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Identifying and addressing health disparities in black older adults with osteoarthritis

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Title:
Identifying and addressing health disparities in black older adults with osteoarthritis
Physical Description:
Book
Language:
English
Creator:
Mingo, Chivon
Publisher:
University of South Florida
Place of Publication:
Tampa, Fla
Publication Date:

Subjects

Subjects / Keywords:
Arthritis intervention
Arthritis self-management program
Cultural sensitivity
Dissertations, Academic -- School of Aging Studies -- Masters -- USF   ( lcsh )
Genre:
non-fiction   ( marcgt )

Notes

Abstract:
ABSTRACT: Osteoarthritis (OA), the most common form of arthritis in older adults, often results in pain, disability and poor psychological well-being. Compared to White adults, Black adults consistently report more pain, more activity limitations, and have different perceptions about OA. Racial disparities also exist in treatments, and prevalence of arthritis. It is imperative to have effective interventions and treatment options for older Blacks. Yet, few arthritis interventions have included Black participants in their samples, and nearly all of those have failed to report separate analyses indicating the effectiveness for Black adults, thus leaving a gap in the literature. The purpose of this study is to begin to identify factors needed to design arthritis interventions that will reduce barriers and increase appeal to Blacks. The present dissertation consists of one study with two related parts. The first part consists of a needs assessment that examined intervention preferences, barriers to healthcare, knowledge about interventions and care, utilization, and health beliefs among Black and White adults with self-reported physician-diagnosed OA. The second part evaluated materials used in an existing arthritis intervention for acceptability. The study was based on the Arthritis Self Management Program (ASMP). Frequencies were examined to determine needs related to arthritis healthcare of Blacks and Whites recruited from the community. Independent samples t-tests and Pearson's Chi-square analyses were examined to determine group differences between Blacks and Whites. Blacks were more likely to report cost, lack of trust, fear of being the only person of their race, lack of recommendation from their doctor, and lack of recommendation of a family or friends as barriers to participating in arthritis interventions. In addition, Blacks were more likely to prefer the intervention content, structure and delivery, and arthritis resources presented in the needs assessment in comparison to Whites. As for the evaluation of the intervention materials, Blacks and Whites were similar on most sections. Based on our findings we suggest that practical adaptations (e.g., cost) be made to existing arthritis interventions to increase cultural sensitivity. Such adaptations have the potential to minimize barriers and offer a program that would be appealing to Blacks with OA.
Thesis:
Dissertation (PHD)--University of South Florida, 2010.
Bibliography:
Includes bibliographical references.
System Details:
Mode of access: World Wide Web.
System Details:
System requirements: World Wide Web browser and PDF reader.
Statement of Responsibility:
by Chivon Mingo.
General Note:
Title from PDF of title page.
General Note:
Document formatted into pages; contains X pages.

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University of South Florida
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usfldc doi - E14-SFE0004577
usfldc handle - e14.4577
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SFS0027892:00001


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ABSTRACT: Osteoarthritis (OA), the most common form of arthritis in older adults, often results in pain, disability and poor psychological well-being. Compared to White adults, Black adults consistently report more pain, more activity limitations, and have different perceptions about OA. Racial disparities also exist in treatments, and prevalence of arthritis. It is imperative to have effective interventions and treatment options for older Blacks. Yet, few arthritis interventions have included Black participants in their samples, and nearly all of those have failed to report separate analyses indicating the effectiveness for Black adults, thus leaving a gap in the literature. The purpose of this study is to begin to identify factors needed to design arthritis interventions that will reduce barriers and increase appeal to Blacks. The present dissertation consists of one study with two related parts. The first part consists of a needs assessment that examined intervention preferences, barriers to healthcare, knowledge about interventions and care, utilization, and health beliefs among Black and White adults with self-reported physician-diagnosed OA. The second part evaluated materials used in an existing arthritis intervention for acceptability. The study was based on the Arthritis Self Management Program (ASMP). Frequencies were examined to determine needs related to arthritis healthcare of Blacks and Whites recruited from the community. Independent samples t-tests and Pearson's Chi-square analyses were examined to determine group differences between Blacks and Whites. Blacks were more likely to report cost, lack of trust, fear of being the only person of their race, lack of recommendation from their doctor, and lack of recommendation of a family or friends as barriers to participating in arthritis interventions. In addition, Blacks were more likely to prefer the intervention content, structure and delivery, and arthritis resources presented in the needs assessment in comparison to Whites. As for the evaluation of the intervention materials, Blacks and Whites were similar on most sections. Based on our findings we suggest that practical adaptations (e.g., cost) be made to existing arthritis interventions to increase cultural sensitivity. Such adaptations have the potential to minimize barriers and offer a program that would be appealing to Blacks with OA.
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Identifying and Addressing Health Disparities in Black Older Adults with Osteoarthritis by Chivon A. Mingo A dissertation submitted in partial fulfillment of the requirements for the degree of Doctor of Philosophy School of Aging Studies College of Behavioral and Community Sciences University of South Florida Co-Major Professor: Jessica M. McIlvane, Ph.D. Co-Major Professor: William E. Haley, Ph.D. Victor Molinari, Ph.D. Brent J. Small, Ph.D. Tamara A. Baker, Ph.D. Date of Approval: July 9, 2010 Keywords: arthritis intervention, arthritis se lf-management program, cultural sensitivity Copyright 2010, Chivon A. Mingo

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Dedication I dedicate this doctoral dissertation to the following: To my grandfather, Samuel Terry, a 91 y ear old that still works every day. You provided me with a clear example of persever ance, strength and tena city. You taught me the importance of working hard and staying committed to the things that were important to me. Thank you for providing me with the le ssons that fueled my energy to complete this dissertation. To my mother, Rosia Ruggiero, my rock, my friend, I love you more than I could ever express. You have always believed, ev en when I didn’t, that I would not only meet but exceed every goal I set. I can still h ear your voice, “Chivon you can do this, now hang up and get to work. Love you!” Thank you for pushing me to see it through. To my big sister, Rhonda Mingo, You have always been the person I look up to. Thanks for being a great role model. I onl y hope to make you as proud as you make me. To my stepfather, John Ruggiero, thank you for the many sacrifices you made for me simply out of love. To Vonetta Greene and Stephanie Clough, where would I be without you girls? Thank you for listening to me and supporting me even thorough my insanity. Your unconditional friendship will forever be appreciated. To Robert and Brenda Fruster, my past ors, thank you for your endless prayers and never ending love.

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Acknowledgments It is with great pleasure and honor to acknowle dge with deep gratitude those who made this dissertation possible: Dr. Jessica M. McIlvane: Thank you for your invaluable mentorship and friendship. You have always challenged me to think and perform academically beyond what I felt I was capable of doing while at the same time teaching me to keep in perspective the important things of life. I am sincerely gr ateful to have had the opportunity to be your student. Dr. William E. Haley: Thank you for believing in me and embracing my research ideas. You kept me motivated and eager to ex cel. I have sincerel y benefited from your insight, guidance and support. I am deeply grateful to have had you as a mentor. Dr. Francis J. Keefe: Thank you for gene rously sharing your time and expertise to better my work. The final project was substant ially improved as a resu lt of your guidance. Dr. Brent J. Small: Thank you for your patience and genuine concern for my academic growth. Dr. Tamara A. Baker: Thank you for your guidance, encouragement, and most of all for being a great example for me to follow. I admire your strength, courage, and wisdom. Dr. Victor Molinari: Thank you for your feedback and encouragement. Your expertise has been critic al in the development of this research study.

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Dr. Cathy McEvoy: Thank you for having a listening ear and an answer to every possible question I could ask. You’ve always seen the best in me and for that I am appreciative. SAS Friends: You are dear to my heart. Thank you for making the School of Aging Studies a wonderful environment to work and study. SAS Faculty and Staff: Thank you for your support and friendship. McKnight Doctoral Fellowship Family: Thank you for showing me the importance of racial/ethnic minorities, such as myself pursuing a degree in hi gher education and an academic career. Diverse science needs a divers e work force. Thank you for providing me a comfortable atmosphere to develop adequate research skills. Your mentorship has been invaluable. Shanti Herpal: Thank you for your assistan ce with both the data collection and data entry. Family and Friends: I wish I had eno ugh space to name each and every person who has been there for me through this process. However, you know who you are. Thank you for your prayers, love, and support. I am ex tremely grateful to have you in my life. Recruitment Sites and Community Volunteers: Thank you for allowing me into your facilities and communities to recruit participants for my research, and thank you to those who participated in the study. It was truly through you that th is project was made possible.

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i Table of Contents List of Tables ................................................................................................................ ..... iii Abstract ...................................................................................................................... ........ iv Chapter One: Background ....................................................................................................1 Overview ..........................................................................................................1 Literature Review.....................................................................................................7 Health Disparities.........................................................................................7 Access ..........................................................................................................9 Utilization ..................................................................................................11 Quality of Healthcare .................................................................................13 Recruitment and Retention ........................................................................16 Arthritis Health Disparities ...................................................................................18 Arthritis Interventions ............................................................................................24 Future Directions ...................................................................................................27 Research Objectives/ Research Questions .............................................................27 Chapter Two: Research Methods .......................................................................................31 Needs Assessment ..................................................................................................31 Participants .................................................................................................31 Procedure ...................................................................................................32 Measures ....................................................................................................32 Demographics ................................................................................33 Socioeconomic Status ....................................................................33 Health Status ..................................................................................33 Knowledge and Beliefs ..................................................................34 Potential Barriers ...........................................................................34 Arthritis Intervention Preferences .................................................36 Utilization Patterns.........................................................................36 Data Analysis ............................................................................................37 ASMP Toolkit Evaluation......................................................................................39 Participants .................................................................................................39 Procedure ...................................................................................................39 Measures ....................................................................................................40 Demographics ......................................................................................40 Socioeconomic Status ..........................................................................40 ASMP Toolkit ......................................................................................40

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ii Evaluation of Materials ........................................................................41 Data Analysis ............................................................................................42 Chapter Three: Results .......................................................................................................4 3 Needs Assessment ..................................................................................................43 Sample Characteristics ...............................................................................43 Arthritis Knowledge and Beliefs ...............................................................43 Potential Barriers .......................................................................................45 Arthritis Intervention Preferences ..............................................................49 Utilization Patterns.....................................................................................52 ASMP Toolkit Evaluation......................................................................................55 Sample Characteristics ...............................................................................55 Evaluation of Materials ..............................................................................56 Chapter Four: Discussion ...................................................................................................63 Knowledge and Beliefs ..........................................................................................63 Potential Barriers ...................................................................................................64 Arthritis Intervention Preferences ..........................................................................68 Utilization Patterns.................................................................................................70 ASMP Toolkit Evaluation ......................................................................................71 Chapter Five: Conclusions .................................................................................................73 Implications and Recommendations ......................................................................74 Study Limitations ...................................................................................................81 Future Directions ...................................................................................................84 References .................................................................................................................... ......87 Appendices .................................................................................................................... .....99 Appendix A: Needs Assessment Questionnaire ..................................................100 Appendix B: ASMP Toolkit Evaluation ..............................................................122 Appendix C: Progressive Musc le Relaxation CD Script .....................................147 Appendix D: Guided Imagery CD Script .............................................................150 About the Author ................................................................................................... End Page

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iii List of Tables Table 3.1 Needs Assessment Sample Characteristics ................................................44 Table 3.2 Arthritis Knowledge and Beliefs ..............................................................45 Table 3.3 Barriers to Participation in ASMP (community-based intervention) ........48 Table 3.4 Barriers to Participati on in ASMP Toolkit (home based intervention) ...............................................................................................50 Table 3.5 Preferences on Intervention Content ..........................................................51 Table 3.6 Preferences on Interv ention Structure and Delivery ..................................53 Table 3.7 Preferences of Resour ces for Arthritis Information ...................................54 Table 3.8 Familiarity with the Arthritis Foundation and Programs ..........................55 Table 3.9 ASMP Sample Characteristics ...................................................................56 Table 3.10 Acceptability of ASMP Tool kit (action plan and exercise CD) ................57 Table 3.11 Acceptability of ASMP Tool kit (problem solving and exercise guide) .........................................................................................................58 Table 3.12 Acceptability of ASMP (com munity resources and relaxation CD) .........59 Table 3.13 Acceptability of ASMP Tool kit (healthy eating and imagery CD) ...........61 Table 3.14 Acceptability of AS MP Toolkit (in general) ............................................62 Table 5.1 Race Differences between Blacks and Whites on Intervention Preferences .................................................................................................76 Table 5.2 Race Differences between Blacks and Whites on ASMP Toolkit .............77

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iv Identifying and Addressing Health Disparities in Black Older Adults with Osteoarthritis Chivon A. Mingo Abstract Osteoarthritis (OA), the most common form of arthritis in older adults, often results in pain, disability and poor psychologi cal well-being. Compar ed to White adults, Black adults consistently report more pain, more activity limitations, and have different perceptions about OA. Racial disparities also exist in tr eatments, and prevalence of arthritis. It is imperative to have effectiv e interventions and treatment options for older Blacks. Yet, few arthritis interventions have included Black participants in their samples, and nearly all of those have failed to report separate analys es indicating the effectiveness for Black adults, thus leaving a gap in the lite rature. The purpose of this study is to begin to identify factors needed to design arthriti s interventions that will reduce barriers and increase appeal to Blacks. The present dissertation consists of one study with two related parts. The first part consists of a needs asse ssment that examined interven tion preferences, barriers to healthcare, knowledge about in terventions and care, utiliza tion, and health beliefs among Black and White adults with self-reported physician-dia gnosed OA. The second part evaluated materials used in an existing arth ritis intervention for acceptability. The study was based on the Arthritis Self Manageme nt Program (ASMP). Frequencies were examined to determine needs related to arthritis healthcare of Blacks and Whites

PAGE 9

v recruited from the community. Independent samples t-tests and Pearson’s Chi-square analyses were examined to determine gr oup differences between Blacks and Whites. Blacks were more likely to report cost, lack of trust, fear of being the only person of their race, lack of recommendation from th eir doctor, and lack of recommendation of a family or friends as barriers to participating in arthritis interventions In addition, Blacks were more likely to prefer the intervention content, structure and delivery, and arthritis resources presented in the needs assessment in comparison to Whites. As for the evaluation of the intervention materials, Blacks and Whites were similar on most sections. Based on our findings we sugge st that practical adaptati ons (e.g., cost) be made to existing arthritis interventions to increase cultural sensitivity. Such adaptations have the potential to minimize barriers and offer a progr am that would be appealing to Blacks with OA.

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1 Chapter One: Background Overview The research conducted for this dissertati on has been organized as one study with two parts. The overarching theme of the res earch study was to get a better understanding of arthritis health disparities and identify ways to address such health disparities. Health disparities are a growing public health con cern. The study focused broadly on arthritis health disparities in symptoms and service utilization between Bl ack and White adults, while identifying effective ways to begin to overcome the intergroup disparities that are often seen. Chapter one will begin with an overview that will briefly state the problem and address the specific phenomena of inte rest. Following the overview will be the literature review which will include research on health disparities in general, arthritis health disparities, and arthritis interventions. The review is then followed by the research questions and hypotheses. The dissertation research is timely in that ar thritis is the leading cause of disability in the United States (Centers for Dis ease Control and Prevention [CDC], 2008a). Arthritis or rheumatic conditions affect almost 70 million Americans (CDC, 2003) with about 46 million being physician-diagnosed cases (CDC, 2008a). It is important to note that the estimation of the popul ation prevalence of arthritis (i.e., 70 million Americans) is based on data using the self-reported phys ician-diagnosed case definition from the Behavioral Risk Factor Surv eillance System (BRFSS) and the National Health Interview

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2 Survey (NHIS). Such definitions are genera lly used in public health research and are generally broader than clinical definitions (CDC, 2009a). While the case definitions used by BFRSS and NHIS are less stringent than clin ical case definitions, self-reports of arthritis have been shown to be valid (Sacks et al., 2005). Arthritis is oftentimes thought of as one single illness. However, arthritis is an umbrella term for over 100 rheumatic conditions that affects the jo ints, and surrounding tissue (CDC, 2007a). The physical damage from arthritis can contribute to activity or functional limitations, including activities th at are considered basic (i.e., using the computer, climbing up and down the stairs, eatin g or cutting food, brushing teeth or hair, and walking). In addition, arthritis may resu lt in pain, and disability such as visible deformities, joint swelling and weakness, and instability (Arthritis Foundation, 2007a; CDC, 2007a). Arthritis can also be associ ated with negative psychological responses such as an increase in anxiety, depressi on, and feelings of helplessness (Keefe, Abernathy, & Campbell, 2005; National Institut e of Arthritis and Musculoskelatal and Skin Diseases [NIAMS], 2002). Being one of the most prevalent chronic illnesses, arthritis not only has an indi vidual impact but also a so cietal impact. Including both direct and indirect costs, in 2003 arthritis cost the United States over 120 billion dollars, and this amount is only expected to increase (CDC, 2008a; Hootman & Helmick, 2006). Arthritis is not a condition th at should be taken lightly as the prevalence rates are expected to rise astronomica lly with the aging of our population (CDC, 2008a; Hootman & Helmick, 2006). The prevalence of physician diagnosed cases of arthritis or rheumatic conditions is expected to increase by over 25% by the year 2030 resulting in 67 million people diagnosed with arthritis. Activity li mitations associated with the condition are

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3 projected to increase by approximately 10% (Hootman & Helmick, 2006). Moreover, certain groups are at a greater risk for having arthritis. Arthritis is more prevalent among women (e.g., osteoarthritis (OA), fibromyalg ia, rheumatoid, lupus), older adults (e.g., OA), and people with less education (e.g., ove rall arthritis; CDC, 2006; Helmick et al., 2008; Lawrence et al., 2008). While research on arthritis prevalence rates vary, it has been reported that arthritis is more pr evalent among minoritie s (Dominick & Baker, 2004; Dunlop, Manheim, Song, & Chang, 2001; Kington & Smith, 1997; Odutola & Ward, 2005). These findings reflect preval ence rates of both overall arthritis or rheumatic conditions (Dunlop et al., 2001; Kington & Smith, 1997; Odutola & Ward, 2005) and specifically OA (Dominick & Baker, 2004). It is also importa nt to note that as the overall arthritis prevalence rates increase, over half of those cas es will be in older adults (Hootman & Helmick, 2006). In addi tion, work limitations associated with arthritis, currently affecting one in every tw enty working age adults, are also on the rise (CDC, 2007b). Interestingly, the projected prevalence rates, which are based on selfreports, do not include those who may have arth ritis but have not received a diagnosis. However, it is evident that the number of undi agnosed cases will also increase at a rapid rate. It is critical that at tention be brought to the expect ed increase in undiagnosed cases of arthritis, and to consider that minoritie s may be represented in that category at a disproportionate rate. The focus of the current study is on OA. OA which is also known as degenerative joint disease, is the most common form of arth ritis, and results in the deterioration of the cartilage that protects the joints (CDC, 2008b; NIAMS, 2002). The most common sites for such deterioration are the weight beari ng joints (e.g., knees, hips spine), but it also

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4 affects hands, feet, small joints of the fingers the big toe, and the base of the thumb. OA can result in pain and ph ysical limitations (CDC, 2008b; NIAMS, 2002). Although arthritis is the leading cause of disability in the United States (CDC, 2003, 2008b) with OA being the most common (NIAMS, 2002), it is oftentimes incorrectly thought of as a normal part of aging resulting in a condition that is not often viewed as a serious health concern. The onset of the di sease usually begins around middle age and most commonly affects middle aged and older adults (A rthritis Foundation, 2010; CDC, 2010a). Knowing the impact of arthritis in genera l and specifically the impact of OA, it is imperative that effective arthritis interventi ons are designed and utilized as a way to minimize the negative impact a ssociated with the condition. According to the literature, minorities ar e consistently at a disadvantage in the impact of arthritis, reporting differences in symptoms and arthritis treatment (CDC, 2005a; Dominick & Baker, 2004; Jordan, et al., 2002; Odutola & Ward, 2005). Specifically, in comparison to Whites, a hi gher proportion of Black s report arthritis related activity limitations, a nd severe arthritis related pain (CDC, 2005a; Dominick & Baker, 2004). Racial differences are also f ound in utilization of treatments for arthritis, although it is unclear how much of these diffe rences are due to differences in patient preferences, versus choices by health care pr oviders. In terms of arthritis medications, Blacks are less likely than Whites to be pres cribed narcotics and more likely to be prescribed non-steroidal an ti-inflammatory drugs (NSAID s; Odutola & Ward, 2005). Moreover, there are disparities between Blacks and Whites specific to total joint replacement. Blacks report being less willing to consider total joint replacement as an arthritis treatment option, and less likely to receive joint replacem ents as a treatment

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5 option in comparison to Whites (Ang, Ibrahim, Burant, Siminoff, Kwoh, 2002; Jordan, et al., 2002; Odutola & Ward, 2005). Such differences and disp arities are seen between Blacks and Whites not only with arthritis or rheumatic diseases in general, but also specifically between Blacks and Whites who have been diagnosed with OA (Dominick & Baker, 2004; Jordan, et al., 2002; Odutola & Wa rd, 2005). As reviewed in detail below, Blacks are also greatly underrepresented in research on behavioral interventions for arthritis (McIlvane, Baker, Mingo, & Haley, 2008) and most likely in their attendance at behavioral interventions offered by groups such as the Arthritis Foundation which has reached less than 1% of thos e with arthritis in the US (Brady, Kruger, Helmick, Callahan, Boutaugh, 2003). Based on what is known about health dispar ities in general and health disparities in arthritis, it should be expected that as the prevalence rate s increase so will the disproportionate negative impact in minority populations. OA is a serious illness that warrants attention from both researchers and clinicians to minimize the negative impact and improve the quality of life of those affected by the condi tion. Public health efforts will need to focus on promoting and disseminatin g interventions that have been shown to be effective (e.g., exercise, self-management, and coping skills interventions; Brady et al., 2003; Hughes et al., 2006; Keefe et al., 2005) as well as to develop interventions that are innovative and meet the needs of minority populations. There is so much to be learned about arthritis in diverse groups. In spite of the fact that there are arthritis interventions that have been shown to be e ffective (Brady et al., 2003; Keefe et al., 2005), it is unknown if this is true across diverse racial/ethnic group s (McIlvane et al., 2008). It is also unclear if the underre presentation of Blacks in arthritis interventions and health

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6 care services are a result of barriers (e.g., cost of health care servic es and programs; lack of trust in the health care sy stem in general), preferences (e.g., services and programs are unappealing), or lack of knowledge (e.g., unawa re of various health care options and services). Not only is it important to determin e the effectiveness of arthritis interventions in minorities (i.e., Blacks), but it is also im portant to understand why there has been little participation from Blacks in the research studies and the programs offered by the Arthritis Foundation. The present doctoral dissertati on is organized as one study with two parts that will broadly focus on addressing arthritis health disparities between Blacks and Whites, and improving the impact of osteoarthritis in Blacks. The research will address whether modifications might be made in arthritis in tervention programs th at would make them more appealing to Black part icipants, remove barriers to participation, and provide practical guidelines for researchers and clinic ians who want to reach Black individuals with OA. Specifically, the first part will cons ist of a needs assessment. The goal of the needs assessment is to identify the needs of both Blacks and Whites in reference to arthritis care, and begin to understand how to offer culturally sensitive arthritis interventions based on those needs that will elim inate barriers to participation in arthritis interventions by Blacks. The s econd part evaluates the materi al of an existing arthritis intervention. Both the needs assessment a nd the evaluation of materials are based on the existing Arthritis Self-Management Program (ASM P) also referred to as the Arthritis Self Help Course (ASHC; CDC, 2010b; Lorig & Ho lman, 1992; Lorig Ritter, & Plant, 2005). This program has been widely offered th rough the Arthritis Foundation, but there has been relatively low inclusion of minoritie s in research studies focused on the ASMP

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7 (Brady et al., 2003; McIlvane et al., 2008) and no indication that the program has been utilized by a substantial amount of Blacks. Lastly, according to the information learned in part one and part two, recommendations will be made for assuring that arthritis interventions are culturally sensitive a nd how barriers to par ticipation might be decreased, as a way of mitigating the negativ e impact of osteoarthritis in Blacks. Literature Review Health disparities. In spite of the efforts being made to address health disparities in the U.S., with few exceptions, ethnic minorities fare worse than Whites on most conditions (e.g., cancer, AIDS, diabetes, str oke; CDC, 2005b; Frist, 2005; Institute of Medicine of the National Academies [IOM ], 2003). According to the CDC (2005b), health disparities plague racial and ethnic minority groups across the life course, and have become a major public health concern. Moreover, due to th e rapid increase of those 65 and older in the U.S. population and the dramatic increase in the propor tion of racial and ethnic minority groups, health disparities wi ll pose even more of a problem among older adults (CDC & Merck Company Foundation, 2007) The reasons for such disparities are unclear, yet in order to successfully address th e concerns of health disparities continued research is imperative. Initiatives such as Healthy People 2010 have been put into place to mitigate and hopefully even eliminate he alth disparities (C DC, 2005b). While the goals of Healthy People 2010 are laudable, in or der to successfully complete such a task (i.e., eliminate health disparities) efforts mu st be made to identify the progress of such initiatives and evaluate our current state. In addition, we must go beyond merely documenting disparities. It is essential to understand the causes of health inequalities, which in turn will allow them to be addressed in a proper manner.

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8 As previously stated, ethnic minority gr oups experience a disproportionate burden of many diseases. While it is important to eval uate various health disparities in different racial and ethnic minority groups, this revi ew will focus on the disparities between Blacks and Whites. Despite the fact that pub lic health efforts have focused on health disparities, and research has consistently been conducted ad dressing health disparities, the reasons behind health dispar ities are varied. Many factor s have been identified as possible contributors to health disparitie s such as race, SES, culturally related preferences, lack of access to healthcare, utilization, a nd quality of healthcare (Frist, 2005; IOM, 2003; Mayberry, Milli, & Ofili, 2002; Rathore & Krumholz, 2004). In addition, minorities are under-represented in health research (Curry & Jackson, 2003; Tilley, Wisdom, Sadler, & Bradford, 2003). As a part of the liter ature review, access, utilization, quality of health care and recruitment and rete ntion and the co rrelation of those factors to current health disparities will be discussed in further detail. Within each section race and socioeconomic status are disc ussed as integral contributors for each of the aforementioned factors. It is impossi ble to discuss health disparities without considering the impact of both race and so cioeconomic status which are complexly intertwined with almost every possibl e health disparity contributor. Understanding the causes and consequences of health disparities in a broad sense is an integral part of understanding hea lth disparities within a specific illness or condition. Therefore, this review will address health disparities in a broad sense and then specifically discuss the same f actors in the context of arthri tis. Moreover, it is important to focus on the broader issues when trying to understand arthritis health disparities because little work on health disparitie s has focused specifically on arthritis.

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9 Access According to the literature, minorities are represented at a disproportionate rate when it comes to lack of access (i.e., the right and opportunity) to adequate healthcare (IOM, 2003). Barriers to access include socioeconomic status, the number of healthcare choices available, and obtaining quality health insurance or obtaining health insurance at a ll. According to the Institu te of Medicine (2003), Blacks are represented disproportionately in each of the aforementioned categories. In addition, Blacks are less likely than Wh ites to see a primary care phys ician, and more likely to seek care at a hospital emergenc y room (Mayberry et al., 2002). Regardless of how SES is measured it st ill remains a persistent and pervasive indicator of health status (Kirby, Taliaferro, & Zuvekas, 2006; Mayberry et al., 2002; Weinick, Zuvekas, & Cohen, 2000; Williams & Jackson, 2005). There are marked race differences in socioeconomic status between Blacks and Whites. Blacks are more likely to have a lower level of e ducation, lower income, and more likely to be exposed to occupational hazards than their White count erparts (Rooks & Whitfield, 2004; Williams, 2004). The differences in income and occupation remain present even when comparing Blacks and Whites with similar education le vels (Williams, 2004). Reasons as to why these differences persist vary. While soci oeconomic status seems to be one of the unmistakable indicators for the lack of access to healthcare for minorities and continued health disparities, it is important to note th at in certain studies when controlling for poverty and SES in general, measured race disparities still exis t (Kirby et al., 2006; Mayberry et al., 2002; Weinick et al., 2000). Such findings suggest that factors other than SES may explain health disparities (e.g., cultural values). The disparities pertaining to access are well documented in the literature (Anderson & Armstead, 1995; Edwards,

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10 Fillingim, & Keefe, 2001; Farmer & Ferraro, 2005; Frist, 2005; IO M, 2003; Mayberry et al., 2002; Rooks & Whitfield, 2004; Weinick et al., 2000 Williams & Jackson, 2005). The ability to obtain health insurance, pa rticularly adequate health insurance is oftentimes a result of socioeconomic status. Blacks are less likely to have health insurance, and if they are able to obtain health insurance fr equently it is restricted to suboptimal services (IOM, 2003; Rooks & Whitfield, 2004). Such race differences persist into old age, even when SES di fferences are thought to decline (Rooks & Whitfield, 2004). It may seem that Medicare would eradicate access disparities in older adults; however, Blacks with Me dicare receive fewer services lower cost procedures, and have lower rates of physician visits and surgeries than Whites (Dunlop, Manheim, Song, & Chang, 2002; Rooks & Whitfield, 2004). The continued access disparities for older adults with Medicare may be a result of less access to optimal supplemental health insurance, or the lack of w ealth accumulation over a lifetim e to aid in funding healthcare expenses that are not covered by Medicare. As with all health insu rance plans no two are the same, and the best plans are usually the mo st expensive. Therefore, the inability to purchase the best health insurance plans rest ricts access to healthcare. Patients with lower tier insurance plans have limited acce ss to quality products and services (IOM, 2003). It is evident that SES and race ha ve a negative impact on access to adequate healthcare. Designing culturally sensitive progra ms or interventions is a way to address this issue and possibly mitigate the negative impact. To add to the complexity of understa nding the impact of access to healthcare on health disparities, it is important to understa nd the effects of institutionalized racism or racial segregation. Inst itutional racism and victimization includes both political and social

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11 forces that confine a certa in racial/ethnic group to im poverished neighborhoods, and racially isolated schools a nd places of employment (parti cularly positions) and even certain hospitals or healthcare settings (Poussaint, 1990; Williams, 2004). While segregation is no longer enforced legally, Bl acks still suffer the consequences (Williams, 2004; Williams & Jackson, 2005). Institutional racism and victimization has forced Blacks into positions of hard labor with low benefits, unemployment, and limited access to health and social serv ices (Poussaint, 1990; Williams, 2004). Understanding the impact of access is complicated and multi-face ted. However, based on the literature it appears that minorities, specifically Blacks do not have the same access to healthcare options as the White population. This sugge sts that this population may be information poor when it comes to healthcare options as a result of the restricted access. The health disparities literature is replete with informa tion on access, yet it seems very little has been done differently to rid the problem. Program s and interventions that take into account some of the access issues that plague our minority communities may actually be beneficial and result in meeting the lauda ble goals set forth by Healthy People 2010 and more recently Healthy People 2020. Utilization In addition to having poor access, minorities also tend to have different healthcare utiliza tion patterns, patter ns to which individuals put to use healthcare options, and services, in comparis on to Whites (Mayberry et al., 2002). While it is true that some utilization patterns may be strongly correlated or a result of access, when controlling for access indicators disparit ies in utilization patterns remain (IOM, 2003). Minority patients are more likely to refuse recommended and needed services, adhere poorly to treatment regimens, and de lay seeking care (IOM, 2003; Pincus, 2004).

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12 These patterns are similar to those found in osteoarthritis ca re (Figaro, Russo, & Allegrante, 2004), and could contri bute to the disparities that we see in disability. Such utilization differences seem to not be so lely based on limited access to healthcare, but may be rooted in the patient’s perception of the healthcare system, re ligious beliefs, and personal belief systems (Pincus, 2004). Va rying utilization patterns between Whites and Blacks may also be a result of the differen t time points in which disease related symptoms are recognized as disease related (L aVeist, 2004). There ha s been a significant amount of research that has documented the differences in awareness of disease risk factors and disease related symptoms between minorities and their White counterparts. Specifically, Blacks are less likely to be aw are of disease risk factors and disease symptoms in comparison to Whites (LaVeist, 20 04). This suggests that there is a need for healthcare providers and public health e fforts to make stronger efforts to educate minorities on a variety of disease related symptoms and risk factors which may in turn affect healthcare utilization pa tterns. Another aspect of ut ilization patterns to consider when discussing health disparities is the fact that minorities tend to report a lack of a stable relationship with a primary care physic ian. Regardless of whether Blacks are insured at the same level as Whites, Blacks ar e more likely to receive care in emergency rooms than to visit a primary care physician (IOM, 2003). In addition, Blacks are likely to see a physician less often than Whites wh ich holds true even after controlling for health and income (Mayberry et al., 2002). Specific reasons for such disparities are subject to future research. When addressing health disparities between Blacks and Whites, it is necessary to find out why varying utilization patterns ex ist and to determine if these are merely

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13 differences or indeed contri butors to disparities. A few potential factors that may influence healthcare utilization include belief s about one’s health c ondition, beliefs about the healthcare system, cultural values, affo rdability, family/work responsibilities, and transportation difficulties. It is important to note that simply because one group is different from the other does not indicate one gr oup is inferior to the other. Differences in health care utilization be tween Blacks and Whites may be deeply rooted in each group’s preferences for health care options and services. Moreover, utilization differences may be a result of public health efforts a nd health care providers failing to see the importance of addressing preferences when designing programs and offering health care services. As greater insights are gained into the causes of the differences that we see in the healthcare utilization patterns between Bl acks and Whites, we can begin to develop programs that will counteract the negative impact of those differences by addressing modifiable causes. Quality of healthcare Consistent with other aspect s of health and healthcare, minorities are disadvantaged in the quality of healthcare received in comparison to Whites. Quality of healthcare can be defi ned as healthcare options that increase the likelihood of positive health outcomes, and are concordant with existing and up to date medical knowledge (IOM, 2003). The quality of the interaction be tween the healthcare provider and the patient has a bearing on one’s healthcare decisions. After controlling for access to healthcare, researchers report that Blacks continue to experience a lower quality of health services than Whites which means that Blacks are more likely to receive less than excellent health care in comparison to Whites (IOM, 2003). Warranting further research, race has been identified as a determ inant for such disparities (Mayberry et al.,

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14 2000). Research discovered that Blacks we re less likely than Whites to express confidence in their primary healthcare pr ovider, and less likely to consider the relationship with the provider as excellent (Lopez, Burant, Siminoff, Kwoh, & Ibrahim, 2005; Williams, 2004). Moreover, Blacks tend to be less satisfied with their visit with the physician in comparison to Whites (Mayberry et al., 2002). The Institute of Medicine (2003) reports Blacks often experi ence discrimination (i.e., diff erences in care as a result of stereotypes, prejudices, and biases) which may result in suboptimal care. Specifically, researchers have shown that even among patie nts who have insurance, Blacks tend to receive worse care (Kahn et al., 1994). Even though access emerges in several studie s as a strong predictor of the quality of healthcare one may receive (i.e., those with private insurance plan s receive better care, and those with public insurance plans or no in surance at all receiv e worse care), it does not negate the fact that upon controlling for access, race remains as a predictor of the quality of healthcare (Balsa & McGuire, 2003; IOM, 2003). Such findings suggest that the reasons for minorities receiving worse healthcare in comparison to their White counterparts goes beyond that of access and ma y also be a consequence of stereotyping, discrimination and perceptions (i.e., patient’s perceptions of the healthcare provider and provider’s perceptions of the patient). Nega tive perceptions of the healthcare system could lead to disparities that emerge. Pe rceptions may be shaped by a poor cultural match between minority patients and their providers, medical mistrust, misunderstandings (i.e., the provid er’s instructions), prior negative intera ction with health care systems, or simply from lack of knowle dge of how to best use the healthcare services (IOM, 2003). Discrimination and st ereotyping, whether intentional or not,

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15 undeniably impacts the quality of care the patient is likely to receive. Discrimination in the healthcare system can be tr aced back to historic pattern s of legalized segregation and discrimination (IOM, 2003). Blacks have repo rted that they perc eive discrimination between themselves and their healthcare pr ovider, and some aspects of perceived discrimination are correlated with utilizati on patterns (Bird & Bogart, 2001). Such reporting underscores the complexity of the pr oblem and suggests that health disparities may partially be the result of a long histor y of discrimination and mistrust of the healthcare system. Physicians’ perceptions play a role in the quality of care as well. A person’s race has been known to influence a physician’s recommendation (Schulman et al., 1999). In other words, if physicians or healthcare providers are prejudiced against members of minority groups and treat minority patients with less regard than White s, this could result in poorer quality of care. In addition to prejudices, physicia ns or healthcare providers may have preconceived percepti ons or stereotypes about the type of healthcare a minority individual may seek. In other words if th e research consistently reports that Blacks refuse joint replacement as a form of treatm ent, physicians may be less likely to offer joint replacement even though this may be the most effective treatment. If physicians have a preconceived idea that a person is less likely to comply because of their racial/ethnic background and therefore the patie nt is not offered treatment, this would understandably increase the issu es surrounding health disparitie s, particularly in quality of care (Balsa & McGuire, 2003). Barriers of this kind have presented themselves in the arthritis literature where Blacks are less likel y to receive a referral to a rheumatologist than their White counterparts. Such fi ndings may be a result of the physician’s

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16 perception that Blacks are less likely to want to see a specialist for their condition (Katz et al., 1998). Figaro et al. (2004) suggest that de signing and utilizing cu lturally sensitive programs may be beneficial in overcoming the barriers that minorities face to receiving quality healthcare (e.g., intervention programs th at address the negative perceptions of joint replacement as a treatmen t option within the Black comm unity). This suggestion is also set forth by the Institute of Medicine (2003). Moreover, physicia ns should strive to be culturally competent, meaning efforts are ma de to make the healthcare system diverse, remain sensitive to minorities, and guarant ee access to quality healthcare (Betancourt, Green, Carrillo, & Ananeh-Firempong, 2003). In other words, while it may seem that certain perceptions are entrenched in the minds of minorities and non-minority healthcare providers, it is still true th at programs and services can m odify those perceptions. Both healthcare providers, including those who desi gn healthcare interven tions, and patients can take part in assuaging the im pact of health disparities. There is so much about health disparit ies that remains unexplained, but beginning to answer such questions in th e area of health disparities is important for future studies. In light of the health dispar ities between Blacks and Whites, future research should strive to have services, programs and interventions that are culturally sensitive and that appropriately address biological, social, and psychological concer ns and issues specific to minorities. Recruitment and retention Another challenge that im pacts understanding and addressing health disparities is the lack of minorities in health related research. In order to move forward in research on health dispar ities, more minority participants must be

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17 included in health research. Even though it may pose a sign ificant challenge (Curry & Jackson, 2003), researchers must overcome the barriers of recr uiting and retaining individuals from racial/ethnic minority groups in research. Research needs to include representative samples of the population of interest. While it is necessary to find ways to recr uit and retain minorities in general in health related research, for the sake of this paper we will focus on Blacks. Due to a long history of discrimination and exploitation th ere is oftentimes reluctance among Blacks to participate in research, specifically health re search (Curry & Jacks on, 2003). Despite the fact that safeguards have been put into pl ace to protect research participants from unethical treatment, individuals from minority groups are still reluctan t to participate in research (Ryall, Abdulah, Rios, & Hausdorff, 2003). Several barrier s affect recruitment and retention of minorities including the res earcher’s approach (e.g., lack of sensitivity, ineffective communication, lack of knowledge, researcher bias), recruitment methods (e.g., use of conventional methods such as pr int materials, and media recruiting), access (e.g., transportation, and location) and the per ception of the particip ant (Curry & Jackson, 2003; Reed, Foley, Hatch, & Mutran, 2003; Ry all et al., 2003; Tilley et al., 2003; Warren-Findlow, Prohaska, & Freedman, 2003) Moreover, we know that Blacks are more likely to have lower socioeconomic stat us than their White counterparts (Williams, 2004; Williams & Jackson, 2005). Complex ques tionnaires and measurements may serve as barriers to those with low education levels resulting in refusal or withdrawal. It is imperative to use materials that are appropria te to the target audience. Researchers should identify recruitment methods that are best for reaching the target population, and use those methods in future research. Trad itional methods may not be beneficial in

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18 reaching minority participants (Curry & Jackso n, 2003). It is imperative that researchers do not allow their own biases or convenience to dictate their recruitment efforts (Curry & Jackson, 2003). Lack of successful recruitment efforts of individuals from ethnic minority groups consistently seems to be an issue in health research (Curry & Jackson, 2003). Similar discrepancies are seen specifically in the cont ext of arthritis care and arthritis research (Ang, Monahan, & Cronan, 2008; Lopez et al., 20 05; McIlvane et al., 2008). Without the inclusion of hard to reach pa rticipants (i.e., minorities) in current research, research questions continue to be unanswered (e.g., re asons for disparities) or inaccurately answered (e.g., estimations of the magnitude of the disparities). The current study has a specific focus on these issues in Bl acks and Whites with arthritis. Arthritis health disparities. Previously, the complexities of health disparities in general were discussed. However, for the sake of the current study it is essential to note that the complexity is no different when studying specific illnesses such as arthritis. Currently research varies on whether there ar e disparities in the prevalence rates of rheumatic conditions including oste oarthritis. Certain findings suggest that Blacks have a higher prevalence of arthritis than Whites (Dominick & Bake r, 2004; Dunlop et al., 2001; Odutola & Ward, 2005), and other findings sugg est that Whites and Blacks have similar prevalence rates (CDC, 2005a; Lawrence et al ., 1998). Albeit, the findings of the prevalence rates vary, Blacks consistently fare worse from arthritis in general than their White counterparts (CDC, 2005a; Dominick & Baker, 2004; Jordan et al., 2002; Lawrence et al, 1998; Odutola & Ward, 2005) Functional impairment and pain are associated with the progression of arthriti s or rheumatic cond itions (CDC, 2008a), and

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19 Blacks report more pain, more activity limitati ons, and are more likely to attribute work limitations to arthritis than their White counterparts (Blake et al., 2002; CDC, 2005a; Dominick & Baker, 2004; Odutola & Ward, 20 05). Marked race differences have also been found in other rheumatologic sympto ms (e.g., muscle tenderness and morning stiffness) with the worst impact being in Black participants (Odutola & Ward, 2005; Satish, Postigo, Ray, & Goodwin, 2001). Race di fferences continue to exist without a clear explanation. Further re search should be co nducted that examines the relationship between well documented contributors of health disparities and the disparities in arthritis symptoms seen between Blacks and Whites. While oftentimes intertwined, specifically in the area of arthritis, examining the impact of access, utilization, qua lity of care and perceptions (i.e., patient’s and provider’s perceptions) is pivotal to be gin to address arthritis-relate d health disparities. In concordance with general health disparitie s, access poses a problem for minorities with arthritis (Song et al., 2007). In comparison to Whites, minorities with arthritis are less likely to have adequate medical access resour ces, with access fact ors explaining 60% of excess risk of developing disability for Bl acks (Song et al., 2007). Furthermore, in comparison with Whites with arthritis, Bl acks find it problematic to obtain health insurance, are more likely to be uninsured, a nd more likely to rely on Medicaid (Lopez et al., 2005; Song et al., 2007). It is highly unlik ely that access is the exclusive explanation to the disparities seen in ar thritis between Blacks and Whites with arthritis; however, it is intricately linked to other factors. Extant literature on joint replacement as a treatment option has shown consistent disparities between Whites and Blacks, with Blacks being 3 -25 times less likely to

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20 undergo the surgery (Ibrahim, 2007; Jordan et al., 2002). Approximately 90% of the patients who undergo joint replacement experi ence a decrease in pain and disability (Callahan, Drake, Heck, & Dittus, 1994). De spite the benefits of joint replacement surgery, ethnic differences in utilization of this particular treatment option remain (Ibrahim, 2007; Mahomed et al., 2003). This is one example of how the utilization patterns differ between Blacks and Whites even in arthritis care. There are several possible reasons that may lead to the dispar ities in utilization of joint replacement for arthritis. Lack of knowledge about surg ical outcomes may be responsible for low utilization rates among Blacks. Blacks have reported that they do not feel as if the procedure is efficacious, and thought that surg ery should only be used as a last resort after all other options have been exhauste d (Blake et al., 2002; Figaro et al., 2004). Perceptions and utilization are closely li nked. While the current section will touch on arthritis perceptions, they will be reviewed in greater detail in future sections. The purpose in the current paragraph is to further understand the utilization disparities. While not believing in the biomedical model of ar thritis, Blacks reported that there was nothing that surgery could do to help the disease b ecause it was due to old age and the climate (Figaro et al., 2004). Such beliefs ultimately impact healthcare ut ilization patterns. According to Blake et al. (2002), social network (e.g., people you know personally) and perceptions of the benefit of joint replacement therapy can be associated with utilization. Blacks are less likely than th eir White counterparts to know someone who had joint replacement therapy, and for the people th ey did know who had th e surgery, Blacks in comparison to Whites were less likely to report that the surgery was be neficial (Figaro et al., 2004; Ibrahim, Siminoff, Burant, & Kwoh, 2002a). Blacks were more likely than

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21 their White counterparts to have a fear of dying as a result of join t replacement therapy (Figaro et al., 2004), when the mortality rate s are approximately one percent (Mahomed et al., 2003). Blacks have expressed that they feel after a surgery such as joint replacement therapy, they would suffer from post treatment pain, a slow recovery, a longer hospital stay and even disability. Majo r factors explaining such beliefs have not been determined specifically. However, fear of surgery a nd information collected from family and friends were associated with the ne gative beliefs about surgery. On the other hand, age, SES, and disease status were not associated with the negative beliefs concerning joint replacement therapy (Figaro et al., 2004; Ibrahim, Siminoff, Burant, & Kwoh, 2002b). Figaro et al. (2004) found that urban Blacks expressed that other things outside of the perception of the treatment led them to not assume the risk of surgery for arthritis. Still impacting healthcare utilization, partic ipants expressed a preference for natural or over the counter remedies, a strong belief that God was in control, and preference to continue in their current st ate (Figaro et al., 2004; Ibrahi m, Siminoff, Burant, & Kwoh, 2001; Price, Hillman, Toral, & Newell, 1983). Findings also demonstrate that Blacks used prayer as a form of pain management and believed that prayer would alleviate the condition all together (Ibrahim, Zhang, Me rcer, Baughman, & Kwoh, 2004; Ibrahim et al., 2001). The utilization of joint repl acement therapy may also rest upon the physician’s perceptions of the pa tient’s religious belie fs. Blacks seem to prefer that the information they receive is from a physician who respects their faith and does not frown upon one praying before making a healthcare de cision (Ibrahim et al., 2004). Most of the research on perceptions of ar thritis treatment has focused on the comparison of Blacks

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22 and Whites. Results from such research are imperative and does inform better approaches to healthcare. However, a research area that has been unde r-studied is that of within-group differences. Therefore, being mindful not to over generalize the betweengroup research findings will al so strengthen the developmen t of culturally sensitive interventions. For example, while Blacks repor t using prayer for pain management it may not suit all Blacks. Therefore, it may be c ounterintutive to the goal of mitigating health disparities to design a program for Blacks that included a mandatory prayer component. Distinct differences in the quality of care for arthritis have also been documented. It is imperative to reiterate that many of the possible cont ributing factors to arthritis health disparities can be clos ely intertwined. Blacks conti nue to report being twice as likely to seek care for arthritis in an emerge ncy room, and more likely to see a primary care physician instead of a specialist for arthri tis treatment (Blake et al., 2002). While this may be a consequence of lack of access, it may result in poor or less optimal quality healthcare. Proportionately fewer Blacks are re ferred for specialist care (i.e., orthopedic clinic; Lopez et al., 2005). It is imperative to consider that the information disclosed about arthritis treatment may be different at the clinic and emergency room versus the information one would receive from a primary ca re physician or particularly a specialist. Lopez and colleagues (2005) showed that Blac ks with knee and hip osteoarthritis when compared to their White counterparts were less likely to report being satisfied with their primary physician, and less likely to have confidence in their primary physician. Lastly, varied perceptions have the pote ntial to result in the current arthritis disparities seen between Blacks and Wh ites. Common myths and misperceptions associated with rheumatic diseases vary by race. Such myths and misperceptions pertain

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23 to both the disease and treatment options for the disease (Arthritis Foundation, 2007b; Price et al., 1983). Although a misconception, res earch has shown belief in ideas such as arthritis being caused by cold and wet climates, and poor diet (Figaro et al., 2004; Price et al., 1983). The idea that arthri tis could be due to wet and cold climates was believed more so by Blacks than their White counterpart s (Price et al., 1983). This exemplifies the need to implement interventions that address the physical impact of the disease as well as educate people about th e disease in general. Being unaware of effective treatments is also problematic particularly when people rely on what is referred to as “quack ” treatments or unproven remedies (Price et al., 1983). Despite their ineffectiveness, it was still believed that trea tments such as bee venom, vitamins, copper bracelets, special diets, dimethylsulfoxide (DMSO), green alcohol, sliced potatoes, liniment, kerose ne, and various herbal creams and rubbing lotions would benefit the complications associ ated with arthritis. Blacks were more likely to rely on natural remedies or unproven remedies for their arthritis complications than to undergo surgery (Figaro et al., 2004; Price et al., 1983). Importantly, the lay public, particularly Blacks, need to be edu cated about arthritis a nd arthritis care and management. Misperceptions could lead to mi streatment, which in turn could lead to increased pain, physical limitations, and ot her negative outcomes associated with arthritis. The aforementioned findings and cont inued efforts to understand arthritis health disparities are crucial when developing progr ams and interventions that are culturally sensitive. It is also an indicator that th ere is no such thing as a one size fits all intervention.

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24 Future researchers’ ability to design and provide efficacious interventions to ameliorate the disparities mentioned is base d on understanding the influence of culture. Reducing arthritis health disparities may be a matter of providing education to a population that otherwise may be informati on poor or may weigh information that is provided differently. In othe r words, it is important to design interventions that will educate persons in a culturally sensitive manner about arthriti s itself and the benefits and risks of various care options. Also, it is im portant to provide education that will allow individuals to self-manage th eir illness and reduce the nega tive impact of symptoms. Even something as small as educating Blacks about the benefits of seeing a rheumatologist over a primary care physician, wh ere research has shown that there is a health advantage to having a rheumatologist provide arthritis h ealthcare (Yelin, Such, Chriswell, & Epstein, 1998), is a way to begin to address arthritis he alth disparities. Therefore, the proposed set of studies is a vita l piece to this burgeoning area of research. Arthritis interventions. Osteoarthritis can be treate d through surgery, and the pain can be managed through medications (CDC, 2007a). However, such treatment options do not seem to be completely eradicat ing all of the negative symptoms associated with the condition (Keefe et al., 2005). Edu cational and psychological approaches such as cognitive-behavioral training or self-management traini ng can be used to successfully treat arthritis (Brady et al., 2003; CDC, 2007a; Keefe et al., 2005). In addition, exercise interventions have been shown to be effec tive (Brady et al., 2003). The above findings are pivotal when considering utilizing interv entions as a way to manage arthritis. Arthritis not only affects an i ndividual physically, but also me ntally (Keefe et al., 2005). Treatment options should positively imp act both physical and mental health.

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25 Many arthritis interventi ons have been shown through randomized controlled trials to be effective (e.g. coping, self-management, ex ercise; Brady et al., 2003; McIlvane et al., 2008). Effectiv e interventions include, but ar e not limited to the Arthritis Foundation Aquatics Program (Suomi & Lindaue r, 1997), the Arthriti s Self-Management Program, (Lorig, Gonzalez, Laurent, Mo rgan, & Laris, 1998; Lorig, Mazonson, & Holman, 1993; Lorig, Ritter, & Laurent, 2004) and psychological interventions for symptom management (Dixon, Keefe, Scip io, Perri, & Abernathy, 2007). Arthritis interventions such as the self-management, exercise, and cognitive behavioral interventions, have been s hown to decrease pain, depressi on, medical visits, disability, discomfort, medical expenses, and to increa se relaxation, quality of life, self-efficacy, functional ability, self-car e behavior, perceived self -efficacy, and knowledge about arthritis (Brady et al., 2003; Di xon et al., 2007). However, the positive effect is only true for the populations that the interventions reac h. The majority of ar thritis interventions have sampled predominately White populati ons, meaning that it is unknown if these effects hold true in a Black population (B rady et al., 2003; McIl vane et al., 2008). Research has also shown that Blacks are less like ly to even participate in an arthritis selfmanagement program (Bruce, Lorig, & Lauren t, 2007). A recent revi ew article reported that arthritis interventions conducted approximately over the past ten years have been conducted mostly without any special attenti on to minorities (McIlvane et al., 2008). The authors reported that inclusion of minorit ies was limited. Specifically, only a small portion of the studies (i.e., 2 of the 25) exam ined and showed effectiveness in a minority sample, and only one study showed special effo rts to recruit and retain minorities. In addition, none of the interventions betw een the years of 1997 – 2008 included in the

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26 review made any mention of including components that would meet the needs of a racial/ethnic minority populat ion (McIlvane et al., 2008). It is important to note that recent re search has acknowledged that the lack of inclusion of minorities is problematic and has be gun to make an effort to address the gap in the literature by including Blacks in the AS MP trials and by adapting the materials to become more culturally sensitive (Goeppi nger, Armstrong, Schwartz, Ensley, & Brady, 2007; Goeppinger et al, 2009). However, the process of modifying the materials and delivery of the program for cultural sensitivit y were not described in detail (Goeppinger et al., 2007; Goeppinger et al., 2009). Moreover, Goeppinger et al. (2009) collected data from 156 Black participants, how ever analyses specific to th is group were not presented. To our knowledge only one study to date has examined the acceptability or the effectiveness of the ASMP among Black s (Goeppinger et al., 2007). Without randomized controlled trials for arthritis in terventions including minorities (e.g., Blacks), researchers making efforts to have a diverse sample, or in formation on diverse samples being clearly reported in the literature, the question will remain as to whether arthritis interventions are acceptable or effectiv e in racial/ethnic minority populations. The fact that minorities continue to be underrepresented in ar thritis intervention research exacerbates the inability to provi de adequate healthcare options to the population and may play a role in arthritis hea lth disparities. Ther efore, as one way to address such an issue, efforts should be made to design culturall y sensitive arthritis interventions or to see if current interventions are effective with minorities as is. In other areas of research, interventions that have been modified to be appropriate for ethnically diverse populations have been shown to be effective (Gallagher-Thompson et al., 2003).

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27 In arthritis research it may not be a matter of tailoring an intervention for a specific minority group to make a positive impact, but it may be that maki ng the interventions culturally sensitive and appealing to minorities would increase participation and aid in reducing current disparities. Such initiativ es are in line with the laudable goals of Healthy People 2010 and more recently H ealthy People 2020 to eliminate health disparities between those w ith disabilities and those w ithout (e.g., arthritis-related disability) as well as to prev ent illness and disability associ ated with rheumatic conditions (CDC, 2000; Department of Health and Human Services [DHHS], 2009a). Future directions. By knowing that arthritis inte rventions have shown a positive effect in the populations sampled, and that inte rventions for other conditions modified to benefit ethnically diverse populations have been effective, it is specula ted that an arthritis intervention designed to be culturally sensitive for Blacks will be more likely to result in positive outcomes (e.g., decreasing pain and f unctional impairment) when compared to intervention that does not pl ace an emphasis on cultural sensitivity. This dissertation research seeks to fill the gap in the arthritis intervention research by identifying needs and preferences as well as perceptions of a wi dely accepted arthritis intervention. The research will inform the design of a cultura lly sensitive feasibility arthritis intervention that will reduce barriers and appeal to Blacks. It is important to note that by culturally sensitive we do not mean a program that is tailored to a specific group. However, our intentions are to inform the design of an intervention that takes into account the preferences, beliefs, and practices of racial/ethnic minorities. Research objectives/research questions The objective of this dissertation is to make an attempt to contribute to the overall goa l of eliminating arthritis health disparities

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28 by providing recommendations regarding culturally sensitive arthritis interventions specific to the ASMP. In addition, it is hope d that the contributions made through this dissertation research will be a template that can be applied to other arthritis interventions and also be used for fighting health disparitie s in other conditions or diseases as well. We must be cognizant of the fact that good healthcare is tied to quality of life. Therefore, the ultimate goal of the dissertation resear ch is to go beyond simply stating that disparities should be addressed and actively address health disp arities. Specifically, the purpose of the first part of the research is to conduct an arthritis intervention needs assessment for Blacks and Whites with OA. Pres ently there is no unifo rm definition as to how to define a needs assessment (Baldwin, 1998). For the sake of this study a needs assessment is an assessment used to gather valid and reliable information, which will aid in developing better services (Soriano, 1995). Past research has examined the needs of patients with arthritis, however samples in cluded predominately White participants, and analyses did not examine race differences (Buckley, Vacek, & Cooper, 1990; Hirano, Laurent, & Lorig, 1994). While limited work using needs assessments have been conducted in the area of arthritis and arthritis disparities, utilizing n eeds assessments to evaluate the care needs of a target population is not a novel concept (Corona, Gonzalez, Cohen, Edwards, & Edmonds, 2009; Jenkins, Lapelle, Zapka, & Kure nt, 2005). Researchers have used needs assessment to gather information on health service needs in various areas (e.g., health service needs for Latino youth (Corona et al., 2009) and end of life care needs for African Americans; Jenkins et al., 2005). Recomme ndations have been made for service providers to adopt a more culturally sensitive ap proach to healthcare. It is imperative that

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29 we use such research as a model to gain information on developing a culturally sensitive arthritis intervention. Therefore the needs assessment will address the following research questions: 1. Are there race differences in interventi on preferences, barrier s to healthcare, knowledge about arthritis interventions a nd care, utilization, and health beliefs between Blacks and Whites with OA? 2. What are the most common intervention pr eferences, barriers to healthcare, utilization preferences among Blacks and Whites with OA? Based on previous literature it is hypothesized that there will be significant race differences in barriers to partic ipation in healthcare (i.e., arthritis interventions). Black participants will be more likely to report that lack of trust in the hea lthcare system, family responsibi lities, cost, and transportation are barriers to participating in the intervention. Due to the lack of an extensive previous literature on issues of prefer ences for arthritis interventions, racial differences in the other issues will be explored without hypotheses. The purpose of the second part of the study is to conduct an evaluation of a portion of the materials used in the ASMP t oolkit. As mentioned previously there are many arthritis interventions that have failed to include significant numbers of minorities (i.e., Blacks). Therefore, addressing this concern in any existing arthritis intervention would be beneficial. However, for the sake of this research the focus will be on the ASMP which is the most accessible arthritis in tervention to the public. Such accessibility is the result of the endorse ment of the ASMP by the CDC, Arthritis Foundation, and

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30 American College of Rheumatology. The AS MP is a 6-week community-based course (weekly 2 hour sessions) for pe ople with arthritis. The focus of the program is to teach skills to self-manage arthritis and build confid ence to carry out the skills learned (Lorig, Ritter, Laurent, & Fries, 2004; Lorig et al ., 2005; CDC, 2009a). The mailed version of the ASMP is referred to as the ASMP t oolkit. The objectives of the toolkit are synonymous to that of the ASMP community -based program (Goeppinger et al, 2009). Previous research found it difficult to get Blacks to participate in the ASMP toolkit intervention, and thought a possible e xplanation may be that Blacks found the materials and structure of the intervention to be unappealing (Goeppinger et al., 2009). Therefore, the purpose of this study is to de termine if the ASMP toolkit materials would be utilized and evaluated favorably by Bl acks and Whites with OA and if those findings differ by race. Knowledge about the acceptabili ty of the existing interventions such as the ASMP toolkit could lead to the devel opment of better designe d interventions that would effectively address the needs of minoritie s. Therefore the evaluation of a selected portion of the ASMP toolkit materials will pr ovide answers to the following research question: 1. Are there race differences in the acceptability of th e different components of the ASMP toolkit between Blacks and Whites with OA? Due the exploratory nature of this research no hypothe sis can be drawn specific to the research question.

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31 Chapter Two: Research Methods Needs Assessment Participants The research protocol was a pproved by the University of South Florida’s Institutional review board. Participants were recruited from multi-purpose senior centers, church groups, and senior housing communities in the Tampa, Florida area. In addition, participants were recruited from an exis ting USF Arthritis participant registry. The arthritis partic ipant registry was created in the School of Aging Studies at the University of South Florida. The names in cluded participants with osteoarthritis from previous studies who have agreed to participate in future studies. The participant registry was the first source of recruitment. In a ddition, flyers, presenta tions, and the snowball method was used to recruit and inform partic ipants about the study. Those interested in the study were provided with additional info rmation about the study, and administered a prescreening tool to determine eligibilit y. The onset of OA begins around middle age (Arthritis Foundation, 2010; CDC, 2010) a nd the impact seems to worsen around age 50. Research has documented specific outcomes that take place at age 50 and above. Specifically, OA is one of the leading causes for work disability for men age 50 and above, and women tend to be affected more frequently than me n beginning at age 50 (Lawrence et al., 2008; Lawrence et al., 1998). Therefore, eligib le participants included individuals age 50 and older se lf-reporting a doctor-diagnosis of osteoarthritis, with no other complicating musculoskeletal diseases, if possible. The self -reporting method used

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32 to identify individuals w ith osteoarthritis is similar to the method used by the Centers for Disease Control and Prevention to examine arthritis prevalence rates in the population (CDC, 2001). Moreover, this method has been shown to be a valid method among older adults (Sacks et al., 2005). A ll participants provided written informed consent prior to enrollment. The final sample for the project consiste d of 115 volunteers with an average age of 72 years (SD=10.2). The sample size is su fficient for a needs assessment with the intent of reporting descriptiv e analyses (Berkowitz, 1996). Procedure. This study was conducted using a surv ey research design to collect information from community dwelling adults with osteoarthritis. Once the volunteers were screened for elig ibility, the researcher scheduled a time and pl ace convenient to the participant to meet to fill out the survey (i .e., needs assessment questionnaire). Based on what was convenient for the participants, surv eys were self-administered in either a group setting or individual appointments. On aver age it took the particip ants 30 minutes to complete the questionnaire. Participants were provided a five dollar Target gift card as a token of appreciation for their participation. While recruitment efforts and data analyses did focus on recruiting Black and White adults with OA, volunteers from other race groups were not excluded from participating if they showed an in terest in the study. Measures. The instrument used in this study was designed as a semi-structured questionnaire (including a combination of st ructured questions and open-ended questions; Appendix A). The study gave participants an opportunity to comment on open-ended questions as a supplement to the quantitative findi ngs (e.g., Do you see the need for an arthritis self-help program for people who ha ve been diagnosed with arthritis, Yes or

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33 No?; Please explain why or why not). Specifi cally, the instrument included structured questions that are designed to assess demographics, socioeco nomic status, health status, knowledge, barriers, preferences and utiliz ation. The measures included in the questionnaire are listed below a nd explained in further detail. Demographics. Race was assessed by asking part icipants to “please tell me your race or ethnicity” with the choices being 1) White/ Caucasian, 2) Black/African American, 3) Latino/Hispanic, 4) Asian/Paci fic Islander, 5) Native American, or 6) Other. Age was based on date of birth and measured as a continuous variable. Participants were also asked to repo rt their marital st atus and gender. Socioeconomic status. Socioeconomic status was a ssessed based on income and education level. Participants were asked to identify their to tal annual family income (i.e., wages, pensions, dividends, and any addi tional household income) by selecting an income starting at $5,000 dollars and increasi ng incrementally with the final choice being more than $100,000. Education was assessed with a 1-item question that asks “What is the highest grade of school or year of colle ge you have completed?” Choices ranged from 0 to 17+. Health status Overall health status, disabilit y, and pain of the participant were assessed using single item questions from th e Behavioral Risk Factor Surveillance System (BRFSS) Questionnaire (CDC, 2009b). Pa rticipants were asked to rate their health in general with choices ranging from excellent = 4 to poor = 0. Disability was assessed by asking participants to respond ye s =1 or no = 0 to the question, “Are you limited in any way in any activities because of physical, mental, or emotional problems?” Pain was measured by asking participants to rate their average joint pain over the past 30

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34 days using an 11-point Likert scale (0=no pain, 10= extreme pain; Centers for Disease Cnntrol and Prevention (CDC), 2009b). Part icipants were also asked to report the number of years they have had arthritis re lated symptoms, and the number of years that they had been diagnosed with osteoarthritis by a doctor. Knowledge and beliefs To determine what participants know and believe about arthritis, three questions were asked about arthritis in genera l and arthritis treatment using and 11-point Likert scale (i.e., Do you consider arthritis to be a normal part of getting older, 0=not at all, 10=normal aging; Do you think anything can be done about arthritis once you have it, 0=don’t believe at all, 10=definitely beli eve; Do you think once you get arthritis it can only get worse not better, 0= don’t believe at all, 10= definitely believe). The questions were adapted from a questionnaire used to evaluate the public’s perception of arthritis (Price et al.,1983). The questions used in the research by Price et al. (1983) were similar in nature asking participants to respond yes or no to questions assessing if the participant believed arthritis could be prevented, arthritis could be helped by treatment, and arthritis could be cured once a person gets it. Potential barriers Barriers were assessed by presen ting the participants with two vignettes describing existing arth ritis interventions. Participants were asked to read the first vignette and answer the questions that fo llow. Participants were then asked to read the second vignette and answer the questions that follow. The purpose of having the participants read each vignette was to assess barriers to par ticipation (e.g., mistrust, cost, transportation) in both an existing maile d arthritis interven tion and an existing community-based arthritis intervention.

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35 The first vignette stated, “Imagine that you have been diagnosed with arthritis and have been asked to participate in an arthriti s group education course. The course will be offered at the local community center and will be taught by a person who has arthritis and has been trained to offer this course. The course will cost you $30. You will be asked to come to the center once a week from 10:00am – 12:00 noon for six weeks. In addition, to the weekly meetings you will receive The Arthritis Helpbook (a textbook for the course), Arthritis Foundation brochures, and a year’s subscription to the Arthritis Today magazine. During the six weeks you will develop an exercise program just for you, discuss arthritis medications, learn how to ma nage your pain, learn how to solve arthritisrelated problems, and learn how to communicat e with your health care providers. You will be responsible for getting yourself to and from the community center.” The second vignette stated, “You have been diagnosed with arthritis and have been informed that you can par ticipate in an at home arthr itis management program. The information will be mailed to you. The cost of the information is $30. You will be able to go through the information at your own pace. The mailed package will include The Arthritis Helpbook (a textbook for the course), inform ation sheets describing arthritis problems and solutions, a self-test, a nd a relaxation and exercise CD. The selftest will help you determine the areas that you will need to focus on to develop a personalized arthritis health care plan. You will be responsible for scoring the test yourself. The information sheets and textbook will include information on pain, physical limitations, fatigue, health concerns, exercise, medi cations, healthy eating, finding community resources, dealing with your emotions, and how to work with your doctor and the health care system.” Following each vignette was a list of potential barrier s to participation

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36 (e.g., I believe my lack of tr ust in the health care syst em would prevent me from participating; I believe it would be difficult to afford the cost of the program; I believe it would be difficult to find time to participate in the arthritis program; I believe it would be difficult to find transportation to the local comm unity center). Participants were asked to determine how much they believed each st atement using an 11-point Likert scale (0=don’t believe at all, 10=definitely believe). Arthritis intervention preferences Intervention preferences were assessed by asking about components of an existing arthri tis intervention and a bout components that could be included in potential arthritis in terventions. The questionnaire was modeled after a questionnaire developed to assess pref erences in bereavemen t service utilization (Bergman & Haley, 2009). The questionnaire as sessed preferences fo r the content (e.g., information about medications, nutrition, re ducing pain, coping with negative emotions; 0=not helpful at all, 10=extremely helpful), structure (e.g., individual, group, family), and delivery (e.g., preference for in-home program, mailed program; 0=not at all, 10=extremely) of arthritis interventions by having the participant rate the value of intervention components on an 11-point Likert scale. Utilization patterns. Utilization patterns were assessed by asking questions about the utilization of the Arthritis Foundation resources in genera l (How familiar are you with the Arthritis Foundation, 0=not at all, 10=extremely; How often have you used the Arthritis Foundation resources, 0=no t at all, 10= quite a bit) Participants were also asked to determine their ut ilization of existing arthritis in terventions available through the Arthritis Foundation (e.g., ASMP People with Arthritis can Exercise, Aquatic Program, Tai-Chi). Specifically, participants were pres ented with a list of interventions from the

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37 Arthritis Foundation and were asked to dete rmine if they had ever heard of the interventions by responding yes or no. In a ddition, participants we re asked whether or not they had ever participated in th e interventions by re sponding yes or no. Participants were also as ked to determine potential resources one would utilize for arthritis information. Questions were adap ted from a previous re search questionnaire used to examine the knowledge and beliefs that individuals have a bout arthritis (Price, Hillman, Toral, & Newell, 1983). In the work conducted by Price et al. (1983), by responding yes or no participants were aske d to determine from what people or media have they received information about arthritis (i.e., friends, relative s, television, radio, newspaper, magazines, books, physician, and Ar thritis Foundation). In the current study, utilization of resources for arthritis info rmation was assessed by providing participants with a list of places or people one may go to find information about arthritis (i.e., internet, friend, health care provider, physician, someone w ith arthritis, televisi on, radio, relatives, books, religious leader, and Arthritis Foundation) Participants were asked to determine the likelihood of seeking arthritis informati on from each source using an 11-point Likert scale (0 = not likely at all, 10 = extremely likely). Data analysis Using SPSS, descriptive analyses were conducted as they are the most common and appropriate analyses for a needs assessment (Soriano, 1995). First, exploratory data analysis was used to iden tify outliers and missing data. While missing data was minimal in this particular study, missi ng values were replaced with the mean of the non-missing values for most variables. Me an imputation is a sound way to address the missing data in that the mean of the vari able being studied would not be changed.

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38 Demographic and nominal variables were not included in the mean imputation calculations. Frequencies were examined to assess the knowledge and beliefs, barriers, intervention preferences (i.e., content, struct ure and delivery), and ar thritis resources and intervention utilization of the sample. Inferential statistics were conducted to determine the differences between Blacks with OA and Whites with OA. To address research question one, independent samples t-tests and chi-square analyses were used to examine between group differences in demographics arthritis knowledge a nd beliefs, arthritis intervention content preferences, arthritis intervention structur e and delivery preferences, utilization of select arthritis interventions where one seeks arthritis information, and barriers to participating in arthritis interv entions. While several questions were listed under specific categories (e.g., ba rriers), each question within the category was treated as an individual dependent variable All tests were examined at the significance level of .05. Chi-square analyses require a relatively even distribution of subjects to ensure that the expected frequencies for most of the cel ls are above five (Morgan, Leech, Gloeckner, & Barrett, 2004). When greater than 20% of the cells had exp ected count less than five, a Fisher’s exact test for 2X2 crosstabs was conducted. In addition to the independent samples ttests that were conducted to determine statistical significant differences between Bl acks and Whites, practical significance was examined by calculating the effect size for ea ch statistically significant outcome. The effect sizes were examined to determine th e magnitude of the difference between Black and White participants on the dependent variab les. Effect sizes were calculated by hand using the equation d= MA – MB/SDpooled. As for Chi-square analyses Phi was examined to

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39 determine the effect size. To address research question tw o, scores were ranked from a high mean to a low mean for items among each racial group. No statistical tests were conducted to determine the sign ificance of the rank order. ASMP Toolkit Evaluation Participants. Participants were recruited in the same manner as the participants from the needs assessment. Individuals who participated in the needs assessment were given the opportunity to participate in the ASMP Toolkit Evaluation. The study was approved by the Institutional Review Board of the University of South Florida. All participants provided written in formed consent prior to enrollment. The sample consisted of 61 participants (M age = 74 years, SD = 9.13). Procedure. This study was conducted using a quan titative survey research design. The questionnaire (Appendix B) was designed to evaluate the acceptability of the ASMP toolkit (i.e., evaluating how likely one is to us e the toolkit, and if the toolkit materials would be rated favorably). The eligibility re quirement for this portion of the dissertation research was the same as the requirements for the needs assessment (i.e., self-reported doctor diagnosed OA and age 50+). Based on wh at was convenient for the participants, surveys were self-administered in either a group setting or at indi vidual appointments. Participants were provided a five dollar Target gift card as a small token of appreciation. On average participants completed the questionn aire in one hour. It is important to be reminded that this study was conducted in tw o parts and participants in the needs assessment may have but did not necessarily participate in ASMP materials evaluation.

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40 Measures. Demographics. Survey questionnaires were us ed to gather information on participants’ demographic charac teristics (i.e., race, age, mari tal status, and gender). For race, participants were asked to “please tell me your race or ethnicity” with the choices being 1) White/ Caucasian, 2) Black/Afri can American, 3) Latino/Hispanic, 4) Asian/Pacific Islander, 5) Native American, or 6) Other. Age was based on self-reported date of birth and measured as a continuous va riable. Participants were also asked to report their marital status and gender. Socioeconomic status Socioeconomic status was a ssessed based on income and education level. Participants were asked to identify their to tal annual family income (i.e., wages, pensions, dividends, and any addi tional household income) by selecting an income starting at $5,000 dollars and increasi ng incrementally with the final choice being more than $100,000. Education was assessed with a 1-item question that asks “What is the highest grade of school or year of colle ge you have completed?” Choices ranged from 0 to 17+. ASMP toolkit The ASMP toolkit is a mailed ve rsion of the Arthritis Self-Help Management Program (Goeppinger et al., 2009). The development of the toolkit was the result of collaboration between Stanford University School of Medicine Patient Education Research Center, the University of North Carolina School of Nursing, and the University of North Carolina Center for H ealth Promotion and Disease Prevention. In addition, the development of the toolkit was supported by the Arthri tis Section of the CDC. The complete packaged toolkit include s a self-test that allows individuals to determine how they are impacted by arthritis and how to develop an individualized self-

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41 management program based on that impact, the Arthritis Self-Help book (Lorig & Fries, 2006), information sheets that address problems common to those with arthritis (e.g., pain management, healthy eating, working with your doctor, problem solving), action plan information sheets, a relaxation CD, two ex ercise CDs, and an illustrated guide to accompany the exercise CDs. Evaluation of materials (Appendix B) Participants were as ked to read or listen to select components of th e arthritis toolkit and evaluate the components for acceptability. Select components included th e 1) action plan information sheet, 2) problem solving information sheet, 3) healt hy eating information sheet, and 4) the finding community resources information sheet. Partic ipants were asked to rate the acceptability of the materials on an 11-point Likert scale. The questions varied based on the select component (See Appendix B). However, examples of some of the questions are as follows; 1) based on what I read about the ac tion plan: I am likely to create an action plan? (0 = not at all likely, 10 – extremely likely), 2) based on what I read about problem solving: It seems the problem solving steps were designed with people like me in mind? (0 = not at all, 10 = definitely), 3) Based on what I read about heal thy eating: I feel the healthy eating section fits my needs? (0 = not at all, 10 = extremel y), 4) Based on what I read about community resources: I am likely to use detective tools to find the answers to questions I may have about arthritis? (0 = not at all likely, 10 = extremely likely). Participants were also asked to evaluate the acceptability of a portion of the illustrated exercise guide that is included in the tool kit by answering questions similar to those listed above. In addition, to th e written components of the program, each questionnaire consisted of questi ons that asked participants to listen to four minutes of a

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42 CD. There are three questions of this nature (i.e., listening to four minutes of a relaxation CD, listening to four minutes of a guided im agery CD titled “A Wa lk in the Country”, and four minutes of an exercise CD). The re laxation CD is a recording of instructions on how to turn off the outside world in order to let your body relax. The instructions provide both mental and physical relaxation tips. The sp eaker presents the instructions in a soft tone accompanied by soft background music. The guided imagery CD is used to teach you to transport yourself to a pleasant time or place in order to take your mind off of any unpleasant feelings. The scripts for both th e relaxation CD and th e guided imagery CD are included in the appendix (See Appendices C and D). The exercise CD is a recording of instructions for exercises that can be done at home. An instructor talks you through each exercise. Materials included were selected to be representative of the kind of content included in the toolkit. Data analysis To assess the data for errors, missing data, and outliers, an exploratory data analysis was conducted. Basic descriptive analyses were used to assess the demographic characteristics of the sample Missing data was imputed with the means of the sample on each item. Demographic variables were not included in the mean imputation calculations. Comparisons of acceptability of the AS MP toolkit between Blacks with OA and Whites with OA were perf ormed using independent samples t-tests. Effect sizes were calculated to assess practical significance. Effect sizes were computed by taking the difference of the group means a nd dividing it by the standard deviation pooled.

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43 Chapter Three: Results Needs Assessment Sample characteristics. Descriptive statistics for the sample are displayed in Table 3.1. Analyses were conducted includi ng only Black and White participants. Participants included 55 White and 60 Black adults who self-reported doctor diagnosed osteoarthritis. Black and White participants in this sample were similar with respect to education. Less than 30% of th e participants in each group reported being married. This may be a result of the average age of the pa rticipants. Older women are more likely to live longer than older men and become widows. Blacks in this sample were more likely to be younger, and more likely to have a lo wer annual household income than Whites. Blacks reported significantly worse health in general and more arthritis related pain than Whites. However, there was no significant difference in the level of disability between Black and White participants. Blacks re ported having arthritis symptoms and being diagnosed with OA for a less amount time than their c ounterparts. Arthritis knowledge and beliefs Table 3.2 shows that th ere were no statistically significant differences reported between Blacks and Whites c oncerning arthritis perceptions and arthritis know ledge. Both Blacks and Whites seem to have similar perceptions on whether or not ar thritis is a normal part of aging, whether or not anything can be done about arthritis, and whether or not arthritis will only get better or worse.

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44 Table 3.1 Needs Assessment Sample Characteristics Black Participants (N=60) White Participants (N=55) Variable M (SD) M (SD) t(x2) Age (M in years) 67.21 (9.61) 77.25 (8.25) 5.90*** Education (M in years) 13.27 (2.26) 13.81 (2.45) 1.21 High school or less (%) 47.5 32.1 (2.75) More than High School (%) 52.5 67.9 Marital Status (%) Never Married 11.9 1.8 (13.11)* Separated 8.5 0 Divorced 25.4 20 Widowed 33.9 47.3 Living with Partner 0 3.6 Married 20.3 27.3 Gender (% female) 93.2 78.2 (5.34)* Income 4.29 (2.88) 5.57 (2.48) 2.31* < $5,000 – 9,999 32.7 10.9 (9.81)* $10,000 – 19, 999 28.6 28.3 $20,000 – 39,999 20.4 21.7 $40,000 – 59,999 8.2 26.1 $60,000 10.2 13.0 Health Status 1.76 (.90) 2.26 (.96) 2.85** Pain 6.81 (2.37) 5.45 (2.42) -3.03** Disability (% Yes) 63.2 71.7 (.91) Symptoms (M in years) 11.67 (9.79) 18.57 (15.22) 2.85** Arthritis Diagnosis (M in years) 10.35 (7.89) 15.99 (14.43) 2.55* *p < .05; **p < .01; ***p < .001

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45 Table 3.2 Arthritis Knowledge and Beliefs Variable Black Participants (N = 60) Whites Participants ( N=55) M SD M SD df t Normal Aging 6.14 3.64 6.13 3.21 113 -.02 Something can be done about arthritis 5.70 3.62 6.42 3.25 113 1.11 Arthritis can only get worse 6.18 3.46 5.56 3.46 113 -.95 Potential barriers Participants’ perceptions of need or lack thereof for an arthritis self-help program could serve as a barrier to particip ation. A Fisher’s exact test was used to compare the participants’ percei ved need for an arthri tis self-help program between Blacks and Whites. Of those particip ants who identified themselves as Black, 90% reported there was a need for an arthriti s self-help program. In addition, of those who identified themselves as White, 100% also reported there was a n eed for an arthritis self-help program. There was no statistica lly significant difference between Black and White participants. Participants were also as ked to explain the reas on for their response. The following quotes reflect several of the participants’ explanations. “A class would be a blessi ng to help us who are suffe ring from arthritis. Please get a class as soon as possible.” (Black, Female, Age -70) “All alternatives should be made known to the patient.” (Black, Female, Age 61) “Anything that can help peopl e.” (Black, Male, Age 50) “Because I need help with my aching and pain.” (Black, Female, Age 68) “Because it’s a lot of things I try to do and not able to do so any advice that anyone could give would be help ful.” (Black, Female, Age 59) “Because patients need to know it is like a baby starting over again. You have to walk in different shoes! Sleep, sit, and walk how to do these things all over again. Also, you have to limit what you pick up, how long you sit, and how far you can walk.” (Black, Female, Age 52)

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46 “Because when I go to the doctors and tell him I’m hurting he just gives me medication for pain.” (Black, Female, Age 71) “Educating yourself about how to mana ge the condition can have a positive impact. Sometimes not knowing what to do can cause more pain.” (Black, Female, Age 56) “Getting medical help from professional with proper knowledge is expensive and frustrating. One needs to handle the problem s from arthritis on their own as much as possible.” (White, Male, Age 85) “I believe it is something I have to live w ith and self-help instructions could make it easier.” (Black, Female, Age 77) “I believe that there are very few people who are diagnosed and given any more than medication. No education how they “got it” and/or what th ey can do about it other than meds.” (White, Female, Age 67) “It helps deal with the ch allenge. It can keep you r ealistic on how you deal with this challenge in your life. ” (White, Female, Age 68) “Too much conflicting information out there, not sure what is fact and what is fallacy.” (White, Female, Age 67) “People want to be active without pain.” (White, Female, Age 74) “We all need all the help we can get.” (White, Female, Age 82) “Especially for younger people if the se rvice can provide some exercising, meditation, training which might detour the progression of arthritis.” (White, Female, Age 81) “It would help with pain and move ment.” (White, Female, Age 79) “There are ways to help people cope w ith arthritis, but many people don’t have access to them.” (Black, Female, Age, 71) Table 3.3 reports race differences in barri ers to participating in the communitybased ASMP. While there were no significan t differences between Blacks and Whites on the perceptions of need for an arthritis se lf-help program, there we re significant group differences on other variables assessing potential barriers to participation in the ASMP. First, results will be reported for the barri ers for the community-based intervention. Then

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47 results will be reported for barriers of th e ASMP toolkit, the at home version of the ASMP. Specific to the community-based self-management program, differences were found on five variables. Blacks were more likely to report that their lack of trust in the healthcare system, fear of being the only pers on of their race in the program, and the cost of the program would be a barr ier to participating in comparison to Whites. Blacks were also more likely to report that they would only participate in the program if family and friends thought it was a good idea, and only if recommended by a doctor. Effect sizes for statistically significant findi ngs ranged from .37 to .67. According to guidelines suggested by Cohen, .20 is considered a sma ll effect size, .50 is considered a medium effect size, and .80 is considered a large effect size (Morgan et al., 2004; Newton & Rudestam, 1999). The medium effect sizes f ound in these analyses suggest that not only are the group differences concer ning fear of being the only person of their race and cost statistically significant, but also practically significant. There were no statistically significant race differences in believing the program would be helpful, finding the drive or determination to participate in the program the difficulty to find time to participate, conflict with family responsib ilities, lack of neighborhood sa fety, other health concerns, or being physically unable servi ng as potential barriers to participation in a communitybased ASMP. Contrary to expectations, ther e were no group differences in transportation or family responsibilities as potential barriers to pa rticipation in the tr aditional arthritis self-management course. No statistica l tests were conducted to determine the significance of the rank order of the barriers to participating in the community-based ASMP, however Blacks and Whites were simila r reporting cost, difficult to find time, and

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48 hard to find the drive and determination as the top three barriers. Cost was the largest barrier for Blacks whereas difficult to find time was the largest barrier for Whites. Table 3.3 Barriers to Participation in ASMP (community-based intervention) Variable B W Black Participants (N = 60) White Participants ( N=55) Rank Rank M SD M SD df t d Cost 1 3 5.95 4.19 3.71 3.80 113 -2.99** .54 Difficult to find time 2 1 5.23 3.77 4.65 3.73 113 -.83 .15 Hard to find the drive or determination 3 2 4.98 3.70 4.49 3.77 113 -.71 .13 Only if recommended by my doctor 4 6 4.57 4.15 3.06 3.75 113 -2.04* .38 Other health concerns 5 4 4.27 3.65 3.29 3.33 113 -1.49 .28 Lack of trust in the healthcare system 6 8 3.95 3.75 2.61 3.34 113 -2.02* .37 Difficult to find transportation 7 5 3.82 4.04 3.15 3.80 113 -.92 .17 Family responsibilities 8 9 3.39 3.62 2.40 3.45 113 -1.51 .28 Only if family and friends thought it was a good idea 9 11 3.25 3.99 1.67 3.18 110.93a -2.35*a .42 Physically unable 10 10 3.16 3.64 2.29 3.13 113 1.37 .25 Fear of being the only person of my race 11 13 2.78 3.78 .67 1.68 82.94a -3.93***a .67 My neighborhood is not safe 12 12 2.45 3.48 1.38 2.62 109.05a -1.87a .34 Believe the program will be helpfulb 13 7 1.84 2.70 2.65 2.91 113 1.56 .29 Note B = Black Participants; W = White Participants. aThe t and df were adjusted because variances were not equal. bReverse coded *p < .05; **p < .01; ***p < .001 As shown in Table 3.4 the independent samp les t-tests for barrie rs to participation in an at home self-management program (ASMP t oolkit) yielded similar results to that of the community-based arthritis self-managemen t program. Specifically, Blacks were more likely to report lack of trust in the healthca re system, fear of be ing the only person of their race in the program, onl y participating if family a nd friends thought it was a good

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49 idea, and cost as potential barriers to participating in the at home self-management program in comparison to their counterpart s. We found medium ef fect sizes for each statistically significant group difference, ra nging from .50 -.52. Recommendation of the doctor was no longer statistically significan t. While no statistical tests were conducted, groups differed somewhat in the rank order of barriers to partic ipation in the ASMP toolkit intervention. Blacks still reported cost as the greatest barrier to participation in the ASMP toolkit. Arthritis intervention preferences Table 3.5 displays mean differences between Blacks and Whites on preferences for interventi on content. Significa nt group differences were found on all of the intervention conten t variables examined except for teaching you to improve physical functioning and teach ing you about non-traditional treatment options. Intervention content was more highly favored by Blacks on all significant variables. In other words, Blacks were mo re likely to think th e variables would be helpful if included in an arth ritis intervention. Effect size s for statistically significant findings ranged from .39-.78. Groups were not similar on the rank order of content preferences for an ar thritis intervention.

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50 Table 3.4 Barriers to Participation in AS MP Toolkit (home-ba sed intervention) Variable B W Black Participants (N = 60) White Participants ( N=55) Rank Rank M SD M SD df t d Cost 1 3 5.84 4.28 3.18 3.79 113 -3.52** .50 Only if recommended by my doctor 2 5 3.79 3.93 2.75 3.50 113 -1.50 .28 Hard to find the drive or determination 3 1 3.78 3.56 4.06 3.51 113 .41 .08 Difficult to find time 4 2 3.73 3.87 3.31 3.40 113 -.62 .11 Other health concerns 5 4 3.46 3.57 3.02 3.35 113 -.68 .13 Physically unable 6 6 3.31 3.70 2.33 3.33 113 -1.49 .28 Believe the program will be helpfulb 7 7 3.16 3.10 2.04 3.27 113 1.88 .35 Lack of trust in the healthcare system 8 9 3.02 3.72 1.39 2.35 100.86a -2.83**a .50 Only if family and friends thought it was a good idea 9 10 2.75 3.67 1.15 2.39 102.32a -2.97**a .50 Family responsibilities 10 8 2.58 3.56 1.62 2.70 109.27 -1.64 .30 Fear of being the only person of my race 11 11 2.16 3.46 .68 1.61 85.1a -2.97**a .52 Note B = Black Participants; W = White Participants. aThe t and df were adjusted because variances were not equal. bReverse coded *p < .05; **p < .01; ***p < .001

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51 Table 3.5 Preferences on Intervention Content B W Black Participants (N = 60) White Participants ( N=55) Variable Rank Rank M SD M SD df t d Teach you helpful exercises 1 5 9.23 2.11 8.02 2.73 101.59 a -2.66**a .49 Get the most out of the healthcare system 1 3 9.23 1.57 8.11 2.33 93.32 a -3.01** a .55 Teach you about your type of arthritis 2 10 9.20 1.70 7.83 2.63 91.16 a -3.29** a .60 Reduce your pain 3 2 9.18 2.08 8.29 2.44 113 -2.12* .39 Problem solving-skills for arthritis related problems 4 6 9.13 1.88 7.93 2.81 93.17 a -2.68** a .50 Treatment decisions 5 4 9.06 1.96 8.03 3.20 113 -2.70** .48 Problem solving skills in general for health related problems 6 7 9.01 1.96 7.91 2.70 98.03 a -2.48* a .46 Nutrition and healthy and eating 7 11 8.95 2.20 7.56 2.87 100.88 a -2.88** a .53 Improve physical functioning 7 1 8. 95 2.25 8.33 1.83 113 -1.62 .30 Arthritis healthcare options/ resources other than PCP 8 8 8.89 1.92 7.88 2.67 97.39a -2.31* a .43 Make meals you eat already in a healthier way 9 15 8.88 2.42 7.24 2.94 113 -3.28** .59 Arthritis medications that are available 9 13 8.88 2.12 7.40 3.14 93.22 a -2.95** a .54 Various types of arthritis 10 18 8.87 2.07 6.82 3.19 91.28 a -4.05***a .72 Talk to professionals about your arthritis 11 14 8.75 2.46 7.29 2.87 106.85 a -2.91** a .53 Information about the use of medications 12 12 8.62 2.60 7.49 3.00 113 -2.16* .40 Decrease negative emotions 12 19 8.62 2.68 6.80 3.46 101.48 a -3.13**a .57 Set personal treatment goals and a plan of action 13 17 8. 48 2.34 6.98 3.13 99.60 a -2.90** a .53 Choose a doctor 14 16 8.47 2.69 7.16 3.10 113 -2.45* .45 Non-traditional treatment decisions 15 9 8.40 2.76 7.86 2.84 113 -1.04 .20 Talk to family and friends about your arthritis 16 20 8.34 2.78 5.87 3.47 103.50 a -4.18*** a .73 Internet sources for arthritis care 17 22 8.08 3.07 5.16 3.92 102.35 a -4.43*** a .78 Discrimination in healthcare 18 21 8.05 3.16 5.86 3.97 103.13 a -3.26** a .59 Note B = Black Participants; W = White Participants. aThe t and df were adjusted because variances were not equal. *p < .05; **p < .01; ***p < .001

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52 Regarding intervention structure and delivery, independent samples t-tests resulted in a statistical signi ficant difference on 19 out of 22 variables (Table 3.6). In comparison to Whites, Blacks were more likel y to see the need of the structure and delivery variables for an arthritis interventi on. Effect sizes ranged from .43-.97. Blacks rated the preference to have the interventi on mailed as the highest, whereas Whites responded most favorably to having the in tervention led by someone who has arthritis themselves. No statistical tests were conducte d to determine the sign ificance of the rank order of preferences. Utilization patterns. Participants were asked to rate their preferences of resources for arthritis information. The re sults of the independent samples t-tests between Blacks and Whites are shown in Ta ble 3.7. In comparison to Whites, Blacks reported they would be more likely to seek info rmation from all listed arthritis resources. There were significant differe nces between the groups on al l variables except for the likelihood of one seeking arthritis inform ation from a physician. Effect sizes for statistically significant findi ngs ranged from .38-.72. Both Blacks and Whites rated physician, healthcare provider, and arthritis foundation as the places they would most likely go to for arthritis information. Amongs t the list of resources interestingly both groups report religious leaders as the resource they would l east likely go to for arthritis information.

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53 Table 3.6 Preferences on Intervention Structure and Delivery B W Black Participants (N = 60) White Participants ( N=55) Variable Rank Rank M SD M SD df t d Mailed 1 5 8.57 2.41 5.93 3.62 92.79a -4.56***a .80 Include discussion with other people who have arthritis 2 2 8.20 2.89 6.47 3.28 113 -3.00** .54 Offer a class to a group teaching you to manage arthritis 3 3 7.89 3.30 6.42 3.40 113 -2.35* .43 Given at a community or senior center 4 8 7.53 3.39 5.49 3.62 113 -3.11** .56 Bring a friend for support and to learn with you 5 15 7.52 3.27 4.06 3.55 113 -5.45*** .91 Led by someone who has arthritis themselves 5 1 7.52 3.19 6.68 2.90 113 -1.48 .27 Video-Tape/ DVD 6 6 7.43 3.54 5.76 3.71 113 -2.46* .45 Given in your neighborhood 7 4 7.40 3.60 6.24 3.52 113 -1.74 .32 Cassette Tape/CD 8 9 7.29 3.65 5.26 3.82 113 -2.92** .53 Given in an instructions or lecture format 9 7 7.28 3.54 5.74 3.15 113 -2.46* .45 Given at the local Arthritis Foundation 10 12 7. 15 3.47 4.69 3.35 113 -3.86*** .68 Material on spiritual beliefs 11 13 7.10 3.53 4.55 3.77 113 -3.75*** .66 Given at a local health clinic 12 14 7.01 3.18 4.07 3.17 113 -4.95*** .84 Bring a family for support and to learn with you 13 16 6.95 3.86 4.00 3.55 113 -4.25*** .73 Include people in your same age group 14 11 6. 63 4.44 4.76 3.72 113 -2.44* .45 Given at a local church 15 17 6.39 3.86 3.00 3.16 116.64 a -5.17*** a .86 Include people of your race 16 18 5.60 4.47 2.59 3.33 108.61 a -4.12*** a .71 Be given by someone of the same gender 17 19 5.36 3.96 2.06 3.04 109.74 a -5.05* a .85 Provide child care services 18 20 5.15 4.35 1.55 2.68 99.41 a -5.39*** a .88 Be limited by condition 19 10 5.12 4.19 4.84 3.44 111.66 a -.39 a .07 Given by someone of the same race 20 22 4.70 4.23 .98 1.95 84.45 a 6.13*** a .97 Be limited by gender 21 21 4.15 4.00 1.38 2.38 97.46 a -4.55***a .77 Note B = Black Participants; W = White Participants. aThe t and df were adjusted because variances were not equal. *p < .05; **p < .01; ***p < .001

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54 Table 3.7 Preferences of Resour ces for Arthritis Information Variable B W Black Participants (N = 60) White Participants ( N=55) Rank Rank M SD M SD df t d Physician 1 1 8.71 2.49 7.97 2.36 113 -1.62 .30 Healthcare Provider 2 3 8.67 2.21 7.51 2.63 113 -2.55* .46 Arthritis Foundation 3 2 8.65 2.22 7.57 2.53 113 -2.45* .45 Someone with arthritis 4 4 7.35 3.23 5.74 3.01 113 -2.76** .50 Books 5 5 7.02 3.41 5.28 3.30 113 -2.78** .50 Relatives 6 9 5.69 3.75 3.14 2.83 109.07a -4.14*** a .72 Internet 7 6 5.67 4.25 4.11 3.92 113 -2.04* .38 Friend 8 7 5.66 3.76 3.70 3.24 113 -2.97** .54 TV 9 8 5.32 3.77 3.17 3.02 111.05a -3.38** a .59 Radio 10 10 4.38 3.84 2.12 2.94 109.58a -3.57** a .63 Religious Leader 11 11 3.65 3.73 1.72 2.44 102.46 a -3.30** a .58 Note B = Black Participants; W = White Participants. aThe t and df were adjusted because variances were not equal. *p < .05; **p < .01; ***p < .001 To investigate the differences between Blacks and Whites familiarity of the Arthritis Foundation and the Arthritis Founda tion Intervention Programs independent samples t-tests and ChiSquare analys es were conducted (Table 3.8). Although participants reported that they would be likely to seek in formation from the Arthritis Foundation, participants did not report being very familiar with the Arthritis Foundation (mean SD 2.73 3.26 versus 2.89 3.22; p = 27; Blacks versus Whites respectively) or report a great deal of use of the Arth ritis Foundation resour ces (1.50 2.83 versus 1.38 2.70; p =.-22; Blacks versus Whites respec tively). There was no significant difference between Blacks and Whites familiarity of th e Arthritis Foundation, or use of Arthritis Foundation resources in general. When asked about specific Arthritis Foundation intervention programs, Pearson chi-square resu lts indicated that Blacks were significantly

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55 less likely to have heard of the Arthritis Foundation Aquatic s Program, and the Arthritis Foundation Tai-Chi program. In addition, result s indicate that Blacks were more likely to have participated in the Arth ritis Foundation People with Arth ritis can Exercise program, but less likely to have participated in the Arthritis Foundation Tai-Chi program in comparison to Whites. Table 3.8 Familiarity with the Arthritis Foundation and Programs Variable B W Black Participants (N = 60) White Participants ( N=55) Rank Rank x2 Heard of PACE (% Yes) 1 3 45.3 35.3 1.08 Heard Tai-Chi (% Yes) 2 1 34.8 71.7 13.54*** Heard of ASHC (% Yes) 3 4 20 13.5 .79 Heard of Aquatics Program (% Yes) 4 2 18.4 44.4 8.02** Participated in PACE (% Yes) 1 3 16.9 3.8 4.92* Participated in Tai-Chi (% Yes) 1 1 16.9 37.7 6.15* Participated in ASHC (% Yes) 2 2 13.8 10.9 .22 Participated in Aquatics Program (% Yes) 3 2 11.9 11.3 .01 Note B = Black Participants; W = White Participants. *p < .05; **p < .01; ***p < .001 ASMP Toolkit Evaluation Sample characteristics Descriptive statistics for the sample are displayed in Table 3.9. Only Black and White participants were included in the analyses. Participants included individuals who self -reported a doctor-diagnosed case of OA. There were no significant race differences in the participant’s age, marital status or income. The majority of the participants, both Black and White, were widowed Whites were more likely to have a higher education level than Black participants.

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56 Table 3.9 ASMP Sample Characteristics Black Participants (N=34) White Participants (N=27) Variable M (SD) M (SD) t(x2) Age (M in years) 73.80 (7.89) 74.50 (10.55) .29 Education (M in years) 12.24 (2.43) 14.70 (2.30) 4.04*** High school or less (%) 73.5 33.3 (9.87)** More than High School (%) 26.5 66.7 Marital Status (%) Never Married 8.8 0 (10.9) Divorced 8.8 29.6 Widowed 58.8 44.4 Living with Partner 0 11.1 Married 23.5 14.8 Gender (% female) 90.9 85.2 (.47) Income 3.75 (2.51) 4.40 (2.46) .87 < $5,000 – 9,999 37.5 15 (9.80)* $10,000 – 19, 999 33.3 45 $20,000 – 39,999 8.3 25 $40,000 – 59,999 16.7 5 $60,000 4.2 10 *p < .05; **p < .01; ***p < .001 Evaluation of materials Table 3.10 shows that there were no significant differences between Blacks and Whites in the acceptability of the action plan information sheets, and one of the exercise CDs included in the ASMP toolkit. Blacks and Whites were similar on the rank order fo r the acceptability of the action plan but were not similar on questions pertaining to the exercise CD. As shown in Table 3.11

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57 there were also no significant differences between the groups’ acceptability of the problem solving information sheets that ar e included in the toolkit. However, independent samples t-tests for acceptability of the illustrated exercise guide yielded group differences on two items. Blacks were sign ificantly more likely to say they would use the exercise guide for their arthritis, and more likely to tell a friend to use the exercise guide in comparison to Whites. Effect sizes for significant findings ranged from .62-.69. Interestingly, Blacks and Whites ranked the quest ions for the acceptabil ity of the exercise guide in the same order. Blacks did not rank acceptability of the pr oblem solving section similarly. No statistical test was conducte d to determine significance of rank order. Table 3.10 Acceptability of ASMP Toolk it (Action Plan and Exercise CD) Variable B W Black Participants (N = 34) White Participants ( N=27) Rank Rank M SD M SD df t d Action Plan The action plan was designed with people like me in mind 1 1 7.20 2.83 6.52 3.07 59 -.90 .23 An action plan will help my arthritis 2 4 6.98 2.60 5.86 3.06 59 -1.41 .36 Likely to follow an action plan 3 3 6.15 2.69 5.85 2.96 59 -.41 .11 Likely to create an action plan 4 2 5.97 2.92 6.26 2.78 59 .40 .10 Exercise CD Liked listening to the CD 1 3 8.09 2.60 7.55 3.02 59 -.75 .19 Found CD very helpful 2 5 7.90 2.87 7.02 3.52 59 -1.08 .28 Someone from my cultural/racial group can relate to the speaker 3 2 7.76 2.56 7.93 2.82 59 .24 .06 Exercise CD is meant for people like me 4 4 7.65 2.71 7.07 3.25 59 -.75 .19 Would tell my friends to use the CD for their arthritis 5 6 7.62 3.13 6.18 3.63 59 -1.65 .42 Feel confident I would use the CD at home on my own 6 7 7.52 3.31 5.99 3.71 59 -1.70 .43 Confident I can do the exercises on the CD even with my arthritis 7 1 7.18 2.92 8.07 2.40 59 1.29 .33 Note B = Black Participants; W = White Participants. *p < .05; **p < .01; ***p < .001,

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58 Regarding the acceptability of the comm unity resources section of the ASMP toolkit, independent samples t-tests resulted in no statistical differences between Blacks and Whites (Table 3.12). Participants were al so asked to rate the acceptability of the ASMP toolkit relaxation CD. Significant differences were found on one item. Blacks were more likely to report that they would recommend the relaxation CD to their friends to use the CD for their arthritis in comp arison to Whites (Table 3.12). Blacks did not rank the acceptability of the community resources and relaxation CD similarly. Table 3.11 Acceptability of AS MP Toolkit (Problem Solvi ng and Exercise Guide) Variable B W Black Participants (N = 34) White Participants ( N=27) Rank Rank M SD M SD df t d Problem Solving Problem-solving steps were designed with people like me in mind 1 4 8.32 2.04 7.03 3.03 59 -1.98 .50 Would use problem solving skills to reduce my problems in general 2 5 8.26 1.98 7.02 3.04 42.60a -1.82a .48 Found problemsolving to be very helpful 3 3 8.06 2.13 7.15 2.93 59 -1.41 .36 Would use problemsolving skills to reduce arthritis problems 4 2 7. 91 2.35 7.19 2.83 59 -1.10 .28 Learning problemsolving skills would help my arthritis 5 1 7.83 2.56 7.50 2.93 59 -.46 .12 Exercise Guide Feel that someone from my cultural/racial group can relate to the pictures 1 1 8.21 2.48 7.43 2.40 59 -1.23 .31 Likely that exercise were meant for people like me 2 2 8.03 2.33 6.76 2.83 59 -1.93 .48 Exercise pictures were helpful 3 3 7.94 2.64 6.68 2.94 59 -1.76 .45 Would tell my friends to use the guide 4 4 7.71 2.77 5.81 3.10 59 -2.52* .69 Likely to use guide at home for my arthritis 5 5 7.38 2.82 5.18 3.20 59 -2.85** .62 Note B = Black Participants; W = White Participants. aThe t and df were adjusted because variances were not equal. *p < .05; **p < .01; ***p < .001

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59 Table 3.12 Acceptability of AS MP Toolkit (Community Res ources and Relaxation CD) Variable B W Black Participants (N = 34) White Participants ( N=27) Rank Rank M SD M SD df t d Community Resources Confident I can find community resources to help with my arthritis 1 3 9.76 14.06 6.75 3.27 59 -1.08 .08 Likely to use detective tools to find answers to my arthritis questions 2 2 7.30 2. 70 6.82 3.20 59 -.63 .16 Detective tools were meant for people like me 3 1 7.12 2.73 7.03 3.13 59 -.11 .02 Confident I can find community resources to help me in general 4 4 6.75 2.93 6.62 3.20 59 -.16 .04 Relaxation CD Would tell my friends to use CD for their arthritis 1 8 8.16 1.87 6.42 3.28 39.14a -2.46*a .64 Found CD to be very helpful 2 6 8.03 2.30 7.02 3.36 44.07a -1.34a .36 Would use the CD at home on my own 3 7 7.92 2.60 6.50 3.37 47.90a -1.82a .47 Feel that someone from my cultural/racial group can relate to the speaker 4 1 7.85 2.40 8.03 2.38 59 .30 .08 Relaxation CD is meant for people like me 5 5 7.83 2.23 7.32 3.22 44.32a -70a .19 Can use the relaxation to benefit my arthritis 6 4 7.81 2.71 7.36 3.17 59 -.61 .16 Liked listening to the CD 7 2 7.80 2.22 7.51 3.08 59 -.44 .11 Can relate to the story on the CD 8 3 7.59 2.85 7.43 3.05 59 -21 .05 Note B = Black Participants; W = White Participants. aThe t and df were adjusted because variances were not equal. *p < .05; **p < .01; ***p < .001

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60 When asked to rate the a cceptability of the healthy ea ting portion of the toolkit, Blacks reported in comparison to Whites that th ey were more likely to change their eating habits based on the material learned, and more likely to understand how a change in their eating habits would benefit thei r arthritis. In addition, Blacks were more likely to believe that the healthy eating section was designed w ith people like them in mind in comparison to their counterparts (Table 3.13). Effect sizes for significant findings ranged from .60.71. Blacks and Whites ranked the questions in the healthy eating section similarly. Also shown in Table 3.13, there were significant diffe rences in the acceptability of the imagery CD that accompanies the ASMP toolkit. Bl acks seemed to find the imagery CD more acceptable than Whites. Blacks were more likel y to believe the CD was meant for people like them, more likely to find the CD helpful, more likely to feel confident that they would use the CD at home on th eir own, and more likely to recommend the use of the CD to their friends who have arthritis. For all of the statistically significant findings, effect sizes ranged from .57-.71. Although very few differences were found between Blacks and Whites on the acceptability of each section of the toolkit, several group differences were found when participants were asked to ra te their acceptability or the toolkit in general based on the parts they had seen or heard. Findings are reported in detail in Table 3.14. Blacks were more likely than Whites to feel the written material was offensive, more likely to feel the graphics were offensive in some way, and mo re likely to feel the audio was offensive in some way. Contrary to the fi ndings concerning the offensiv eness of the graphics and written material, Blacks were also more likely to report that the pr ogram materials were visually appealing, and the program material was easy to read in comparison to Whites.

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61 The acceptability of the problems addressed in the toolkit, attending a traditional ASMP, the likelihood of exercising w ith the entire exercise CD was rated higher by Black participants in comparison to White particip ants. Effect sizes ranged from medium to very large. Table 3.13 Acceptability of ASMP Tool kit (Healthy Eating and Imagery CD) Variable B W Black Participants (N = 34) White Participants (N=27) Rank Rank M SD M SD df t d Healthy Eating Healthy eating section fits my needs 1 1 8.47 2.02 7.41 2.96 59 -1.66 .42 Seems healthy eating section was designed with people like me in mind 2 2 8.38 2.41 6.33 3.43 44.98a -2.63* .67 See how changing my eating would help my arthritis 3 3 8.04 2.45 6.26 3.32 46.47a -2.33*a .60 Likely to change my eating based on material learned 4 4 7.45 2.70 5.15 3.42 59 -2.94** .71 Imagery CD Liked listening to the CD 1 2 8.17 2.23 6.89 3.20 59 -1.84 .47 Found the CD helpful 2 4 8.07 2.13 6.00 3.61 39.93a -2.64*a.68 Would tell my friends to use the CD for their arthritis 3 7 7.78 2.45 5.59 3.72 42.96a -2.64*a .68 Feel confident I would use the CD at home on my own 4 8 7.70 2.71 5.30 3.72 46.11a -2.82**a .71 Someone from my cultural/racial can relate to the speaker 5 1 7.75 2.11 7.04 2.78 59 -1.14 .57 CD is meant for people like me 6 6 7.64 2.50 5.88 3.49 45.56a -2.29*a .30 Can relate to the story on the CD 7 3 7.57 2.56 6.49 3.42 59 -1.41 .36 Confident I can use the CD to help with my arthritis 8 5 7.30 2.63 5.91 3.49 47.14a -1.72a .45 Note B = Black Participants; W = White Participants. a The t and df were adjusted because variances were not equal. *p < .05; **p < .01; ***p < .001,

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62 Table 3.14 Acceptability of AS MP Toolkit (In General) Note B = Black Participants; W = White Participants. a The t and df were adjusted because variances were not equal. bReverse coded *p < .05; **p < .01; ***p < .001,Variable B W Black Participants (N = 34) White Participants ( N=27) Rank Rank M SD M SD df t d In General Did you find the material easy to read 1 6 8.34 2.49 6.73 3.25 59 -2.20* .55 Did you feel the print was big enough 2 5 8.12 2.95 6.83 3.64 59 -1.52 .39 Are the arthritis program materials visually appealing 3 8 8.07 2.20 4.42 3.35 42.90a -4.88***a 1.11 Are the problems and concerns addressed problems you have with your arthritis 4 7 7.58 3.01 5. 88 2.70 59 -2.30* .57 Likely you would listen to and exercise with a 20 min. CD 5 9 7.41 2.82 4.15 3.18 59 -4.24*** .97 Would you attend the traditional ASMP 6 10 6.47 3.65 2.28 2.70 59 -4.97*** 1.08 Is the written material in any way offensiveb 7 3 5.83 4.17 8.74 2.26 52.76a 3.48**a .78 Is the audio in any way offensiveb 7 2 5.83 4.20 8.78 1.84 47.39a 3.40**a .80 Are the pictures or graphics in any way offensiveb 8 1 5.66 4.26 9.19 1.46 42.25a 4.53***a .95 Anything in the materials that made you feel uncomfortable or was not acceptableb 9 4 5.39 4.17 7.24 3.78 59 1.79 .45

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63 Chapter Four: Discussion In light of the fact that addressing hea lth disparities has been the focus of the CDC, Department of Health and Human Serv ices, and the National Arthritis Action Plan (CDC, 2010b), the current dissert ation sought to examine ways that arthritis interventions (i.e., ASMP) could potentially address those di sparities. Specifically, we sought to examine whether Blacks and Whites differ on thei r preferences for arthritis interventions and acceptability of the ASMP t oolkit. To our knowledge this study is among the first to evaluate the needs of individuals with OA in this manner. Our first research question was to determine whether there were race differen ces between Blacks and Whites in arthritis knowledge and beliefs, barriers to healthcare arthritis intervention preferences, and utilization. Knowledge and Beliefs In this particular study, our findings showed that there were no race differences specific to knowledge and beliefs about arthritis. Blacks and Whites had similar perceptions about arthritis. Both groups reported that th ey thought that arthritis was somewhat due to normal aging, and could onl y get worse. Moreover, both groups only partially felt that something could be done a bout arthritis. These findings support results of previous research that have examined ar thritis perceptions in older adults. Common misperceptions about arthritis tend to be highly prevalent among older adults (Appelt, Burant, Siminoff, Kwoh, & Ibrahim, 2007; G oodwin, Black, & Satish, 1999). According

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64 to Appelt et al. (2007), OA patients show a si gnificant relationship between their age and beliefs about arthritis. Speci fically, the older the patient the more likely they are to believe that arthritis is a na tural part of aging, and that people should expect functional impairment and pain as they age. In a ddition, older individuals believed that once you have arthritis the disease will only worsen over time (Appelt et al., 2007). Goodwin and colleagues (1999) found that 39 % of their sample of olde r adults had no opinion about the cause of arthritis, and approximately 22% of the sample stated that old age was the cause of arthritis. Such beliefs appeared to be tied to the participant’s health care decisions. Participants who t hought nothing could be done for ar thritis were less likely to have a primary physician, and those believing th at it was a result of old age were less likely to have received preventive care (Goodw in et al., 1999). Devoting efforts to further understand older adult’s knowledge and percepti ons about arthritis may aid in reducing the major public health problem associated w ith arthritis as well as arthritis health disparities. Potential Barriers Relatively little is known about whether or not individuals feel the need for a selfmanagement program for arthritis and whether or not the perception of need or lack of need would serve as a barrier to participati on. Our findings suggest that both Blacks and Whites perceive a similar level of need fo r an arthritis self-management program. Therefore, our findings suggest that lack of need for a self-management program is not a potential barrier to participat ion. In other words, individua ls expressed a strong need for a program of this type which likely would increase participation. While findings vary (Chodosh et al., 2005; Warsi, LaValley, Wang, Avorn, & Solomon, 2003), a great deal of

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65 research has found self-management programs to be beneficial to individuals dealing with arthritis and complications associated w ith arthritis (Brady et al., 2003; Fries, Carey, McShane, 1997; Goeppinger et al., 2009; Lo rig, 2003; Lorig et al ., 2004; Lorig et al., 2005; Lorig, Ritter, Laurent, & Plant, 2008) While chronic conditions like OA are not immediately life threatening they are also not curable and may prove to be burdensome over time. Learning how to manage the conditi on across one’s lifespa n is imperative to quality of life. Regardless of the need expressed by indivi duals as in this study and the evidence of its effectiveness from previ ous research (Brady et al., 2003), selfmanagement programs have not been widely ac cepted as a vital part of the health care system by health care provi ders (Lorig, 2003; Redman, 2004). In addition, although endorsed by the Arthritis Foundation and th e CDC, it seems that arthritis selfmanagement programs oftentimes are not promoted by clinicians (i.e., primary physicians, rheumatologists) as an option to treating arthritis (R edman, 2004). In fact previous research has referre d to self care as the hidden health care system putting an emphasis on the fact that in spite of the lack of acceptance by clinicia ns, self care or selfmanagement comprises the majority of hea lth care (Keysor et al., 2003; Sobel, 1995). Specifically, patients self-manage up to 90% of their symptoms without any assistance from a healthcare provider (Sobel, 1995). Th ese findings suggest that perceived need coupled with the benefits of arthritis in terventions underscore the importance of an ASMP for both Blacks and Whites. The hypotheses concerning barriers to part icipation in both the community-based ASMP and the ASMP toolkit intervention we re only partially confirmed. Blacks were more likely than Whites to report lack of tr ust in the healthcare system, cost of the

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66 program, and fear of being the only person of their race as pote ntial barriers to participating in both of the self-managem ent programs. Based on the participants’ responses, cost was the biggest barrier to part icipation for Blacks. These barriers are not unfamiliar when considering overall barriers to healthcare for Blacks and factors that have been documented in the literature as potential contributors to health disparities (IOM, 2003). Previous research has documented c oncerns with socioeconomic status and healthcare parity. The fact that Blacks were mo re likely to see the cost of the program as a barrier may be a reflection of their SES a nd ability or lack thereof to pay for programs that are not covered by their insurance. Research has consistently documented the inequalities in SES between Blacks and Whites (IOM, 2003; Williams, Yu, & Jackson, 1993). According to the U.S. Census Bu reau, approximately 25% of Blacks in comparison to approximately 8% of White s are living at the poverty level (DHHR, 2009b). Moreover, Blacks in this study had a statistically significantly lower income in comparison to Whites. Based on these statistics and the characteristics of our sample it is understandable that Blacks would be more likel y to see cost as a ba rrier to participating in the program, particularly if you feel that other issues are more pressing. Therefore, it is imperative to make self-management program s affordable to individuals with low or fixed incomes that otherwise would not pa rticipate. While similar access may not guarantee similar use of the ASMP, however, it will begin to provide equal opportunity. Consistent with prior re search Blacks are known to express distru st in the healthcare system (LaVeist, 2004 ). Lack of trust could hinder optimal healthcare. Cultural mistrust, which is the mistrust of Whites by Blacks in politics, interpersonal

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67 relations, education and training, and busine ss and work, could also be a potential explanation as to why Blacks were more likely to report distrust in the healthcare system as a barrier to participating. Previous re search has shown that among Blacks, perceived racism along with cultural mistrust had a ne gative impact on the trust of the healthcare provider and health care system (Benkert, Peters, Clark, & Keves-Foster, 2006; Benkert, Pohl, & Coleman-Burns, 2004). While this research study did not examine cultural mistrust and only examined trust as a barrier to participation with a single-item question, it does suggest that more resear ch is warranted to analyze the correlation between trust and participation in the ASMP for Blacks with OA. Blacks were also more likely to report th at their fear of being the only person of their race in the program woul d serve as a barrier to participation. This and the above findings may be closely tied to the perceive d discrimination that Blacks experience in general. Fear of being the only person of your race in the program may directly be a result of fear of racism and discriminati on. Specifically, Blacks w ith OA have reported perceived discrimination due to race at a hi gher rate than Whites (54% versus 2%; McIlvane, Baker, & Mingo, 2008). Interestingl y, the results of the needs assessment also show that Blacks were more likely th an Whites to report that they would only participate in the community-based ASMP if recommended by their doctor or their family and friends thought it was a good idea, however, the findings did not remain the same for the ASMP toolkit. For the ASMP toolkit, there were no differences between Blacks and Whites basing their participation on the recommendation of their doctor. It may be that neither Blacks nor Whites see the need to obtain a doctor recommendation for an at home program. In other words, the skepticism of participating may decrease

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68 with the option of being able to participat e at home on one’s own time. Not only were there significant differences between Black s and Whites concerning the aforementioned barriers, examination of effect sizes also suggested prac tical significance. Little to no data is available on barrier s to participation in the ASMP. However, based on the general health disparities liter ature and studies that examine barriers to participating in health related research we made directional predictions. Contrary to our predictions, there was no difference between Blacks and Whites reporting that family responsibilities, and tr ansportation, served as a barrier to participating in the arthritis programs. Each of these factors have been s hown to interfere with either healthcare or participation of minorities in health related programs or research (Banks-Wallace & Conn, 2002; Kimsey, Ham, & Macera, 2001; Ryall et al; 2003; Walcott-McQuigg & Prohaska, 2001 Williams & Jackson; 2005). Findings may say something about the recruitment efforts of the study. Specific to transportation many participants were recruited from places in which they traveled to get there (e.g., participants were asked to meet me at their church). Future research is warran ted to further understand why differences were not found. Arthritis Intervention Preferences In the current study, differences in prefer ences regarding the content and structure and delivery of an arthritis self-managemen t intervention were examined. Based on the findings Blacks were significan tly more likely to prefer mo st items (i.e., 20 out of 22 of the items measuring preference of interventi on content, and 19 out of 22 of the items measuring preference of intervention structur e and delivery). It appears that Blacks preferred everything more than Whites, howev er these findings may not be a result of

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69 true differences, but more so a result of res ponse styles. Response st yles to consider are acquiescence bias (e.g., Yea-Saying) or extr eme response style (ERS; Furr & Bacharach, 2008) Acquiescence bias occurs when individu als have a greater tendency to respond positively irrespective of the content. ERS o ccurs when an individual has a tendency to choose an extreme response choice of the scale. Some research has suggested that there may be cultural differences that explain the use of ERS. In other words some culture s may be more likely to have an extreme response style causing some research findings to reflect measurement artifact (Leung & Bond, 1989). Moreover, response bias is common in research that relies on a Likert scale such as this study (Clarke, 2001) In addition, some research has found greater levels of ERS in Blacks when compared to White s (Bachman, O’Malley, & Freedman-Doan, 2010; Clarke, 2000). It is specula ted that ERS is the basis for the differences seen in this study concerning intervention content and struct ure and delivery. Variations in response style may lead to a misinterpretation of race or cultural differences. Therefore no conclusions have been drawn concerning differences between Blacks and Whites on arthritis interventions preferences. However, we did find it informative to observe which items were rated the highest. For example, Blacks seemed to prefer an intervention that would be mailed, and least likely to prefer an intervention th at was limited by gender. Whites seemed to prefer an arthritis interv ention that would be led by someone with arthritis, and least likely to prefer an inte rvention that was specifically given by someone of the same race. Many items were ranke d similarly within each group; therefore it is difficult to determine the meaningfulness of the ranking of preferences without further statistical analyses. Future res earch is needed in this area.

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70 Utilization Patterns With regard to arthritis information, bot h groups rated that they were more likely to look for arthritis information from th eir physician, health care provider, and surprisingly the Arthritis Foundation. The finding concerning the Arthritis Foundation was surprising in that both groups also reporte d that they were not very familiar with the Arthritis Foundation or the resources availa ble through the Arthri tis Foundation. Blacks reported being more likely than Whites to look for arthritis informati on from the internet, friends, healthcare provider, someone with arthritis, television, radio, relatives, books, religious leaders and the Arthri tis Foundation. It is again spec ulated that the differences are a result of Blacks being more likely to have an extreme response style in comparison to Whites. As a result, it appears they ha ve rated everything more favorably including factors that they normally would have less access to in comparison to Whites (e.g., internet; Forkner-Dunn; 2003). It also is im portant to note the que stion used in the questionnaire stated, “would you look for information for your arthritis from the following resources?” It did not ask the participants, “do you look for arthritis information from the following resources?” The manner in which the question was asked may explain the participants’ response. Ev en if one is unfamiliar with the Arthritis Foundation, It seems understandable that someone would say they would seek information on arthritis from the Arthritis Foundation. One of the complaints in previous res earch concerning arthritis interventions was the lack of knowledge about the programs and participation in the programs (Brady et al., 2003). Our findings support the findings of pr evious research yielding similar concerns. Less than 30% of the participants in the White and Black group had heard of the Arthritis

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71 Self-Help Course (also referred to as the AS MP). Blacks were significantly less likely than Whites to have heard of the Arthriti s Foundation Aquatics and Tai-Chi programs. Moreover, less than 20% of Blacks and Whites had participated in three out of the four of the Arthritis Foundation Programs. Interestingly, Blacks were significantly more likely to have participated in People with Arthritis can Exercise and less likely to have participated in Tai-Chi. ASMP Toolkit Evaluation The goal of the final res earch question was to determine whether there were race differences in the acceptability of the ASMP toolkit between Blacks and Whites. Findings from this study showed that on the sections that participants were asked to review, there were only race differences on the acceptability of some of the sections of the ASMP toolkit. The action plan inform ation sheet, exercise CD, problem solving information sheet, and community resources in formation sheet were reviewed similarly by Blacks and Whites. Specific to the action pl ans, the question that asked was the action plan designed with people like me in mind re sulted in the highest means for both Blacks and Whites. In comparison to Whites, Blacks were more likely to report they would use the illustrated exercise guide at home for th eir arthritis, and more likely to tell their friends to use the illustrated exercise guide a nd relaxation CD for thei r arthritis. Blacks seemed to find the healthy eating section a nd the imagery CD more acceptable than Whites. Participants were not only asked to rate the acceptability of sections of the toolkit, but based on what they saw and hear d rate the acceptability of the toolkit in general. Again, conclusions could not be drawn due to ERS. To date very little is known about the acceptability and effectiveness of the ASMP toolkit in Blacks. Previous

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72 research has suggested that Blacks may find the toolkit unappealing (Goeppinger et al., 2009). Our findings suggest that Blacks may find existing com ponents acceptable. Further research is warranted to addre ss response bias and support the study findings.

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73 Chapter Five: Conclusions In the over 20 years that ASMP has been in existence very minimal research has focused on the needs, acceptability or effectiv eness of the program in Blacks. Over the past 10 years the CDC has funded state arthri tis programs. The arthritis funded program that has received the most recognition has b een the ASMP, however, li ttle has been done to determine the acceptability of the ASMP among Blacks. In recognition of this gap in the literature, we sought to examine the need s of Blacks with arthritis specific to the ASMP. In addition, we sought to examine the acceptability of existing tools used in the ASMP toolkit arthritis intervention. Responses to the surveys used in this study clearly indicate that differences do exist in the perceptions of both the community-based ASMP and the ASMP toolkit, and utilization of arthritis resources (Table 5.1 and Table 5.2). More powerful were the differences found be tween Blacks and Wh ites in the potential barriers to participation in th e programs (Table 5.1). It is necessary that we take the information used in this study to structure interventions that woul d adequately address potential barriers and begin to move forwar d by testing the acceptability, feasibility, and effectiveness of arthritis interventions. It is our hope that the current study will contribute to the arthritis intervention literature by beginning to understand the needs and preferences of Blacks w ith arthritis and designing or adap ting interventions that will meet those needs.

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74 Implications and Recommendations While the data associated with our stu dy did not determine causality for arthritis heath disparities nor did it definitively dete rmine how to design culturally sensitive arthritis interventions, valuable informati on has been gained about the differences between Blacks and Whites and their preferen ces for an arthritis intervention (Table 5.1 and Table 5.2). This valuable information can inform the design of an intervention which should later be tested for feasibility, acceptability, accessibility, and ultimately effectiveness. Due to the e xploratory nature of this study, we are careful not to draw definitive conclusions. However, valuable recommendations can be made based on our findings. This study was designed to build a ba sis for in-depth examinations of the needs of Blacks with OA specific to arthritis interven tions. We believe this study to be an important piece of the puzzle in the area of arthritis health disparities and in designing culturally sensitive effective arthritis interventions. For healthcare professionals, servi ce providers, and task forces that are specifically interested in the impact of arthritis and the acceptability of arthritis interventions in minority samples, the fi ndings presented in this study may offer important insights. Specifi cally, it is important to unders tand how barriers may impact the utilization a health care program. One barrier found in our study was that Blacks were more likely to fear being the only person of th eir race to participate in the programs. The fear expressed by Blacks is consistent with re search indicating that minorities are more

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75 likely than Whites to refuse needed health services (IOM, 2003) and that very few studied arthritis self-management interventions have included Blacks. However, this is a barrier that could be addressed by ensuring th at those trained to deliver the ASMP are from diverse backgrounds, and that the program s are offered in areas that would attract both White and minority participants. Cost was a barrier that seemed to rise to the top for Blacks not only in comparison to Whites but also in comparison to other ba rriers. When programs are being developed access and affordability of the pr ograms should be considered. This is particularly true for older minorities who have a greater li kelihood to be living on a fixed income. Research has been conducted to show the cost benefits from the ASMP; however; the cost benefits are retrospective. In other word s the ASMP cost benefits currently come in the form of a decrease in doctor visits, and a decrease in emergency room visits after one has participated in the program. It is suggest ed that in addition to retrospective cost benefits, prospective cost benefits should be considered (e.g., subsidizing the cost to participate in the ASMP) as it would decr ease a major barrier to participation. Lack of trust and the recommendation of friends and family were also barriers that rose to the forefront of our findings when comp aring Whites and Blacks. Considering the fact that communities and fam ily members often serve as gatekeepers to participation in health related research or programs (Rooks & Whitfield, 2004), it is possible that such a barrier c ould be addressed with an adapted intervention using the community-based participatory research methodology. Trusted community members may be able to build a liaison between the targ et population and the h ealthcare providers. The

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76 importance of community liaisons were exemp lified in our recruitment efforts as some participants would not even discuss the st udy with us until the liaison had assured them that it was a reputable study and that no harm wo uld be brought to them by participating. Table 5.1 Race Differences between Black s and Whites on Intervention Preferences Potential Barriers Preference of Content Preference of Structure and Delivery Preferences for Arthritis Resources -Cost -All factors except a program that teaches you how to improve physical functioning, and about nontraditional treatment options All factors except a program led by someone with arthritis themselves, a program that includes people of your same age group, and a program given in your neighborhood -Internet -Lack of trust in the healthcare system -Friend -Fear of being the only person of your race -Healthcare Provider -Only if family and friends agree that participating in the program is a good idea -Someone with arthritis -Only if recommended by my doctor -TV -Radio -Relatives -Books -Religious Leader -Arthritis Foundation Note Black participants report higher scores on all listed differences.

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77 Table 5.2 Race Differences between Blacks and Whites on Acceptability of ASMP Toolkit Illustrated Exercise Guide Relaxation CD Healthy Eating Imagery CD General -Would tell my friends to use the guide -Would tell my friends to use the CD -Seems healthy eating section was designed with people like me in mind. -Found the CD helpful -ASMP toolkit materials are visually appealing -Likely to use guide at home for my arthritis -Can see how changing my eating would help my arthritis -Would tell my friends to use the arthritis for their arthritis -Problems and concerns addressed in the ASMP toolkit are problems I have with my arthritis -Likely to change my eating based on material learned -Feel confident that I would use the CD at home on my own -Likely to listen to and exercise with the entire 20min exercise CD -CD is meant for people like me -Would attend traditional ASMP ASMP material is offensive -The ASMP audio is offensive -Pictures or graphics are offensive Note Black participants were more likely than Whites to find the listed factors more acceptable

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78 Overall, specific individual parts of the toolkit seemed to be similarly acceptable by both Whites and Blacks. However, ther e were some significant differences in acceptability of the materials. Blacks rated the healthy eating section more acceptable than Whites. In addition, Blacks were also more likely to report that they would tell their friends to use the exercise guide, and more likely to use the guide at home for their arthritis. It seems as if the illustrated guide attempted to include dr awings of individuals from various ethnic background including Blacks. As cited in Weintraub, Maliski, Fink, Choe, & Litwin (2004), previous research ha s shown that culturally sensitive health education materials (e.g., materials including pictures of Blacks), is more likely to translate into positive behavior changes and outcomes. Blacks were more likely to report that th ey would tell their friends to use the relaxation CD for their arthritis, and they found the guided imagery more acceptable over all in comparison to Whites. Findings specific to the relaxation and the imagery CD, may be closely related to other re search that has looked at th e use of mind-body interventions in Blacks (e.g., guided imagery, prayer, positiv e imagery, relaxation; Katz & Lee, 2007). Blacks may have found this CD to be fam iliar to ways they already manage their condition. While it has been found that pray er is the most common type of mind-body intervention used by Blacks (Katz & Lee, 2007) the use of meditati on in general may be favored Based on our findings and previous res earch, evidence does not support a need for a tailored ASMP, however, there are some prac tical issues that c ould be addressed to make the program more culturally sensitive for Blacks. First, address social and

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79 environmental factors that serve as potential barriers to par ticipation (e.g., cost, lack of trust), develop materials that are suitable and appealing to the target audience, and collaborate with community partners. Change s to ensure the cultural sensitivity of the intervention could benefit minorities and potentially reduce the racial/ethnic health disparities associated with this condition. Culturally se nsitive interventions must promote accessibility and be designed in an acceptable manner taking in consideration the values, preferences, and n eeds of the target population. While no definitive conclusions can be drawn due to suspected ERS, we do speculate that some of findi ngs specific to intervention preferences warrant additional research. In the current study, we found that Blacks were more likely than Whites to prefer intervention content in cluding learning about making m eals that they already eat (e.g., specific to your culture) in a healthier wa y, internet sources that are focused on arthritis care, various types of arthritis, speci fically the type of arthritis of which they have been diagnosed, problem solving skills in general for health related problems, talking to your family and friends about ar thritis, discrimination in healthcare, how to choose a doctor, and getting the most out of th e health care system. It is plausible to think that adding such compone nts to the intervention may yi eld better self-management and self-efficacy for Blacks. For example, havi ng the skills to manage discrimination in healthcare may provide people w ith the confidence to interact more with their healthcare providers and to get better understanding out of their doctor visits resulting in better treatment outcomes. Minor changes such as adding a component on managing

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80 discrimination may impact the effectivene ss of the intervention within the target population. Again, it is critical that we do not overs tate our findings and acknowledge that the extreme response style may be considered a major reason for the differences in content preferences found in this study. However, the findings of our research are in line with findings from the research done by Goeppinger et al. (2007) in that there is a need to strengthen the content of the ASMP by incl uding information on cultural dimensions of eating, how to communicate with health care pr oviders from a cross-cu ltural perspective, information on faith and spirituality, and th e importance of mutual help and social support. Future research is warranted in this area. Analyses revealed that Blacks and White s also differ on their preferences of the structure and delivery of an arthritis self-management intervention. Some of the preferences already exist in ei ther the ASMP or the ASMP toolkit. While the results seem to be due to Blacks being more likely than Whites to choose an extreme response style, differences may be a result of the lack of knowledge of existing programs that include such components. In other words, it may not be a case of Blacks preferring specific structural and delivery features over Whites; it may be a cas e of them wanting a program in general. Systematic adaptations should be made to the toolkit, ASMP, and other arthritis interventions so that culture is considered. It is likely that adaptations have begun to take place (Goeppinger et al., 2007; Goeppinger et al., 2009) but are not systematically documented in the arthritis inte rvention literature. It is s uggested that adaptations (e.g.,

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81 cost, include community liaisons, offer in minority neighborhoods) be documented and tested to determine whether such changes yiel d benefits in acceptab ility and in successful recruitment. It is important to ensure that th e programs are culturally sensitive not only to increase the use of the programs, but increa se the positive clinical outcomes within a disadvantaged group. We must continue to ma ke strides toward being more culturally sensitive and realize there is no one-size-fit-all intervention. It is vital that we move closer to providing interventions that not only will be acceptable but effective to everyone by making an attempt to consider the culture of many. Study Limitations The present study has a number of limita tions that should be noted. First, individuals in this study were asked to self-report a doctor diagnosed case of arthritis. Frequently, as experienced in our recruitment efforts individuals do not know the type of arthritis they have. Individuals will report an ything from “the regul ar kind” to “not the crippling kind.” While self-re ported data is continually used by the BRFSS, it has been found to be less accurate when asking individuals to specify the type of arthritis. In fact, the CDC strongly discourages collecting se lf-reported data on ar thritis type (CDC, 2009c). However, varying types of arthriti s may result in various experiences which could potentially serve as a confounding variab le to study findings. Healthcare providers should remain vigilant about e ducating individuals on not only the fact that they have arthritis but the type Moreover, while self report has been used as a method to determine national prevalence rates for arthritis, the use of both clinical criteria and radiological scales

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82 would be the ideal method to confirming an OA diagnosis. Using c linical cr iteria and radiological scales would be considered a gol d standard and would strengthen the validity of the research. Another limitation was that of the response style of Black versus White participants. A response bias of this type can obscure the between group differences. Future research should create a questionnaire or a measure that will minimize the effect of response bias. Specifically, one solution is to design and us e a balanced scale. A scale of this type will have questions worded both positively and negatively to minimize the effect of ERS. It is important to note that the findings that we repor t concerning the evaluation of the toolkit were not obtained under an ideal dissemination of the intervention. Participants were only presen ted with various components of the toolkit. An ideal situation would include time for participants to review all materials at home (e.g., The Arthritis Self Help Book, information sheets, all exercise CDs, the complete relaxation and imagery CD) and then to respond to the acceptability of the materials. Unfortunately, time and cost prevented the research from being conducted in this manner. The current study is based on the ASMP. Wh ile there are some concerns about the strength of the effectiveness of the interv ention, the ASMP is supported by the CDC, and widely publicized on their website as an effective intervention program (CDC, 2010b). However, other arthritis inte rventions have been found to have a greater effect size specific to outcome measures in comparison to the ASMP (Dixon et al., 2007). While it would have been ideal to concentrate on many of the various arthritis interventions, many

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83 have restrictions that keep them from be ing easily administered in the community. Future research should not only focus on increa sing the cultural sens itivity of the ASMP but also strengthen the efficacy so that it is comparable to other arthritis interventions and still readily available to the community. In addition, a major limitation of the st udy was that the ASMP community-based course is not offered in the city in wh ich the research was conducted. There are no trainers available. This is a limitation in that upon completion of the study our recruited participants wanted to know more about the study and how to participate in the full length ASMP. It was unfortunate to have to respond that the program is currently not being offered. This is not only a limitation in our immediate study, but in general when considering the ASMP. A review article reported that in spite of the effectiveness of the intervention less that 1% of th e population actually participat ed in the intervention (Brady et al., 2003). While the recruitment efforts of minor ities in our study based on the ASMP was successful, it is important to note that the sm all sample size particularly in the evaluation of the materials may have affected our fi ndings. The small sample size may have resulted in a lack of sufficient statistical power needed to detect differences between Black and White participants, particularly t hose who participated in the evaluation of materials. A statistical power analysis should be conducted in the future to determine the sample size needed for a study of this type. Current findings need to be confirmed with replication and larger samples. The use of a convenience sample limits the generalizability of this study. However, usi ng a convenience sample for an exploratory

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84 design allows for basic information that serv es as a basis for conducting future research with a representative sample. Our study was al so predominately female. Future research should include similar number of males and not only look at race differences but also race x gender differences. In addition, there were significant de mographic differences between Black participants and White particip ants. The analyses included in this study did not adjust for such differences. Additional analyses (e.g., ANCOVA), could be conducted to account for intergroup variation that is associated with demographic factors such as age, education, and health status. Analyses of this type will determine if adjusting for demographic variables would alter the findings and better explain the group differences. Lastly, while this study is examining cultural sensitivity, there is no measure of culture. In the future it will be important wh en considering cultural sensitivity to include measures that would examine how culture influences the participants’ preferences, barriers, and utilization. Such a scale would add to the argument of the importance of making practical adaptations to existing intervention to ensure cultural sensitivity. Future Directions Taken together this dissertation stud y underscores the importance of cultural sensitivity in arthritis interventions. A lthough the need to address arthritis health disparities between Blacks and Whites is wide ly recognized, very litt le has been done in the way of addressing the dispar ities with existing arthritis interventions. This exploratory study has focused on an initial effect to a ddress the needs of Bl acks with arthritis. Arthritis is a an important condition and a growin g public health issue, it is important that

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85 we minimize the impact in cost, disabilit y, and prevalence, by developing effective interventions that can be su ccessfully disseminated to the community. Future research should utilize both clinical crite ria, radiological scales, and se lf-report to ensure diagnosis of OA. This research was conducted to learn about the differences of intervention preferences between Blacks and Wh ites with arthritis. Future work is needed to take this further by determining if small changes lik e the ones recommended in this study will enhance recruitment to, and the effectiveness of, the ASMP in Blacks. Future research should include Blacks in culturally sensitive ar thritis interven tions asking participants to rate their experiences, determine if attendi ng the course was bene ficial, assess whether there was an improvement of one’s understa nding about arthritis and ways to treat arthritis, and determine if information was easy to understand. In addition, future research should determine if the intervention or program leader was helpful, topics discussed were important, the timing and location were conveni ent, and lastly would they recommend the program to others with arthritis. The lack of awareness of the ASMP and th e lack of availability of local trainers speaks volumes to policy concerns at a vari ety of levels. As federal dollars are continuing to be allocated toward the developm ent of state arthritis programs such as the ASMP, a mechanism should be put into place to ensure that the programs are not only available on paper but as an actual service. Oftentimes the programs are listed on the various websites as helpful existing programs; however, there is no system in place to guarantee that the ASMP is being offered. The lack of awareness begs the need for an

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86 emphasis on translation. A stronger collaborati on is needed between the scientists who determine the effectiveness of the interventions and the governmental agencies that financially support the programs to ensure th e dissemination. Programs are not beneficial to the healthcare of our society if they are not utilized. This is true for culturally sensitive interventions. A culturally sensitive in tervention on the shelf does not address the continued health disparities be tween Blacks and Whites with OA.

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98 Williams, D. R., Yu, Y., Jackson, J., & Anders on, N. B. (1997). Racial Differences in physical and mental health: Socio-econo mic status, stress, and discrimination. Journal of Health Psychology 2 335-351. Yelin, E., Such, C., Chriswell, L., & Epst ein, W. (1998). Outcomes for persons with rheumatoid arthritis with a rheumatologist versus a non-rheumatologist as the main physician for this condition. Medical Care, 36 513-522.

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99 Appendices

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100 Appendix A: Needs Assessment

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101 Thank you for agreeing to participate by f illing out this questionnaire. You will be asked questions about your arthritis, arth ritis care, and health in general. Certain questions may seem irrelevant or not important; however, all questions are included to ensure we obtain the most in formation possible. Questions are asked in a manner that will improve accuracy. We apologize in advance if questions seem repetitive, appear to not make sense, or seem obvious. All information is collected in order to gain new informat ion in the area of arthritis and understand the needs of those with arth ritis. If there are no questions, please begin. Section A Please Start by Telling Me a Little About Yourself: Could you please tell me your date of birth? __ __ / __ __ / __ __ __ __ (M/D/Y) 1. Please circle the highest year of school completed? Primary School High School College/University 1—2—3—4—5—6—7—8—9—10—11—12—13—14—15—16—17+ 2. What is your current marital status? (Please check the box that applies to you) Married Living with partner Widowed Divorced Separated Never Married

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102 Section B The next questions will ask you about the status of your health in general. Please be open and honest. Answer each question to the best of your ability. Please check the box that applies to you. 1. In general, would you say your health is Excellent Very Good Good Fair Poor 2. Are you limited in any way in any activities because of physical, mental, or emotional problems? Yes No Section C The next section will include questions about arthritis in general. Please be open and honest in your responding. 1. What is the main kind of arthritis that you have? Please answer Yes or No for each kind of arthritis. (Please Circle 1 for Yes and 2 for No) YES NO Rheumatoid Arthritis 1 2 Osteoarthritis/Degenerative Arthritis 1 2 Other (Please Specify) __________________ ___________ 1 2 2. How many years have you had arthritis related symptoms? (write in the number of years in the space below) _________________ year(s) _________________ (months) 3. How many years ago were you diagnos ed with Osteoarthritis by a doctor? (write in the number of years in the space below)

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103 _________________ year(s) _________________ (months) For the following questions, check the box that applies to you. 4. Please think about the past 30 days, k eeping in mind all of your joint pain or aching and whether or not you have taken medication. DURING THE PAST 30 DAYS how bad was your joint pain ON AVERAGE ? Please answer on a scale of 0 to 10 where 0 is no pain or aching and 10 is pain or aching as bad as it can be. No Pain Extreme Pain 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 5. Do you consider arthritis a normal part of getting older? Not at All a Part of Normal Aging Normal Aging 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 6. Do you think anything can be done about arthritis once you have it? Don’t believe at All Definitely Believe 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 7. Do you think that once you get arth ritis it can only get worse not better? Don’t believe at All Definitely Believe 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* ***************************

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104 Section D Arthritis self-help programs are program s that are geared toward giving people information and skills to improve the negative effects of arthritis. Sometimes people would like to partic ipate in healthcare programs such as an arthritis self-help program but are not able to do so for various reasons. We are interested in learning more a bout things that may either interest you, or keep you from participating in arthritis health programs. In some of these questions we will ask you to imagine services that might be available. Please give your best judgm ent about how you think you would view such programs. 1. Do you believe there is a need for an arthritis self-help program for people who have been diagnosed with arthritis? Yes No 2. Please explain why or why not. ________________________ _____________________ ______________ ________________________ _____________________ ______________ ________________________ _____________________ ______________ ________________________ _____________________ ______________

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105 Please read the statement described belo w as if it is happening to you. Imagine that you have been diagnos ed with arthritis and have been asked to participate in an Arthritis Group Education Course The course will be offered at the local community center and will be taught by a person who has arthritis and has been trained to offer this course. The course will cost you $30. You will be asked to come to the center once a week from 10:00am – 12:00 noon for six weeks. In addition, to the weekly meetings you will receive The Arthritis Helpbook (a textbook for the course), Arthritis Foundation brochures, and a year’s subscription to the Arthritis Today magazine. During the six weeks you will deve lop an exercise program just for you, discuss arthritis medications, learn how to manage your pain, learn how to solve arthritis-related problems, and learn how to communicate with your health care providers. You will be responsible for getting yourself to and from t he community center. How much do you believe each of the following statements? Please check the box for the response th at best applies to you. 1. I believe that t he program will be helpful Don’t believe at All Definitely Believe 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 2. I believe it would be hard for me to find the drive or determination to work on the program Don’t believe at All Definitely Believe 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 3. I believe my lack of trust in the he alth care system would prevent me from participating Don’t believe at All Definitely Believe 0 1 2 3 4 5 6 7 8 9 10

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106 4. I believe it would be difficult to fi nd time to participate in the arthritis program Don’t believe at All Definitely Believe 0 1 2 3 4 5 6 7 8 9 10 5. I believe my family responsibilities (caring for spouse, grandchildren, and other relatives) will keep me from participating in the program Don’t believe at All Definitely Believe 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 6. I believe it would be difficult to afford the cost of the program Don’t believe at All Definitely Believe 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 7. I believe my other health concerns are more important than participating in an arthritis health care program Don’t believe at All Definitely Believe 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 8. I believe that I have a fear that I would be the only person of my race in the program Don’t believe at All Definitely Believe 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 9. I believe that I would only participa te if my family and friends thought it was a good idea. Don’t believe at All Definitely Believe 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 10. I believe I am physically unable to participate Don’t believe at All Definitely Believe 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 11. I believe that I would only participa te if it was recommended by my doctor

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107 Don’t believe at All Definitely Believe 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 12. I believe it would be difficult to find transportation to the local community center Don’t believe at All Definitely Believe 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 13. I believe that I would avoi d a neighborhood program because my neighborhood is not safe. Don’t believe at All Definitely Believe 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** Now we want you to answer the sam e questions about another type of program. Please read the statement d escribed below as if it is happening to you. You have been diagnosed with arthri tis and have been informed that you can participate in an At Home Arthritis Management Program The information will be mailed to you. The cost of the information is $30. You will be able to go through the information at your own pace. The mailed package will include The Arthritis Helpbook (a textbook for the course), information sheets describing arthritis problems and solutions, a self-test, and a re laxation and exercise CD. The selftest will help you determine the areas that you will need to focus on to develop a personalized arthritis health care plan. You will be responsible for scoring the test yourself. The information sheets and textbook will include info rmation on pain, physical limitations, fatigue, health concerns, exercise, medica tions, healthy eating, finding community resources, dealing with your emotions, and how to work with your doctor and the health care system. How much do you believe each of the following statements? Please check the box for the response th at best applies to you. 1. I believe that t he program will be helpful Don’t believe at All Definitely Believe 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* ***************************

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108 2. I believe it would be hard for me to find the drive or determination to work on the program Don’t believe at All Definitely Believe 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 3. I believe my lack of trust in the he alth care system would prevent me from participating Don’t believe at All Definitely Believe 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 4. I believe it would be difficult to fi nd time to participate in the arthritis program Don’t believe at All Definitely Believe 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 5. I believe my family responsibilitie s (caring for spouse, grandchildren, and other relatives) will keep me from participating in the program Don’t believe at All Definitely Believe 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 6. I believe it would be difficult to afford the cost of the program Don’t believe at All Definitely Believe 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 7. I believe my other health concerns are more important than participating in an arthritis health care program Don’t believe at All Definitely Believe 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 8. I believe that I have a fear that I would be the only person of my race in the program Don’t believe at All Definitely Believe 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 9. I believe that I would only participa te if my family and friends thought it was a good idea.

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109 Don’t believe at All Definitely Believe 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 10. I believe I am physically unable to participate Don’t believe at All Definitely Believe 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 11. I believe that I would only participate if it was recommended by my doctor Don’t believe at All Definitely Believe 0 1 2 3 4 5 6 7 8 9 10 In the past, very little research has asked individuals like you what they like or dislike about arthritis self-help pr ograms, or what would encourage you to participate or not participate in such programs. We are interested in learning about what you w ould like to see in an arthritis program designed to help with your arthritis. If you were to participate in an ar thritis self-help program which of the following components would you find he lpful if included? Please check the box that applies to you. Do you think it would be helpful for an arthritis self-help program to: 1. Teach you about available arthritis healthcare options or resources other than a primary care physician Not Helpful at All Extremely Helpful 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 2. Help you set personal treatment goals and a plan of action for meeting those goals Not Helpful at All Extremely Helpful 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 3. Teach you about internet sources focused on arthritis care Not Helpful at All Extremely Helpful 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* ***************************

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110 4. Teach you about various types of arthritis Not Helpful at All Extremely Helpful 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 5. Teach you specifically about your type of arthritis Not Helpful at All Extremely Helpful 0 1 2 3 4 5 6 7 8 9 10 6. Teach you about nutrition and healthy eating Not Helpful at All Extremely Helpful 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** Do you think it would be helpful for an arthritis self-help program to: 7. Teach you how to make meals that you already eat but in a healthier way Not Helpful at All Extremely Helpful 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 8. Give you information about the us e of medications and how they work Not Helpful at All Extremely Helpful 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 9. Tell you about arthritis m edications that are available Not Helpful at All Extremely Helpful 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 10. Teach you problem solving skills for arthritis-related problems Not Helpful at All Extremely Helpful 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 11. Teach you problem solving skills in general for health-related problems Not Helpful at All Extremely Helpful 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* ***************************

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111 12. Teach you how to decrease negative emotions (anger, fear, frustration, depression, isolation) Not Helpful at All Extremely Helpful 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 13. Teach you how to improve physical functioning Not Helpful at All Extremely Helpful 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 14. Teach you skills to help reduce your pain Not Helpful at All Extremely Helpful 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** Do you think it would be helpful for an arthritis self-help program to: 15. Teach you how to talk to your family and friends about your arthritis Not Helpful at All Extremely Helpful 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 16. Teach you how to talk to health professionals about your arthritis Not Helpful at All Extremely Helpful 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 17. Teach you helpful exercises for your condition Not Helpful at All Extremely Helpful 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 18. Talk to you about non-traditional treatment decisions (e.g., liniment, glucosamine) Not Helpful at All Extremely Helpful 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 19. Talk to you about how to handle discrimination in health care Not Helpful at All Extremely Helpful

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112 0 1 2 3 4 5 6 7 8 9 10 20. Teach you how to get the most out of the healthcare system Not Helpful at All Extremely Helpful 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 21. Talk about how to make treatment decisions Not Helpful at All Extremely Helpful 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 22. Teach you how to choose a doctor Not Helpful at All Extremely Helpful 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** The next set of questions asked you ab out what you would like included in an arthritis self-help program. Next, we would like to know, in your opinion, what is the best way to offer an arth ritis self-help program such as the best format, the best time, and the best place. Please check the box that applies to you. How much would you like the ar thritis self-help program to: 1. Be mailed to you (e.g., brochures, videos) Not at All Extremely 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 2. Offer a class to a group that teaches how to manage arthritis Not at All Extremely 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 3. Include material or address issues related to your spiritual beliefs Not at All Extremely 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 4. Allow you to bring your fr iend for support and to learn with you

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113 Not at All Extremely 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 5. Allow you to bring a family me mber for support and to learn with you Not at All Extremely 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 6. Be given using a Cassette Tape or CD to listen to Not at All Extremely 0 1 2 3 4 5 6 7 8 9 10 7. Be given using a Video-Tape or DVD to watch Not at All Extremely 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** How much would you like the ar thritis self-help program to: 8. Be given by someone of the same race Not at All Extremely 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 9. Be given by someone of the same gender Not at All Extremely 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 10. Include discussions with other people who have arthritis Not at All Extremely 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 11. Be given in an instructional or lecture format Not at All Extremely 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 12. Be given at a local church

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114 Not at All Extremely 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 13. Be given at a community or senior center Not at All Extremely 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 14. Be given at the local Arthritis Foundation Not at All Extremely 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 15. Be given at a local health clinic Not at All Extremely 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** How much would you like the ar thritis self-help program to: 16. Be limited by gender (women or men only) Not at All Extremely 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 17. Provide child care services Not at All Extremely 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 18. Be given in your neighborhood Not at All Extremely 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 19. Include people of your race Not at All Extremely 0 1 2 3 4 5 6 7 8 9 10

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115 ********************************** ******************************* *************************** 20. Include people in your same age group Not at All Extremely 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 21. Be led by someone who has arthritis themselves Not at All Extremely 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 22. Be limited by condition (others with the same type of arthritis as you) Not at All Extremely 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** Section E The following questions will ask you about locating information on arthritis. Below you will find a list of places or people one may go to find information about arthritis, please tell us the likelihood of you going to the following places or people to get inform ation about your arthritis. Please check the box that best applies to you. Would you look for arthritis information: 1. On the Internet Not Likely at All Extremely Likely 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 2. From a Friend Not Likely at All Extremely Likely 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* ***************************

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116 3. From a Healthcare Provider Not Likely at All Extremely Likely 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 4. From a Physician Not Likely at All Extremely Likely 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 5. From someone with arthritis Not Likely at All Extremely Likely 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 6. On the TV Not Likely at All Extremely Likely 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 7. On the Radio Not Likely at All Extremely Likely 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 8. From Relatives Not Likely at All Extremely Likely 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 9. In Books Not Likely at All Extremely Likely 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 10. From a Religious Leader Not Likely at All Extremely Likely 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 11. From the Arthritis Foundation

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117 Not Likely at All Extremely Likely 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 12. Other (Please Specify) ________________ _________ Not Likely at All Extremely Likely 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** Section F Next, I would like to ask you some mo re questions about arthritis. The following questions will ask you about arthritis programs and services. There are no right or wrong answers. Please be open and honest in your response. Please check the box that applies to you. The next set of questions asks yo u about the Arthritis Foundation. 1. How familiar are you with the Arthritis Foundation? Not at All Extremely 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 2. How often have you used the Ar thritis Foundation resources?

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118 Not at All Quite a Bit 0 1 2 3 4 5 6 7 8 9 10 i. If you have used any Arthritis Foundation resources, which resources have you used_______________________? ********************************** ******************************* *************************** 3. Have you ever heard of any of the following programs? (Please Check Yes or No) YES NO Arthritis Self Help Course People with Arthritis Can Exercise Arthritis Foundation Aquatic Program Tai-Chi 4. Have you ever participated in the Arthritis Self Help Course? Yes No A. If No Why?_________________ _______________________ B. If Yes How useful did you find the program? Not Useful at All Very Useful 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 5. Have you ever participated in the People with Arthritis Can Exercise? Yes No A. If No Why?_________________ ________________________ B. If Yes How useful did you find the program?

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119 Not Useful at All Very Useful 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 6. Have you ever participated in the Arthritis Foundation Aquatic Program? Yes No A. If No Why?_________________ ________________________ B. If Yes How useful did you find the program? Not Useful at All Very Useful 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 7. Have you ever participated in a Tai Chi class ? Yes No A. (If No, Why_______________ __________________________) B. If Yes How useful did you find the program? Not Useful at All Very Useful 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* ***************************

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120 Section G The next set of questions asks you about arthritis treatments. How often would you say you u se the following home remedies to treat your arthritis? Please circle the answ er that best applies to you. Not at All Occasionally Some of the Time Most of the Time Copper Bracelets 1 2 3 4 Heat compress applied to the area 1 2 3 4 Cold compress applied to the area 1 2 3 4 Ginger 1 2 3 4 WD-40 1 2 3 4 Icy Hot, Ben Gay or any other liniment, herbal creams, or rubbing lotions 1 2 3 4 Bee Venom 1 2 3 4 Advil, Tylenol, Aspirin or something similar 1 2 3 4 Massage 1 2 3 4 Acupuncture 1 2 3 4 Magnets 1 2 3 4 Vitamins 1 2 3 4 Glucosamine or Chondroitin 1 2 3 4 Prayer 1 2 3 4 Green Rubbing Alcohol 1 2 3 4 Sliced Potatoes 1 2 3 4 Kerosene 1 2 3 4 Other (Please Specify) _________________ _________________ _________________ 1 2 3 4

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121 Section H 1. Which do you feel best describes your race/ethnicity? Please check the one that best applies to you. White (Not Hispanic) Black/African American (Not Hispanic) Hispanic Asian Native American Other If Other please specify. __________________ __________________ _____________ 3. Were you born in the U.S.? Yes No 4. What is your gender? Male Female 5. Please check the box that best descr ibes your approximate family annual gross income (before taxes and insu rance). This should include the following sources; wages, pensions, dividends, and any additional household income. (Please check the box that best applies to you) Less than $5,000 $5,000 $9,999 $10,000 $14,999 $15,000 $19,999 $20,000 $29,999 $30,000 $39,999 $40,000 $49,999 $50,000 $59,999 $60,000 $79,999 $80,000 $99,999 $100,000 and over Thank you for completing this questionnaire

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122 Appendix B: ASMP Toolkit Evaluation Arthritis Self-Help Program Evaluation University of South Florida School of Aging Studies We are conducting a study evaluating th e Arthritis Self-Help Program by asking for your opinion. We will ask your input about various parts of an existing arthritis self-help program. This information will be useful to health care providers as well as others diagnosed with arthritis. Your participation in the interview will advance current knowledge in the area of these programs. This questionnaire is completely volunt ary and confidential. If you should come to any question that you do not want to answer please feel free to skip that particular question and move on to the next one, although it would be very helpful to our research if you can complete the entire questionnaire. You may ask questions at any time. Thanks so much for your assistance. Subnum: __ __ __ __ Date: ____/____/____ Location: ___ ___

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123 Thank you for agreeing to participate. In order to provide the best arthritis care possible it is importa nt that we get your opinion on existing arthritis health care programs. You will be asked to read and listen to portions of an existing arthritis self-help program. You will then be asked to respond openly and honestly to a list of quest ions. Certain questions may seem irrelevant or not important; however, al l questions are included to ensure we obtain the most information possi ble. We apologize in advance if questions seem repetitive, appear to not make sense, or seem obvious. All information is collected in order to gain new information in the area of arthritis self-help programs and unde rstand the needs of those with arthritis. If there are no questions, please begin. Please Start by Telling Me a Little About Yourself: 1. Could you please tell me your da te of birth? _/_ _/_ _ (M/D/Y) 2. Please circle the highest year of school completed? Primary School High Schoo l College/University 1—2—3—4—5—6—7—8—9—10—11—12—13—14—15—16—17 3. ********************************** ******************************* ******************* 4. What is your current marital status Married Living with partner Widowed Divorced Separated Never Married

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124 The Arthritis Self-Management program is a community–based program geared toward giving people information and skills to improve the negative effects of arthritis such as pain. The Arthri tis Self-Management Program has been shown to be effective (e.g., decreasing pain and disability). The Arthritis SelfManagement Program includes the basic in formation for you to put together a personal plan to manage your arthriti s. Skills taught include pain management, relaxation, exercise, goal-setting, and action planning. While the classic Arthritis Self-Management program is a two-hour, one day a week, in class program, t here is also a mailed version of the program. The mailed version is referred to as the Ar thritis Self-Management Program Toolkit, and can be purchased for approximat ely $60 and used at home on your own time. We will show you various pieces of the Arthritis Self-Management Program Toolkit. You will be asked about your opi nion on each piece. The program was not designed by myself or any of the researchers in cluded on this project. Please be open and honest in your responses. All comments and responses, both negative and positive are welcome. Your opinions will aid in strengthening existing arthritis self-help programs. The next session teaches you about act ion planning as a tool for selfmanagement. Please Read the Next Page and Answer the Questions that Follow.

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126 Based on what I read about the action plan: 1. I am likely to create an action plan? Not at All Likely Extremely Likely 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 2. I am likely to follow an action plan? Not at All Likely Extremely Likely 0 1 2 3 4 5 6 7 8 9 10

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127 3. I can see how an action plan would help my arthritis? Not at All Extremely 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* ************************* 4. It seems that the action plan was designed with people like me in mind? Not at All Extremely 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** Exercising in the correct way will m ake it easier for you to manage and live with your condition. Now, take the time to listen to the exercise CD. (4 minutes of the CD will be played) Please Answer the Following Questions. 1. After listening to the CD, I feel c onfident that I can do those exercises even with arthritis? Not at All Confident Extr emely Confident 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 2. It is likely that the exercise CD is meant for people like me? Not at All Likely Extremely Likely 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 3. I feel that someone from my cultur al or racial group can relate to the speaker on the exercise CD? Not at All True Extremely True 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 4. I liked listening to the CD? Not at All True Extremely True 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* ********************

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128 5. I found the CD to be very helpful? Not at All Extremely 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 6. I feel confident that I would us e the exercise CD at home on my own? Not at All Extremely 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 7. I would tell my friends to use the CD for their arthritis? Not at All Definitely 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** The next session teaches you problem so lving skills to overcome various everyday problems. Please Re ad the Next Page and Answer the Questions that Follow.

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130 Based on what I read about problem solving: 1. I found the problem-solving ap proaches to be very helpful? Not at All Helpful Extremel y Helpful 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* ************************** 2. It is likely that I would use the problem solving skills to reduce my arthritis problems? Not at All Likely Extremely Likely 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* ******************** 3. It is likely that I would use the problem solving skills to reduce the problems I have in my life in general? Not at All Likely Extremely Likely 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* ************************** 4. I can see how learning problem solving skills would help my arthritis? Not at All Extremely 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 5. It seems the problem solving steps were designed with people like me in mind? Not at All Definitely 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* ***************************

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131 Below you will find parts of the illu strated guide to go along with the exercise CD. Please take the time to view the material.

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135 Based on the exercise material I viewed: 1. I feel the exercise pictures were helpful? Not at All Helpful Extremely Helpful 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 2. I am likely to use the illustrated guide at home to exercise for my arthritis? Not at All Likely Extremely Likely 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* ************************** 3. I would tell my friends to use the illustrated exercise guide? Not at All Definitely 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 4. I feel that someone from my cultural or racial group can relate to the exercise pictures? Not at All Definitely 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 5. It seems likely that the exercises included were meant for people like me? Not at All Likely Extremely Likely 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** The next session teaches you about how to find resources that will help you accomplish various goals and tasks in your life. Please Read the Next Page and Answer the Qu estions that Follow.

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137 Based on what I read about community resources: 1. I feel confident that I can find community resources to help with my arthritis? Not at All Confident Ex tremely Confident 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* ******************** 2. I feel confident that I can find co mmunity resources to help me in general? Not at All Confident Extremely Confident 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* ******************** 3. I am likely to use detective tools to find the answers to questions I may have about arthritis? Not at All Likely Extremely Likely 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* ******************** 4. It seems the detective tools lis ted were meant for people like me? Not at All True Extremely True 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* ***************************

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138 Stress management techniques such as re laxation, which will be explained below, could be used to manage your arthritis. Relaxation can result in muscles becoming less tense, less pain ful, and may also help you rest better. Now take the time to liste n to the Relaxation CD. (4 minutes of the CD will be played) 1. After listening to the CD, I feel c onfident that I can use the relaxation CD to benefit my arthritis problems? Not at All Confident Extremely Confident 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 2. I feel that the relaxation CD is meant for people like me? Not at All Definitely 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 3. I feel that I can relate to the scenario (story) on the relaxation CD? Not at All Ex tremely 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 4. I feel that someone from my cultur al or racial group can relate to the speaker on the exercise CD? Not at All Extremely 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 5. I liked listening to the CD? Not at All Extremely 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* ***************************

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139 6. I found the CD to be very helpful? Not at All Extremely 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 7. I feel confident that I would use the relaxation CD at home on my own? Not at All Extremely 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 8. I would tell my friends to use the CD for their arthritis? Not at All Definitely 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** Eating well can help you manage your condition. The next session teaches you about how to eat in a healthy way. Please Read the Next Page and Answer the Questions that Follow.

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142 Based on what I read about healthy eating: 1. I feel the healthy eating section fits my needs? Not at All Extremely 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 2. I am likely to change my eating based on the material learned in the healthy eating section? Not at All Likely Extremel y Likely 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 3. I see how changing my eating would help my arthritis? Not at All True Extremely True 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 4. It seems that the healthy eating se ction was designed with people like me in mind? Not at All Likely Extremely Likely 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* ***************************

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143 Stress management techniques such guided imagery, which will be explained below, could be used to ma nage your arthritis. Guided imagery can result in muscles becoming less ten se, less painful, and may also help you rest better. Now take the time to liste n to the Guided Imagery CD. (4 minutes of the CD will be played) 1. After listening to the CD, I feel conf ident that I can us e the guided imagery CD to help my arthritis problems? Not at All Confident Extr emely Confident 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 2. I feel that the guided imagery CD is meant for people like me? Not at All Definitely 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 3. I feel that I can relate to the scenario (story) on the guided imagery CD? Not at All Ex tremely 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 4. I feel that someone from my cultur al or racial group can relate to the speaker on the guided imagery CD? Not at All Extremely 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 5. I liked listening to the guided imagery CD? Not at All Extremely 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* ***************************

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144 6. I found the guided imager y CD to be very helpful? Not at All Extremely 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 7. I feel confident that I would use the guided imagery CD at home on my own? Not at All Extremely 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 8. I would tell my friends to use t he guided imagery CD for their arthritis? Not at All Definitely 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** The last questions will ask you about the arthritis self-help program in general. Based on each part of the program that you saw 1. Is there anything in the materials that you made you feel uncomfortable or that you felt was not acceptable? Not at All Definitely 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* ************************** 2. Is the written material in any way offensive? Not at All Extremely 0 1 2 3 4 5 6 7 8 9 10 3. Are the pictures or gra phics in any way offensive? Not at All Extremely 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 4. Is the audio in any way offensive? Not at All Extremely 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* ***************************

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145 5. Are the arthritis program materials visually appealing? Not at All Extremely 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 6. Are the problems and concerns addr essed in the program problems that you have with your arthritis? Not at All Extremely 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 7. On average the total length of an exercise section on the CD is 20 minutes long. Is it likely that you would li sten and exercise with an entire section on the CD? Not at All Likely Extremel y Likely 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 8. Would you attend a class one day a week for six weeks covering the material presented here in greater detail? Not at All Likely Extremel y Likely 0 1 2 3 4 5 6 7 8 9 10 9. Did you find the arthritis program material easy to r ead, for example the page on problem solving? Not at All Extremely 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* *************************** 10. When reading the program material on arthritis did you feel the print was big enough, for example the page on problem solving? Not at All Definitely 0 1 2 3 4 5 6 7 8 9 10 ********************************** ******************************* ***************************

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146 2. Which do you feel best describes your race/ethnicity? Please check the one that best applies to you. White (Not Hispanic) Black/African American (Not Hispanic) Hispanic Asian Native American Other If Other please specify. __________________ __________________ _____________ 3. What is your gender? Male Female 4. Please check the box that best descri bes your approximate family annual gross income (before taxes and insu rance). This should include the following sources; wages, pensions, dividends, and any additional household income. (Please check the box that best applies to you) Less than $5,000 $5,000 $9,999 $10,000 $14,999 $15,000 $19,999 $20,000 $29,999 $30,000 $39,999 $40,000 $49,999 $50,000 $59,999 $60,000 $79,999 $80,000 $99,999 $100,000 and over THE END Thank you for your help

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147 Appendix C: Progressive Mu scle Relaxation CD Script Make yourself as comfortable as possibl e. Uncross your legs, ankles, and arms. Allow your body to feel completely suppor ted by the surface beneath you. You may want to close your eyes, as a way of cl osing out any unnecessary distractions. Begin by taking a deep breath, breathing in through your nose, filling your chest and breathing all the way dow n to the abdomen. When you are ready to breathe out, breathe out through pursed lips slowly and comp letely. As you breathe out, let as much tension as possible flow out with your breath. Let all your muscles feel heavy, and let your whole body just sink into the surface beneath you. This exercise will guide you through the major muscle groups from your feet to your head, asking you to first tense and then re lax those muscles. If you have pain in any part of your body today, do not te nse that area. Instead just notice any tension that may already be there and le t go of that tension. Become aware of the muscled of your feet and calves. Pull your toes back up toward your knees. Hold your feet in this position…noticing the se nsations…Now relax your feet and release the tensi on. Observe any changes in sens ations as you let go of the tension. Now tighten the large muscles of your thighs and buttocks. Hold the muscles tense. And as you do, be aware of the se nsations…And now rele ase these muscles, allowing them to feel soft, as if they are melting into the surface beneath you.

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148 Now turn your attention to your abdomen and chest. Tense these muscles by holding in your abdomen and tightening the muscles on your chest wall. Notice a tendency to hold your breath as you tense thes e muscles. Now release the tension. You may feel a natural desire to ta ke a deep breath to release ev en more of the tension, and so do that now. Breathe in deeply through your nose, and when you breathe out, allow your abdomen and chest to soften. Now, stretching your fingers out straight tighten the muscles of your hands and arms. Release and feel the tension flow ing out and the circ ulation returning. Next, press your shoulder blades togeth er, tightening the muscles in your upper back, shoulders, and neck. This is a place many people carry tension…And relax. You may notice that your muscles feel a little warmer and more alive. Finally, tighten all the muscles of yo ur face and head…Notice the tension around your eyes and in your jaw. Now release th e tension, allowing the muscles around your eyes to soften and your mouth to remain s lightly open as your jaw relaxes. Notice the difference. Now take another deep breath, and when you’re ready to br eathe out, allow any remaining tension to flow out with your br eath and your whole body to be even more deeply relaxed. And now just enjoy this feel ing of relaxation for a little while…In this quiet state, notice the heaviness of your mu scles…and the rhythm of your breathing…as you breathe in and breathe out…

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149 Remember this pleasant feeling. You can quiet your mind and body in this way anytime you do this exercise. With practice, you w ill be able to create this feeling just by taking a deep breath. As you prepare to end this exercise, picture yourself brin ging this feeling of quiet and calm to whatever you are going to do next. And then take one more deep breath and, when you are ready, open your eyes.

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150 Appendix D: Guided Imagery CD Script You are giving yourself some time to quiet your mind and body. Allow yourself to settle comfortable, wherever you are ri ght now. If you wish, you can close your eyes. Breathe in deeply, through nose, expanding your abdomen and filling your lungs. Pursing your lips, exhale through your mouth slowly and completely, allowing your body to sink heavily into the surface beneath you…And on ce again breathe in through your nose and all the way down to your abdomen, and then breathe out slowly through pursed lips – letting go of tension, letting go of anything that is on your mind right now and just allowing yourself to be present in this moment… Imagine yourself walking along a peaceful old country road. The sun is warm on your back…the birds are singing…th e air is calm and fragrant. As you walk along, your mind naturally wande rs to the concerns and worries of the day. Then you come upon a box by the side of the road and it occurs to you that this box is a perfect place to leave your care behind while you enjoy this time in the country. So you open the box and put into it any con cerns, worries, or pressures that you are carrying with you. You close the box and fast en it securely, knowi ng that you can come back and deal with those con cerns whenever you are ready. You feel lighter as you progress down the road. Soon you come across an old gate. The gate creaks as you open it and go through. You find yourself in an overgrown garden – flowers and growing where they have seeded themselves, vine climbing over a fallen tree, soft green wild grasses, and shade trees.

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151 Breathe deeply, smelling the flowers…listen to the birds and insects…feel the gentle breeze warm against your skin. All of your senses are alive and responding with pleasure to this peaceful time and place. When you are ready to move on, you leis urely follow a path behind the garden, eventually coming to a more wooded area. As you enter this area, you r eyes find the trees and plant life restful to look on. The sun is f iltered through the leaves. The air feels mild and a little cooler. You beco me aware of the sound and fragrance of a nearby stream. You pause and take in the sights and sounds, breat hing deeply of the cool and fragrant air several times…And with each breath, you feel more refreshed. Continuing along the path for a while, you come to the stream. It is clear and clean and it flows and tumbles over the rocks and some fallen logs. You follow the path along the creek for a way, and after a while you come out into a sunlit clearing, where you discover a small waterfall emptyi ng into a quiet pool of water. You find a comfortable place to sit for a while, a perfect spot where you can feel completely relaxed. You feel good as you allow yourself to just en joy the warmth and solitude of this peaceful place. After a while, you become aware that it is time to return. You arise and walk back down the path, through the cool and fragrant trees, out into the sun-drenched overgrown garden…One last smell of the fl owers, and out the creaky gate. You leave this country retreat for no w and return down the road. You notice you feel calm and rested. You know that you can vi sit this special place whenever you wish to take some time to refresh yourself and renew your energy.

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About the Author Chivon A. Mingo received a Bachelor of Science Degree in Psychology and a minor in Gerontology from Georgia State Univ ersity in 2003. In 2005, she received a Master of Arts Degree in Gerontology from the University of South Florida. Ms. Mingo was awarded the McKnight Doctoral Fellowshi p and entered the Ph.D. in Aging Studies program at the University of South Florida in 2005. While in the Ph.D. program at the Univ ersity of South Flor ida, Ms. Mingo was employed as a Graduate Teaching Associ ate, teaching undergraduate Life Cycle (Developmental Psychology) and Race, Ethnic ity, and Aging (Minority Aging) courses. She has served as a Graduate Research Assi stant on two grant-funde d research projects under the auspices of Dr. Jessica McIlvane, and as the Principal Investigator on two projects outside of her disse rtation research, on e of which was funded by the Florida Chapter of the Arthritis Foundation. Ms. Mingo has co-authored five peer-reviewed journal articles, and presente d her work at several nati onal conferences including the Gerontological Society of America, and the National Medical Association.