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1 ASSOCIATION S AMONG PATIENT PATIENT CENTERED CUL T URAL SENSITIVITY OF THEIR HEALTH CARE SITES SATISFACTION WITH CARE, AND TREATMENT ADHERENCE IN A NATIONAL SAMPLE OF CULTURALLY DIVERSE PATIENTS By JULIA RONCORONI A THESIS PRESENTED TO THE GRADUATE SCHOOL OF THE UNIVERSITY OF FLORIDA IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE UNIVERSITY OF FLORIDA 2012
2 2012 Julia Roncoroni
3 To those who, with their uncondit ional support, encourage me to find my voice
4 ACKNOWLEDGMENTS I am thankful to many for their contributions to this project. First and foremost, deep appreciation is due to my committee chair and inspiration, Dr. Carolyn M. Tucker, for all her support, guidance, and empowerment during the first two years of my doctoral program. Her passion for eliminating health disparities and her focus on incorporating cultural sensitivity to our daily lives has served as role modeling for me, as I evolve into a resear ch and counseling professional. I also would like to sincerely thank my committee members, Dr. Edil Torres Rivera and Dr. Chun Chung Choi, for their vision and support in helping me succeed. Furthermore, I am grateful to my parents, Maria del Carmen Giagg eri and Armando Roncoroni, for their love, patience, and dedication to my education. With unending support, they have both always encouraged me to become the best I can be. My gratitude also goes to my partner, Christian Robles, for giving me the best day s of my life and for always finding a way to make me smile, even through tough times. His patience, unconditional love, and faith in me have significantly shaped for the better my experiences in this doctoral program. Last, I would like to thank the Behav ioral Medicine Team for their continuous involvement and input during the resource collection and writing phases of this thesis. Especial thanks go to Whitney Wall for her constant support and creative ideas in every domain of this doctoral program.
5 TAB LE OF CONTENTS P age ACKNOWLEDGMENTS ................................ ................................ ................................ ............... 4 LIST OF TABLES ................................ ................................ ................................ .......................... 7 LIST OF FIGURES ................................ ................................ ................................ ........................ 8 ABSTRACT ................................ ................................ ................................ ................................ .... 9 CHAPTER 1 INTRODUCTION ................................ ................................ ................................ .................. 11 Nature of the Problem ................................ ................................ ................................ ......... 11 Present Study Hypothesis and Research Question ................................ ....................... 14 2 LITERATURE REVIEW ................................ ................................ ................................ ....... 15 Patient Cente red Culturally Sensitive Health Care ................................ ........................ 15 Culturally Sensitive Health Care and Positive Patient Outcomes ......................... 16 Measures of Patient Ce ntered Health Care ................................ ............................. 18 Patient Satisfaction ................................ ................................ ................................ .............. 19 Measuring Patient Satisfaction ................................ ................................ .......................... 20 Treatment Adherence ................................ ................................ ................................ .......... 21 Measures of Treatment Adherence ................................ ................................ ................... 22 3 METHODS ................................ ................................ ................................ ............................ 24 Participants ................................ ................................ ................................ ........................... 24 Instruments ................................ ................................ ................................ ........................... 25 Patient Data Demographic Questionnaire ................................ ................................ 26 Tucker Culturally Sensitive Health Care Clinic Environment Inventory Patient Form ................................ ................................ ................................ ............... 26 Patient Satisfaction Questionnaire Short Form (PSQ 18) ................................ ...... 27 General Adherence Measure (GAM) ................................ ................................ ......... 27 Procedure ................................ ................................ ................................ .............................. 28 Step One: Recruitment of National Health Care Sites ................................ ............ 28 Step Two: Recruitment of On Site Data Collection Coordinators and Data Collectors ................................ ................................ ................................ .................... 30 Step Three: Recruitme nt of Patient Participants ................................ ...................... 31 4 RESULTS ................................ ................................ ................................ .............................. 34 Descriptive Data for the Major Variables ................................ ................................ .......... 34 Hypothesis Testing ................................ ................................ ................................ .............. 35
6 Research Question: ................................ ................................ ................................ ............. 35 5 DISCUSSION ................................ ................................ ................................ ....................... 39 Implications ................................ ................................ ................................ ........................... 40 Limitations ................................ ................................ ................................ ............................. 41 Future Directions ................................ ................................ ................................ .................. 43 APPENDIX A PATIENT DEMOGRAPHIC DATA QUESTIONNAIRE ................................ .................. 44 B TUCKER CULTURALLY SENSITIVE HEALTH CARE CLINIC ENVIRONMENT INVENTORY PATIENT FORM ................................ ................................ ....................... 47 C PATIENT SATISFACTION QUESTIONNAIRE SHORT FORM (PSQ 18) ................. 49 D GENERAL ADHERENCE MEASURE ................................ ................................ .............. 51 E HEALTH CARE SI TE PARTICIPATION AGREEMENT CONTRACT ......................... 52 F HEALTH CARE SITE DEMOGRAPHIC AND HEALTH DATA QUESTIONNAIRE ................................ ................................ ................................ ............... 53 G PATIENT INFORMED CONSEN T FORM ................................ ................................ ....... 58 H PARTICIPANT PACKET COVER LETTER ................................ ................................ ..... 61 LIST OF REFERENCES ................................ ................................ ................................ ............ 62 BIOGRAPHICAL SKETCH ................................ ................................ ................................ ........ 67
7 LIST OF TABLES Table page 3 1 Descriptive characteristics of the listwise deletion s ubsample ................................ 33 4 1 Pearson correlations among all investigated variables ................................ ............. 37
8 LIST OF FIGURES Figure page 4 1 Schematic of the m ediation model tested in this study. ................................ ............ 38
9 Abstract of Thesis Presented to the Graduate School of the University of Florida in Partial Fulfillment of the Requirements for the Degree of Master of Science ASSO CENTERED CULTURAL SENSITIVITY OF THEIR HEALTH CARE SITES, SATISFACTION WITH CARE, AND TREATMENT ADHERENCE IN A NATIONAL SAMPLE OF CULTURALLY DIVERSE PATIENTS By Julia Roncoroni May 2012 Chair: Carolyn M. Tucker Major: Psychology The present study was designed to: (a) explore the relationship between patient centered cultural sensitivity of t heir health care sites (i.e. the physical and social environment and clinic policies) and t heir self reported adherence to their medical treatment regimens and (b) investigate whether this relationship is mediated by satisfaction with health care experienced at their health care site. Participants consisted of a low income skewed culturally di verse sample of 1,581 patients from 67 health care sites across the United States. These patients were part of the nation wide Patient Centered Culturally Sensitive Health Care and Health Promotion Research Project to assess the degree of patient centered cultural sensitivity patients perceive in interactions with their health care providers and health care office staff, and in their health care sites (i.e. health care policies and physical characteristics ) Results of the present study revealed a signific ant positive relationship between perceived patient centered cultural sensitivity of their health care sites and their self reported treatment adherence to a prescribed treatment regimen Additionally, it was found that : (a) p atient centered cultural sensitivity of their health care sites was significantly
10 associated with and their satisfaction with their health care ; and (b) p satisfaction with care was significantly associated with their self reported treatme nt adherence to a prescribed treatment regimen Patient satisfaction with care partially mediated the relationship between patient centered cultural sensitivity of their health care sites and their self reported treatment adherence. Stu dy limitations and implications of the findings from this study for increasing treatment adherence are discussed.
11 CHAPTER 1 INTRODUCTION Nature of the Problem Treatment adherence refers to the willingness and ability of patients to actively follow the r ecommendations of their health care providers (Bosworth, 2010; Jeenah, Kazadi, & Moosa, 2007). Poor treatment adherence in patients with chronic diseases is a significant international concern (Bosworth, 2005; World Health Organization, 2003). In develope d countries, like the United States, treatment adherence averages 50%, while in developing countries rates of adherence are even lower (Balkrishnan, 2005). Research has consistently demonstrated that inadequate treatment adherence leads to higher rates of morbidity and mortality and also to increased health care costs (Aday, 2004; Balkrishnan, 2005; Cramer et al., 2008). For example, health consequences of poor treatment adherence are high rates of heart disease, cancer, and stroke, the three main causes of morbidity and premature mortality in the U.S. (Bosworth, 2010). In the United States, between 33 % and 69% of hospital admissions (Jamil & Mills, 2010) and close to 125,000 deaths per year (Bosworth, 2005) are the consequence of poor medication adherence The direct and indirect costs of medication adherence to the American health care system range from $100 billion to $300 billion a year (Jamil & Mills, 2010). Therefore, from both a quality of life and an economic perspective, it becomes imperative to i dentify precursors and correlates of treatment adherence. Literature on treatment non adherence has traditionally placed blame on individual factors. In the last decade, this perspective has been replaced by a somewhat more comprehensive and systemic per spective. Treatment n on adherence can be attributed, in part, to differential access to social determinants of health (i.e. the economic and social conditions that help shape the health
12 of individuals and their communities, such as income or education) (Br ennan, Baker, & Metzler, 2008; Dean & Fenton, 2010; U.S. Department of Health and Human Services, 2011). However, when access to social determinants of health is equivalent, individuals who systematically experience social disadvantage due to their race/et hnicity (or other) minority status still tend to adhere to treatment less than their non Hispanic White counterparts (Shumaker, Ockene, & Riekert, 2008). The importance of other determinants of treatment adherence, such as provider and health system relate d factors, has been somewhat ignored in the health care literature (World Health Organization, 2003). A focus on these factors is imperative if patient treatment adherence is to be improved (World Health Organization, 2003). There are growing calls in the health care literature for patient centered interventions that are likely to improve treatment adherence (Bosworth, 2010; U.S. Department of Health and Human Services, 2011; Institute of Medicine [IOM], 2011; Primm, 2010). Tucker and colleagues developed a Patient Centered Culturally Sensitive Health Care (PC CSHC) Model to describe the relationship between patient centered c ulturally sensitive health care behaviors and outcomes (Tucker, Herman, Ferdinand, Beato, Adams, et al., 2007 b) Tucker and colleagues (2011) use d the PC CSHC Model to examine the relationship between patient perceived provider cultural sensitivity and patient reported treatment adherence using a sample of African American primary care patients and White American p rimary care patients Results of this study indicated that for African American patients, but not for the White patients, perceived provider cultural sensitivity had a direct effect on treatment adherence. The findings of this study provide support for the provision of patient centered culturally sensitive health care. Other studies have led to similar results: the higher the perceived cultural sensitivity of health care
13 providers, the higher the treatment adherence of patients ( Salganicoff, Ranji, & Wyn, 2 005; Wilson, Grumbach, Heuebner, et al., 2004). H ealth care literature on cultural sensitivity has mostly centered around the impact of provider behaviors and attitudes on patient satisfaction and treatment adherence (Beach, Saha, & Cooper, 2006; U. S. De partment of Health and Human Services, 2011; Shumaker et al., 2008), Yet, o ther studies have reported positive associations between cultural sensitivity of the health care physical environment and policies and positive patient outcomes such as satisfaction with care and treatment adherence (Brach, Fraser, & Paez, 2005 ; Chrisman, 2007 ) The implementation of culturally sensitive practices at an organizational level can aid with the deinstitutionalization of racism in health care practices (Andrulis, Siddiqui Purtle, & Duchon, 2010). Furthermore, a review of the relevant literature reveals that increased cultural sensitivity at the organizational (systemic) level (e.g. extended clinic hours, flexibility with appointment times, short waiting times) positively impacts patient provider communication, patient satisfaction, and patient treatment adherence (Crosby et al., 2010; Harnett, Correll, Hurwitz, Bader, & Hepner, 2010; [IOM], 2012; Mpinga & Chastonay, 2010). Additionally, plenty of anecdotal evidence indica tes that barriers to cultural competence and sensitivity at the organizational/systemic level (e.g. limited site hours or prolonged waiting times) create a disconnection between health care organizations and their diverse patient populations (Betancourt et al., 2003). No known research has explored the association s between levels of patient identified indicators of cultural sensitivity in health care site environments and policies (i.e., patient centered cultural sensitivity indicators) and positive patie nt outcomes (e.g., treatment adherence) Patients are the most ideal experts regarding what they perceive as culturally sensitive. The high
14 rates of treatment non adherence speak to the need to develop interventions that empower patients to actively parti cipate in their health care by providing feedback to their health care sites on what makes them feel comfortable, trusting, and respected. Incorporating these indicators in in health promoting behaviors. Present Study Hypothesis and Research Question The present study examines the association s among perceived patient centered cultural sensitivity of their health care sites, patient satisfaction with care, and trea tment adherence in a nationwide sample of culturally diverse patients in the U.S. Based on the relevant literature, the specific hypothesis is that there will be a significant positive relationship between centered cultural sens itivity of their health care sites self reported level of treatment adherence. The literature presented above suggests that patient satisfaction with care mediates the relationship between the level of patient centered cultural sensitivity p atients perceive in their health care sites and treatment adherence. Thus, the research question set forth in this study is as follows: does patient satisfaction with care act as a mediator in the relationship between centered c ultural sensitivity of their health care sites reported level of treatment adherence ? If a significant relationship between centered cultural sensitivity of their health care sites and treatment adherence is f ound, then these results could provide additional support for assessing the levels of patient centered cultural sensitivity patients perceive in their health care sites, and, if necessary, adjusting these levels to meet the needs of culturally diverse pati ents.
15 CHAPTER 2 LITERATURE REVIEW Patient Centered Culturally Sensitive H ealth Care behaviors, attitudes, and policies that come together in a system, agency, or amongst pro fessionals and enables that system, agency, or those professionals to work effectively in cross care literature. At the practice level, cultural competence transl ates into providers demonstrating heightened cultural awareness and also respect, sensitivity, and responsiveness to patients (Tucke r et al., 2007b ). This conceptualization is consistent with the traditional view that cultural o be appropriately responsive to the attitudes, feelings or circumstances of groups of people that share a common and distinctive racial, national, religious, linguistic, or rally sensitive expectations (Majumdar, Brown, Roberts, & Carpio, 2004). The development of patient centered culturally sensitive health care systems has been hi ndered by the lack of a patient generated (vs. provider/administrator generated) definition of cultural competence and cultural sensitivity (Mirsu Paun, Tucker, Herman, & Hernandez, 2010). In response to this, Tucker and colleagues (2011) introduced the te rm patient centered culturally sensitive health care to describe health care systems that display patient desired, modifiable provider and staff behaviors and attitudes, and health care site environment characteristics and policies that culturally diverse patients identified as indicators of respect for their culture and that enable these patients to feel comfortable with, trusting of, respected during, and trusting of the health care they receive. Patient centered cultural sensitivity is a patient empowerm ent term,
16 equivalent to competence plus, that characterizes the patient provider relationship as a partnership rooted in patient centeredness (Tucker et al., 2011). Culturally Sensitive Health Care and Positive Patient Outcomes Research has empirically l inked the level of cultural sensitivity of health care sites/centers (organizational/systemic cultural sensitivity) to treatment adherence and positive patient outcomes Some of the environment characteristics and center policies that patients have describ ed as indicators of patient centered cultural sensitivity include the provision of language (Spanish/English)/level appropriate education materials, scheduling flexibility, and comfort and cleanliness of their sites. The provision of culturally/linguistic ally appropriate services in health care sites is likely to lead to higher patient satisfaction with care and lower treatment drop out rates ([AHRQ], 2012; [IOM], 2012). By law, hospitals and private practices that receive federal funds should provide int erpreting services (Partridge & Proano, 2010; Title VI of the Civil Rights Act of 1964). Yet, due to the large number of patients who have limited English proficiency and the diversity of languages these patients speak, health care centers have often reso rted to the use of Providers have also expressed hesitation towards incorporating interpreters in the health process since providers feel they must compete with inter narratives and to retain control in medical encounters (Hsieh, 2010). Yet, the value of providing professionally trained interpreters becomes evident in research results that have linked these services with in creased patient access to care, satisfaction, and treatment adherence ([AHRQ], 2006; Baker, Parker, Williams, Coates, & Pitkin, 2008; Morales, Elliot, Weech Maldonado, & Hays, 2006; U.S. Department of Health and Human Services, 2011).
17 Efforts to incorpor ate reader friendly materials have also been positively linked to positive patient outcomes ([AHRQ], 2003). Research has demonstrated a mismatch between existing ilities (Vaughn, Oelschlegel, Heidel, Caldwell, & Wallace, 2011). Vaughn et al. (2011) concluded that many commercial materials used for patient education are produced at a much higher level (average reading grade level = 9.34) than the average reading le vel of patients (equal to or less than 5 th grade). Results from this study are consistent with other studies on the subject (Wallace, Keenum, Roskos, Koopman, & Young, 2008; Wolf, Davis, Shrank, Neuberger, & Parker, 2006). Consequently, in 2010, the Pati ent Protection and Affordable Care Act mandated an investigation of drug labeling standards, with the ultimate goal of empowering the nearly 87 million adult patients with low literacy levels and the 24 million adults with limited English proficiency to ma ke informed decisions and take charge of their own health care (Andrulis et al., 2010). This, and other interventions that promote the inclusion of appropriate educational materials in health care settings, become imperative when research results have clea rly linked the provision of these materials to patients with increased patient access to care, satisfaction, and treatment adherence ([AHRQ], 2003). Patient centered strategies towards appointment scheduling and keeping are also influential on treatment a dherence rates. Sixty percent of participants report that their usual providers do not have evening or weekend office hours ([AHRQ], 2012). Numerous studies have shown that patients who attend clinics without evening/weekend hours and with long waiting tim es show high levels of dissatisfaction with the care received and low levels of treatment adherence conducted by Anderson and colleagues (2007) concluded that the co mbination of long wait times
18 and short visit times (i.e. short time spent with the physician) produced the lowest level of patient busy schedules), scheduling f lexibility, and short waiting times have been identified as a correlates of high patient satisfaction and treatment adherence ([AHRQ], 2012; Crosby et al., 2010; Dansky & Miles, 1997; Harnett et al., 2010; Vivanti, Ash, & Hulcombe, 2007). Additionally, t he u se of health care information technology for appointment scheduling and keeping has been shown to increase treatment adherence (U.S. Department of Health and Human Services, 2011). Numerous studies have found that reminding patients of their appointmen ts via text messages, emails, or phone calls was connected to higher patient satisfaction and compliance (Crosby et al., 2010; Murff, 2006). Providing a welcoming and friendly clinic environment may also increase attendance and compliance (Crosby et al., 2 010). An office that is spacious, well furnished, and well equipped with lightning, water and furniture is a strong predictor of patient satisfaction (Bhanu, 2010). Conversely, culturally diverse patients have identified unsanitary facilities as barriers t o access and adherence to care (Crosby et al., 2010; Harnett et al., 2010) Measures of Patient Centered Health Care An obstacle to promoting patient centered culturally sensitive health care sites is a lack of instruments to assess the level of patient p erceived patient centered cultural sensitivity (Mirsu Paun et al., 2010). The American Medical Association (2006) recommends the use of standardized and valid instruments to evaluate and, if necessary, to i ncrease the level of patient centered cultural sen sitivity of health care sites. Yet, thus far, research has only employed isolated indicators of cultural competence (e.g. the provision of culturally/linguistically appropriate reading materials; Betancourt, Green, Carillo, & Ananeh Firempong, 2003) as out come measures. Furthermore most available cultural competence inven tories have been
19 designed by health care professionals and do not incorporate the perspective of culturally diverse patients ([ IOM], 2010; Tucker et al., 2007 b ). To address some of the li mitations in existing measures of cultural sensitivity, Tucker and colleagues (2007) developed the Tucker Culturally Sensitive Health Care Clinic Environment Inventory (T CSHC CEI), a n instrument designed to assess whether health care centers implement pol icies and have physical environment characteristics identified as culturally sensitive by adult, culturally diverse patients. Unlike other existing measures of cultural sensitivity, this instrument: (a) has data based items; (b) was developed from a divers culturally sensitive health care); and (c) attends to broader aspects of culturally sensitive health care or of health care sites cultural sensitivity (e.g. hours of operations or cost) (Mirsu Paun et al., 2010). Patient Satisfaction Patient Satisfaction with health care has been defined as the extent to which a patient is satisfied with the health care he/she receives (Hays, 2009). Patient satisfacti on with health care requires congruence between the health care patients expect to receive and the health care they actually receive (Heidegger, Saal, & Nuebling, 2006). Today, patients in health care are conceptualized as both medical partners and buyers of health care services (Bhanu, 2010; Harnett et al., 2007). Therefore, the perspective of patients regarding their health care has gained value in the assessment of health care quality. Given that patient satisfaction with health care is an important pred ictor of health care outcomes, treatment adherence, and medical malpractice claims, it has received increasing attention in the health care literature (Bhanu, 2010; Hays, 2009).
20 Research has consistently established a relationship between patient satisfac tion with health care and positive patient outcomes Patient satisfaction with health care is a strong motivating factor in treatment adherence (Bhanu, 2010). Patients who are satisfied with their health care are more likely to comply with treatment recomm endations, report positive provider patient relationships, and use health services (Baker, Mainous, Gray, & Love, 2003; Cvengros, Christensen, Hills, & Rosenthal, 2007; Hirsh, Atchinson, & Berger, 2005; Howard et al., 2009; Tucker et al., 2011). In turn, f ollowing provider recommendations and using health services more often and more efficiently ha ve positive consequences for patients health (Tucker et al., 2011). Measuring Patient Satisfaction There are numerous measures of patient satisfaction; yet, re searchers have often argued that the validity of these measures is questionable. The main criticisms of these measures reflect the fact that : (a) it has taken several studies for a d efinition of patient satisfaction with health care to emerge ; (b) the measu res of patient satisfaction have low discriminative power ; and (c) measures of patient satisfaction with care are subjective First, the slow development of a definition of patient satisfaction with health care has been criticized (Hekkert, Cihangir, Klee fstra, van den Berg, & Kool, 2009; Gill & White, 20 09; Mpinga et al., 2011). Most surveys measuring patient satisfaction have used different indicators of this concept (Hays, 2009; Hekkert et al., 2009). Additionally, the on these in dicators has not always been taken into account when developing measures to assess patient satisfaction with care, thus rendering their validity questionable (Heidegger et al., 2006). Hekkert et al. (2009) recommend researchers be mindful of the type of sa tisfaction measured in any particular study.
21 A second limitation of patient satisfaction measures reported by some authors is their low discriminative power (i.e. measures typically yield very high scores of satisfaction) (Mpinga et al. 2011). Some authors claim there is no empirical evidence for th e argument that most measures have low discriminative power (Hekkert et al., 2009). Additionally, other authors have argued that even when some measures do have low discriminative power, this low discriminative power is mainly a consequence of disagreements on the concept being measured (Mpinga et al., 2011). Researchers have also objected to the subjectivity of measures of patient satisfaction (Crowe et al., 2002; Jenkinson, Coulter, Bruster, Richards, & Chand ola, 2002). Yet, this subjectivity can also be considered a strong point of these meas ures in that these measures can The Patient Sa tisfaction Questionnaire (PSQ) was deve loped by Ware and colleagues (1976), to measure patient satisfaction with health care in general and also patient satisfaction with specific features of this care (Ware, Snyder, Wright, Davies 1984). The PSQ, as well as its revised version (the 50 item PS Q III; Marshall, Hays, Ron, & Davies, 1983) and its short form (the 18 item PSQ 18; Marshall & Hays, 1994) are the most commonly used measures of patient satisfaction ( Marshall & Hays, 1994 ) In a recent literature review, the PSQ 18 was selected among th e most appropriate instruments to measure patient satisfaction because it has good internal consistency; it produces similar medians among respondents with different chronic conditions ; and it is moderately correlated to other strong measures of patient sa tisfaction (Vrijhoef, Berbee, Wagner, & Steuten, 2009). Treatment Adherence As stated above, research has empirically linked indicators of cultural ly sensitiv e health care (as defined by health care pro viders and administrators) with patient satisfaction a nd
22 t reatment adherence. Treatment adherence has been defined as the willingness and ability of patients to follow health related recommendations (e.g. exercising, dieting, attending medical appointments, and taking medication) offered to them by their heal th care provider (Jeenah, Kazadi, & Moosa, 2007; Koltun & Stone, 1986). This concept must be distinguished from patient compliance Compliance deno tes a power differential between patients and providers and places the responsibility of not following through with treatment mostly on patients (Falvo, 2004; Haynes, 2001). Despite the importance of treatment adherence to treatment success, treatment non adherence is still highly prevalent. Poor adherence translates into high rates of morbidity, mortality, and avoidable health care costs (Bosworth, 2005; Cramer et al., 2008). In the United States, poor medication adherence leads to about 125,000 deaths pe r year (Bosworth, 2005) and is the cause of 33 69% of hospital admissions (Jamil & Mills, 2010). Additionally, directly and indirectly, non adherence to treatment costs the American health care system from $100 billion to $300 billion a year (Jamil & Mills 2010). Furthermore, treatment non adherence has other u ndesirable consequences such as patient and physician frustration, incorrect diagnoses, and unnecessary treatment (DiMatteo, Giordani, Lepper, & Croghan, 2002). Measures of Treatment Adherence Tr eatment adherence has been traditionally measured through direct and /or indirect methods. Direct methods include biochemical analyses (i.e. measuring the actual levels of drugs in a patient s system through serum or urine tests) and direct clinical observa tions of patients whereas indirect methods include medication measurements (e.g. pill counts) and self report. There are challenges associated with both types of measures. Direct measures are burdensome, expensive, and are mostly limited to assessments of drug ingestion ( rather than assessment of
23 level of e ngagement in healthy diet or exercise) (Haynes, 2001; Sherbourne, Hays, Ordway, DiMatteo, & Kraviz, 1992). Furthermore, direct measures may promote an adversarial relationship between the examiner and th e patient (Sherbourne et al., 1992). Medication measurement is a widely spread method of assessing the quantity of a drug (number of pills) ingested between visits to the health care provider. This measure, however, does not address engagement in health pr omoting behaviors. Furthermore, medication measurement is labor intensive and does not provide the examiner with useful information on accuracy of dosage or timing of medication intake (Shearer & Evans, 2001). Self reports of treatment adherence are subjec tive and prone to recall and reporting bias, but they are also a fairly inexpensive and practical way of assessing treatment adherence (Bosworth, 2005; Shearer & Evans, 2001; Sherbourne et al., 1992). Treatment adherence is central to disease management s uccess. Even when a disease has properly been diagnosed and its appropriate treatment has been identified, the only way that the treatment can be effective is if patients stick to the therapeutic regimen (Haynes, 2001). Thus, treatment adherence has direct implications for treatment outcomes and patient well being. Non Patients who seek medical services but do not comply fare worse and also tend to seek furthe r medical assistance for the same illness ( i.e., tend to over utiliz e health services) (Aday, 2004; Balkrishnan, 2005; Bosworth, 2010; Cramer et al., 2008; DiMatteo, 2004). However, nonadherence to medical treatment is widespread (Bosworth, 2005; Bosworth, 2010; World Health Organization, 2003). The consequence of this is that many patients continue to suffer or die from diseases for which medical treatment has long been available (Bosworth, 2010).
24 CHAPTER 3 METHODS Participants Data for this study were c ollected from adult patients ( N = 1, 725) at 67 volunteer health care sites throughout the United States. These data were collected as part of the first phase of a larger national Patient Centered Culturally Sensitive Health Care and Health Promotion Resea rch Project (C.M. Tucker, Principal Investigator). To be enrolled in the project, participants had to: (a) be at least 18 years old, (b) have been patients at one of the health care sites for at least one year, (c) be able to communicate either verbally or in writing in Spanish or English, and (d) sign an informed consent form that documented agreement to participate in the study. Of the 67 participating health care sites recruited, 71.4% were community health care centers/clinics, 5.4% were hospitals, 7.1 % were health departments, 12.5% were private practices, and 3.6% were other types of sites (e.g. half way houses for rehabilitation). With regard to location, 50.0% of the sites were situated in the west, 30.0% in the south, 10% in the midwest, and 5.0% i n the northeast. A small percent (5.0%) were in unreported geographic locations. For the mediation analyses in this study, data from a listwise deletion subsample (adults with no missing data on any of the investigated variables) were used. Of the adults included in this subsample ( N =1,581), 32.4% were male and 65.3% were female. This gender composition is a good reflection of prior research studies with patients who utilize health care sites Specifically, in such studies, women as compared to men are more likely to regularly visit a health care provider, use medical services, and have a usual source of health care (Department of Health and Human Services, 2001; National Center for Health Statistics, 2010; Owens, 2008).
25 In the listwise subsample, the p ercentage of participants per age group investigated is as follows: 18 24 (17.0%); 25 34 (20.4%); 35 44 (21.2%); 45 54 (22.9%); 55 64 (12.6%); and 65+ years (4.7%). A few (1.3%) participants did not report their age. Race/ethnicity composition of the sampl e was as follows: 20.0% African American/Black, 32.5% White/European American, 3.8% American Indian/Native American, 3.2% Asian/Asian American/Pacific Islander, 31.0% Hispanic/Hispanic American/Latino, and 3.4% Other. Race/ethnicity was not reported by 6.1 % of participants The percentage of participants for each investigated education attainment level investigated is as follows: elementary school (4.8%), middle/junior high (9.2%), high school (35.9%), some college/technical school (28.1%), college (12.8%), and graduate school (4.4%). A small percentage (4.7%) of the sample did not provide educational data. Additional parti cipant information in Table 2 1. T o determine if the complete data sample (N= 1,725) and partial data subsample (N= 1,581) significantly differed with regard to gender, age, race/ethnicity, and/or education level, chi square analyses were conducted. Results of these analyses revealed a significant difference in age between the two samples, 2 (5) = 14.68, p < .05, with a slightly higher re presentation of 55+ year olds in the incomplete data set. There was also a significant difference in level of education between the two samples, 2 (5) = 13.53, p < .05 with a slightly higher representation of college educ ated participants in the complete data sample. There were no significant differences between the two subsamples with regard to gender or race/ethnicity ( p < .05). Instruments In the national study, patient participants anonymously completed a research participation packet that included: (a) two copies of the Informed Consent Form one for the participant to keep and one for the researchers to keep, and (b) an assessment battery (AB) Four of these questionnaires will be used to examine the variables of interest in th e present study: (a) the
26 Patient Demographic Data Questionnaire (DDQ), (b) the pilot Tucker Culturally Sensitive Health Care Clinic Environment Inventory Patient Form (T CSHCCEI PF), (c) the Patient Satisfaction Questionnaire Short Form (PSQ 18), and (d) the General Adherenc e Measure (GAM). Each of these measures is described in the following section. Participants had a choice of completing the assessment packet in Spanish or English since all patient measures had been translated into Spanish, independently back translated in to English by experienced translators, and then verified by certified translators to confirm translation reliability. The assessment battery was at an 8 th grade reading level. Patient Data Demographic Questionnaire This questionnaire (see Appendix A) was constructed by the Principal Investigator for the national study from which the data was obtained for the present study. It was used to obtain information about each patient gender, age, marital status, race/ethnicity, level of education, employment status, generation status, and household income. Tucker Cultural ly Sensitive Health Care Clinic Environment Inventory Patient Form The T CSHCCEI PF (see Appendix B) is a 25 item self report measure designed to assess of patient centered cultural sensitivity in the physical environment and policies of their health care centers. The instructions on the T CSHCCEI PF are use the provided 4 point Likert scale ( on which 1= Strongly Disagree and 4= Strong ly Agree) to rate on level of agreement that a series of health care site characteristics and policies exist at their health care site (i.e., health care center or office ) This instrument demonstrated excellent internal consistency (for this study, 96).
27 Patient Satisfaction Questionnaire Short Form (PSQ 18) The PSQ 18 (Marshall & Hays, 1994; see Appendix C) is an 18 item scale developed to measure seven different dimensions of patient satisfaction with medical care: general satisfaction (2 items) technical quality (4 items) interpersonal manner (2 items) communicati on (2 items) financial aspects (2 items) time spent with doctor (2 items) and accessibility and convenience (4 items) There is no total score For the present, only the 2 item general satisfaction subscale of the PSQ e medical care I have been receiving is just about is reverse scored). Respondents rate the items on a 5 point Likert scale (1= strongly dis agree to 5= stro ngly agree). Higher scores indicate higher patient satisfaction with the health care experienced. The general satisfaction subscale has been found to have acceptable internal Marshall and Hays (1994), co authors of the PSQ 18 SF conclude this questionnaire is appropriate for use in situations when, due to time constraints, use of its more extensive 50 item counterpart (PSQ III) would not be feasible. General Adherence Measure (GAM) T he GAM (see Appendix D) is a 5 item generic measure of treatment adherence, recommendations from their healthcare providers (DiMatteo, Hays, & Sherbourne, 1992). Ins tructions on the GAM are to rate adherence to medical treatment in the prior 12 months, using a 4 point Likert scale ( on which A general adherence score can be computed by averaging the ratings on all (five) items on the
28 GAM Higher scores indicate higher adherence to t reatment. Internal consistency reliability for year stability of .41 (DiMatteo et .65. Procedure Permission to conduct the national study, from which the data for the present study was derived was received from the Institutional Review Board at the University of Florida. Data for the national study and thus the present study were collected using a th ree step procedure. Step One: Recruitment of National Health Care Sites In Step One, health care sites to be research sites were identified and recruited. Two strategies were used for this purpose: (a) a National Health Care Site List method, and (b) a Co Investigators and Collaborators Method. The National Health Care Site List Method of identifying and recruiting research site study participants involved having the research team at University of Florida complete web searches to identify potential partic ipating sites and compil ing a database from the results of the web searches. The identified potential study sites were located in the Midwest, Northeast, South, and West regions of the United States and served predominantly ethnic/racial minorities and low income individuals. The identified hospitals, private practices, community clinics, and community centers that serve mostly primary care patients were sent an invitation letter that (a) explained the purpose and objectives of the study, (b) described pot ential benefits of participating in the study, (c) invited providers, staff, and patients at these sites to participate in the study, (c) described
29 information t o express interest in participation in the study or ask for more information about the study. Members of the research team that conducted the national study of which the present study is a part telephonically contacted on site administrators of the health care sites that responded to the letter of invitation to do the following: (a) discuss the purpose and details of the national study, (b) discuss what participation in the study would entail, and (c) address any questions about the study. Phone scripts cr eated by the research team were used during these phone meetings to standardize and maximize the effectiveness of site recruitment efforts. The Co Investigators and Collaborators method of identifying and recruiting research site study participants involve d having the co investigators for the national study telephone representatives/colleagues from various organizations that provide health care services to specific populations (i.e., Association of Asian Pacific Community Health Organization, Commission o n Minority Health, Office for the Elimination of Health Disparities, and the National Committee for Quality Assurance) for the purpose of asking them to be research collaborators Specifically the representatives/colleagues invited to be research c ollabora tors were asked to help with recruitment efforts by identifying potential participating sites throughout the United States. Those who agreed to be research collaborators were asked to and did disseminate information about the study via several national and state health and health care organization email listervs, health care forums, and mailing lists. Health care administrators identified through this method were also sent a letter of invitation and contacted telephonically, if they expressed interest in pa rticipating in the study. This lat t er recruitment strategy proved more effective than contacting sites telephonically when having no contact person at the sites.
30 The research team and on site administrators at the different sites worked collaboratively to obtain approval for each specific site to participate in the study. Sites that agreed to participate and obtained permission (from the site specific Board of Directors, Institutional Review Board (IRB), or clinic/center director) to do so signed a letter of agreement for participation in the national data collection (see Appendix E) and sent it to a designated member of the research team for the national study. Step Two: Recruitment of On Site Data Collection Coordinators and Data Collectors In step two on site administrators at each site identified the following research partners : (a) a staff person to be a Data Collection Coordinator (DCC), whose primary roles were to coordinate and assist with data collection and to correspond with the research team; and (b) two individuals (e.g. community members, office staff members, and/or graduate or undergraduate students) to be Data Collectors (DCs), whose primary responsibility in the study was to recruit participants and collect their data. The research team members for the national study trained the DCC and DCs over the phone on their roles and responsibilities in the study. The research team then mailed the DCCs at each site a box with the following recruitment and participation materials: (a) information p ackets for the Data Collection Coordinator and Data Collectors, which included scripts for recruiting participants; (b) a Health Care Site Demographic and Health Data Questionnaire (see Appendix F), used to collect overall demographic information on the pa tients and staff at each site ; (c) flyers for recruiting participants; (d) Patient Recruitment Logs, to keep track of the recruited patient participants; (e) research participation packets for each participant, which included two informed consent forms (IC Fs; see Appendix G), assessment batteries (one in Spanish and one in English), two envelopes to separately return the ICF and completed questionnaires, and a cover letter (see Appendix H) describing the study and providing instructions on how to complete t he questionnaires. DCCs
31 also received two boxes with pre paid FedEx return labels for storing and then mailing back the participation materials to the designated member of the research team that conducted the national study. Step Three: Recruitment of Pa tient Participants Data Collectors recruited patient participants by handing them the patient recruitment flyers or by posting these flyers in waiting rooms at the health care sites. DCs also used the snowballing technique of asking participants to recru it additional patients for the study. Patients who expressed interest in participating and met the inclusion criteria were each given a research participation packet by the DC. As instructed in the cover letter with in each participation packet and as instr ucted by the DC, each participant: (a) read and signed the informed consent form, (b) answered questionnaires in the assessment battery without placing their names on these questionnaires, (c) signed a Payment Release Form that included the name and addres s where they wished to have their compensation for study participation mailed and (d) returned to the DC all questionnaires in one envelope and all materials that contained their personal information in the other envelope (to protect participant confiden tiality). The DCs returned all envelopes (i.e., two envelopes per participant) to the DCC at their clinic; the DCCs, in turn, placed these envelopes in the data storage/mailing boxes. When filled, these boxes were mailed back to a designated member of th e research team conducting the national study. All data were processed in accordance with the ethical standards of the earlier mentioned Institutional Review Board (IRB). All participants were mailed a money order for $15 for their participation in the n ational study. For their study participation, e ach DCC was mailed a $50 money order, and each DC was mailed a money order in an amount based on an $8 rate per hour for a maximum of 4 hours per 4 weeks (the estimated duration of the study at each site) Con sequently, each DCC received a
32 maximum total of $128 for study participation. The total study implementation period was eight months long D ata collection lasted a total of three months at each site within the total 8 month period. All participants were c ompensated within six weeks following the end of the study at their specific health care sites.
33 Table 3 1. Descriptive characteristics of the listwise deletion s ubsample Characteristic N % Income Less than 10,000 603 38.1 10,000 20,000 363 23 20,001 30,000 196 12.4 30,001 40,000 94 5.9 40,001 50,000 53 3.4 50,001 60,000 90 5.7 Missing 182 11.5 Employment Work full t ime 499 31.6 Work part t ime 292 18.5 Do not w ork 733 46.4 Missing 57 3.6 Marital Status Single living w/o p artner 516 32.6 Single living w/partner 296 18.7 Married living w/partner 465 29.4 Married not living w/partner 61 3.9 Divorced or s eparated 136 8.6 Widow/ Widower 60 3.8 Missing 47 3
34 CHAPTER 4 RESULTS This chapter presents the results of t he analyses conducted to address the hypothesis and research question that are the focus of this study. Results include the following: (a) descriptive data for all the variables in the study based on the data for t he listwise deletion subsample (i.e., the participants for whom there are complete data sets), (b) the results of a Pearson correlation conducted to investigate the hypothesi s in this study, (c) the results of a mediation analysis conducted to address the research question in this study. Descrip tive Data for the Major Variables The mediation analyses employed in this study is parametric in nature and thus require s data to be normally distributed. Therefore, the variables of interest were examined to assess basic distributional properties and to determine if normality assumptions were met. This initial examination indicated that skewness and kurtosis w ere significant for all variables ( perceived patient centered cultural sensitivity of their health care sites [CSHCCI], general pati ent satisfaction with health care [Satisfaction], and self reported adherence to a prescribed treatment regimen [Adherence]). Given the large sample size, there was substantial power to detect even small deviations from normality. However, to facilitate an alyses with the assumption of multivariate normality (mediation), a Blom transformation was used to normalize the distribution of all variables (Blom, 1958). Through Blom transformation, each value of the item distribution is replaced by its Z score equiva lent at the same percentile on the standard normal distribution, under the assumption that the underlying true score is normally distributed. The Blom transformation indeed reduced skewness and kurtosis of the investigated variables to an acceptable level.
35 Hypothesis Testing between patient centered cultural sensitivity of their health care sites (CSHCCI) and their self reported treatment adherence (Ad herence). To test this hypothesis, a Pearson correlation analysis was conducted. Results showed a low but significant positive correlation between CSHCCI and Adherence, r = .19, p < .001. Thus, these findings provide some support for the main hypothesis of this study. Research Question Does patient satisfaction mediate the relationship between patient centered cultural sensitivity of their health care sites and their self reported adherence to a treatment regimen ? A variable may be cons idered a mediator to the extent to which it carries the influence of a given independent variable (IV) to a given dependent variable (DV). Generally speaking, mediation can be said to occur when: (1) the IV is significantly associated with the outcome vari able (DV) in the absence of the mediator, (2) the IV significantly affects the mediator, (3) the mediator has a unique effect on the outcome variable, and (4) the effect of the IV on the DV shrinks upon the addition of the mediator to the model (Baron and Kenny, 1986; Judd and Kenny, 1981). The Pearson correlation analysis conducted to test the hypothesized association between centered cultural sensitivity of their health care sites (CSHCCI) and Adherence indicated that these v ariables were significantly correlated, r = .19, p < .001. Pearson correlation analyses were also conducted to test the association between CSHCCI and general patient satisfaction (Satisfaction), and the association between Satisfaction and Adherence. Re sults indicate that patients who report higher CSHCCI also report higher levels of
36 Satisfaction ( r = .43, p < .001). Furthermore, patients who report higher levels of Satisfaction also report higher levels of Adherence ( r = .28, p < .001). Based on the r esults from the above mentioned correlation analyses, a mediation analysis the total and specific indirect effect of a causal variable X (in this study, CSHCCI) on an outcome variable Y (in this study, Adherence) through a proposed mediator M (in this study, Satisfaction) (Preacher & Hayes, 2008). CSHCCI predicts Adherence, t = 7.46, p < .001, and also Satisfaction, t = 17.61, p < .001. The mediator (Satisfaction) has a unique effect on Adherence, t = 8.99, p < .001. Finally, the effect of CSHCCI on Adherence shrinks when the mediator (Satisfaction) is introduced, t = 3.35, p < .001, but it remains significant, which indicates partial mediation. This model explains 81% of the variance in Adherence, p < .001 (Figure 4 1).
37 Table 4 1 Pearson correlations among all investigated variables P atient perceived cultural sensitivity of clinic environment Patient s atisfaction Treatment a dherence P atient perceived cultural sensitivity of clinic environment Pearson c orrelation 1 0.425** 0.188** Sig. (2 tailed) .000 .000 N 1581 1581 1581 Patient s atisfaction Pearson c orrelation 0.425** 1 0.275** Sig. (2 tailed) .000 .000 N 1581 1581 1581 Treatment a dherence Pearson c orrelation 0.188** 0.275** 1 Sig. (2 tailed) .000 .000 N 1581 1581 1581 Note. ** p < .001
38 Figure 4 1. Schematic of the mediation model tested in this study. Satisfaction Adherence CSHCCI a= .74, se= .04 b= .14, se= .02 c= .20, se= .03 .03
39 CHAPTER 5 DISCU SSION This study was conducted in response to international calls for further understanding of the factors that influence patient treatment adherence. The relationship s among patient centered cultural sensitivity of their health care ce nters (i.e. the physical and social environment and clinic policies), satisfaction with their care and self reported levels of treatment adherence w ere explored. This study is unique in that the measure employed to assess patient centered cultural sensiti vity of health care environments (T CSHCCEI PF) consists of items that a national sample of culturally diverse patients identified as indicators of patient centered cultural sensitivity; in other words, the items in the measure consist of health care cente r physical environment characteristics and policies that enable culturally diverse patients to feel comfortable with, respected during, and trusting of the health care they experience (Herman et al., 2007). Prior to th e present study, there was little emp irical evidence linking patient perceived indicators of organizational/systemic cultural sensitivity with satisfaction with care and treatment adherence. Consistent with the hypothesis set forth in this study results from this study indicate that patient centered cultural sensitivity of their health care sites is reported level of treatment adherence. These findings are also consistent with previous research indicating that overall provision of c ulturally sensitive health care directly impacts understanding of treatment and treatment adherence ([AHRQ], 2011; Andrulis et al., 2010; Flores, 2006; Tucker et al., 2011). Results from investigating the research question set forth in this study indicat e that the relationship between centered cultural sensitivity of their health care sites and self reported treatment adherence is partially mediated by patient satisfaction with
40 health care. Specifically, it was found that the more patient centered cultural sensitivity patients perceived in their health care sites, the more satisfied they were with the health care they received; and the more satisfied they were with the health care received, the more they adhered to their treatm ent regimens. Although, the relationships between organizational cultural sensitivity and patient satisfaction and between patient satisfaction and treatment adherence had been investigated before, the introduction of satisfaction with care as a mediator b etween organizational cultural sensitivity and treatment adherence is novel to the health care literature. Implications While treatment adherence is a behavioral problem observed at the patient level, the contributors to treatment adherence/ non adherence f ar exceed patient characteristics. The evidence in this study indicating that patient perceived cultural sensitivity of health care centers is directly associated with treatment adherence has several implications. The first implication is that interventio ns that promote patient centered culturally sensitive physical environment characteristics and policies in health care sites might be key to increasing treatment adherence of patients at these health care sites which in turn might promote positive health outcomes among these patients According to the World Health Organization (2003), ccess to medication is clearly not the only precursor to successful disease management. Another implication of the present study is that assessing the level of patient centered cultural sensitivity patients perceive in their health care sites might provid e guidance to health care administrators as to how to make their sites more culturally sensitive from the perspective of patients. The success of patient centered health care interventions is organized around empowering patients to be active participants a nd decision makers in their health care (U.S.
41 Department of Health and Human Services, 2008). Regular assessment of sites patient centered cultural sensitivity requires empowering patients to routinely provide this data. Enabling participants to provide a dministrators with feedback on the level of patient centered cultural sensitivity they perceive in their sites might be helpful to ensure that patients receive care that is high quality and that helps them feel comfortable, trusting, and respected. Final implication s concern the role of counseling psychologists who could, for instance, be involved in the training of health care administrators on how to best evaluate cultural sensitivity of health care sites. Given their quantitative and qualitative resear ch skills and their multicultural competence and sensitivity, c ounseling psychologists are at a particularly privileged position to train administrators on how to empower patients to provide feedback to sites on the level of patient centered cultural sensi tivity they perceive in their health care. Counseling psychologists are also well suited to train administrators on how to develop policies and interventions that meet the feedback generated by patients. Additionally, as trained facilitators of communicati on, counseling psychologists can directly coach patients on how to share with their providers and administrators how the cultural sensitivity of their health care educ ate patients on how to respond most effectively when they perceive the level of organizational cultural sensitivity of their sites as inappropriate and desire changes be made. Limitations Despite the importance and methodological strengths of this study, its results must be interpreted with caution given its limitations. The first limitation of this study is the fact study participants were not randomly selected. This study had a volunteer, arbitrarily selected patient sample. Study r esearchers made effor ts to include low income, racial/ethnic minority patients as such patients are typically not adequately included in health care quality and outcomes research
42 Yet, low income and racial/ethnic minority patients have been documented to receive lower quality health care. The second limitation of the present study is that its sample was limited to individuals who were already receiving health care at the health care sites involved in this study Patients who did not receive regular health care or were dissati sfied enough with the care received to not return to the sites may not have been adequately represented in this sample. This may further limit the The third limitation of this study is that the participating healt h care sites were not randomly selected; instead, the participating sites volunteered to participate in this study in response to a participation invitation that was sent based on multiple site recruitment strategies including snowballing ( i.e., having par ticipating sites invit ing other nearby sites to be study participants). Given the difficulty involved in recruiting health care sites to be research participants, use of multiple recruitment strategies as done in the present study is not unusual. H ealth ca re site recruitment in the present study and in similar studies is difficult because of lack of familiarity with research procedures and goals among health care site administrators and staff lack of time and/or knowledge to respond to research requests an d/or to obtain research approval at their health care site and concerns about the impact of research proposed on site patient relationships (Asch, Connor, Hamilton, and Fox, 2001). A final limitation of this study is that all measures were self reports. Some of the potential problems that come with using self report measures include: (a) partial/random completion of questionnaires by patients in order to receive financial compensation; and (b) provision of er, data collection for this study was conducted in an anonymous way to encourage participants to provide honest answers. Furthermore, self
43 report instruments have been found reliable in health care quality research in the past (Mason, 1995). Future Direc tions Despite its limitations, this study centered cultural sensitivity of health care sites is positively linked to their treatment adherence and that this linkage partially occurs through their satisfaction wit h health care experienced. Support is provided for future research similar to the present study with randomly selected health care sites and randomly selected patients from within these clinics. Support is also provided for future research studies that inc lude patient objective health outcome data that is not difficult to obtain such HbAlc levels.
44 APPENDIX A PATIENT DEMOGRAPHIC DATA QUESTIONNAIRE Directions : Please answer the questions below by filling in the blank or shading in the circle next to the a nswer you choose like this: 1. What is your gender? Male Female 2. What is your age ? Age 18 24 Age 45 54 Age 25 34 Age 55 64 Age 35 44 Age 65 or older 3. Which of the follow ing best describes you? Single, living without a partner Married not living with a partner Single, living with a partner Divorced or separated Married, living with a partner Widow/Widower 4. Please shade in one or more of the circles below t hat best describes your race/ethnicity: African American/Black American Hispanic/Hispanic American/Latino(a) White/European American Other American Indian/Native American (please specify: _____________________) Asian/Asian American/ Pacifi c Islander 5. If Hispanic/Latino or Asian/Asian American, please shade in one or more of the circles that best describes your ethnicity: If Hispanic/Latino(a) shade below: If Asian/Asian American shade below: Cuban/Cuban American Chinese/Chinese Am erican Mexican/Mexican American/Chicano(a) Vietnamese/Vietnamese American Puerto Rican Filipino/Filipino American Other Hispanic/Latino(a) (please specify: _____________________) Other Asian (please specify: _____________________) 6. What is the highest level of education that you have completed? Elementary School Some College/Technical School Middle/Junior High School College High School Graduate School 7. What is your employment status?
45 Work Full Time Work P art Time Do Not Work 8. What is your yearly household income? Less than $10,000 $30,001 40,000 $10,000 20,000 $40,001 50,000 $20,001 30,000 $50,001 60,000 9. How religious are you? Not At All Religious Religious Slightly Relig ious Very Religious Somewhat Religious 10. How spiritual are you? Not At All Spiritual Spiritual Slightly Spiritual Very Spiritual Somewhat Spiritual 11. How often do you pray/meditate? Never Often Rarely Very Often Sometim es 12. Where do you usually receive your health care services? Health Care Center/Clinic Private Practice Hospital Other Health Department (please specify: ________________) 13. What is the gender of the primary health care provider that y ou see most often? Male Female 14. What do you think is the age of the health care provider that you see most often? Age 18 24 Age 45 54 Age 25 34 Age 55 64 Age 35 44 Age 6 5 or older 15. What is the race/ethnicity of the health care provider that you see most often?
46 African American/Black American Hispanic/Latino(a) White/European American Other American Indian/Native American (please specify:_____________ ___) Asian/Asian American 16. H ow many times each year do you see the health care provider that you see most often? 1 time 6 to 10 times 2 to 5 times Over 10 times 17. Where were you born? In the United States In Another Country 18. Where were your parents born? In the United States In Another Country 19. Do you have children? Yes (How many? _________) No 20. If so, do your children live with you? Yes No 21. Where in the United States is your comm unity located? Northeast ( Pennsylvania to Maine) Southeast ( West Virginia to Texas) Midwest ( Ohio to Kansas) West (New Mexico to California, including Hawaii and Alaska) 22. In general, how would you describe your health? Excellent Fair Very Good Poor Good 23. What is your height? _______________ feet and _______________ inches 24. What was your weight the last time you were weighed? _______________ pounds
47 APPENDIX B TUCKER CULTURALLY SE NSITIVE HEALTH CARE CLINIC ENVIRONME NT INVENTORY PATIENT FORM Directions: Please fill out this part of the survey using the following steps: (1) Please rate how much you agree that the following health care center characteristics exist at your health care center or office. Please use a ra (2) Now take a moment and think about the to you by shading only the circles in the gray section. Shade in the circles below like this:
49 APPENDIX C PATIENT SATISFACTION QUESTIONNAIRE SHORT FORM (PSQ 18) Directions : The following statements are some things people say about medical care. Please read each one carefully, keeping in mind the medical care you are receiving now. (If you have not received care recently, think about what you would expect if you needed care today.) There is no right or wrong answer. We are interested in your feelings, good an d bad about the medical care you have received. Shade in the circle beneath the rating that you choose like this: How strongly do you AGREE or DISAGREE with each of the following statements: Strongly Agree Agree Uncertain Disagree Strongly Disagre e 1. Doctors (health care providers) are good about explaining the reason for medical tests. 2. needed to provide complete medical care. 3. The medical care I have been rece iving is just about perfect. 4. Sometimes doctors (health care providers) make me wonder if their diagnosis is correct. 5. I feel confident that I can get the medical care I need without being set back financially. 6. When I go f or medical care, they (health care providers) are careful to check everything when treating and examining me. 7. I have to pay for more of my medical care than I can afford. 8. I have easy access to the medical care specialists I need. 9. Where I get medical care, people have to wait too long for emergency treatment.
50 Reprinted with permission from RAND Corporation. 10. Doctors (health care providers) act too businesslike and impersonal towards me. 11. My doctors (health care providers) treat me in a very friendly and courteous manner. 12. Those who provide my medical care sometimes hurry too much when they treat me. 13. Doctors (health care providers) sometimes ignore what I tell them. 14. I have some doubts about the ability of the doctors (health care providers) who treat me. 15. Doctors (health care providers) usually spend plenty of time with me. 16. I find it hard to get an appointment for medical care right away. 17. I am dissatisfied with some things about the medical care I receive. 18. I am able to get medical care whenever I need it.
51 APPENDIX D GENERAL ADHERENCE ME ASURE Directions : Please tell us how o ften was each of the following statements true for you during the the circle beneath the answer you choose like this:
52 APPENDIX E HEALTH CARE SITE PAR TIC IPATION AGREEMENT CO NTRACT HEALTH PROMOTION SITE AGREEMENT STATEMENT OF TERMS 1. TERMS _________________________ hereby agrees to serve as a Health Promotion Site for the Family Health Self Empowerment (FHSE) project. As a health promotion site, ___________ _____________ agrees to allow project participants to access their facility during the term of the project. This will include access to a scale 2. COMPENSATION Health promotion site will be compensated in the amount of $100 to be paid at the end of the term of the agreement. Health promotion site will also be given a scale that can be retained by the site after the program.
53 APPENDIX F HEALTH CARE SITE DEM OGRAPHIC AND HEALTH DATA QUESTIONNAIRE Directions: Please answer the questions below. If you have troubl e understanding a question, answer it to the best of your ability. Shade in the circle beneath the answer that you choose like this: 1. Does your agency (health care center) utilize interpreters to work with non English speaking persons? NOT AT ALL SELDOM SOMETIMES OFTEN 2. Does your agency (health care center) subscribe to publications (local or national) in order to stay abreast of the latest information about populations of color? NOT AT ALL SELDOM SOMETIMES OFTEN 3. Does agenc y (health care center) staff regularly attend cross cultural workshops? NOT AT ALL SELDOM SOMETIMES OFTEN 4. Are there people of color on the staff of your agency (health care center)? NONE A FEW SOME MANY 5. Does your agency (health care center) provide training that h ESH s staff work with people of color? NOT AT ALL SELDOM SOMETIMES OFTEN 6. Does your agency (health care center) emphasize active recruitment of people of color? NONE A LITTLE SOME A LOT 7. How well h as your agency (health care center) been able to retain people of color on its staff?
54 NOT AT ALL BARELY FAIRLY WELL VERY WELL 8. Does your agency (health care center) staff routinely discuss barriers to working across cultures? NOT AT ALL SELDOM SOMETIMES OFTEN 9. Does your agency (health care center) convene or reward activities that promote learning new languages relevant to the communities of color that the agency (health care center) serves? NOT AT ALL SELDOM SOMETIMES OFT EN ORGANIZATIONAL POLICY AND PROCEDURES Currently No Policy Considering Policy Writing Formal Policy Policy In Place a. Use culture specific assessment instruments for diagnosis ? b. Use culture specific treatment approaches ? c. Envision community empowerment as a treatment goal ? d. Review case practice on a regular basis to determine its relevancy to clients (patients) of color ? e. Provide or facilitate c hild care ? f. Provide or facilitate transportation (e.g., bus tickets, ride sharing) ? g. Allow access after regular business hours (e.g. through message beeper, agreements with crisis providers, etc.) ? h. Specifically consider culture i n service plans ? i. Conduct outreach to community based organizations, service agencies, natural
55 hESHers, or extended families ? j. Take referrals from non traditional sources ? k. Translate agency (health care center) materials into langua ges that reflect the linguistic diversity in your service area ? l. Advocate for better quality of life for persons of color in addition to providing services ? 10. In general, how well are policies communicated to agency (health care center) sta ff? NOT AT ALL BARELY FAIRLY WELL VERY WELL 11. Is information on the ethnicity or culture of clients (patients) specifically recorded in your NOT AT ALL BARELY FAIRLY WELL VERY WELL REACHIN G OUT TO COMMUNITIES 13. How well do you assure that communities of color are aware of your program and the services and resources you offer? NOT AT ALL BARELY FAIRLY WELL VERY WELL 14. Does your organization or agency (health care center) reach o ut to NEVER SELDOM SOMETIMES REGULARLY a. Churches and other places of worship, clergy persons, ministerial alliances, or indigenous religious leaders in communities of color ? b. Medicine people, health clinics, chiropractors, naturopaths, he rbalists, or midwives that provide service in communities of color ? c. Publishers, broadcast or other media sources within communities of color ?
56 d. Formal entities that provide services ? e. Cultural, racial, or tribal organizations where people of color are likely to voice complaints or issues ? f. Business alliances or organizations in communities of color ? 15. Are people of color depicted on agency (health care center) brochures or other print media? NOT AT ALL SELDO M SOMETIMES OFTEN 16. Does your agency (health care center) participate in cultural, political, religious, or other events or festivals sponsored by communities of color? NOT AT ALL SELDOM SOMETIMES OFTEN Directions: Please answer the questions b elow. Shade in the circle next to the answer you choose like this: 1. Which of the following best describes the health care site where you work? Community Health Care Center/Clinic Hospital Health Department Private Practice Other (ple ase specify ___________________________________) 2. Where in the United States is your health care site located? Northeast ( Pennsylvania to Maine) Midwest ( Ohio to Kansas) Southeast ( West Virginia to Texas) West ( New Mexico to California, includ ing Hawaii and Alaska)
57 Other (please specify ___________________________________) 3. Directions: Please fill in the following table with information pertaining to your health care site. Total Number of Patients Served Average Total Number of Health Ca re Providers with Patient Interaction Average Total Number of Front Office Staff with Patient Interaction Yearly Weekly Yearly Weekly Yearly Weekly
58 APPENDIX G PATIENT INFORMED CON SENT FORM Informed Consent to Participate in Research and Author ization for Collection, Use, and Disclosure of Information for Phase I Patient Participants PLEASE SIGN BOTH COPIES OF THIS FORM AND RETURN ONLY ONE TO THE RESEARCHERS You are being asked to take part in a research study. This form provides you with infor mation about the study and seeks your permission for the collection, use, and disclosure of your information necessary for the study. The Principal Investigator (the person in charge of this research) or a representative of the Principal Investigator will also describe this study to you and answer all of your questions. Your participation is entirely voluntary. Before you decide whether or not to take part, read the information below and ask questions about anything you do not understand. If you choose not to participate in this study you will not be penalized or lose any benefits that you would otherwise be entitled to. 1. Name of Participant ("Study Subject"): ______________________________________________ (Please put your first and last name here) 2. Title of Research Study: Patient Centered Culturally Sensitive Health Care and Health Promotion Project 3. Source of Funding or Other Material Support: This research is being funded by the Rob ert Wood Johnson Foundation. 4. Purpose of the research study: The purpose of this study is to find out about how patients view the attitudes and behaviors of their health care providers and office staff, and to find out about how patients view the character 5. What you will be asked to take part in the study:
59 You will be asked to fill out a set of questionnaires. Specifically, one questionnaire will ask how much you agree or disagree with s tatements that describe certain behaviors and attitudes of your health care provider and office staff. It will also ask you how much you agree or disagree with sk about your lifestyle and culture, your relations with health care providers, your stress level, and your health behaviors. You will also be asked to complete a questionnaire about yourself which asks about your age, gender/sex, race, years of having any long term health problems, any communication problems the past year. You will also be asked to provide your name and address below for payment purposes. Filling out all of the questionnaires should take less than one hour. Please try to complete the questionnaires by filling them out at the health care clin leave. One of our research assistants will be at your clinic to h ESH you fill out the questionnaires if you need any h ESH or have any questions. You will be paid for your participation. To see how much money is paid for participation, see Section 7 of this form 6. Possible Risks and Benefits: We do not expect any risk to you for participating in this study. There are no known risks to completing the questionnaires. We do not anticipate that you will benefit dir ectly by participating in this project. 7. Compensation: You will be paid $15 compensation in the form of a money order for participating in this research. This compensation will be mailed to you at the address you provide below. 8. Confidentiality: Your iden tity will be kept confidential to the extent provided by law. Your name will not be placed on the questionnaires. Instead, researchers will place a code number on the surveys that you fill out. Your questionnaires will be immediately separated from any doc uments that may be able to identify you (like your signed informed consent form) and locked in separate filing cabinets in room 293 at the Department of Psychology at the University of Florida. Your individual responses will only be seen by the researcher s who are conducting this study and only they will know whether you are participating in the study or not. Also, your answers on the questionnaires will be completely anonymous. 9. Voluntary participation: Your participation in this study is completely volu ntary. There is no penalty for not participating. In addition you may stop completing the questionnaires if it makes you feel uncomfortable, and you may skip any question that you do not wish to answer. 10. Right to withdraw from the study: You have the right to withdraw from the study at anytime without consequence, but you will only receive your gift card or money order once we receive your completed set of questionnaires. Whom to contact if you have questions about the study: Carolyn M. Tucker, Ph.D. Dist inguished Alumni Professor Joint Professor of Psychology and
60 Professor of Community Health and Family Medicine Professor of Pediatrics (Affiliate) 1 352 273 2153 or (Toll free) 1 866 290 5770 Whom to contact about your rights as a research participa nt in the study: University of Florida Institutional Review Board Office Box 112250 University of Florida Gainesville, FL 32611 22250 (352)392 0433 Agreement: I have read the procedure described above. I voluntarily agree to participate in the procedure and I have received a copy of this description. Participant:_________________________________ Date:___________ Investigator:________________________________ Date:___________ Name and Address for Payment: Please write your name and the address where you would like your gift card to be mailed: Name: _____________________________________ Address Line 1: _____________________________________ Address Line 2: _____________________________________ City, State, Zip _________________________________ ____ *Please place the first copy of this form in the white envelope and keep the second copy for your records
61 APPENDIX H PARTICIPANT PACKET C OVER LETTER Dear Patient: Patient Centered Culturally Sensitive Health Care and Health Promotion Project. patients view the attitudes and behaviors of their health care providers and office staff, and to find out about how patients view the charac offices. Participation in this study involves completing the attached questionnaires, which should take less than one hour. The study is designed to make sure that your responses will be an onymous. Your individual information and responses will not be seen by anyone other than the researchers who are conducting this study. Also, your name will not be placed on the questionnaires that you complete. In addition you may stop completing the ques tionnaires if it makes you feel uncomfortable, and you may skip any question that you do not wish to answer. Participation in this study is completely voluntary. We believe that the information you give us is very important because it may hESH us improve the health care that you and other patients like you may receive from health care providers. If you decide to participate in this study, you can indicate your willingness to do so by signing the informed consent form and completing the attached questionna ires. If you would like hESH completing the questionnaires, you can ask a family member or friend to read them to you and record your responses on the form; however, they will not be compensated for doing so. Please keep a copy of the informed consent for yourself, and place the signed copy in the white envelope and seal it. Then place the set of completed questionnaires in the brown envelope and seal it. Please hand the two sealed envelopes to the person that approached you about participating in this stud y, or place it in the data collection box near the front desk. For your participation you will be mailed a $15 gift card that can be used at most stores or a $15 money order (but not both). You will receive this gift card or money order within three weeks after I receive your signed informed consent form and completed questionnaires. If you have any questions or desire further information about this study, please call my research associates at (toll free) 1 866 290 5770 ext. 255. If you have any concerns about this study please call the University of Florida Institutional Review Board office at (352) 846 1494. If you agree to be a research participant, thank you for agreeing to do so. Sincerely, Carolyn M. Tucker, Ph.D. Distinguished Alumni Professor J oint Professor of Psychology and Professor of Community Health and Family Medicine Professor of Pediatrics (Affiliate)
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67 BIOGRAPHICAL SKETCH Julia Roncoroni was born in Buenos Aires, Argentina, in January 1982. She completed an Associate of Arts degree in preschool and kindergarten teaching in 2005 and an Associate of Arts degree in English, with an emphasis on elementary school teaching, in 2006. In 2007, she moved to the United States In 2010, she graduated Summa c um Laude Bachelor of Arts in psychology, with a minor in counseling and social change, from San Diego State Univers ity. I mmediately after obtaining her b doctoral degree in counseling psychology from University of Florida. In 2012, she obtained her Master of Science in p sy chology at University of Florida.