not understand. Participant : Basically they said I should have full blown AIDS. Basically they said I should be in the hospital bed sick, about to die, whatever. Thats how they
144 tried to explain it to me. Well me, personally, Im here for a reason. I said I have kids, but Im here for a reason. I said cuz some of that medication, it makes me sick on the stomach. Im not gonna take something if it make me sick on the stomach; thats why I take cuz I have like maybe 13 pills to take. In the interview she described being a very active person and did not like feeling sick to her stomach because that made her stay in bed all day. She wanted a way to be in care that did not make her feel sick and she felt like the providers did not understand. At the end of an interview another participant summarized the importance of comprehending m ore than the biological patient and of the necessity for understanding the entire patient. Participant : But as a team with you working from different angles coming from the University of Flo rida, t he study that youre doing is going back out in the community for the doctors and everything. And they will be able to come up with a plan to really, really, really reach patients where they are Because thats the most important thing. I mean we c an only do so much. But with the patients, the doctors dont really understand where they ar e, they cant really help them I mean if you dont know me in a different, in a ca, in a different spot. I mean you can come in there and examine me and stuff like that and but theres a whole nother side of me andthat you dont really get to know. Then you cant really help me totally Part of the care is not gonna be there. She came to terms with her diagnosis and works with others in the community to be self ad vocates. However, she was interested in this research study because she saw the need to help providers understand there is more to the person than HIV. Finally, one other participant described the need for providers to understand the entire patient by co mparing the relationship to that of a cosmetologist. Participant : Oh, I think the biggest thing that the health care system needs to do is to always try to put a human face on the person that theyre working with. It just cant always be words, and standards, and procedures. It has to be a human faceWell, for example, Im a hairdresser. And a cosmetologistAnd if you were getting married, I cant just talk to you on the phone and figure out what youre going to do. Im going to actually
145 have to put a human face to you to figure out what hairstyles gonna look good onwhat colors gonna look good on you. And Im saying that you just cant sit me in an office in a cubicle and tell me that I gotta do this, I gotta do that, I gotta do this all right, don e next...Because Im just Im either a guinea pig or an object that youre working on; Im not a human. And its not just these people, its the churches its society. You have to put a human human face to to a disease like this because of all the stig matism that goes with it. You have to put a human face to it. If not, the stigmatism never goes away. The hatred never goes away. The fear never goes away. T he humility never goes away. You j ust never get over it. You begin to feel like people are a lways gonna be against you. For this participant, putting a human face to HIV will help promote understanding of the entire patient. Decision m aking Shared decisionmaking was identified as an important method by which the healthcare system helped people w ith HIV enter care. One participant thought it should begin early, but go slowly, with the patient when deciding on care options. He stated: Participant : Yes, its, its internal and secondly I think people need support in coming to grips with it. Cert ainly you dont tell somebody theyre HIV positive and, uh, okay you gotta start, you know, wearing condoms and we need to test you for all this other stuff, uh, here come back in, um, you know, lets, lets get some blood and, and, uh, see where youre at You probably need to go slowly into that. Patience, its like timing of when you gotta start treatment Patients have to decide when they want to start treatment and theres Im not sure that theres that many up. I, I think the standard now is as soon as you find out youre positive, the earlier the treatment the better. This participant understood that immediate initiation of antiretroviral therapy is the standard of care for pe ople newly diagnosed with HIV. However, the standard does not take into c onsideration the individual circumstances of the patient, such as readiness, goals, and choice. Choice is important to some participants who may seek or are seeking HIV care.
146 For example, another participant commented how shared decisionmaking was most important to him for linkage to care (and continued engagement in care). Participant: T he m ost helpful thing is that I have to have a physician that allows me to do my health input And I dont want somebody thats just, oh, if you dont do this, youre gonna do that, blah, blah, blah, blah, blah. You know? M ore a more relaxed physician that is willing to listen to you, and not just blurt out things to you. There has been a tendency in the US health care system to treat clients from a biomedical perspective and focus only on medical needs ( Boyer & Indyk, 2006) The participants above described the need for providers to treat them beyond a diagnosis. Shared decisionmaking and understanding the holistic patient are two key features in the delivery of patient centered care, which will be discussed in the next chapter. Delay or Intermittent Care Much research has been conducted on barriers associated with linkage to care for people newly diagnosed with HIV (see Figure 35). People who were unable to successfully resolve the crisis/grief process or (re)appraisal from a pivotal event (discussed below) entered into delayed or intermittent care. Examples of behavioral outcomes of the crisis/process without perceived support included a return to a risky lifestyle, anger, passive suicidal ideation, and a refrain from engagement in health care for HIV. Many participants who did not enter care immediately after a diagnosis described this point in the model as being in denial. The time people would stay at this point in the model varied among persons with HIV and depended on many ecological factors influencing the outcome, including stigma, access to care/services, substance use, mental health issues, and perception of illness. When probed about what helped them out of this phase, many participants described pivotal events. Another participant discussed what he thought happens at the decision point.
147 Participant : Two things. Either youre smart enough to read up on it, and try to educate your self. Or youre smart enough to go to someone else to get help. But theyrethats the first thing. The second thing is that you are still so afraid of getting that help, and being stigmatized, that you just dont care. So then you go here (points to d elay of care on early model). People who end up at this point in the model are at risk for poorer health outcomes from HIV and also increase the risk to the population through the spread to others. We need to recognize the complex social issues that influ ence the decision to not seek care, or the failure to make a decision about care. Pivotal Events Participants in this research reflected on events that took place in their lives that led them to reappraise their circumstances. During analysis, as I began to identify this concept in the interviews, I defined it as a sentinel event, similar to a sentinel event in a hospital. With further thought, however, I realized sentinel event was often associated with death. The word pivotal means being that on which anything turns or depends; central, crucial, vital ( Oxford University Press, 2013a) I chose the term pivotal event to represent the point at which a participant made a decision to seek care since they described the event as vital to someones decision to link to care. The pivotal event led to a reappraisal of the participants situation and a subsequent response in the form of crisis or crisis resolution. For instance, some patients may arrive at the decision to seek care because of a pregnancy, or a spiritual awakening, while others may find the pivotal event begins with their actual diagnosis. If the response was crisis resolution, the participant was able to move towards becoming fully engaged in care (Figure 51). The pivotal event differed in timing, scope, and substance for each participant. One participant who struggled with addiction after learning she was HIV positive in a physical rehabilitation facility described her realization of a broken pact with God.
148 Participant: Its like this aura comes over me and I go and I cry to the Lord and I knew, I said, Well you know I ve tried everything and I always come back to this point and I cant do it. And I say, If youre real, if everything in the Holy Bible is true, and you are who you say you are. I said, Well you set me free. I as ked Him and Im on my, Im, Im bawling and Im bawling and Im bawling, Im about to bawl now Is that the way He engulfed me and, He, I know Hes so real because He set me free right then and there. Havent picked up drugs since, its been over 19 years ago.. ..And I asked H im, I said just take the desire away Dont just set me free, take the desire and, H e did, and I tell you I dont know what H e did to me, I went He, H e took my body through something its like junk that wa s in me was coming up and out And I cried in a way Ive never cried again since, and it was one of those snot, ev erything thats in you comin. .. Now one of those cries that you really Yeah, a total release, a total release. And I knew when it was over I was, I was, I was free. ..I, I knew I was free. And it s so weird the way H e did it because my, my, my sons brother in law goes to this church. He plays the guitar in church. And then this voice in my headAn d then he comes walkin by and H e says, Ask him can you go to church wi th him in the morning. I dont want to do that. And but I couldnt help myself And then he says, You want to go to church in the morning? and I said, Yeah. H e said, Yeah you can ride with me in t he morning. And its like t H e woke me up early t hat morning and Im s Im gung ho to go, and I, Ive got this happiness about me that I cant explain. And Im gung ho to go to church And I sat way in the back of the church But theres a n alter call and He speaks to me againAnd H e wants me to come up there. Now Im in the back of the church. I gotta pass everybody, I dont want to go up thereBut H e tells m e to go and to give my life to H im. And so I get up and I do, Im not, Im not getting up but Im getting up, but Im telling myself Im not getting up but Im getting Right, and Im getting up anyway and Im going up there and when I get up there all I could say is, I want to be saved and then its like I just go to bawling and then everybody goes the church just erupts. People are just praising God and Im in a world, I dont even know where Im at. God has taken me somewhere that is so much From this event, she was drawn towards returning to church where she met prayer partners that began to show her another lifestyle that did not involv e drugs and alcohol. Her spiritual family introduced her to support activities at the health department and she met other people who were comfortable with their diagnosis. During these interactions, she met people who were not afraid of her because she had HIV and learned to accept her diagnosis and engage in regular care.
149 Another participant talked about how her pregnancy brought her back to care: Participant: But his dad and I had a wild night. We had been drinking. And when I found out I was feeling real ill. And my cycle still came on, but I feel real ill and I went to the doctor and I found out I was pregnant. And I panicked. I panicked, I panicked, I panicked. By that time, I had a warrant for my arrest. I got arrested. That's when I got involved with RW Case Manager and Jail Linkage Coordinator They were like, "You want to take these meds. You're going to have a healthy baby." They stayed on me, they stayed on me and I love them to this day. And it made me feel better about myself. I had to be for me to deal with this, I had to be in structure to stay focused (begins to cry). Both of these participants had reached low points in their lives. The pivotal events brought them into a care environment where they received the acceptance and support they needed to engage in regular HIV care. In addition to changing the course of HIV care for people who delayed care, pivotal events also changed the care trajectory for some who identified themselves as in care. For example, one participant described his reaction the first years after receiving an HIV diagnosis as accepting, but then had a religious experience that moved him away from care. Participant: Yeah, for me, in the beginning, I was its interesting, this thing, acceptance. I was I did accept itAnd in my in those days, I I did not want God in my life, for a long time, and so, I spoke with my power of tongue, in those days, and said that I I did have it, and um, [laughter] the doctors, of course, continued to use theirs and said I did have it, and everybody all around me, all telling me I do have it, and blah, blah, blahAnd and then, I came to a point where I just denied it anymore, because I was believing and Im still believing, to this day, God, that I do not have it. He later went o n to describe his frustration with the doctors for not understanding his spirituality and desire to not take medications for his HIV, and when he came to the decisional point in the model, he chose to stay out of care.
150 Pivotal events are not new to the H IV literature. A grounded theory study by Rajabiun, et al. ( 2007) suggested pivotal points in the engagement cycle that presented opportunities for interventions targeted at linking people to care and keeping people from falling out of care. Strategies described to facilitate engagement included: providing knowledge, helping to obtain HIV care, building skills and abilities to deal with HIV, providing services to reduc e barriers, and providing support networks (Rajabiun et al., 2007) Like the model presented in this paper, pivotal points provided an opportunity for intervention. H owever, Rajabiun, et al. ( 2007) did not explain the events that would lead up to this opportunity. Summary In this chapter, results from the participant interviews were presented and explained via the grounded theory of the HIV care decision process. Participants were able to provide recommendations throughout the HIV Care t rajectory about how our health care system could promote linkage to care from diagnosis to full engagement in HIV care. In the next chapter, I will discuss how concepts identified in the results relate to existing literature, and make recommendations for future research in Linkage to Care.
151 Table 51 Demographics of Participant Interviews Va riable n=20 Gender Male 9 Female 10 Transgender 1 Age Group 25 34 2 35 44 7 45 54 7 55 64 4 Race Black or African American 14 White 5 Other 1 Ethnicity Not Hispanic 20 Hispanic 0 Education Less than High School Diploma 6 High School Diploma, GED 6 Some College 3 Associates Degree 3 Bachelors 0 Graduate Degree 1 Unknown 1
152 Figure 51 HIV Care Decision Process Model Defining Care Engaging in Care Conflicting Messages of Care Yes Support Emotional, Cognitive, Tangible HIV Care Delay or Intermittent Care Pivotal Event Crisis or Grief Response HIV Diagnosis No Resolution (Re)Appraisal Stigma Holistic Understanding Shared Decision s Connection Navigation Counseling Anticipatory Guidance Diagnosis Delivery
153 C HAPTER 6 DISCUSSION This chapter provides guidance and direction concerning the findings about HIV linkage to care, and how we can incorporate them to improve the health of persons with HIV. The findings from the community advisory board and participant int erviews identified the decisionmaking process for linkage to care and recommendations to improve the linkage to care process. The beginning of this chapter includes a review of the types and timing of support which was considered a critical need by all participants. As presented in Chapter 4, the findings show a disconnect between current practice for HIV Linkage to Care and participant recommendations. T able 61, The Disconnect between HIV Patient Needs and System Practices, highlights the points in the Linkage to Care Decision Process, the recommended improvement by the participants, the concept central to that recommendation, current practice, and recom mended practice changes Next r ecommendations will be presented for public health nursing practice to address the discrepancy between current practice and HIV patient needs At the end of this chapter, I will review the limitations of the current study and directions for future research. Support As support began to emerge in all of the interviews, I started looking more closely at the literature to understand the concept of support, specifically social support, and how it may be relevant to people with HIV. According to Jacobson (1986) social support is a complex phenomenon and may be defined in multiple ways, such as type (emotional, cognitive, tangible) or delivery (informal or formal). Emotional support focuses on the provision of comfort for an individual and fosters feelings of security.
154 Cognitive support is delivered through providing information with a goal of helping someone understand a situation and give them tools for change. Tangible support involves the provision of goods and services in order to overcome a stressor or problem. Dutcher et al (2011) identified an additional type of support, affiliational support, which refers to support delivered from someone who is a part of a similar social network. Many HIV care providers underestimate the impact an HIV diagnosis has on a person and are likely to view structural barriers, such as transportation or child support, as primary reasons people with HIV do not seek care. Conversely, people diagnosed with HIV were more likely to view emotional barriers as the primary reason for not seeking care ( Mayer, 2011) All participants in this research said they needed support, but there was variability in the type of support (emotional, cognitive, tangible), the timing of support (emotional at diagnosis), and the person who delivered support (affiliational). Participants consistently described various types of support in linking to HIV care. In a study by Walsh, Horvath, Fisher, & Courtenay Quirk ( 2012) women recently diagnosed with HIV consistently identifi ed a need for social support soon after diagnosis. The provision of support differed for the women in the Walsh, et al (2012) study Some women needed to find support outside their families through peer support or support groups. Another type of support was available through ancillary services. One type of ancillary service, treatment advocacy, incorporates patient centered care concepts through assessing clients needs and conveying HIV education ( Mutchler et al., 2011) Mutchler, et al ( 2011) qualitatively evaluated a treatment advocacy program and found it helped cli ents to understand treatment options, helped connect patients and providers and increase self advocacy in the patient provider relationship, and
155 allowed the patient to explore the impact of the HIV diagnosis beyond the traditional counseling and testing session. There is also research focusing on the timing or delivery of support in response to a crisis (transitionalist approach to support) ( Jacobson, 1986) Jacobson (1986) indicates the types of support needed in response to a crisis situation, and specifically, how emotional support is most needed during the crisis or grieving phase. Furthermore, when people are in the midst of crisis, they are unable to use (or even perceive) other types o f support such as cognitive and tangible support This is of particular importance in the process of Linkage to Care and our current practices in delivering an HIV diagnosis. Failure of people returning for HIV results and/or care has been well documente d in the literature ( Sull ivan, Lansky, & Drake, 2004) Our health care system response to the poor return rate has been to convey as much information as possible to the person at the time of diagnosis. This information is usually focused on cognitive support ( i.e. why it is i mportant to seek care and use condoms) and how to obtain tangible support ( i.e. eligibility for HIV related services such as Ryan White). From the data in this research, participants agreed they needed emotional support at diagnosi s, during the crisis an d as they began the transition, we could begin to incorporate other types of support. Peer Navigation, a type of affiliational support, was identified as a way to deliver emotional support through connecting people newly diagnosed with HIV to others pre viously diagnosed. People with HIV are able to understand the feelings at diagnosis and the process of linking to care since they shared the same experience at one point in their life. For example, all participants talked about the crisis period when they received
156 the diagnosis and were trying to assimilate it into the rest of their lives. A peer (with HIV) can help people newly diagnosed with HIV by describing that time to help them identify and deal with their feelings. Funding for peer navigation pro grams is sparse, especially in mostly rural areas. For example, Area 3/15, a 15county region, only has half time peer navigators in one county. Recent literature about peer programs in HIV indicate mixed results due to varying types of program evaluations (Dutcher et al., 2011) Results from a qualitative evaluation of peer programs by Dutcher et al. (2011) indicated that the co mmon characteristics shared among peer programs is they promote engagement in care but they advise that more research is needed in this area. HIV Care Decision Making : Crisis and Decisions Receiving a diagnosis of HIV is a significant stressor that participants identified as a crisis with a grief like response. The response of the participants to this crisis varied widely, with some moving directly into care, and others engaging in behaviors detrimental to health promotion. Examination of the liter ature related to crisis and decisionmaking offers insights into the decisionmaking process for persons newly diagnosed with HIV. Crisis and Decisions A crisis response from a change in health status can manifest in biophysical symptoms (tension, anxiety) negative feelings (i.e. anger, shock, shame), altered thoughts and perceptions (i.e. anguish, confusion), and a change in behavior (i.e. substance use) ( Hoff, 2001 ) Interestingly, Hoff (2001) notes how altered thoughts and perceptions contribute to difficulty in making decisions, and, in the case of people newly diagnosed with HIV, difficulty in making the decision to link to care. According to Hoff ( 2001) people often do not seek help for a crisis until after they have responded with
157 negative outcomes For example, participants in this research who chose not to fully engage in care noted a continuation or increase in risky behavior and/or substance abuse. Decision theories focus on how humans make choices from options they are given ( Hansson, 2005) Early decis ion theories looked at the decisionmaking process in a sequential manner H owever, modern decisionmaking theories recognize that such decisions are not made in a linear fashion ( Hansson, 2005) Aids to decisionmaking based on decision th eory, are tools to assist people in making decisions about health care choices and allows for partnership between the patient and provider. During the decision process, the patient must realize that a choice needs to be made, know the options available, understand values that may impact the choice, understand the preferred options, and discuss the values, options, and choice with the provider ( Stacey et al., 2011) Variables that impact the decision process include decisional conflict, patient provider communication, shared decisionmaking, and satisfaction (Stacey et al., 2011) From the findings presented in this research, participants discussed a need for a better understanding of the process after diagnosis (cognitive support) They did not understand that other options were available when their situation was not acceptable ( for example, not being told about places of HIV care outside of the health department). Understanding how decisions are made, and the resources needed for decision making can assist in the Linkage to Care process. Crisis Decision Theory Crisis Decision Theory (CDT) attempts to link theories of stress and coping with theories of decision making to describe the process of response to a crisis ( Sweeney, 2008) CDT is appropriate in examining Linkage to Care since an HIV diagnosis is a
158 crisis event and little is known about the decision making process. The theory is useful in understanding factors influencing the decision making process after a crisis H owever i t is not meant for prediction of a particular response ( Sweeney, 2008 ) In the first stage of CDT, a person evaluates the severity of the event, and interprets the event based on prior information about consequences ( Sweeney, 2008) In the second stage of CDT, a person looks at the response options, and decides what responses he or she is capable of achieving ( Sweeney, 2008) In the thi rd stage of CDT, which can sometimes occur simultaneously with the second stage, people identify and evaluate response options based on resources and consequences Sweeny ( 2008) acknowledges the social aspect of the decision making process in relation to CDT and identifies how persons within the social environment may help influence the decisionmaking process. Several aspects of CDT relate to the findings from the current research. The first stage, evaluation of the severity of the threat is impacted by stigma and the nature of HIV as a potentially fatal disease. Participants engaging in a social system with a negative interpretation of HIV, such as the church, may evaluate the severity of the thre at of HIV as more severe than someone who has a family member with HIV. The second and third stage of CDT assumes participants were given options to evaluate and had adequate knowledge to understand the consequences of a decision. Participants diagnosed with HIV were not always informed of potential options H ence they did not have a chance to evaluate potential options which sometimes led to withdrawal and not linking to care. While the CDT was helpful in understanding the process of linkage to care, it does not take into account the complexity of the health care system and limitations in the provision of care for linkage.
159 How the Diagnosis is Delivered Goals Sweeny and Shepperd ( 2007) explore how people are informed of bad news and the interactions in that exchange can greatly influence someones response within the decision process. There are six goals in the delivery of bad news identified in the medical literature: decreasing the discomfort of the person delivering the bad news (emotional support) providing sufficient information (cognitive support) promot ing satisfaction for the person receiving the bad news, improving understanding of the information about the bad news (cognitive support) reducing distress (emotional support) and promoting hope ( Sweeny & Shepperd, 2007) Participants in this research stressed the importance of emotional support at diagnosis a long with a preference for delivery of emotional support from a peer (affiliational support) Sweeny and Shepperd ( 2007) propose a new model, The Bad News Response Model, which can help proactively guide the recipients of bad news to a desired outcome. The Bad News Response Model begins with an examination of situational factors (controllability, likelihood, and severity) as they relate to what would happen because of the diagnosis if the person does nothing towards prevention. For example, the person delivering an HIV diagnosis should not focus on the how dangerous H IV is but instead focus on what will happen as a result of the diagnosis if the patient does not engage in care (decline in overall health) Next the person delivering the bad news should have a transmission goal and desired response in order to get to t he desired outcome ( Sweeny & Shepperd, 2007) If the goal after the delivery of an HIV diagnosis is to assist the person into HIV care, the person delivering the bad news needs to work with the participant towards that desired response. W ithout the goal of a desired behavioral response to move the
160 patient towar ds care, the person newly diagnosed may choose not to respond to the bad news (i.e. not link to care) This occurred with some participants in the research who received their diagnosis in jail and were not given any support during diagnosis It appeared the goal of the person delivering the diagnosis may have been to inform the client of their status and not move them towards a desired response (i.e. seeking care for HIV). This nonresponse may create an outcome that is neither beneficial t o their own health n or to the health of the population. However, the Bad News Response Model fails to incorporate the goal of the person receiving the bad news. A patient centered care approach, discussed later in this chapter, incorporates the missing e lement in the Bad News Response Model in explaining the decision making process for persons with HIV. Quality Also of concern during the diagnosis is that standard of care in HIV prevention allows lay providers, who have completed approximately 24 hours of training in HIV counseling and testing, to provide test results ( Florida Department of Health, 1999) While expanded screening for HIV, outside of the medical facility, has been a very posit ive public health population intervention and helped many people learn of their status, lay providers may not be the most qualified to deliver a traumatic chronic disease diagnosis and to attend to the resulting crisis response from the patient. HIV is p ossibly the only serious medical diagnosis that is not delivered by a trained healthcare provider, and failure to assist people into care jeopardizes their personal health and the publics health. A cohort study from New York City in 2008 identified sever al predictors for delayed initiation of care including testing at a community testing site, community jail,
161 and department of health STD/TB clinic ( Torian & Wiewel, 2011; Torian, Wiewel, Liu, Sackoff, & Frieden, 2008 ) From this research, facilities in which care and testing were co located were better predictors of linkage to care, leaving the possibility of training in diagnosis deli very as a potential area for intervention. In an opinion paper by McNairy and El Sadr ( 2012) the authors outlined the HIV Care Continuum with areas to promote engagement highlighted (Figure 61). In the paper a nd model, they did not address counseling, monitoring, and support at the diagnosis phase F rom the results presented in this research, this appears to be a critical phase in linking people into HIV care which is missing from the literature Anticipatory Guidance As discussed in Chapter 5, participants in this research described a need to know what to expect. With the fragmentation of care, u nderstanding the system of HIV care is confusing Unclear expectations about the care process do not ease fears r egarding HIV care. Anticipatory guidance is a family centered intervention widely used in pediatric practice in which health care providers share knowledge with parents regarding what to expect developmentally, how to promote development, and the benefits of health promotion ( Piotrowski, Talavera, & Mayer, 2009) Behavioral outcomes from a systematic review of pediatric anticipatory guidance literature identified improved knowledge about development, reduced parental stress, and increase d parental confidence ( Nelson, Wissow, & Cheng, 2003) Incorporating anticipatory guidance to enhance the diagnosis process has the potential to enhance outcomes for people newly diagnosed with HIV. For example, given the complexity of HIV care delivery, anticipatory guidance may help improve health literacy specific to HIV care.
162 Furthermore, reducing stress and increasing the confidence of patients entering the process may help promote linkage to c are. Patient Centered Care The concepts central to patient centered care are not new to the discipline of nursing. In nursing education, the teaching of Betty Neumans Systems Model has helped nurses learn about the interactions between a patient and the system and the importance of a holistic approach to care ( Neuman & Fawcett, 2011) The discipline of family medicine has refined the model of patient centered care, and consists of six interactive components: 1) Exploring the illness experience of the patient, 2) Understanding the patient and context, 3) Finding common goals for health and mutual decision making, 4) Incorporating prevention and health promotion, 5) Enhancing the provider patient relationship through compassion, and 6) Being realistic regarding treatment ( Stewart et al., 1995) Physicians, nurses and ancillary staff sometime s receive formal education regarding patient centered car e Many learn through experience. This lack of formal training in a patient centered approach to care, in addition to a lack of training i n diagnosis delivery, can have serious implications in linking persons with HIV to care. Based on comments made by participants in this research, the way they were told about their diagnosis made an impact on their crisis response. The definition of car e is also an integral part of patient centered care. A persons perspective of care may be very different from our perspectives as providers. Our current public health and health care system tend s to send a message that HIV care is equated with antiretrov iral treatment (ART), a nd ART is prevention with a goal more focused on preventing the spread of HIV than helping the person with HIV From
163 participant comments regarding conflicting messages of care, we are possibly sending a message that if you have HIV and do not engage in treatment with ART, there is no place for you in the health care system This takes a biomedical approach and assumes there is only one way to have someone in HIV care through ART. It does not account for health promotion interventions such as diet and exercise, which could also be very beneficial and is minimized in the current approach. HIV care should be focused on prevention, support, and management, and should accept and care for people at all points of the trajectory. E ngagement in preventive health care may or may not mean ART treatment ART should be dependent on the mutual goals and shared decisions between the provider and the patient a patient centered approach. Implications for Practice Before implementing any changes in the current HIV care trajectory to alter practice consideration of when care begins for the newly diagnosed patient to ensure continuity through the entire course of illness is necessary. The participants in this research often voiced a need for help when they were diagnosed, and felt unprepared or unable to successfully navigate towards care without needed support. Recommendations have been made to begin the care process at diagnosis instead of care beginning when a referral is completed th rough attendance at an HIV/AIDS care appointment ( Stevens & Doerr, 1997; Stevens & Hildebrandt, 2006) H owever from the experiences described in this research, this h as not been the practice If engagement begins at diagnosis, transition and care through the entire trajectory of the i llness could be better ensured. Prevention specialists and health care providers who provide counseling and testing services can embrac e this change in philosophy and actively engage the patient in care, rather than refer to care.
164 Nurses were on the front line when the HIV/AIDS epidemic began. They advocated for their patients at all turns, ensuring fair and equal treatment in the health care system ( Association o f Nurses in AIDS Care, n.d. ) From the data analyzed in this research, a disconnect exists between how care should be delivered (i.e. patient centered) and the perception of how care is actually delivered. Collaborative practice and patient centered c are are essential part s o f nursing practice. Public health nurses should lead efforts to promote delivery of patient centered HIV care beginning at diagnosis. The goal of public health and HIV Infectious Disease Medicine is to treat all persons who are H IV positive with medications (i.e., Treatment as Prevention) ( Nguyen, Bajos, Dubois Arber, O'Malley, & Pirkle, 2011) However, this approach could conflict with a patient centered care approach. By urging HIV medications onto their patients, providers may in fact, be pushing them away. It is necessary to approach the therapeutic relationship with a patient centered approach. Public Health Nurses can use the findings fro m this research to promote policy change related to HIV Counseling and Testing and enhancement of the testing procedures to incorporate patient centered care. P ivotal Events : A New Opportunity for Intervention Pivotal events were identified as occurrence s which helped study participants to link to HIV care for those who initially had delayed care. Interestingly, pivotal events also turned people away from care. Stressful events in someones life can lead to an appraisal of the person and their environme nt ( Jacobson, 1986) Like the crisis response, people going through a pivotal event may present to health care providers (i.e. primary care physicians, mental health counselors, nurses) for help with r esolution of the event ( Hoff, 2001 ) Findings from this research were similar to findings presented
165 by Rajabiun ( 2007) in which we both developed models representing the cyclic al process of people in and out of HIV care, and the role of pivotal events in providing opportunities for intervention. However, unlike the Rajabiun (2007) model, which only focused on HIV care, the grounded theory developed in this research describes th e decision process from diagnosis to HIV care and how pivotal events can impact decisions to move towards care. Practicing a patient centered care approach calls for providing continuity in care. Thus, HIV providers and primary health care providers have the opportunity to recognize pivotal events as potential chances to assess, provide needed support, and link people into HIV care or help them remain in care. Limitations As a novice researcher, I developed an extensive plan to address potential limitations The plan included consistent engagement with faculty experts in qualitative methods HIV care, CBPR and health services research. Furthermore, continued engagement with the community from utilizing a CBPR approach helped overcome potential limitations. Recruitment of persons who had never engaged in HIV care presented a challenge. Community partners were able to help identify persons who were out of care, but links to people never in care, or newly diagnosed did not take place. One peer advocate working in the health department indicated that some people newly diagnosed were still uncomfortable and afraid of the diagnosis, and the research process frightened them because of the stigma associated with HIV Recruitment of Hispanics also pres ented a challenge. I attended several community meetings to specifically ask for Hispanic participants. In the local county, however, there are approximately 35 HIV
166 positive people with a Hispanic background, making identifying them for recruitment a chal lenge. Use of the Community Advisory Board (CAB) helped promote cultural sensitivity and community engagement in the research process. However, l imitations from the CAB focus group data included a lack of thematic saturation, limited data collection/engag ement (i.e., one focus group) and no member checking The use of a health science qualitative data analysis group helped assure the authors interpretations were grounded in the data and not reflexive of her own experiences working with the advisory board Furthermore, the process of analysis of the focus group data was done under the supervision of a faculty advisor, further assuring the results were grounded in the data. The process of conducting constructivist grounded theory focuses on meaning that is developed from the interaction between the participant and researcher. In the reflexivity statement from Chapter 3, I identified how my perspective may have influenced the development of the shared meaning of the decision process of linkage to care. B y sharing my perspectives with the inter disciplinary data analysis group, I was able to confirm that my interpretations and analyses were grounded in the data and not based on my experiences. The participant interviews yielded abundant information regardi ng the process of linkage to care for those newly diagnosed with HIV H owever, there were also limitations in this arm of the research. First, wi th faceto face interviews people with HIV may have framed their answers based on their perceptions of who I am, and my position as a researcher and nurse. While participants appeared comfortable during the
167 interview process, questions regarding an HIV diagnosis can be very personal and bring up memories they did not wish to share that may have enhanced my inter pretation of the decision process. I consistently attempt ed to lessen any potential impact from this possible discomfort by building a nonjudgmental, trusting relationship with participants, thanking them for their willingness to share their story, and respecting them as the expert on the subject of living with HIV and making decisions regarding care. I t is important to realize that research findings are representative of the Area 3/13 population and may not apply to other populations The voices of sm all metropolitan and rural populations have not been incorporated into substantial literature regarding HIV linkage to care, and the descriptions from the findings may help address linkage to care in similar contexts Directions for Future Research HIV Diagnosis Research regarding interventions during the delivery of an HIV diagnosis includes a need to enhance training related to an HIV diagnosis as well as delivery and the provision of anticipatory guidance. Metsch (2012) found no additional benefits f rom risk reduction counseling which was directed by risk factor questions delivered during testing Risk reduction questions may not provide benefit for any purposes other than statistical counting and identification of target populations for HIV preventi on. Based on the findings from this study, people who are newly diagnosed with HIV want (and need) a different approach It is important for researchers to focus on a different type of counseling that can help patients identify health issues and transiti on into primary and HIV care through anticipatory guidance Anticipatory guidance in HIV care could include the perceptions of HIV care, what types of emotional responses to expect and
168 how to find support, plus identification of the next stages of the pr ocess (i.e. Disease Investigation Specialists interviewing them to notify partners). Identifying and addressing their personal health concerns may have more relevance to a patient than risk reduction concerns and partner notification to reduce spread HIV Care that is Patient Centered The concepts of Patient Centered Care were mentioned throughout the participant interviews including coordination (navigation), advocacy (support), holistic understanding (patient context), shared decisions, health promo t ion, and continuity Research is needed that examines patient outcomes with the application of patient ce ntered care at any point in the HIV trajectory For example, comparing known interventions specific to transitional care (active linkage, peer navigation, case management) may help to identify which intervention is most effective in assisting people with HIV into care. Development of new interventions, based on the crisis literature, which will incorporate crisis and grief training of providers at thi s point in the model is also worth further exploration. Research in the HIV care setting is also needed specific to patient centered care. For example, research might compare 2 clinic settings either geographically similar or sequential time comparisons One setting could have specific training in patient centered care delivered by all staff, and the other could have the standard of care The patient outcomes ( i.e. viral load, CD4, quality of life, satisfac tion, adherence) could be examined. Resear ch should address the crisis period immediately during and after diagnosis through the provision of emotional support by personnel trained in crisis counseling to see if it impacts linkage to HIV care.
169 CBPR The CBPR process engages and partners with the community through the entire research process from identification of the research question to dissemination of the results. Following the identification of the research problem with community members, this dissertation research focused on the formation of the CAB and collection of the data specifically regarding Linkage to HIV care in Area 3/13. Consistent with the principles of CBPR, results of this research will be shared with and interpreted by the CAB and will be presented to the RWCC and to the HIV /AIDS departments of Area 3/13 Through sharing results with the community, feasibility of proposed solutions to linkage to care issues identified by participants can be discussed. Future work with the CAB will expand the nature of the partnership and mo ve towards an equal partnership in all phases of the research process. The CAB can subsequently work together to develop an intervention at the health care organizational level to improve linkage to care. Summary The findings from this research identified a need to move towards patient centered care in approaches to HIV prevention and treatment. Since the advent of Treatment as P revention (M. S. Cohen et al., 2011) there has been a new surge to focus o n HIV T reatment i s P revention, a biomedical and public health approach that seeks to eradicate the virus based on surveillance and the targeted intervention of antiretroviral therapy (Nguyen et al., 2011) As Nguye n ( 2011) identifies in a n opinion paper even countries with adequately available resources are not able to overcome the growing epidemic with a purely biomedical approach not all people access the tests, care, or medicine even when available. The biomedical focus fails to remove the complex social and structural challenges that are evident in the epidemic (Nguyen et al.,
170 2011) A patient centered approach to care, as suggested by the participants in this research, is a step towards addressing the complex social and structural issues people with HIV face in the journey from infection to care through understanding the context and their social role in society Perhaps it is timely to shift the message from Treatment a s Prevention to HIV Care as Prevention. HIV C are may or may not include treatment H owever, treatment will surely not exist if the care piece is not in place first This dissertation research serves as the first step in building a program of research specific to linking people with HIV into HIV care. From this research I was able to develop a theory of the decision process and recommendations in linkage to HIV care. Figure 32 i dentified how the developing grounded theory would identify constructs within a social ecological model relevant to initial linkage to HIV care. Figure 6 2 modifies that figure, incorporating constructs from the results diagnosis delivery, stigma, patient centered care, defining care, and acceptance Using a CBPR approach, I was able to understand community needs and insights prior to initiation of the research. Again, s haring the results of the research with the Community Advisory Board, and HIV community will help to identify possible interventions that will be culturally relevant to people living in small metropolitan and rural areas. Public health nursing, with its unique perspective in both individual health promotion and population health promotion can guide the improvement of care for people with HIV throughout the HIV care trajectory.
171 Table 61. HIV Linkage to Care The Disconnect between Patient and System Point in Decision Process Recommendati on by Participant Conce pts from Literature Current Practice or Perceptions of Practice by Participants Recommended Practice Changes HIV Care Trajectory (Throughout) Support Emotional support priority at diagnosis. Cognitive, tangible, and affiliational support later. Cognitive support at diagnosis and passive referrals to other types of support such as tangible emotional, and affiliational. Educate prevention staff and providers about the importance of emotional support at diagnosis. Clients may have difficulty understanding or receiving other types of support until the crisis starts to resolve. Diagnosis Diagnosis Delivery Anticipatory Guidance Goals and Quality Guidance about challenges and changes to expect Population health outcomes as focus, providers delivering diagnosis poorly trained in HIV knowledge, care process, and sensitivity to client response Increased t raining in d iagnosis d elivery to include understanding of disease process, crisis counseling techniques, and identification of goals. Crisis/Grief Period HIV Care Delay of Care Connection Navigation Counseling Patient Centered Care (holistic understanding, shared goals and decision making, prevention and health promotion, continuity. Often passive linkages. Person delivering diagnosis often is not familiar with process or resources for assistance. Lack of adequate assessment to identify needs such as counseling support. Understanding that care begins at diagnosis and patients frequently do not have the heal th literacy to understand next steps. Educate all providers, clinic staff, and ancillary staff on the importance of PCC. Realize that ART are only one part of a Patient Centered Approach. O ther ways to improve health include diet, exercise, and substance abuse treatment. The goal should be to keep them in care so they can be monitored through routine lab work and continued support. Without routine lab monitoring, it will be difficult to detect when the body is no longer able to keep the virus suppressed
172 F igure 61 Adaptation from McNairy and El Sadr ( 2012) HIV Positive Test HIV Care Engage, Counsel, Monitor, and Support Anti Retroviral Therapy Retain, Counsel, Monitor, and Support Adherence and Viral Suppression
173 Figure 62. Revised Social Ecological Model
174 APPENDIX A RECRUITMENT FLYERS
176 APPENDIX B PARTICIPANT INTERVIEW GUIDE AIM 2
178 Appendix C FOCUS GROUP OUTLINE/QUESTION GUIDE Linkage to Care Community Advisory Board 1. Introduction(s) Review and Sign Consent Forms/Demographics Review principles and processes of Community Based Participatory Research (CBPR) Linkage to Care Trajectory Begin Focus Group and Recording. i) Tell me about the key issues relating to linkage to HIV care after initial diagnosis that you see in your work, experience, or life? Refer to the Linkage to Care Trajectory and comment how that applies to Area 3/13. ii) How do you think our health care system impacts the decision for people to link to care? iii) In your experiences, what has worked the best to link people to care? iv) What do you think hinders linkage to care? v) Review study procedures who should conduct interviews? Peer N avigator Focus Groups? vi) Review the initial question guide that I created for the interviews and comment on : 1) How will these questions will help us understand the decisionmaking process regarding seeking HIV care? 2) What other things can we address that may help us to understand this process? 3) Are the questions culturally sensitive and appropriate to the local population of persons with HIV? vii) Review Incentives viii) Review Advertisement Review key points from discussion and end recording. Distribute gifts/gift cards to eligible participants.
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192 BIOGRAPHICAL SKETCH My long term research goal is to develop mechanisms to facilitate persons with HIV into care and ensure they remain in care. My academic training thus far has provided me with an excellent foundation to pursue this goal. At the University of North Carolina, I became interested in HIV/AIDS when I recognized the discrimination of persons with HIV within healthcare professions. At that time, I chose to take a class on HIV/AIDS and focus my undergraduate honors research thesis on healthcare providers perceptions of psychosocial issues of HIV positive African American women. At the University of Pittsburgh, I continued my research interests in HIV through work with Judy Erlen, PhD, RN, in two projects: the use of Life Rev iew in persons with HIV and the utility of the Purpose in Life Test in persons with HIV. I chose to return to school at the University of Florida in 2008 to complete my PhD and was surprised to find that many of the same issues relevant to my honors thesis were still problematic. I then knew my research focus would continue to be with people diagnosed with HIV. Coursework at the University of Florida provided a solid basis in nursing science and public health. Working as a graduate research assistant for Dr Shawn Kneipp, an expert in health disparities research, I was able to learn and employ the principles of CBPR to develop a public health nursing intervention to improve medical outcomes for women in a welfare transition program. In an independent study w ith faculty in health services research, we are closely examining the CBPR data to better understand mechanisms that impact healthcare for welfare participants. This experience is allowed me to apply knowledge in health services research to my research wit h HIV. While engaged in my Master of Science in Public Health Nursing program, I was able to spend 2 semesters at the Alachua County Health Department (ACHD) immersed
193 in their HIV linkage to care program. I worked on management of a database of all persons diagnosed with HIV to determine rates of linkage and adherence, focusing particularly on persons newly diagnosed or recently falling out of care. I developed a gift card program to help facilitate persons into HIV care and created a means of follow up wi thin the system for persons newly diagnosed. While working at the ACHD, I was able to complete the AIDS 500/501 Counseling and Testing Certification Course. The ACHD experience enabled me to expand my involvement in the local HIV community through particip ation with the regional Ryan White Care Consortium and election to the Ryan White Care Consortium Board, where I remain actively involved. This experience also afforded me critical insight into constraints from community members when thinking about prevent ion, linkage to care, and HIV services especially financial limitations. My dissertation research allow ed me to further develop community relationships, gain more knowledge and experience in qualitative methods and principles of CBPR, and work toward my g oal of decreasing health disparities and promoting health in a highly vulnerable population. Outcomes from my dissertation research will inform the creation of an intervention to enhance linkage to care for persons with HIV in smaller metropolitan areas (l ess than 500,000 people) and in rural areas with limited funding.