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1 TEST OF A CULTURALLY SENSITIVE HEALTH EMPOWERMENT INTERVENTION ON STRESS, HEALTH PROMOTING BEHAVIORS, BLOOD GLUCOSE AND BLOOD PRESSURE AMONG DIVERSE ADULTS WITH TYPE 2 DIABETES FROM LOW INCOME HOUSEHOLDS By KATHERINE D. DALY A DISSERTATION PRESENTED TO THE GRADUATE SCHOOL OF THE UNIVERSITY OF FLORIDA IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF DOCTOR OF PHILOSOPHY UNIVERSITY OF FLORIDA 2011
2 2011 Katherine D. Daly
3 This dissertation is dedicated to my undergraduate philosophy of Maryland, Dr. Alan Paskow, who encouraged me to put my philosophy into action as a Counseling Psychologist. Thank you for conne cting with me and helping me find my voice That connection helped me tremend ously over the years and, ultimately the clients I now treat.
4 ACKNOWLEDGEMENTS I would like to acknowledge the many professors and psychologists who nurtured my passion for psychology throughout my education. After ten years of formally studying psychology, I still love it! Thank you, Drs Libby Nutt Williams, Laraine Masters Glidden, C ynthia Koenig Alan Paskow, Brent Mallinckrodt, Allyson Brathwaite Gardner Ca rolyn Tucker, Michael Murphy, Greg Neimeyer Cire cie West Olatunji, David Walden Mar shall Knudson, Connie Hartstock and Phil Johnson Each of you demonstrated a passion for the science and/or practice of psycholo gy and I am grateful to you for sharing this with me. I would like to express gratitude to my advi s or, Dr. Carolyn Tucker, for the unwaver ing suppo rt and lov e you have shown your students over the years You have inspired me with your academic excellence big brain your deep care and concern for others big heart I believe this world is a better and healthier place because of you and that you have taught the Lastly a special thank you goes to my friends and family Many dear friends have been a part of this journey and have taught me to live a balanced life and that work is meaningl ess without friendship fun, the TOP, nature, the love the Kanapaha Botanical Gardens, laughter, Knoxville Greenways, the dog park, and a good bottle of red wine I also want to acknowledge a great friend and lovely person Dereck Chiu, whose life and career as a counseling psychologist were cut short by cancer. Y ou have inspired me to keep going. For my family, I would not be where or who I am today without t he love, support and patience you have shown me Thr ough hardship and successes you have been my most i nfluential teachers Thank you with lots of love Mom Dad, Crissy, Kim, Karen Grandma Daly, Grandma Huttlin and Joe
5 TABLE OF CONTENTS P age ACKNOWLED GEMENTS ... LIST OF TABLES ............ LIST OF FIGURES ABSTRACT ........... CHAPTER 4 8 9 10 1 INTRODUCTIO N Type 2 Diabetes: A Major Health Disparity in the United States Type 2 Diabetes and Hypertension : Two Major and Related Health Disparities The Association between Stress and Type 2 Diabetes and Hypertension The Role of Health Promoting Behaviors in Treating Type 2 Diabetes Need for Patient Centered Culturally Sensitive Interventi o ns to Increase Healt h Promoting Behaviors for Patients with Type 2 Diabetes ............ The Patient Centered Culturally Sensitive Health Care (PC CSHC ) Model Implications of PC CSHC for Counseling and Clinical Psychologists Pathways of the PC CSHC Model Support for the Patient Centered Culturally Sensitive Health Care Model 12 14 16 16 17 19 20 21 24 2 LITERATURE REVIEW Type 2 Diabetes: Definition, Prevalence, and Cost in the United States ........... Definition of Type 2 Diabetes Prevalence of Type 2 Diabetes Cost of Type 2 Diabetes The Role of Socioeconomic Status in Heal th Disparities Type 2 Diabetes and Hypertension: Two Major and Rel ated Health Disparities ............ Underlying Risk Factors for both Type 2 Diabetes and Hypertension Obesity as an Underlying Risk Factor Stress as an Underlying Risk Factor American Diabetes Association Standards of Medical Care in Diabetes Patient Adherence to the American Diabetes Association Standard s ............ Health Promoting Behaviors and Type 2 Diabete s and Hypertension: Diet, Physical Activity, and Stress Management Diet as a Health Promoting Behavior Physical Activit y as a Health Promoting Behavior ........... Stress Management as a Health Promoting Behavior Patient Empowerment and Type 2 Diabetes ............ Models of Patient Empowerment used in Previous Diabetes Interventions ... ........... 27 27 28 29 30 31 32 33 34 37 39 41 42 45 47 50 51
6 Chronic care model Ecological model of behavior change REACH model ............ Use of technology to promote patient empowerment The Patient Provider Relationship and Type 2 Diabetes Previous Culturally Sensitive Interventions to Facilitate Health Promoting Behaviors among Adults with Type 2 Diabetes The Patient Cent ered Culturally Sensitive Health Care (PC CSHC) Model Research that Lead to the Development of the PC CSHC Model The PC CSHC Intervention ctives on PC CSHC . Literature Based Pathways of the PC CSHC Model The PC CSHC Model Based Health Empowerment Intervention that will be Tested in the Present Study Hypotheses 51 52 53 54 55 58 60 62 6 3 63 65 66 67 3 RESEARCH METHODOLOGY Participants Measures Patient Demographic and Health Data Questionnaire Tucker Culturally Sensitive Health Care Provider Inventory The Health Promoting Lifestyle Profile II The Strain Questionnaire The Patient Empowerment Inventory Health Record Form ........... Measurement of Blood Pressure and Blood Glucose Procedure Participant Recruitment Baseline Data Collection Culturally Sensitive Health Empowerment Intervention (CS HEI) ........... Post Data Collection ........... Abbreviated CS HEI for Control Participants 70 72 73 73 7 4 75 75 76 76 77 77 79 80 82 87 4 RESULTS Results of Descriptive Statistics Preliminary Analyses Results of Hypotheses 1 6 Hypothesis 1 ........... Hypothesis 2 ........... Hypothesis 3 ........... Hypothesis 4 ........... Hypothesis 5 ........... Hypothesis 6 ........... 92 94 97 97 98 99 100 101 102
7 5 DISCUSSION Summary and Interpretation of Results Limitations of the Present Study Future Directions for Research Implications for Counseling Psychologists Conclusions 115 124 127 129 131 APPENDIX A P ATIENT DEMOGRAPHIC AND HEALTH DATA QUESTIONNAIRE B T UCKER CULTURALLY SENSITIVE HEALTH CARE PROVIDER INVENTORY C T HE HEALTH PROMOTING LIFESTYLE PROFILE II D T HE STRAIN QUESTIONNAIRE E THE PATIENT EMPOWERMENT INVENTORY . F HEALTH RECORD FORM ... G INFORMED CONSENT FORM H WORKSHOP AGENDAS FOR CULTURALLY SENSITIVE HEALT H EMPOWERMENT INTERVENTIONS 133 137 139 141 144 146 147 157 REFERENCE LIST BIOGRAPHICAL SKETCH 159 1 67
8 LIST OF TABLES Table Page 3 1 Demographic characteristics of control and intervention p articipants 88 3 2 Health related characteristics of control and intervention p articipants 89 3 3 Demographic c haracteristics of participants by r acial g roup 90 3 4 Health related c haracteristics of participants by r acial g roup 91 4 1 Descriptive data for psychosocial variables (pre and post i ntervention) 105 4 2 Descriptive data for health variables (pre and p ost i ntervention) 106 4 3 Descriptive data for psychosocial and health variables by racial grou p (p re intervention) 107 4 4 Descriptive data for psychosocial and health variables by racial grou p (p ost intervention) 108 4 5 Characteristic s of the healthiest and l ea st healthy p articipants 109 4 6 Pearson correlations among variables for control p articipants 111 4 7 Pearson correlations among variables for intervention p articipants 111 4 8 Repeated measures MANOVA results for provider cultural s ensitivity 112 4 9 AN C OVA results for physical s tress 112 4 10 Repeated measures MANOVA results for health promoting b ehaviors 113 4 11 AN C OVA results for patient e mpowerment 113 4 12 Repeated m easures MANOVA and ANCOVA results for blood p ressure 114 4 13 AN C OVA results for blood g lucose 114 4 14 Wilcoxon signed rank test results for blood g lucose 114
9 LIST OF FIGURES Figure Page 1 1 centered culturally sensitive health c are m odel 23 2 1 Most proximal p athways of patient c entered c ultura lly sensitive h ea lth care m odel that informed the culturally s ensitive health empowerment i ntervention tested in the present s tudy 69
10 Abstract of Dissertation Presented to the Graduate School of the University of Florida in Partial Fulfillment of the Requirements for the Degree of Doctor of Philosophy TEST OF A CULTURALLY SENSITIVE HEALTH EMPOWERMENT INTERVENTION ON STRESS, HEALTH PROMOTING BEHAVIORS, BLOOD GLUCOSE AND BLOOD PRESSURE AMONG DIVERSE ADULTS WITH TYPE 2 DIABETES FROM LOW INCOME HOUSEHOLDS By Katheri ne D. Daly August 2011 Chair: Carolyn M. Tucker Major: Counseling Psychology Type 2 diabetes has become a leading health disparity in the U.S., particularly among racial/ethnic minorities and non Hispanic White Americans with low household incomes (ADA 2007). The best defense for preventing type 2 diabetes is adopting a healthy lifestyle that includes physical activity and a healthy diet. Preliminary studies have shown that both patient centered culturally sensitive health care and health promoting lif estyles are associated with positive health outcomes among patients with type 2 diabetes (Two Feathers et al., 2005). The present research tested the impact of a Culturally Sensitive Health Empowerment Intervention (CS HEI) that was informed by major aspe cts of the Patient Centered Culturally Sensitive Health Care (PC CSHC) Model developed by Tucker and colleagues (2007). The PC CSHC Model explains how perceived provider cultural sensitivity, patient empowerment, stress, and health promoting behaviors are linked to health outcomes. Participants in this study were 94 adults with type 2 diabetes from low income households. Sixty eight participants were African Americans (74%), 24 were non Hispanic Whites (24%), and two did not report their race.
11 Participant s in this study were assigned to either an Intervention Group (IG) or a Wait list Control Group (CG) using a stratified sampling procedure to ensure equal ethnic and gender representation per group. The IG experienced the CS HEI, and after the research pha se of the study to test the intervention, the CG was offered participation in an abbreviated CS HEI. Findings from this study suggest that IG participants, but not CG participants, evidenced significant reduction in diastolic blood pressure at the 2 month post intervention. Additionally, IG participants, but not CG participants, evidenced improvement in nutrition and decreases in physical stress at post intervention that approached significance. The results suggest that the tested CS HEI may be an effectiv e tool for improving nutrition, physical stress levels, and blood pressure of patients with type 2 diabetes. Thus, support is provided for future similar studies with larger and more diverse patient samples. An important implication of this study is that counseling psychologists can use their knowledge of cultural sensitivity, stress, and empowerment, to develop and test health empowerment interventions among diverse adults from low income households who have type 2 diabetes.
12 CHAPTER 1 INTRODUCTION Type 2 Diabetes: A Major Health Disparity in the United States Type 2 diabetes is a disease characterized by progressive insulin resistance that is frequently caused by lifestyle factors, hereditary factors and underlying health conditions s uch as obesity In the U.S. this disease has become a leading he alth disparity among racial/ethnic minorit ies and non Hispanic White American s with low household incomes ( ADA, 2007 ; CDC, 2010 ) The incidence of type 2 diabetes has doubled in the U.S. over the past two decades (CDC, 2008) and it is now one of the deadliest diseases facing Americans. Rates of t ype 2 diabetes are expected to continue to rise among Americans as its risk factors of obesity, high blood pressure, and high cholesterol become increasingly prevalent T he Centers for Disease Control and Prevention predicts that by 2050, 1 in 3 Americans will have type 2 diabetes and that African Americans, Latinos, and Native Americans will be among the groups at increased risk for developing th is disease (CDC, 2010) The best defense for preventing and delaying the onset of type 2 diabetes is adopting a healthy lifestyle. Health disparities refer to differences in disease prevalence, health care access, treatment outcomes, and health care qualit y between some racial/ethnic minority groups compared to non Hispanic White s, between members of lower socioeconomic groups and members of higher socioeconomic groups, and between people with lower levels of education and those with advanced level s of educ ation (CDC, 2010; AHRQ, 2009). M inority persons and persons with l ow household incomes are almost twice as likely to be diagnosed with type 2 diabetes compared to people in higher socioeconomic groups and non Hispanic White s (CDC, 2007) respectfully. This health disparity is partly due to limited access to preventative health care and health promoting resources by individuals with lower education and/or lower household incomes Lack
13 of preventative health care often leads to delayed dise ase diagnosis, longer disease duration, and more severe disease related complications (CDC, 2005). Income and access to insurance have been identified as primary factors that explain the higher incidence of health problems among non Hispanic White s and per sons from minority groups from low income households (Beaudoin, 2009). Generally speaking, minority persons are overrepresented in low income socioeconomic groups at the national and state level. For example, in 2009 non Hispanic White s accounted for about 13% of the low income population and African Americans accounted for 34% of the low income population nationally (Kaiser Foundation 2009). Low income in this case is described as meeting the U.S. Department of Health and Human Services guidelines fo r poverty, which is an annual household income of $21,200 or less for a family of four. G reater attention is being given to socioeconomic factors such as income, health insurance, and neighborhood SES (the environment and resources surrounding the person) with regard to health disparities because these factors account for many dif ferences in disease prevalence health outcomes, and access to health promoting resources such as parks, healthy food stores, etc. (Geraghty, Balsbaugh, Nuovo, & Tandon, 2010; Esca rce, 2008; Beaudoin, 2009). Thus, when referring in general terms to the groups most at risk for experiencing type 2 diabetes healt h disparities the phrase minority and majority groups with low household incomes and/or from low income households will be used except in instances when referencing studies that included specific racial/ethnic groups. This departure distinguishes fro m the commonly used phrase low income, racial/ethnic fails to incl ude non Hispanic White s with low household incomes who often experience similar rates of health disparities despite their majority status. This also acknowledges that many African Americans and members of other racial/ethnic minority groups
14 may be in middl e to higher income brackets and are less likely to experience type 2 diabetes health disparities compared to persons with low household incomes from either majority or minority groups. quality of life, health disparities have serious financial consequences for the entire nation due to the exorbitant costs of treating chronic diseases These costs are particularly problematic among th e many minority and non Hispanic White persons from low income household s who cannot afford to pay for treatment. With the aging and diversification of the U.S. population it is imperative to develop interventions that reduce and eliminate the health disparities that plague our nation A national level response to this reality was Healthy People 201 0 an initiative launched by the U.S. Department of Health and Human Services which aims to improve the health of the nation by 2010 through federally funded and grassroots intervention programs to increase health promoting behaviors among children, adults, and families. A specific objective outlined in Healthy People 2010 that is being reiterated in the updated Healthy People 2020 is to eliminate health disparities in type 2 diabetes outcomes for racial/ethnic minority groups and groups w ith low socioeconomic status and to better understand the factors that contribute to health. Type 2 Diabetes and Hypertension : Two Major and Related Health Disparities Hypertension is both a complication and commonly associated condition of type 2 diabetes. Hypertension also known as high blood pressure is a chronic condition characterized by increased arterial pressure of the blood vessels. When left untreated, hypertension increases the risk of myocardial infarction, stroke, and blindness. Like type 2 diabetes, hypertension also disproportionately affec ts people from low income households and is overrepresented among
15 racial/ethnic minorities especially African Americans. H owever, its rates are increasing among all Americans (Covington & Grisso, 2001; Bryant et al, 2010; Okosun, Glodener, & Dever, 2 003). B oth hypertension and type 2 diabetes have similar underlying causal risk factors, mainly stress, obesity, and having an unhealthy lifestyle According to the ADA, in 2007 75% of adults with type 2 diabetes had blood pressure greater than 130/80 mmHg an d 60% of people with type 2 diabetes ha d blood pressure of 140/90 mmHg. These measurements (i.e., 130/80 mmHg and 140/90 mmHg) refer to the clinical cutoffs for pre hypertension and hypertension, respectively. Systolic blood pressure (the higher number) re (the lower number) refers to the pressure exerted against the arterial walls (NICE, 2006). W hen individuals have both type 2 diabetes and hypertension, which frequently coincide additional complications and health risks emerge. Specifically, poor management of blood pressure in persons with type 2 diabetes increases the likelihood of experiencing micro and macro vascular complications ( e.g. erectile dysfunction, stroke blindness, amputations ) by up to 40% (ADA, 2009) R ecent findings released from the American Academy of Neurology in 2011 are linking poorly managed blood Indeed, t he complication of high blood pressure profoundly impact s quality of life and outcomes for people with type 2 diabetes. Racial/ethnic minority persons and non Hispanic Whites from low income households who have type 2 diabetes have been found to experience increased com plications of diabetes due to poorer management of both blood pressure and blood glucose (ADA, 2007)
16 The Association b etween Stress and Type 2 Diabetes and Hypertension Persons from low income households are at risk for experiencing increased stressors including poverty and decreased access to health promoting and stress reducing activities/facilities ( Rohm Young et al., 20 04). Racial/ethnic minorities from low income household s often face additional stres sors related to experiencing oppression and racism (Thomas & Gonzalez Prendes, 2009). Stress can be manifested as physical, emotional, and cognitive stress N umerous theories have been proposed that e xpound on how stress leads to reduced immune functioning and increased risk of developing chronic illnesses (e.g., Lefebvre & Sandford, 1985; McEwan, 1998). Stress has been proposed as a contribut or to health disparities because it operates as both a health risk fac tor and it interferes with engagement in protective health promoting behaviors In patients with type 2 diabetes, higher levels of reported stress are positively correlated with poorer health outcomes, namely higher fasting blood glucose and higher blood p ressure, (Kim et al., 2009; Garay Sevilla et al., 2000; Trovato et al 2006). Stress is a predictor of poorer self management behaviors for patients with type 2 diabetes, and stress specifically interfere s in the areas of diet and physical activity adhere nce (Gonzalez et al., 2008) which are critical for maintaining healthy weight, blood pressure, and blood glucose levels. Patients with type 2 diabetes who have higher baseline stress levels have been found to have lower response /success rates to health promoting and weight loss interventions (Kim et al., 2009). The Role of Health Promoting Behaviors in Treating Type 2 Diabetes Health promoting behaviors refer to behaviors that persons with type 2 diabetes and other chronic illnesses can engage in to reverse or minimize the symptoms of the illness or delay the onset of illness related complications. Health promoting behaviors improve health outcomes.
17 Eating healthy foods and engaging in physical activity are two health promoting behaviors that a re most frequently targeted in type 2 diabetes interventions. Interventions focused on increasing engagement in health promoting behaviors, especially diet and physical activity, have produced powerful results in preventing and reversing symptoms of type 2 diabetes. Previous intervention studies have demonstrated that weight loss achieved through healthy dietary intervention regulate blood glucose levels and reduce bl ood pressure (Kelley, 1995). Physical activity interventions with patients w ho have a type 2 diabetes diagnosis have been credited with lower ing blood pressure, regulating blood glucose levels, and preventing the onset of diabetes by up to 60% in at risk populations (Sigal, 2006; Knowler et al., 2002). Stress management is also a health promoting behavior /skill that is used in treating type 2 diabetes Intervention studies conducted with patients w ho have a type 2 diabetes diagnosis have demonstrated that stress management and relaxation training ha ve a positive effect on regulating blood glucose (Surwit et al., 2002). Need for Patient Centered Culturally Sensitive Interventions to Increase Health Promoting Behaviors among Patients with Type 2 Diabetes There is growing acknowledgement in the U.S. that culturally sensitive health care interventions are necessary to encourage health promoti ng behaviors among racial/ethnic min ority groups with low household income s in order to reduce health disparities in the U.S. Given that cultural factors intersect with both internal and external factors (e.g., psychological, economic, environmental) to influence health status, health care quality, and health outcomes, patient centered cultu rally sensitive approaches have much potential for guiding health promoting intervention efforts ( Betancourt, Green, Carrillo, & Ananeh Firempong, 2003 ; Scisney Matlock, 2009 ). Consequently, there are national calls for patient centered culturally
18 sensiti ve health care to prevent and treat chronic health problems, such as type 2 diabetes, that are now overloading the U.S. health care system (AHRQ, 2009; CDC, 2005). Tucker and colleagues (200 7 ) offer the following definition of patient centered culturally sensitive health care: P atient centered culturally sensitive health care (a) includes b ut extends beyond cultural competence, and thus we refer to it as cultural competence plus; (b) conceptualizes the patient provider rel ationship as a partnership that emerges from patient centeredness; (c) focuses on patient empowerment that includes providing patients with structured opportunities to give providers feedback regarding the quality of their health care provision; and (d) is evidenced by modifiable and measurable provider and staff member behaviors and attitudes and clinic environment characteristics as desired and identif ied by patients. (p.638) Patient centered culturally sensitive health care interventions are especially well suited for patients with type 2 diabetes given the high proportion of patients from low income households and/or racial /ethnic minority group s who are diagnosed with this disease Patient centered culturally sensitive interventions are also ideal for t ype 2 d iabetes management because this disease re quires active involvement of patients in their treatment and patient provider collaboratio n However, there is a dearth of studies that have actually empirically tested the relationship between patient cent ered culturally sensitive health care and health outcome s (Betancourt, Green, Carrillo, & Park, 2005) and even fewer studies have specifically focused on t esting the effects of culturally sensitive patient centered interventions on health outcomes among p atients with type 2 diabetes Preliminary studies have shown that both patient centered c ulturally sensitive health care and health promoting lifestyles are associated with positive health outcomes among patients with type 2 diabetes. Specifically, the REACH (Racial and Ethnic Approaches to Community Health) Model (which is based on Healthy People 2010 ) and empowerment based approaches have been used with non Hispanic Whites, Hispanics/ Latinos, and African Americans with type 2 diabete s and have yielded successful outcomes Results from
19 these studies have demonstrated improvement in dietary knowledge and be haviors, physical activity, body mass index (BMI) and Hb A1C levels a more stable and predictive measure of blood glucose over time (Two Feathers et al., 2005; Mayer Davis et al., 2004) Patient c entered c ulturally sensitive health care interventions and models ha ve been tested with non Hispanic White s and African Americans from low income households and have demonstrated beneficial health outcomes for both racial/ethnic groups (Mayer Davis et al., 2004 ). Indeed, the effects of culturally sensitive health care interventions can benefit both minority and majority patients with type 2 diabetes and are especially suited to meeting the needs of underserved groups from low income households The Patient Centered Culturally Sensitive Health Care (PC CSHC ) Model The PC CSHC Model was informed by qualitative research with non Hispanic White African American, and Latino primary care patients from low income households who participated in focus group sessions. This qualitative research co nducted by Tucker and colleagues sought to identify the characteristic s of culturally sensitive health care from the perspective of primary care patients (Tucker et al., 2003). These diverse focus group participants specifically identified provider behaviors, office staff behaviors, and health care clinic characteristics and p olicies that enable patients to experience trust, respect, and comfort in their health care. T his valuable information and existing health care literature informed Tucker and colleagues definition of patient centered culturally sensitive health care and lead to the develop ment of the PC CSHC Model The PC CSHC Model similar to the construct of PC CSHC that was previously defined, emphasizes a collaborative partner ship between patient s and their provider s that increases the power and control experienced by patients, and ultimately enable s patients to experience greater
20 control over their health process is encouraged and valued. In accordance with having a collaborative partner ship experienced as patient centered and evaluations of their cultural se nsitivity/compete nce and patient centeredness Implications of PC CSHC for Counseling and Clinical Psychologists Lastly, PC CS HC underscore s the role of psychological variables in the health care process; specifically, in this model, perceived cultural sensitivity patient satisfaction, stress and empowerment/ interpersonal control are conceptualized as having significant influence on engagement in health promoting behaviors and treatment adherence which in turn produc e changes in health outcomes A num ber of widespread health intervention models, such as the chronic care model and ecological model of behavior change, emphasize psychosocial variables in health outcomes (Scisney Matlock et al., 2009). T he importance of psychological health is increasingly being recognized as an important aspect of (physical) health care and as an antecedent to producing desired change s in physical health outcomes (Mayer Davis et al., 2004) Awareness of the function of psychological variables in physical heal th behaviors and outcomes has expande d the roles for psychologists working with patients with chronic health conditions. T he founders of this model emphasize that counseling and clinical psychologists are especially well suited to train health care provid ers and patients in the behaviors and attitudes that encompass PC CSHC especially with the ir extensive training in and awareness of multicultural/diversity issues Counseling and clinical psychologists are also trained in understanding the negative effects of stress on health and are trained in teaching clients/patients
21 healthier ways of coping with stress and specific techniques for reducing stress and anxiety (i.e ., progressive muscle relaxation) Stress plays a major role in the development and maintenance of type 2 diabetes Health intervention s tudies that have included basic stress management as part of the tested intervention s have produced positive long ter m health outcomes (i.e. reduction of blood glucose; Surwit et al., 2002) and have predicted success in weight loss programs for people with type 2 diabetes (Kim, Bursac, DiLillo, White & West, 2009) Indeed, t here are numerous opportunities for counseling and clinical psychologist s to use their knowledge of stress and other psychosocial variables emphasized in the PC CSHC Model to conduct interventions with underserved patients with chronic health conditions. Pathways of the PC CSHC Model The following is a synopsis of the specific literature based proposed pathways of the PC CS HC Model A ccording to the M odel, when patients perceive the health care they receive as culturally sensitive it increases their trust and comfort with their health care providers, which subsequently increases their satisfaction with the i r health care and the level of control they experience with regard to their health. Furthermore, according to this model, i ncreased interpersonal control and patient satisfaction are associated with lower levels of perceived physical stress, and each of these three aforementioned variables (i.e., interpersonal control, patient satisfaction, and physical stress) has direct pathways to engagement in health promoting behaviors and treatment adherence. Interpersonal control and patient satisfaction are positively correlated with engagement in health promoting behaviors and treatment adherence; and physical stress is inv ersely correlated with engagement in health promoting behaviors and treatment adherence Engaging in health promoting behaviors and adhering t o treatment
22 recommendations are linked with more positive health outcomes such as reduced blood pressure (Tucker et al., 2003) Centered Culturally Sensitive Health Care Model.
23 Figure 1 1 centered culturally sensitive h ealth c are (PC CSHC) m odel Perceived Provider Cultural Sensitivity Interpersonal Control / Empowerment Trust in Physician Physical Stress Health Promoting Lifestyle Behaviors Treatment Adherence Health Outcomes Patient Satisfaction
24 Support for the Patient Centered Culturally Sensitive Health Care Model Numerous research studies have documented that when patients experience greater control and satisfaction with their health care, they are more inclined to adhere to treatment recommendations, which ultimately leads to more positive health outcomes (Auerbach, Clore, Kiesler et al., 2002; Jahng, Martin, Golin, & DiMatteo, 2004). Other intervention studies have linked low er stress levels to type 2 diabetes self management behaviors and outcomes, specifically blood glucose management and weight loss. It has been reported that increased levels of stress interfere s with meeting weight loss objectives and deter maintaining a healthy diet and physical ac tivity among people with type 2 diabetes ( Kim et al., 2009 ; Gonzalez et al., 2008). Higher reported stress has repeatedly been associated with poorer health outcome me asures including higher fasting blood glucose levels and higher blood pressure (Skaff et al., 2009). In sum, there appears to be research support for the connection between stress and both engagement in health promoting behaviors and treatment adherence a connection emphasized in the PC CSHC Model. Researchers have begun to examine the influence of perceived provider cultural sensitivity on patient health outcomes. One of the first documented studies to empirically test this relationship was conducted by Majumdar, Browne, Roberts, and Carpio (2004) who found that patients whose providers had received cultural sensitivity training demonstrated increases in overall functioning and use of social services without any increase in health care costs. More recent ly, studies have examined the influence of provider cultural sensitivity on patient outcomes for patients with type 2 diabetes. For example, one study focused on patient outcomes following a culturally and linguistically sensitive health intervention for L atinos with type 2 diabetes. Participants in this study demonstrated significant weight loss and significant improvement in
25 blood glucose levels (Metghalchi et al., 2010). Lastly, a culturally sensitive health care program known as the African American Wel lness Village, created specifically as a diabetes resource for African Americans that attracts approximately 700 900 individuals with type 2 diabetes annually, has been found to increase self reported patient satisfaction, trust, and preventative screening s for blood pressure, vision, and glaucoma (McKeever, Koroloff, & Faddis, 2006). However, these studies are limited by a lack of theoretical models guiding the research. Partial support for the PC CSHC Model was recently provided in a study by Tucker and centered provider cultural sensitivity and engagement in health promoting behaviors and treatme nt adherence among a skewed sample of African American and non Hispanic White primary care patients from low income households Specifically, using a path analysis it was found that perceived patient centered cultural sensitivity of providers was positively linked to health promoting behaviors and treatment adhe rence of the participating patients through control, and reducing stress. In the PC CSHC Model, interpersonal control is a way of measuring patient empowermen t because these concepts are closely related. It is assumed that patients who experience higher levels of patient empowerment also experience higher levels of interpersonal control regarding their health The model tested differed slightly for African American and non Hispanic White participants. For African Americans, provider cultural sensitivity had both direct and indirect effects on dietary adherence and engagement in health promoting behaviors, but wa s not associated with medication adherence. For non Hispanic White s, on the other hand, provider cultural sensitivity was directly linked with engagement in health promoting behaviors and
26 medication adherence, but was not associated with dietary adherence. There were also differences in the pathways to health outcomes for African Americans and non Hispanic White s. For African Americans, trust in physician, interpersonal control, and patient satisfaction all had direct effects on health outcome behaviors (i. e., medication and dietary adherence) For non Hispanic White s only, trust in physician led to greater patient satisfaction with care, whereas lower levels of stress and increased interpersonal control had direct pathways to engagement in health promoting behaviors. This research suggests that interventions to promote patient centered culturally sensitive health care may contribute to positive health outcomes and engagement in health promoting behaviors among African Americans and non Hispanic White s, albei t through slightly different mechanisms of change. The findings from preliminary tests of the PC CSHC Model indicate that interventions ideally should include a focus on increas ing ( a variable used as an indicator of patient empowerment) reduc ing their stress, and increas ing their engagement in health promoting behaviors
27 CHAPTER 2 LITERATURE REVIEW The purpose of this chapter is to present literature relev ant to the focus of the p resent study. The following topics will be addressed in this chapter: (1) definition of type 2 diabetes, its prevalence, and cost in the U.S. ; (2) the relationship between hypertension and type 2 diabetes ; and (3) t he American Diabetes Association standards of medical care for diabetes. R esearch on type 2 diabetes supporting each aspect of the PC CSHC Model is also presented. Additionally, the importance of culturally sensitive interventions, patient empowerment, an d health promoting behaviors in the treatment of type 2 diabetes is addressed. Previous studies that have addressed these critical variables in interventions for improving health outcomes among patients with type 2 diabetes are also discussed. This section will conclude wi th a description of the present study and the hypotheses set forth in this study Type 2 Diabetes: Definition, Prevalence, and Cost in the U.S. Definition of Type 2 Diabetes Type 2 diabetes, one of the major health disparities, is a disease characterized by progressive insulin resistance that is frequently caused by lifestyle factors such as poor dietary habits and sedentary lifestyle. Underlying diseases including obesity and hereditary factors also contribute to the incidence of type 2 diabetes Type 2 diabetes leads to elevated blood glucose levels which in turn often lead to hyperglycemia, stroke, heart attack, amputations, kidney disease and depression (ADA, 2007) The incidence of type 2 diabetes has doubled over the pas t two decades (CDC, 200 7 ) in the U.S. and it is now one of the deadliest diseases in the U.S. It is estimated that type 2 diabetes will increasingly be diagnosed This is because of the increase in the risk factors for type 2
28 diabetes, which include obes ity, high blood pressure, and high cholesterol The best strateg ies for preventing and delaying the onset of type 2 diabetes are undoubtedly weight loss maintaining a healthy diet, and participation in regular exercise. A landmark study conducted by the Diabetes Prevention Program Research Group found that compared to the prescription drug metformin, which is commonly used to regulate and prevent diabetes, lifestyle intervention was more effective at preventing type 2 diabetes in a large sample of high ri sk persons for developing the disease. The l ifestyle intervention reduced the incidence of type 2 diabetes by an astonishing 58% whereas metformin reduced the incidence of developing type 2 diabetes by 31% (Knowler et al., 2002). It should be noted that the authors recommend that although both metformin and lifestyle intervention were both effective at preventing diabetes, the lifes tyle intervention had a higher success rate at preventing diabetes. However, the lifestyle intervention was particularly rigorous and could be cumbersome for those with low motivation or physical limitations. Specifically, the lifestyle intervention requi r ed 150 minutes of moderate to intense physical activity weekly and a target 7% weight loss from the initial weight over the course of the study. T his study underscores th at lifestyle intervention is highly effective at reducing the risk of developing type 2 diabetes for patients at risk for developi ng this disease. Prevalence of Type 2 Diabetes As of 20 1 1 1 2.6 % of African Americans, 1 1.8 % of Latinos, 8.4 % of Asian Americans, and 7.1 % of non Hispanic Whites had a diagnosis of type 2 diabetes. African Americans are 1.8 2.0 times as likely to be diagnosed with type 2 diabetes compared to non Hispanic Whites (NIH, 2006 ; CDC, 2010 ). In total, 25.8 million people or 8.3 % of the U.S. population have type 2 diabetes and many more unknowingly have the disease and thus remain undiagnosed ( ADA,
29 2011 ). Specifically, it is estimated that seven million Americans have undiagnosed type 2 diabetes and 79 million Americans meet the classification for pre diabetes based on fasting glucose and HbA1C levels (ADA, 2011). T ype 2 diabetes accounts for 90 95% of all diabetes diagnoses, with the remaining percentage comprised of type 1 and gestational diabetes (CDC, 2008). According to the American Diabetes Association, it is estimated that one third of patients with type 2 dia betes remain undiagnosed because the disease is often not detected until complications emerge and treatment is sought (ADA, 20 11 ) New growth curve estimates have projected that by the year 2050, 1 in 3 Americans will have a diagnosis of type 2 diabetes. This dramatic increase was predicted by accounting for expected higher rates of type 2 diabetes diagnoses among racial/ethnic minorities and by factoring in estimates of undiagnosed type 2 diabetes cases and increases in childhood type 2 diabetes (CDC, 201 0). In the past, African Americans had higher rates of four of the most serious complications of type 2 diabetes which are heart disease, peripheral blindness, lower extremity amputations, and kidney failure (CDC, 2007). However, in recent years these statistics seem to have shifted in that the disparities related to type 2 diabetes complications are tied more closely to socio economic status especially neighborhood SES and surrounding resources, rather than racial/ethnic minority status (e.g., Dubowitz et al., 2008 ). Cost of Type 2 Diabetes In 2007, type 2 diabetes cost the nation $174 billion with an estimated $116 billion of this amount for the direct costs of treatment, and $58 billion of this cost for the indirect costs of lost productivity due to the disease. On average, it is estimated that it costs an individual with type 2 diabetes $11,744 per year to manage their diabe tes (CDC, 2007), which dramatically exceeds the annual cost of care for individuals without diabetes. Those who are uninsured or underinsured
30 have limited access to ongoing primary care and preventative health care. Lack of preventative and primary care is associated with increased risk of hospitalization, need for specialty care, and complications which create additional costs associated with treating type 2 diabetes (Philis Tsimikas et al., 2004). Unfortunately, 15% of people with type 2 diabetes reported delaying or avoiding medical care that was needed due to the cost of this care (CDC, 2007). The Role of Socioeconomic Status in Health Disparities Socioeconomic status (SES) has increasingly come into focus as a predictor of health disparities especially with type 2 diabetes Socioeconomic status is described as a measure of includes income, health insurance, and neighborhood SES (the environment and resources surrounding the person). SES accounts for many differences in disease prevalence, health outcomes, and access to health promoting resources such as parks, healthy food stores, etc. (Geraghty et al., 2010; Dubowitz et al., 2008; & Escarce, 2008). Limited access to health care, a socioeconomic indicator, is associated with poorer diabetes control (Rubin et al., 2006). Lower level of education, another socioeconomic status indicator, is often associated with unhealthy behaviors such as smoking, consu mption of sugar sweetened beverages, sedentary lifestyle and lower levels of engagement in health promoting behaviors (Schulze, Manson, & Ludwig, 2004). Some studies have shown that lower SES is associated with increased health disparities even when contro lling for race. For example, in a longitudinal study examining insulin resistance over time in non Hispanic White and African American adolescents, it was found that parent education (a SES factor) was a stronger predictor of insulin resistance than race ( Goodman, Daniels, & Dolan, 2007). Despite the powerful influence of SES on health, there are some racial disparities in health that exist even when SES is similar across racial/ethnic groups, such as
3 1 higher rates of hypertension among African Americans (Of fice of Minority Health, 2010). However, SES is increasingly being recognized as a contributor to health disparities for all racial/ethnic groups. Type 2 Diabetes and Hypertension: Two Major and Related Health Disparities Hypertension, the most common comorbid disease and complication of type 2 diabetes, also disproportionately affects non Hispanic White and racial/ethnic minorities from low income households and is occurring at increasingly high rates among all Americans (Bryant et al 2010; Okosun, G lodener, & Dever, 2003). Hypertension can exist independent of type 2 diabetes, meaning that simply because one has ty pe 2 diabetes does not mean the person will also have hypertension and vice versa. However, since both of these chronic diseases have simi lar underlying causal risk factors, mainly stress, obesity, and having an unhealthy lifestyle they often coexist. According to the ADA, 75% of adults with type 2 diabetes had blood pressure greater than 130/80 mmHg also known as pre hypertension, or took prescription medication for blood pressure (ADA, 2007). Although not as severe as hypertension, pre hypertension still has many negative health risk factors. In order to be diagnosed with hypertension, one must have a blood pressure of 140/90 or h igher. Sixty seven percent of people with type 2 diabetes meet this classification (ADA, 20 11 ). Although there are not race specific statistics o n the rate of hypertension among African Americans with type 2 diabetes, African Americans consistently have hi gher rates of hypertension in non diabetic samples. Specifically, 40% of African Americans have hypertension compar ed to 25% of non Hispanic Whites, and as mentioned previously 13% of African American s have type 2 diabetes (CDC, 2010). One explanation for differences in the prevalence of hypertension by race is salt sensitivity. S odium has a unique role
32 in regulating blood pressure for African American s but not for non Hispanic Whites. There is a connection between salt sensitivity and insulin resistance and research has shown that in young, healthy African Americans greater salt sensitivity is associated with blood glucose regulation (Faulkner, 2003). H ypertension among people with type 2 diabetes is associated with more severe macro and micro vascular diabetic complications, such as stroke, coronary artery disease, neuropathy, retinopathy and renal disease ( ADA, 2007 ; ADA 2010 ). Diabetic neuropathy and retinopathy are two conditions that potentially lead to amputations and blindness, respectively. Neu ropathy occurs when blood pressure is consistently high and blood flow becomes limited to certain regions of the body ; with this condition circulation becomes poorer and there is an increased likelihood of sores wounds, infection, and tissue death on the extremities Past research has found a higher risk of retinopathy (blindness) among African Americans with type 2 diabetes compared to non Hispanic Whites (Harris, Klein, Cowie, Rowland, & Byrd Holt, 1998). High blood pressure and lower rates of eye exami nations are potential causes of this disparity (Office of Minority Health, 2010). Across all racial/ethnic groups people with type 2 diabetes from low income households are more likely to experience the complications of diabetes due to poorer management of both blood pressure and blood glucose levels and lack of access to health care and specialist care that promote effective management of type 2 diabetes. Currently, African Americans are 1.5 times as likely as other racial/ethnic groups to be hospitaliz ed for type 2 diabetes complications (Office of Minority Health, 2010). Underlying Risk Factor s for both Type 2 Diabetes and Hypertension There are a number of risk factors underlying type 2 diabetes and hypertension including e ducation level racial/ethnic minority status, neighborhood SES, family history, age, geographic
33 region, and health behaviors. There are also modifiable risk factors that emerge repeatedly in the type 2 diabetes literature including ob esity and stress Obesity as an Und erlying Risk Factor Obesity is an underlying risk factor that puts one at risk for developing both type 2 diabetes and hypertension and is generally caused by unhealthy behaviors, such as a sedentary lifestyle and a diet high in saturated fat, sodium, and sugar. Obesity accounts for 55% of the variance in type 2 diabetes cases and is repeatedly identified as the leading culprit for developing type 2 diabetes (CDC, 200 7 ). Lifestyle behaviors that lead to obesity are often learned at a young age, may be tied to cultural and familial traditions, and can be difficult to change. Limited access to resources that protect individuals from becoming obese such as access to natural food stores and parks and recreation, is undoubtedly tied to socioeconomic status (Barrera et al., 2008). Rates of obesity are exponentially higher among b oth minority and majority individuals from low income households (Vines et al., 2007). N on Hispanic W hite s and African Americans from low income households who experience increased stressors may use eating as a form of coping. A very recent study b y Jackson, Knight, and Rafferty (2010) examined the role of unhealthy behaviors, such as overeating, in physi cal and mental health disparities. Comparing non Hispanic White and African American participants, the authors found that for both racial groups unhealthy behaviors (drinking alcohol, smoking, and overeating) were associated with increased risk for develop ing chronic health conditions. However, a surprising result emerged when looking at the role of unhealthy behaviors in mental health disparities. For African American women participants only, unhealthy eating ( over eating for comfort) had a buffering effect between stress and developing major depression suggesting that overeating was protective at preventing depression for these
34 participants (Jackson et al., 2010). Research has also demonstrated that increased BMI (body mass index) has differential effects on self esteem for non Hispanic White s compared to African Americans, with higher BMI associated with higher reported self esteem for African Americans and lower reported self esteem for non Hispanic White s (Molloy & Herzberger, 2004). Regardless, higher B MI poses negative physical health risks for both groups and contributes to the development of type 2 diabetes Higher waist to hip ratios, which is indicative of obesity, has been correlated with low socioeconomic status, smoking, lower education, and less physical activity among African American women (Vines et al., 2007). These same risk factors overlap and contribute to type 2 diabetes and hypertension. Obesity is also a risk factor for type 2 diabetes and hypertension because it interferes with health p romoting behaviors that one can engage in to prevent or reverse these diseases such as exercise. T hus many health interventions for type 2 diabetes and hypertension include a weight loss component ( e.g., Mayer Davis et al., 2004 ). Stress as an Underlying Risk Factor P ersons from lower SES groups are at risk for experiencing increased levels of chronic and decreased access to health promoting and stress reducing activities/facilities ( Rohm Young et al., 2004). Stress has been proposed as a contributor to health disparities because majority and minority persons from low er SES groups report a higher incide nce of chro nic stress compared to persons in higher SES groups (Kim, Bursac, DiLillo, White, & West, 2009; Clark, Anderson, Clark, & Williams, 1999) and because stress is a health risk factor directly associated with the development of health conditions ( R ahman, Hu, McNeely, Rahman, & Krieger, 2008 )
35 R acial/ethnic minority persons from lower SES groups experience additional stressors beyond those experienced by non Hispanic White s from lower SES groups due to the additional stress of racism and oppression (Thomas & Gonzalez Prendes, 2009). There is a direct link between perceptions of racism and hypertension risk for African Americans (Rahman et al., 2008). Racism related stress has been found to influence distribution of body fat in African Americans ( i.e., result in higher waist to hip ratios ) which put one at greater risk for developing type 2 diabetes and cardiovascular disease (Vines et al., 2007). There is now literature in the area of traumatic stress which explains how traumatic experience s and subsequent psychological sequela negatively impact physical health. Qureshi and colleagues (2009) did a systematic review of the physical health conditions associated with post traumatic stress disorder (PTSD), a psychiatric condition that occurs in react ion to a traumatic event. This review included veterans and a general population of Medicaid recipients. Findings for the general population suggest that PTSD is associated with increased risk for developing arthritis, asthma, type 2 diabetes, eczema, and ulcers. Associations were not noted for heart diseases or thyroid functioning (Qureshi, Pyne, Magruder, Schulz, & Kunik, 2009) Howe ver, another study did find evidence of a link between PTSD and hypertension, stroke, and type 2 diabetes ( Lauterbach,Vora & Rakow, 2005 ). A fascinating study by Smith and colleagues (2010) examined perceptions of stress and history of tra uma in relationship to mental and physical health for two groups, women with fi bromyalgia and women who served as healthy controls. Fibromy algia is a chronic rheumatologic health condition characterized by fatigue, pain, depression, and anxiety. The underlying causes of fibromyalgia are not completely known, but there is a higher incidence of reported stressful life events including child ab use, in people with this health condition. For this
36 study, women in both groups completed self report measures on the variables of interest Results yielded that perceived stress was negatively associated with both physical and mental health for the fibrom yalgia group and not for the healthy control group Interestingly, having experienced a traumatic event was associated with negative mental and physical health only for the women in the fibromyalgia group and not for women in the healthy control group who had experienced trauma. Perceived stress was found to be a partial mediating factor between trauma history and mental and physical health for women with fibromyalgia. P erhaps traumatic stress has more serious consequences in women who have preexisting chro nic health conditions. It is important to understand how stress affects health both in terms of the actual physiological consequences of stress the psychological impact of stress, and the impact that stress has on engaging in health promoting behaviors. Numerous theories have offered through which stress leads to chronic illness (Geronimus, 2001; McEwan, 1998). According to the weathering theory prop osed by Geronimus, people from underserved/underrepresented groups experience stressors such as oppression and limited access to resources which in combination decrease access to protective resou rces and increase the likelihood of developing stress related illnesses (2001). Allostatic load theory developed by McEwan suggests that chronic stress results in reduced immune functioning which leads to physical illness (1998). Lastly, there are models explaining the link between stress and chronic health conditions that are specific to racial/ethnic minority groups. For i Black W American women have coped with hardship ways that have enabled the se women to overcome
37 obstacles but also ha ve detrimental psychological and physical health consequences (Lekan, 2009; Thomas & Gonzalez Prendes, 2009). The biopsychosocial model, which posits that biological, psychological (thoughts, emotions, behaviors), and social factors, each significantly contribute to human functioning in the context of disease and illness, has also be en used to explain how racism related stress negatively affects the physica l health of African Americans (Engel, 1977; Clark et al., 1999). Indeed, when a person is faced with social, environmental, and /or biological challenges, th is may lead to the development of a chronic illness such as type 2 d iabetes American Diabetes Assoc iation Standards of Medical Care in Diabetes In 2007, t h e American Diabetes Association set forth standards of medical care for diabetes that included specific guidelines for adhering to various aspects of type 2 diabetes management. The primary areas of diabetes management covered in th ese guidelines include : (a) the initial evaluation; (b) developing a plan for diabetes management; (c) assessing and monitoring glycemic control (blood glucose) ; (d) nutrition therapy (monitoring and reducing intake of suga r, carbohydrates, sodium, etc) ; (e) diabetes self management education; (f) physical activity; and (g) psychosocial assessment. Th ese guidelines also address managing blood pressure to reduce the risk of the most devastating complications from diabetes cardiovascular disease nephropathy, retinopat hy and neuropathy F or brevity, only the recommend ations for managing diabetes most relevant to the present dissert ation topic will be presented namely, controlling blood glucose level, controlling blood pres sure eating a healthy diet, and engaging in physi cal activity The first guideline, controlling blood glucose level encompasses the following: 1) self monitor ing levels of blood glucose daily; 2) hav ing Hb A1 C tested as recommended; and 3)
38 striv ing for recommended blood glucose goal s It is recommend ed that p atient s with type 2 diabetes self monitor their blood glucose level 3 4 times each day, even in circumstances where they are using diet or oral medication instead of insulin to manage their diabe tes. Checking blood glucose levels this frequently enables people with type 2 diabetes to have a clearer understanding of fluctuations in these levels and gives them the opportunity to remedy glucose levels by self administering medication when readings ar e out of the recommended range. With regard to Hb A1C, it is recommended that patients have their Hb A1C level tested at a minimum of twice annually. This test provides an average measurement of blood glucose levels over the previous 2 3 months and can be u sed in conjunction with readings from self monitoring blood glucose. Lastly, the recommended blood glucose goal for p atients with type 2 diabetes is an HbA1C measurement of less than 7 %. The ADA Guidelines were revised in 2009 to use the HbA1C measurement to test for diabetes as well which made testing and diagnosing more convenient The following measurement parameters are used: 5% or less indicates absence of diabetes, 5.7 6.4% indicates pre diabetes, and 6.5% or higher indicates the presence of diabet es (ADA, 2009). This change in the guidelines was intended to identify more cases of diabetes in people without symptoms because the test is very quick and easy and does not require fasting. The ADA Standards also recommended that p atients with type 2 dia betes regularly monitor their blood pressure and maintain a reading of less than 130/80 mmHg the clinical benchmark for pre hypertension cardiovascular disease (heart disease or stroke) among persons w ith type 2 diabetes by 33% to 50%, and the risk of microvascular complications (eye, kidney, and nerve diseases) by
39 approximately 33%. It is estimated that for every 10 mm Hg reduction in systolic blood pressure the risk for any complication related to type 2 diabetes is reduced by 12% (ADA, 200 7 ) The nutrition related guidelines established in the ADA Standards for managing diabetes include the specific recommendation that patients with type 2 diabetes strive for modest weight loss if th ey are obese or overweight, and participate in a structured program geared toward promoting needed diabetes related knowledge weight loss, and physical activity. In addition, the guidelines indicate that patients should limit saturated fat intake to less than 7% of t he total calories they consume and reduce trans saturated fat in their diet. Patients with type 2 diabetes are also encouraged to monito r and reduce their intake of carbohydrates sugars, and alcohol. Reduction of sodium is also encouraged particularly in patients with concomitant hypertension. The guidelines regarding managing diabetes also include a focus on physical activity. Physical activity is important because it assist s with weight loss and weight management and help s patients ac hieve greater blood glucose control Physical activity ha s these effects possibly because it regulates physiologi cal functioning and metabolism and possibly because of its stress reducing benefits It is recommended that patients with diabetes engage in 150 minutes of moderate intensity physical activity per week (ADA, 2007). Patient Adherence to the American Diabetes Association Standards As of 2004, o nly 7.3% of adults with type 2 dia be tes had met the recomm ended goals regarding levels of blood glucose, blood press ure and cholesterol The recommended blood glucose ( Hb A1C ) was only met by 37% of individuals examined and by a mere 17% of African Americans examined at that time (Saydah, Fradkin, & Cowie, 2004). Twenty percent of people with type 2 diabetes report never testing their blood glucose levels (Beckles et al., 1998 ). In fact, m ost patients do not even purchase enough supplies to test their blood glucose the recommended
40 3 4 times daily A study by Adams and colleagues (2003) using da ta from a large HMO revealed that the most vulnerable patients at risk for poorer health outcomes are the ones with the greatest barriers to self monitoring blood glucose. T he factors that were found to predict lower levels of self monitoring of blood gluc ose included living in a lower socioeconomic neighborhood, older ag e, African American racial status poor blood glucose control, and fewer HbA1C tests and doctor visits over ti me This study was also the first to examine if providing blood glucose self monitoring materials at no cost impacted this particular beha vior. Significant changes in self monitoring of blood glucose were not observed for participants who were provided self monitoring materials at no cost compared to those who we re not provided free materials suggesting that cost of materials may not be a significant barrier in diabetes self management of blood glucose (Adams et al., 2003). One possible explanation for the lack of observed behavior change after providing free mate rials for self monitoring blood glucose i s that other barriers associated with having limited financial resources, such as a lack of transportation or being too busy to self monitor because of working long hours may interfere with blood glucose self manag ement. A recent m eta analysis found that out of 17 chronic diseases, type 2 diabetes had the second lowest rating of treatment adherence only surpassed by sleep disorders (DiMatteo, 2004) A survey of over 2,000 patients with type 2 diabetes found that patients rated diet, then exercise, then blood glucose monitoring as the most challenging aspects of diabetes management, respectively (Glasgow, Hampson, Strycker, & Ruggiero, 1997 ). In a recent diabetes intervention study with low income minor ities, participants reported transportation, cost, and availability of healthy foods as barriers to engaging in healthier dietary behaviors (Metghalchi et al., 2007). Repeatedly, it has been found that the most common barriers identified
41 for diabetes manag ement are in the areas of lifestyle intervention such as exercise, diet, self monitoring of blood glucose and stress management T hese aspects of diabetes self management are more arduous for patients compared to medication adherence which requires less patient engagement in health promoting behaviors (Glasgow, Toobert, & Gillette, 2001). I t is cumbersome to provide an accurate estimate of the percentage of patients consistently adhering to the recommended nutrition and physical activity gu idelines set forth in the ADA Standards b ut the aforementioned findings are not promising T he ADA standard s are indeed useful for helping patients understand the ideal health targets for effectively manag ing their diabetes and redu c ing the risk of common ly associated complications It is imperative that patients have a bridge between cog nitively knowing the ADA s tandards and emotionally and behaviorally taking the steps to achieve and adhere to them The bridge that helps patients connect knowledge with taking action is lifestyle interventions that educate patients, empower them to overcome barriers, establish individualized health goals, and develop motivation to consistently engage in health promoting behaviors. Health Promoting Behaviors and Type 2 Diabetes and Hypertension: Diet, Physical Activity, and Stress Management As previously mentioned, h ealth promoting behaviors have the potential to reverse the symptoms of type 2 diabetes delay the onset of complications, and in some cases prevent the disease altogether. Health promoting behavior changes have produced positive health outcomes among culturally diverse patients with type 2 diabetes from low income households and have thus become a major focus of intervention s with such patients (Barrera, Stryker, MacKinnon, & Toobert, 2008) Health promoting behaviors have been successful at enabling patients with type 2 diabetes to lose weight, reduce blood pressure and perceived stress, a nd regulate blood glucose
42 Adhering to dietary standards engaging in physical activity and stress management are t he health promoting behaviors that are most frequently targeted in type 2 diabetes interventions. Empowerment focused interventions can be used to encourage patients with type 2 diabetes to modify unhealthy behaviors and adopt a healthier lifestyle over time. Empowerment is a psychological shift that reduces feelings of powerlessness and increases perceived control F or patients with type 2 diabetes empowerment can help patients take a more active role in health promoting behaviors It is important to have a clear understanding of health behaviors that are socially and culturally normative that may be interfering with diabetes and hypertension management prior to applying the intervention. It may be useful to reframe healthy behaviors in a culturally appropriate manner, such as emphasizing healthy eating and exercise as a way of demonstrating love for family members, as an expression of self care, and/ or as a way of improving quality of life Major health organizations are now advocating for health to be a affair for African Americans where discussions about preventing type 2 diabetes and hypertension occur (Office of Minority Health, 2010). Promoting the selection of recipes and activities that are culturally relevant is also culturally appropriate Yet, p eople are more likely to maintain healthy behavior changes when motivation for these behaviors is intrinsic (Scisney Matlock et al., 200 9 ). Thus, it is important to encourage patients to identify culturally relevant reasons for living healthier that have personal meaning for them. Another key challenge w hen implementing health promoting interventions for patients with type 2 diabetes an d/or hypertension is to promote h ealth behavior changes that are sustainable over time D iet as a Health Promoting Behavior
43 People who eat an unhealthy diet high in saturated fats, processed foods and sugar sweetened beverages and low in vegetables and fruits increase their likelihood of becoming overweight and/or obese and developing type 2 diabetes and other chronic health conditions. lipoprotein profile and blood glucose levels and reduce blood pressure (Kelley, 1995). Recent efforts to reduce and/or reverse type 2 diabetes and its cardiovascular complications have focused on encouraging increased consumption of fruits and vegetables, especially green, leafy vegetables hig h in nutrients Dubowitz et al. (2008) examined differences in dietary behaviors based on neighborhood socioeconomic status (SES) among non Hispanic White s and African Americans. Neighborhood SES was found to significantly influence vegetable and fruit int ake. Notable baseline differences in vegetable and fruit intake were observed between non Hispanic White s and African Americans regardless of SES. Interestingly, the authors found that when they examined racial differences in fruit and vegetable intake bet ween non Hispanic White s and African Americans, SES accounted for 50% of the observed differences. In higher SES groups African Americans consumed similar levels of fruits, but significantly less vegetables than non Hispanic White s in the equivalent ly high SES group. A nother study examined the association of consuming sugar sweetened beverages with developing type 2 diabetes The authors used questionnaires to examine consumption patterns of sugar sweetened beverages over a six year period among a lar ge database o f African American women participants (n=43,960) that was collected by researchers at Howard University. Sugar sweetened soft drinks and sugar sweetened juices were both assessed in the study because people often mistakenly think juices are he althy even though they have similarly high sugar content to
44 soda. Findings indicate that consumption of sugar sweetened sodas and sugar sweetened juices were both associated with increased risk of developing type 2 diabetes. Women who consumed two or more soft drinks daily had a 24% increase in incidence of developing type 2 diabetes compared to women who consumed less than one soft drink per month. Similarly, women who consumed two or more sugar sweetened juices daily had a 31% increase in incidence of dev eloping type 2 diabetes compared to women who consumed less than one sugar sweetened juice per month. Consumption of diet soda, orange juice, and grapefruit juice was not associated with developing type 2 diabetes. Results from this study also suggest that consumption of sugar sweetened soft drinks was positively associated with BMI, cigarette smoking, higher blood glucose levels, and intake of red meats and processed meats. Drinking soft drinks was negatively correlated with years of education and physical activity. However, consumption of sugar sweetened juices was not correlated with BMI or education but was positively correlated with physical activity and having a low blood glucose index. One of the health promoting behaviors advocated for in Healthy People 2020 and most health promotion interventions for patients with type 2 diabetes is limiting sugar sweetened beverages and soda. Pawlak and Colby (2009) conducted a study examining the barriers and benefits of eating healthy foods among African Ameri cans living in North Carolina, an area that has high rates of obesity, type 2 diabetes, and hypertension. The authors found that participants reported few barriers, other than the cost of purchasing healthy foods and vegetables, and reported high evaluatio ns of the intrinsic benefits of eating healthy foods. Yet, despite these self reports, participants consumed much lower amounts of healthy foods and veg etables than the recommended portion
45 A cculturation, religiosity, and traditional values in African Ame ricans are associated with higher intake of saturated fat and lower intake of vegetables and fruits (Ard et al., 2005). Food preferences have also have been found to vary by region of the country (i.e., South versus North rural versus urban) and by socioe conomic status (Cramer et al., 2007). C ulturally sensitive health interventions are needed to effectively address cultural influences that contribute to unhealthy dietary behaviors among patients with type 2 diabetes and hypertension. Physical Activ ity as a Health Promoting Behavior Physical activity is undoubtedly important for diabet es self management It is the keystone of many lifestyle interventions for patients with type 2 diabetes. Yet, the role of physical activity in diabetes self management has been understudied Often times, barriers to engag ing in physical activity exist at the social ecological level in addition to at the individual level For example, a person with type 2 diabetes may understand the benefits of physical activity and ma y be motivated to engage in physical activity, but does not engage in physical activity because of not having access to safe walking trails, bike routes, and other physical activity resources Studies are beginning to look at whether resources, such as social support, access to restaurants that serve healthier food options, shopping, and access to affordable gyms and parks are linked to engagement in physical activity and other health promoting behaviors (Barrera et al., 2008). Most st udies examining physical activity interventions for patients with type 2 diabetes recommend that patients exercise three times weekly, ideally every other day (Sigal, Kenny, Wasserman, Castaneda Sceppa, & White, 2006) in order to achieve the 150 minutes of physical activity weekly that are recommend ed by the ADA s tandards This recommendation differs from
46 moderate physical activity most days of the week. The rationale for this adjustment is that one single episode of aerobic exercise has been found to have a positiv e impact on glucose sensitivity for up to 72 hours (Walberg Henriksson, Rincon, & Zierath, 1998) and it is generally more convenient and easier to adhere to physical activity regimens that are larger blocks of time fewer times a week. There are several s tudies that have addressed t he role of physical activity in managing type 2 diabetes. The first study is the landmark study comparing metformin to a life style intervention This study found that the lifestyle intervention was more effective at preventing t he onset of type 2 diabetes in a high risk population compared to the prescription drug me tformin which is a commonly prescribed drug to regulate/prevent type 2 diabetes (Knowler et al., 2002 ). What is notable about this study is that physical activity and die tary modifications were exclusively the focus of the lifestyle intervention. Many interventions add numerous psychosocial and behavioral components that make it difficult to interpret the most salient aspects of the interventions that contributed to changes in health outcom es. The simplistic design of this study required participants to engage in at least 150 minutes of moderate to intense physical activity weekly and to reduce their weight by 7% The tested lifestyle intervention resulted in a 58% r eduction in the onset of type 2 diabetes for people with glucose sensitivity (i.e., borderline diabetes) It is not clear whether dietary changes or physical activity contributed equally to the observed changes but the results of th is study provide a comp elling argument for the potential importance of physical activity in preventing and managing type 2 diabetes A second study included both diet and physical activity in a diabetes lifestyle intervention program In this study the authors created three dis tinct conditions 1) one that focused on
47 eating a healthy diet 2) one that focused on engaging in physical activity, and 3) one that focused on a combination of both of these health promoting behaviors. The authors of this study found that the combined intervention (diet plus physical activity) and the conditions of physical activity alone and diet alone were all equally effective in preventing the onset of type 2 diabetes in people with impaire d glucose intolerance that generally leads to diabetes (Pan et al., 1997). These findings indicate that physical activity alone may be powerful enough to prevent and even reverse the effects of type 2 diabetes. Lastly, Barrera and colleagues examined the effectiveness of the Mediterranean Lifestyle Program (MLP) on producing changes in physical activity and dietary behaviors among postmenopausal women with type 2 diabetes who were recruited from primary care clin ics. The intervention was structured so that participants would initially participate in a 3 day retreat followed by 6 months of weekly meetings that included a healthy potluck dinner, one hour of physical activity, and one hour of stress management as par t of a support group. These authors were interested in understanding how social and ecological resources, including social support family and friends, and neighborhood resources, might influence diabetes self management behaviors. healthy, low with adequate social ecological resources engagement in physical activity and diet were sust ained for at least 6 months post intervention. Stress Management as a Health Promoting Behavior The A merican D iabetes A ssociation advocates for stress and depression management in the psychosocial aspect of their standards of medical care for diabetes (ADA, 2007). Stress management is also a critical component of patient centered culturally sensitive health care
48 because lower levels of perceived stress are associated with increased treatment adherence and increased engagement in a health promo ting lifestyle (Tucker et al., 2007). In fact, numerous type 2 diabetes interventions have begun to incorporate a stress management and/or stress reduction component to aid in maintaining a healthy lifestyle. In patients with type 2 diabetes, higher levels of reported stress are positively correlated with fewer years of education, higher rates of depression and negative affect, higher rates of obesity and hypertension, and poorer metabolic control of blood glucose (Kim et al., 2009; Garay Sevilla et al., 20 00; Trovato et al, 2006). Both stress and depression are predictors of poorer self management behaviors for patients with type 2 diabetes, and they specifically interfere in the areas of diet and physical activity adherence (Gonzalez et al., 2008). The fac t that stress interferes with engagement in health promoting behaviors that are protective factor s for preventing and reversing type 2 diabetes and hypertension is profound. This fact emphasizes the importance of including stress management components and measuring stress in lifestyle intervention health promotion studies. Clearly stress is a powerful predictor of engagement in health promoting behaviors and h ealth outcomes in minority populations and non Hispanic White s from low income backgrounds ( Gonzalez et al., 2008; Tucker et al., 2010). Intervention studies that have included a stress management component in diabetes lifestyle interventions have generated positive results. For example one study examined stress management administered in the form of group counseling individual counseling for stress management is often time consuming and demanding in terms of resources. The authors designed two 5 session diabetes education program s one with and one without str ess managem en t for patients with type 2 diabetes The patients randomly assigned to the stress management condition received training in progressive muscle relaxation, deep
49 breathing, and cognitive behavioral skills to reduce stress. Although the intervent ion was time limited, participants were encouraged to continue stress reduction strategies on a daily basis. P articipants who received the stress management as part of the diabetes education intervention w ere found to have more improve d blood glucose contr ol one year following the intervention compared to participants in the intervention condition without stress management who demonstrated improvement following the intervention but not at the one year follow up (Surwit et al., 2002). A fascinating church based study that looked at coping styles among older African American women with type 2 diabetes found that a whether it is emotive, passive or acti ve can also influence diabetes self management Co ping i nvolves the cogni tive and behavioral efforts used to manage internal and external demands that are considered taxing and exceed the resources of the individual (Samuel Hodge, Watkins, Rowell, & Hooten, 2008). Essentially, coping is how a person responds to stress. Three ty pes o f coping were measured: emotive (characterized by worrying, crying, becoming angry), passive (characterized by learning to accept), and active (characterized by taking action or making plans to take action). Th e above mentioned study found that older and less educated participants relied more frequently on passive coping. Results indicated that active and emotive types of coping were most advantageous for diabetes self management. Specific ally, the author s found that active copi ng led to better outcomes in dietary adherence, but did not predict physical activity adherence. Emotive coping and church involvement predicted more positive m ental health among participants, whereas a ctive coping was associated with negative mental healt h. Passive coping did not have a significant effect on outcomes in any of the areas measured (Samuel
50 Hodge et al., 2008) These findings suggest that having an array of coping strategies as well as supportive resources such as church and spiritual/religiou s resources to draw from may be beneficial for patients in managing their type 2 diabetes. Patient Empowerment and Type 2 Diabetes Patient health empowerment is de scribed as the process of enabling patients to take greater control of their health. E mpowerment is a critical component of type 2 diabetes management given the high level of patient engagement required in the daily management of the disease and health promoting behaviors Specifically, i n order to effectively manage type 2 diabetes patien ts are required to monitor their blood glucose levels daily monitor their blood pressure, take insulin either orally or by injection, maintain a careful diet and consistently engage in physical activity. Empowerment theories, such as Health Self Empowerm ent (HSE) Theory, suggest that in order for patients to feel capable of managing their disease, they need to feel motivated, experience control, have a sense of responsibility for their health, and use self praise and coping to maintain engagement in healt h promoting behaviors (Tucker, Butler, Loyuk, Desmond, & Surrency, 2009). New challenges arise when patients do not feel capable of managing their empowerment/ control over their diabe tes. Empowerment is also the cornerstone of the PC CSHC Model that is the foundation of this study. When patients experience patient centered culturally sensitive health PC CSHC Model) and this contributes to reductions in stress and increased engagement in health
51 promoting behaviors, such as eating healthy, exercising and adhering to type 2 diabetes treatment guidelines. The self care necessary for effective type 2 diab etes management calls for a paradigm shift from tertiary, acute health care interventions (i.e. responding to a hyp er glycemic episode) to preventative health care and models that are health promoting and produce lasting behavior changes. Thus, empowerment based interventions and approaches that enable patients with type 2 diabetes to gain knowledge of their disease and to take control over their diet and physical activity level seem needed in order for these patients to achieve the benchmarks established by the A merican D iabetes A ssociation Standards for effective type 2 diabetes management. Models of Patient Empowerment used in Previous Diabetes Interventions C omprehensive models of empowerment that highlight how empowerment of patient s can lead to effective manag ement of type 2 diabetes and hypertension have been proposed. Three specific comprehensive patient empowerment models that have been used with underserved populations with type 2 diabetes are discussed in the following s ection the Chronic C are Model, the Ecological Model of Behavior Change and the REACH Model In addition to describing each model, findings from research interventions that used that particular model will be discussed. Each of these models suppor ts the rationale of using empowerment based models/ theories to inform type 2 diabetes interventions. Chronic Care Model The Chronic Care Model (CCM) is a multifaceted diabetes care approach that is prevention focused. The CCM focuses on patient education a bout diabetes management, patient support, and empowering patients to self manage their diabetes by understanding and monitoring their lab readings. Most importantly, the CCM empowers patients within the context of their
52 interactions with the health care s ystem. It is not merely focused on empowering the individual ; rather it is focused on empowering patients to interact effectively with the health care system and providers. Having skills for effectively interacting with the health care system is important for encouraging health promotion and lifestyle changes among patients with type 2 diabetes because th ese patients will (1) have multiple encounters with the health care system as part of their diabetes management; and (2) will work collaboratively with the ir provider in decision making and managing their diabetes (Scisney Matlock et al., 2009). Piatt and colleagues (2006) tested the effects of a Chronic Care M odel (CCM) based intervention on clinical and behavioral outcomes of underserved primary care midd le aged adults with type 2 diabetes who live in rural Pennsylvania. Patient participants were randomly assigned to either the CCM condition, a provider education condition, or the usual care condition. Data collected 12 months following the 6 month interve ntion showed that patients in the CCM condition demonstrated declines in HbA1C and cholesterol levels and that these changes were not observed in the other two conditions. Patients in the CCM group reported higher diabetes related knowledge scores and empo werment scores on measures of these variables compared to the patients assigned to the other two conditions Ecological Model of Behavior Change The Ecological Model of Behavior Change has also been used as a basis for behavioral interventions for persons the primary focus of therapeutic lifestyle changes in the center of the model and acknowledges that other factors (e.g. family and peer networks, health systems/ organizations, community an d ( Scisney Matlock et al., 2009; p. 6). Similar to the CCM
53 framework, the Ecological Model approaches diabetes care from th e perspect ive that numerous motivators, barriers, health. Both CCM and the Eco logical Model present support for empowerment oriented health interventions and address a variety of motivators and barriers that patients may experience with regard to thei r health. The E cological M odel strive s to empower patients to develop intrinsic motivation for their health. For example, a self e s a more empowered, intrinsically motivated patient. The REACH Model The REACH Model an acronym for racial and ethnic approaches to community health, was designed by the Centers for Disease Control and Prevention to eliminate and reduce health disparities in six areas that commonly affect minorities two of them being type 2 diabetes and cardiovascular d isease /hypertension The REACH Model is an empowerment model that uses a community based participatory approach to reduce unhealthy behaviors and complications of mana gement understanding, self 2005, p. 1553). This Model trains residents of the community to deliver healthy lifestyle interventions in lower income and ethnically diverse a reas. Community members ar e involved in the planning and race/ethnic specific materials are used that are considered culturally and linguist ically appropriate and that fit the needs of the area and population being served. There is a strong emphasis on providing knowledge about be haviors that improve health and blood glucose control because community members may not have access to regular health care visits
54 where they might otherwise obtain this knowledge. This model is geared toward individual and community empowerment rather than a systemic approach that involves the health care system. The REACH Model has been tested nationally. The Detroit study conducted by Two Feathers and colleagues included 111 Latino (36%) and African American (64%) community participants with type 2 diabe tes from low income households. Baseline differences were observed between the two groups with African Americans having an average higher body mass index and lower HbA1C level. Consistent with the Model, a culturally tailored curriculum was administered to participants by community members trained in patient empowerment. The intervention consisted of five two hour group meetings focused on topics including diet and exercise, stress reduction, and diabetes self care. Following the intervention a statisticall y significant proportion of both African Americans and Latinos moved from the >7% HbA1C category to the <7% HbA1C category (this represents a shift in diabetes classification from diabetes to pre diabetes) and both groups demonstrated increased knowledge in the areas of diet and physical activity. Whether increased knowledge mapped onto actual behavior changes in diet and physical activity was not tested. No changes were observed in blood pressure, cholesterol, or weight in this particular study Use of Te chnology to Promote Patient Empowerment Although not a specific model of empowerment per se technology based interventions are increasingly being used to empower patients to be more active in their health care. Barnes and colleagues (2006) designed an intervention utilizing informatics to provide patients with a argue that although patient education increases knowledge and self monitoring of blood gluco se and blood pressure, these programs are inadequate at producing changes in health outcomes.
55 There is a need for more empowerment oriented programs that enable patients to overcome barriers such as lack of confidence, motivation, goal setting, and engagin g in behaviors necessary to produce changes in health outcomes. Memorial Hospital in Atlanta and was designed to provide interactive feedback to patients using technology so t hey have knowledge of their blood pressure, blood glucose, appointments, and intervention makes patients have an active role in their health management. They a lso have a better understanding of their health using this technology. The P atient P rovider Relationship and Type 2 Diabetes The patient provider relationship has been researched with regard to its effects on patient outcomes and is undoubtedly an important influence in promoting treatment adherence (Ciechanowski et al., 2004), posit ive health outcomes diabetes self management (Rubin, Peyrot, (Tucker et al., 200 3). S tudies have examined the effect of the patient provider relationship on diabetes self management and health outcomes and these studies have yielded encouraging results One such study is t he DAWN (Diabetes Attitudes, Wishes, and Needs ; Rubin et al. 2006 ) Study which is an international study that examined factors in six areas of self re ported diabetes self management diabetes related distress, general wel l being, lifestyle regimen adherence, medication regimen adherence, perceived diabetes control, and blood glucose symptoms Eleven countries (including North America) and over 5,000 individuals participated
56 by completing the DAWN Study surveys. This study specifically focused on various aspects of health care to assess how they might influence the six factors of interest. The aspects of health care measured include access to health ca re, quality of the patient provider relationship, and the use of a team care approach. E xample survey question s/statements that were used to assess these aspects of health care include I have a good relationship with the people I see about Findings from the DAWN Study suggest that a number of the examined health care reporte d diabetes self mana gement Access to health care was associated with increased well being and increased diabetes control. Results regarding the influence of the team care approach were inconsistent. The most influential health care variable measured was the patient provider relationship Having a collaborative, positive patient provider relationship was associated with more favorable outcomes across all six target areas measured (Rubin et al., 2006). Patient provider communication has also been studied as an important aspect of understanding the patient provider relationship. A study by Piette, Schillinger, Potter, and Heisler examined the effectiveness of general versus disease specific communication and patient perceptions of communication among an et hnically diverse sample of veterans with type 2 diabetes (2003). The researchers were also interested in examining communication patterns of minority patients with type 2 diabetes compared to non Hispanic White patients with type 2 diabetes. Slightly over 50% of participants were non white and 18% had reported receiving less than a high school education. Three VA Hospital systems in Michigan and California were included in the study. The Interpersonal Processes of Care Questionnaire was used to assess
57 gener al communication and a diabetes specific scale was used to assess disease specific communication. There are a number of subscales on the general communication measure, including explanations of self care, emotional support, and inquiring about patient preferences. Example items measuring general communication include Example items measuring disease specific comm unication include The researchers were interested in whether general or disease specific communication was predictive of specific self care b ehaviors for patients with type 2 diabetes. The self care behaviors assessed included foot care, dietary adherence, physical activity adherence, and adherence to blood glucose recommendations. Findings suggest that the use of general and disease specific c ommunication between patient and provider were moderately correlated (r = .35). Generally, patients reported experiencing more of one type of communication in the provider patient relationship. Both types of communication were independently associated with improved self care in the four areas of diabetes self management measured. General and disease specific communication had the least association with changes in dietary adherence. Another important finding was tha t racial/ethn ic minority patients from lower SES backgrounds and patients with language barriers reported the quality and frequency of patient provider communication as equal or better to non minority patients. Specifically, African American and Hispanic participants rated experiencing both typ es of communication at higher levels compared to non Hispanic White participants ( Piette et al., 2003). More effective communication of both types leads to improved self care which could potentially improve health outcomes.
58 Lastly, a very fascinating line of research by Ciechanowski and colleagues influence the patient provider relationship and health outcomes for patients with type 2 diabetes. provider communication, and treatment adherence. Treatment adherence included monitoring blood glucose and taking medication as recommended. Based on patient attachment, three dimensions of attachment were identified secure, dismissive and fearful. Participants with a dismissive attachment style were more likely to report the patient provider communication as poorer. Both poor com munication and having a dismissive attachment style were associated with lower levels of treatment adherence in the areas of medication adherence and monitoring of blood glucose. Previou s Culturally Sensitive Interventions to Facilitate Health Promoting B ehaviors Among Adults with Type 2 Diabetes There are only a few studies that have evaluated the effectiveness of culturally sensitive or culturally tailored interventions to facilitate health promoting behaviors among patients with type 2 diabetes. One such study is a 12 month lifestyle interventi on en titled Pounds off with Empowerment (POWER) for medically underserved African American and non Hispanic White adults with type 2 diabetes living in rural areas (Mayer Davis and colleagues, 2004) The intervention was based on the Diabetes Prevention Program a structured standardized diabetes intervention established by the NIH in 2002. Specifically, the researchers took the following steps to make the intervention culturally sensitive : ( 1) the intervention materials were reduced and simplified to an understandable level appropriate for the educational level and literacy of participants; ( 2) physical activity requirements were reduced to low moderate intensity to meet the current physical ability levels of participants; and ( 3) regional and culturally appropriate
59 examples of how to prepare healthier foods ( i.e., how to prepar e grits and greens in healthier ways ) and physical activity ( easily accessible, safe parks) were used to make the in tervention more relevant to participants In the POWER study, p articipants were randomly assigned to one of three intervention groups intensive, reimbursable, or usual care. Usual care served as the control condition and the other two interventions inv olved different degrees of patient health empowerment The intervention for the intensive group (who were exposed to the higher degree of patient empowerment) was structured so that participants took part in ongoing i ndividual coaching/consultation session s, a 16 session weight loss and physical activity curriculum, and additional behavioral strategies implemented in a culturally competent manner. Each of these intervention components were geared toward empowering participants to experience greater control in managing their diabetes. Participants in the intensive group demonstrated the most change, with significant reductions in weight and improved blood glucose control compared to participants in the reimbursable and usual care groups who demonstrated changes in blood glucose control but not weight loss (Mayer Davis et al., 2004) Cramer and colleagues (2007) tested the Diabetes Prevention Program for use with lo w income African American patients living in urban areas. Their intervention which also sought to empower minorities with type 2 diabetes produced similar results to those in the previously described study by Mayer Davis and colleagues. Namely, weight lo ss and positive dietary changes were observed for participants in the intervention group who received the culturally tailored version of the program but these changes did not occur for the control participants In this intervention, similar modifications to those in the Mayer Davis study were made to make the intervention culturally sensitive such as providing culturally appropriate recipe s, written
60 materials that match the reading and educational level of participants, etc A unique modification in this study involved the use of culturally sensitive food pyramids. For example, there are Southern and Northern food pyramids, as well as food pyramids appropriate for use with African Americans or Hispanics. Using culture specific food pyramids to illustrate h ealthier diet choices helps participants identify realistic dietary goals that are complementary to traditional food s of their culture. Lastly, a study by Metghalchi et al. (2008) assessed the effects of a culturally sensitive diabetes intervention with H ispanics. The intervention was delivered weekly over a 3 month period. Sessions were conducted in Spanish with a Spanish speaking interventionist who could includin g blood glucose monitors and a log to record blood glucose. A 23% reduction in plasma glucose and an 82% reduction in HbA1C levels were reported These reductions were reported to be clinically significant. However, t his study did not include a control group. Each of the aforementioned studies demonstrate how culturally sensitive interventions can produce positive changes in health behaviors and/or outcomes. However, these studies tested interventions that were based on models that have not discussed or shown the linkage between their culturally sensitive health interventions and health promoting behaviors, treatment adherence, or hard health outcomes (e.g., blood pressure). Thus the present study tests a culturally s ensitive health empowerment intervention for patients with type 2 diabetes that is based on a model that has explained these linkage s the P atient C entered C ulturally S ensitive H ealth C are Model. The Patient Centered Culturally Sensitive Health Care (PC CSHC) Model
61 The PC CSHC Model explains the connections between a) experiences of patient centered culturally sensitive health care by low income, culturally diverse patients who are often receiving health care at community clinics and b) the health out comes and statuses of these patients (Tucker et al., 2007). The construct /definition of patient centered culturally sensitive health care which was previously defined in Chapter 1 of this dissertation is the basis of the PC CSHC Model. The PC CSHC Model explains the linkages underlying perc eived cultural ly sensitiv e health care and changes in health behaviors and health outcomes for patients The following section will include 1) examples of empirical research that contributed to the definition of patient centered culturally sensitive health care 2) q ualitative research on culturally diverse s of what constitutes culturally sensitive health care and 3 ) literature based support for the pathways of the PC CSHC Model Research that Lead to the Development of the PC CSHC Model Despite national calls for increased attention to health care that produces improved patient health outcomes among racia l/ethnic minority and non Hispanic White patients from lower SES groups t here is a dearth of research studies that have tested the relationship between cultural sensitivity of health care and patient health outcomes (Betancourt et al., 2005) Research that has attempted to examine the association of cultural sensitivity with health outcomes has be en limited by a lack of theoretical models to guide the research. As previously mentioned, there are a number of culturally sensitive interventions that have been used with patients who have a diagnosis of type 2 diabetes R esults of these studies have yielded improved health outcomes, but the mechanisms underlying these observed changes remain unknown. Knowing the specific connections between components of culturally sensitive interventions that are most critical for bringing about changes in heal th outcomes is financially
62 advantageous because many intervention programs have limited funding. Essentially, the question remaining is what are the most important aspects to include in culturally sensitive health interventions to produce desired health ou tcomes? The PC CSHC Model provides a framework for understanding the specific linkages between culturally sensitive health care and changes in health outcomes and statuses. The PC CSHC Model if supported by empirical studies, will have clear implications for developing future health interventions that teach health care providers to foster cultural sensitiv ity encourage patient health empowerment, and teach patients how to advocate for and reinforce desired provider behaviors that are culturally sensitive (Tucker et al., 2007) Link between Perceived Cultural Sensitivity and Interpersonal Control, Health Care Satisfaction, Health Promotion, and Treatment Adherence Research supporting th e relationship between interpersonal control, health care satisfaction, health promotion, and treatment adherence comes from the culturally sensitive health care and patient provider relationship literature. Early focus group studies conducted by Tucker and colleagues id entified culturally sensitive provider and health care characteristics and policies that enable racial/ethnic minority and non Hispanic White patients from low income households to experience trust, comfort, and respect in the health care they receive (Tuc ker et al., 2003) When patients report a high quality patient provider relationship where they experience trust and control in the relationship, the positive patient provider relationship has been found to influence health outcomes as well as patient satisfaction, adherence, and motivation (DiMatteo, 2004; Rubin et al., 2006). R esearch finding s from the DAWN s tudy which examined the patient provider relationship in relation to health care outcomes and adherence also support this link S pecifically higher patient reported ratings of the patient provider relationship were correlated
63 with less diabetes related distress, increased lifestyle and medication adherence, increased perceived diabetes control, and decreased blood glucose (Rubin et al., 2006) Link between Health Promotion, Treatment Adherence, and Health Outcomes Th e l ink between health promotion and health outcomes is supported by studies that have demonstrated a relationship between engaging in health promoting behaviors, such as diet and exercise, and improvements in blood pressure and blood glucose. The link between treatment adherence and health outcomes is sup ported by t he literature on the beneficial effects of treatment adherence, often medication, on health outcomes. Specifically, p revious studies have documented that diet and physical activity are effective at : 1) reducing and preventing chronic diseases su ch as type 2 diabetes hypertension and certain types of cancer ; and 2) improv ing decreas ing BMI and waist to hip circumference, regulat ing blood glucose levels, and reduc ing blood pressure ( Sigal et al., 2006; Knowler et al., 1992; Kelley, 1995). A meta analysis evaluating 63 studies on the impact of treatment adherence on health outcomes found that treatment adherence accounts for 26% of the variance in health outcomes (DiMatteo, 2002) Specifically, the result s of the aforementioned meta analysis found that t reatment adherence has the greatest impact in the management of hypertension, type 2 diabetes, and gastrointestinal diseases compared to other health conditions (DiMatteo, 2002). PC CSHC Intervention Model The PC CSHC Model was used to develop an intervention to train providers and patients in the behaviors, attitudes, and environmental characteristics and policies that foster and/or reinforce PC CSHC. The original intervention based on the PC CSHC Model ( Tucker et al., 2007) included three important components: 1) training of health care providers and office staff to engage in behaviors and attitudes that culturally diverse patients have identified as enabling
64 them to feel comfortable with, trusting of, an d respected by their health care providers and office staff, and that enable them to perceive the health care they experience as culturally sensitive; 2) modifying the physical health care environment characteristics and policies to be more culturally incl usive and inviting to diverse patients; and 3) using empowerment strategies to motivate and train patients to adopt a health promoting lifestyle and to obtain desired behaviors and attitudes from health care providers and office staff.. There is a strong need for PC CSHC interventions because the training available to physicians in the provision of PC CSHC is quite limited. In a national survey of 2,047 physicians, 96% of the participating physicians responded that they felt it was important to address cu ltural issues when providing health care; yet, 50% of the physicians in this sample reported receiving little or no training in how to address cultural issues such as religious beliefs, medical decision making, and mistrust (Weissman et al., 2005). Patient s are even less likely to be aware of the behaviors they can engage in to advocate for PC CSHC in their interactions with providers and the health care system. Centered Culturally Sensitive Health Care The PC CSHC Model was informed by qualitative research with non Hispanic White African American, and Latino primary care patients recruited from the community who participated in focus group sessions. The majority of these participants reported low househ old incomes. This qualitative research was conducted by Tucker and colleagues (2003) and sought to identify the characteristics of culturally sensitive health care from the perspective of primary care patients (Tucker et al., 2003). Approximately, 135 f oc us group participants were specifically asked to identify provider behaviors, office staff behaviors, and health care clinic characteristics that enable them to
65 experience trust, respect, and comfort in their health care. Questions used to elicit responses from trust/respect /sensitivity ) and m your racial, language, or Hundreds of statements were generated by focus group participants that captured the behaviors, characteristics, and attitudes that they deemed important for patients like themselves to perceive health care as culturally sensitive. responses fell into three distinct categories positive personal qualities, individual treatment, and technical competence. nd introduces him a number (individual treatment). There was considerable overlap (approximately 80%) in the themes across racial/ethnic groups, but there were some unique themes by racial/ethnic group. For example, Latino focus group participants identified more themes related to language barriers (Tucker et al., 2003) This valuable information and existing health care literature informed centered culturally sensitive health care and lead to the development of the PC CSHC Model. Literature Based Pathways of the PC CSHC Model The underlying assumptions of the PC CSHC Model are literature based and clarify the promoting behaviors, satisfaction with health care, and treatment adherence. Tucker et al. (2007) highlighted the s pecific link ages of the PC CSHC Mode l which include the following : (a) p rovider and health care environment characteristics can promote patient centered culturally
66 perceived levels of provider cultural sensitiv ity interpersonal control (empowerment) and satisfaction with health care, all of which promoting lifestyle and treatment adherence ; (c) interpersonal control (empowerment) and level of health care satisfa level of s t ress which also impact s promoting lifestyle and treatment adherence ; and (d) both level of treatment adherence and level of engagement in a health promoting lifestyle directly The PC CSHC Model Based Health Empowerment Intervention that will be Tested in the Present Study The present rese arch will test the impact of a Culturally Sensitive Health Empowerment I ntervention (CS HEI) based on the PC CSHC Model on the health promoting behaviors, blood glucose levels, and blood pressure levels of African American and non Hispanic White adults with type 2 diabetes from mostly low income households who will be research participants The present research extends beyond typical type 2 diabetes intervention studies which frequently do not include health outcomes, or if they do strictly focus on blood glucose. The present research will test the effect s of a PC CSHC Health Empowerment Intervention on both blood glucose and blood pressure. Very few existing intervention studies with patients who have a type 2 diabetes diagnosis emphasize changes in the way patients interact with their health care provide rs to improve health outcomes Yet, t he patient provider relationship has an important function in type 2 diabetes management and has been found to influence health outcomes as well as patient satisfaction, adherence, and health motivation among patients with other chronic diseases ( DiMatteo, 2004; Rubin et al., 2006). Clearly, there is a need for research to investigate a broad range of behaviors and outcomes following type 2 diabetes interventions that include an emphasis on the patient
67 provider relation ship and that assess intervention effects on multiple health outcomes that are relevant to living well with type 2 diabetes. Th e design and implementation of the Health Empowerment I ntervention that will be tested in the present research is based on the m ost proximal variables of the PC CSHC Model These proximal variables are patient empowerment (identified as interpersonal control in the PC CSHC Model ) and stress (measured as physical, cognitive, and emotional stress) Given that the patient provider relationship has been documented as critical in the health behaviors and outcomes of patients, the present study will solely focus on the impact of patient perceived provider cultural sensitivity rather than on other aspects (i.e., office staff, clinic env ironment characteristics) of patient centered culturally sensitive health care Thus the Health Empowerment I ntervention tha t will be tested in the present research will involve empowering participants by teaching them assertiveness skills for obtaining desired patient centered culturally sensitive provider behaviors and attitudes and increasing their ability to have desired control in the patient provider relationship, skills for reducing stress, and strategies for engaging in h ealth promoting behaviors Hypotheses Using a pre post intervention control group desig n the impact of a Culturally Sensitive Health Empowerment I ntervention informed by the PC CSHC Model will be tested using a sample of African American and non Hispanic White adult participants with type 2 diabetes from low income households The following six hy potheses will be tested : H ypothesis 1 : P articipants in the IG, as compared to participants in the CG, will report greater increases in their
68 (as measured by the Tucker Culturally Sensitive Health Care Inventory Provider Form) from pre intervention to post intervention ; H ypothesis 2 : Participa nts in the IG, as compared to participants in the CG, will report greater decreases in their reported ph ysical stress ( as measured by the Strain Questionnaire ) from pre intervention to post intervention ; H ypothesis 3 : Participants in the IG, as compared to participants in the CG, will report greater increases in their engagement in health promoting behaviors ( as measured by four subscales of the Health Promoting Lifestyle Inventory II -the Health R esponsibility, Exercise, Nutrition, and S tress M anagement subscales) from pre intervention to post intervention ; Hypothesis 4: Participants in the IG, as compared to participants in the CG, will report greater increases in self reported patient empowerment (as measured by the Patient Empowerment Inventory) from pre intervention to post intervention ; H ypothesis 5 : Participants in the IG, as compared to participants in the CG, will evidence greater decreases in their systolic and diastolic blood pressur e (as measured by t rained professional s using a standardized manual blood pressure cuff at the data collection sessions ) from pre intervention to post intervention ; and H ypothesis 6 : Participants in the IG, as compared to participants in the CG, will evidence greater decreases in their blood glucose (as measured by an average of three self readings recorded one week prior to the data collection sessions ) from pre intervention to post intervention
69 Fi gure 2 1 Most proximal p athways of ul turally sensitive health c are (PC CSHC) m odel that informed the culturally s ensitive health empowerment intervention t ested in the present s tudy Perceived Provider Cultural Sensitivity T CSHCI Provider Form Interpersonal Control / Empowerment PEI Inventory Physical Stress Strain Questionnaire Health Promoting Lifestyle Behaviors Health Promoting Lifestyle Inventory II Health Outcomes Variables Blood Glucose/Blood Pressure
70 CHAPTER 3 RESEARCH METHODOLOGY Participants The participant dat a for this study is from data collected as an independent part of a larger national study on Patient Centered Culturally Sensitive Health Care and Health Promotion. The purpose of this larger national study was to 1) establish the reliability and validity and refine the properties of the Tucker Culturally Sensitive Health Care Inventory (T CSHC I) and 2) apply a health care intervention based on the PC CSHC Model. This research program was funded by the Robert Wood Joh nson Foundation and conducted in collaboration with the University of Florida Behavioral Medicine Research Team, for which the aut hor of this study served as Director of Patient Intervention under the mentorship of th e Principal I nvestigator of the overall project and grant Dr. Carolyn Tucker The participants in this study were African America n and non Hispanic White American adult s who self reported having received a diagnosis of ty pe 2 diabetes. The following participant inclusion criteria were used: (a) age 18 or older, (b) able to understand and speak English, (c) have a diagnosis of type 2 diabetes for at least six months (d) have no apparent cognitive impairments, (e) have no known medical impairments that would prevent the ability to walk, and (f) do not self report being pregnant. Participant s were recruited from a small city in North Central Florida where mostly African Ame ricans and non Hispanic White s from low household incomes reside A total of 127 adult participants with type 2 diabetes met all of the participant inclusion criteria and signed informed consent forms and completed the baseline Assessment Battery (AB) for this study Of this total number, approximately 64 participants were originally assigned to the Intervention Group condition and 63 were assigned to the Control Group condition. C omplete pre post data is available for 9 4 of these original 127 participants ; indicating a 26 %
71 attrition rate for this study. However, a higher attrition rate was observed for participants in the Control Group condition (32%) compared to those in the Intervention Group condition (20%). T hus the sample on which data analyses were performed to test the previously stated hypotheses and for which descriptive d ata are presented consists of 94 participants. In terms of demographic characteristics, 74% of th is sample identified as African American, 24 % of this sample identified as non Hispanic White American and 2% did not report their race Seventy six percent of participants in this study were female and the remaining 24% were males. The vast majority of p articipants reported ages ranging from 45 years to 65 years or older. The m ode age range for this sample was 65 years and older with 36% of participants in this age bracket, followed by 29 % of participants in the 55 64 age range, and 28% of participants in the 45 54 age range The remaining 7 % of participants report ed being less than 45 years of age With regard to education, 11% of participants identified their highest level of education as middle school, 37% reported their highest level of education as receiving a high school diploma, 36% indicated th at they had some colle ge, and 14 % of the participants in this sample had obtained a college degree or higher. Eighty percent of this sample reported that they do not work. Forty two percent of this sample r eported an annual household income of less than $10,000 ; 31% reported an annual household income of $10,000 $20,000 ; and 12% reported an annual income of $20,000 $30,000. The remaining 15% of this sample reported an annual household income greater than $30,000. With regard to health characteristics of this sample, the most commonly endorsed response for years past since receiving a type 2 di 5 years which was reported by 60% of this sample (n=57). Twelve percent (n=11) of participants were treating their diabetes solely through dietary adju stment ; 23% (n=20) report ed treating their diabetes with medication
72 only ; and the remaining 65 % (n=55 ) reported treating their diabetes with medication and some combination of diet and exercise Approximately 42 % of participants reported that they check their blood glucose levels daily (n= 3 7 ). However, of the 58 % who check their blood glucose less frequently, 14 % reported checking their blood glucose somewhere between four and six ti mes per week ; 33 % reported checking somewhere between one and three time s per week ; and 11 % reported that they never check their blood glucose levels. T able s 3 1 and 3 2 display the demographic and health related information for control and intervention participants. D emographic and health related information is also presented separately by racial group in Tables 3 3 and 3 4 Measures As part of the larger national study, participants completed a comprehensive assessment b attery (AB) consisting of 12 psychosocial and health assessment questionnaires /inventories in addition to providing the following self report health related d ata: blood glucose data and daily steps walked Additionally, trained professionals (i.e., nurses and pre med students supervised by nurses) using standardized bloo d pressure cuffs and waist to hip circumference, weight and height (for use in calculating body mass index [BMI]). Five of the 12 psychosocial and health assessment questionnaires / inventories the self reported blood glucose levels, and the measured blood pressure data were used to test the hypotheses of the present study The five psychosocial and health assessment questionnaires /inventories used in this study include : ( 1) the Health and Demo graphic Data Questionnaire ( 2) the Tucker Culturally Sensitive Healt h Care Provider Inventory Patient Form ( 3) the Health Responsibility, Exercise, Nutrition, and Stress Management subscales of the Health Promoting Lifestyle Profile II ( 4) t he Strain Questionnaire and ( 5) the Patient
73 Empowerment Inventory. Below are descriptions of these questionnaires/inventories and of the measures of blood pressure and self reported blood glucose levels Patient Demographic and Health Data Questionnaire The Patient Demographic and Health Data Questionnaire (Patient DHDQ; refer to Appendix A) was constructed by the researchers for the larger study of which the pr esent study was an independ ent part. This questionnaire assesses basic demographic information such as age, gender, race/ethnicity, educational level, employment status, and annual household income Additionally, this questionnaire assesses information relevant to experiences with type 2 diabete s such as length of time since d iagnosis, type of treatment (i.e. diet, medication, insulin), frequency of monitoring blood glucose levels, height, weight, information information about the health care clinic where the participant receive s treatment, and the frequency of health care visits during the past year. Tucker Culturally Sensitive Heal th Care Provider Inventory The Tucker Culturally Sensitive Health Care Provider Inventory Patient Form ( T CSHCPI PF ; refer to Appendix B ) is a 27 item measure that instructs p atients to rate their level of agreement that the listed provider behaviors and attitudes that are characteristic of the health care provider who they visit most often ( Tucker, Nghiem, Marsiske, & Robinson, manuscript s ubmitted for publication) An example item from the T CSHCPI PF is Participants select responses using a four point l ikert CSHC P I responses on each of the items and then calculating a mean for each of its three subscales, which are 1) Competence/ Confidence, 2) Respect/ Communication, and 3) Se nsitivity/ Interpersonal Skill The total measure and each
74 of these three subscales demonstrate high concurrent validity and excellent internal consistency reliability with reliability estimates ra nging from .94 .97 For the present study, the Cronbach alpha coefficient for the total T CSHCPI PF was found to be .97 and .95, .96, and .92 for the Competence/Confidence, Respect/ Communication, and Sensitivity/ Interpersonal Skill subscales, respectively. The Health Promoting Lifestyle Profile II The Health Promoting Lifestyle Profile II (HPLP II; refer to Appendix C) is a 52 item self report measure of self initiated behaviors and perceptions that serve to maintain or enhance the level of wellness, self actualization, and fulfillment of the individual (Walker, Sechrist, & Pender, 1987) Th is measure uses a 4 point l ikert scale wit to rate participants current health promoting behaviors. Subscale and Total scores are arrived at by calculating the mean of the items for each individual subscale and for the total inventory, respec tively H igher scores on the HPLP II are associated with higher levels of engagement in a health promoting lifestyle whereas lower scores are associated with lower levels of engagement in a health promoting lifestyle. T he HPLP was revised in 1996 to more accurately reflect current practice For the purposes of the present study only four of the six subsc ales of the revised HPLP II were used These four subscales are : Health R esponsibility, Physical Activity Nutrition, and Stress M anagement. The for the total HPLP has been reported to be .9 4 and the coefficient alphas for each subscale range from .79 to .87 (Wa lker, Sechrist, & Pender, 1995). Test retest reliability results showed stability for the HPLP II and for its su bscales with test retest reliabilities ranging from 0.8 1 to 0.91 (Walker et al., 1987 ). An example item on the HPLP II For the
75 present study, the Cronbach alpha coefficient for the total HPLP II w as found to be .93 and .84, .89 .82, and .82 for the Health Responsibility, Physical Activity, Nutrition, and Stress Management subscales, respectively. The Strai n Questionnaire The Strain Questionnaire (SQ; refer to Appendix D) co ntains 48 items and is a multi component measure of stress (Lefebvre & Sandford, 1985). Participants are asked to rate how frequently they experienced s tress in various areas over the past week with r esponses ranging ys) on a 5 point likert scale. The SQ assesses different manifestations of stress and includes the following subscales: B ehavioral S tress, C ognitive S tress, and P hysical S tress. Subscale scores and a total score are achieved by summing item responses. Lower scores are indicative of lower levels of stress and higher scores are associated with higher levels of stress. The SQ has been reported to have good internal consistency with alpha coefficients ranging from .71 .94 as well as high concurre nt validity (Main et al., 1987). In the past week how often have you In the present study, only the Physical Stress subscale was used and the Cronbach alpha coefficient wa s found to be 93 for this subscale The Patient Empowerment Inventory The Patient Empowerment Inventory (PEI; refer to Appendix E) contains 15 items using a 4 point likert interactions with their health care providers. Participants select responses ranging from 1 = Disagree 4 = mean score is calculated for the total measure ; higher scores indicate less empowerment experienced by patients in the relationship and lower scores indicate greater perceived power by patients in the relationship The PEI was developed by the
76 Principal Investigator (PI) of the overall research program from which this independent study was conducted. The PEI was devel oped due to the absence of measures within the health care context that allow patients to appraise their perception of interpersonal control and assertiveness in their relationship with their health care provider In my relat ionship with my health care provider, she or he has more control in the relationship than I For the present study, the Cronbach alpha coefficient for the PEI was found to be .72. Health Record Form The Health Record F orm (HRF; refer to Appendix F) refers to the document used to record and store participant information. The first part of this form was used to record the eight, weight, BMI, blood pressure, hip circumference, and weight circumference. Some of this health data was used for the broader study only. Trained professionals and pre med students obtained these health data, recorded it on the first part of the HRF, and filed t his completed part of the HRF. The second part of the HRF was kept by the participant so that he/she could record or have someone other than the researchers record her/his steps walked, blood glucose level and blood pressure. Measurement of Blood Pressure and Blood Glucose Blood pressure (BP) was measured on site at the data collection s essio ns. Culturally diverse nurses and pre med students trained in blood pressure measurement and supervised by the b lood p ressure (BP) and record this information on the Health Record Form ( HRF ) at the Baseline and Post Data Collection Session s Blood pressure was taken twice about 5 minutes apart for each patient using a standardized manual blood pressure cuff and the average of these readings was recorded record form B lood glucose (BG) was measured and self recorded by participants during two designated
77 weeks at the beginning (i.e., during the week prior to the Baseline Data Collection Session ) and at the end of the study (i.e., during the week prior to t he P ost D ata C ollection S ession ) Participants were asked to measure their BG in the morning prior to eating and to do so on three separate days of the designated week. Participants were also asked to self record their blood pressure during the same time p eriods and to self record this information as well in addition to the self recorded blood glucose readings. The vast majority of participants reported using a personal glucometer to obtain the ir BG measurement s. T esting strips were offered to participants, and local clinics that offer free blood glucose testing weekly on various days were also available to participants to get their BG measurements taken. Self recorded BG and BP data were reco rded by participant s on the HRF Procedure Th is r esearch was conducted in four distinct phases the Participant R ecruitment phase the Baseline Data Collection phase, the Culturally Sensitive Health Empowerment Intervention phase and the Post Data Collection phase These four phases are described in the following sections. A description of the abbreviated version of the Culturally Sensitive Health Empowerment Intervention o ffered to participants in the Control Group condition is also described Participant Recruitment Recruitment of participants was conducted by the UF Behavioral Medicine Research Team and the investigator of the present study. This team consisted of a culturally diverse group of four graduate students, 25 under graduate students, 1 physician, 1 psychol ogist (i.e., the PI for the larger national study) and a community member. Recruitment strategies used included the flyer method, the snowball technique, and radio advertisements. In the flyer method recruitment f lyers were distributed at local health care clinics churches, barbershops, and beauty shops T he snowball technique method involved having individuals who had agreed to be participants, local physicians,
78 and community members affiliated with the research team mention the project to and dissemi nate recruitment flyers to people known to have type 2 diabetes who might be interested in participating in the present study Radio announcements were used to generate awareness of the present study and provide contact information for adults interested in participating in the study, which was described as a study that focuses on learning health promoting behaviors for living well with type 2 diabetes. Individuals from the target community who received recruitment fliers about the present study and were in terested in participating in it were instructed via the flyer to contact the research laboratory number listed on the recruitment flyer. Individuals who called to inquire further about the study were asked to attend a Recruitment Session where they receive d detailed information about the study. Prospective participants were encouraged to bring a support person, either friend or family member, to all study related events. The rationale for inviting a support person is that previous research suggests that hav ing social support is complimentary in health interventions because it reinforces engagement in health promoting behaviors (Barrera et al., 2008). At the Recruitment Session, prospective participants were provided with information about the dates and times of the Health Empowerment Interventions and were then each asked to (a) sign an Informed Consent F orm (ICF) if they decided to participate in the study and (b) complete a Patient Demographic and Health Data Questionnaire (Refer to Appendix G for a copy of the ICF ) Participants were offered assistance i n reading the Informed Consent Form and in completing the Patient Demographic and Health Data Questionnaire. The ICF outlined the study procedure s and provided information on the potential bene fits and risks of the study. Potential b enefits listed included reduction in blood pressure, blood glucose, and weight, and learning skills to improve self management of type 2 diabetes. Another specified benefit was learning skills and strategies for
79 obta ining and sustaining (reinforcing) desired health care provider behaviors in patient provider interactions. Potential study participation risks listed include d the everyday risks associated with exercise and the possibility of accidental disclosure of the ir personal health information (PHI) Participants were informed of the steps taken to protect confidentiality of their PHI Participants were also offered $60 for completing the program, with four separate $15 payments disbursed at the Baseline Data Coll ecti on Session, at each of the two w orkshops constituting the Culturally Sensitive Health Empowerment Intervention, and at the Post Data Collection Session P articipants were given payment in the form of $15 money orders at the end of each of these scheduled events and were asked to sign a receipt indicating they received payment. Baseline Data Collection Two weeks prior to the implementation of the Culturally Sensitive Health Empowerment Intervention Baseline Data Coll ection Sessions were held at various times at a local middle school (i.e., Lincoln Middle School in Gainesville, Florida) to accommodate the work schedules of the research participants. Participants who attended one of these sessions were asked to complete the Baseline Assessment Battery (AB) consisting of the five aforementioned questionnaires. Participants were offered individualized assistance in reading and writing responses to the five questionnaires. A small number (approximately 5) of participants ac cepted the invitation to have the AB administered verbally. Additionally, participants were offered the option of completing the AB at home, though the overwhelming majority of participa nts independently completed the AB at the data collection site At the Baseline Data C ollection Session p articipants were given a blank Health Record Form (HRF). Using the first part of the HRF trained nurses and pre med students supervised by s well as other
80 information related to the broader study (i.e., height, weight, BMI, hip circumference, and weight circumference ) Participants were then instructed to take the second part of the HRF home with them and to use this form to re cord their bloo d glucose on three random mornings during the week following the Baseline Data Collection Session and to return these data to the research team at the beginning of the first workshop of the two workshops constituting the Culturally Sensitive Health Empower ment Intervention (CS HEI) Participants were also encouraged to self record their blood pressure on the same form during the week between the Baseline D ata C ollection S ession and the first workshop. A list of sites where blood glucose and blood pressure t esting is offered at no cost was provided. Following the B aseline Data Collection Session participants were randomly assigned to either the Intervention Group or Control Group using a stratified sampling procedure to ensure relatively equal ethnic and gender representation in each group. The Control Group did not have the opportunity to participate in the CS HEI, but they were offered an ethical abbreviated version of the CS HEI (which is described at the end of this chapter) following Post Data Collect ion. Some participants expressed disappointment for not being assigned to the Intervention Group, but overall participants were understanding of the research design and appreciative of the financial compensation regardless of group assignment. Participants assigned to the Control Group were assured that they would eventually have access to the knowledge and materials provided to participants in the original Culturally Sensitive Health Empowerment Intervention. Culturally Sensitive Health Empowerment Interve ntion (CS HEI) The CS HEI (refer to Appendix H ) consisted of two 5 hour workshops held approximately two weeks apart. Workshop 1 focused more on knowledge of health promoting behaviors and Workshop 2 focused more on reinforcing PC CSHC in interactions with
81 providers. Although the curriculum of each workshop was distinct in terms of content, both workshops were implemented consistently with the PC CSHC Model. Specifically, t he underlying conceptual core theme and objective of both workshops involved teaching participants to identify and reinforce desired culturally sensitive provider behaviors, increas ing pa tient empowermen t/interpersonal control, reduc ing stress, and increas ing knowledge of and engagement in health promoting behaviors. For example, when teaching participants about health y eating behaviors participants were : (1) provided with opportunities to express frustr ations and barriers that prevent them from healthy eating ; (2) encouraged to identify culturally sensitive options for overcoming these barriers ; (3) taught strategies for effectively communicating with providers about healthy eating and nutritional barrie rs; and (4) encouraged to set individualized goals to improve their diet This teaching/intervention strategy was guided by the key aspects of PC CSHC (i.e. perceived cultural sensitivity, stress reduction, patient empowerment and a focus on health promoting behaviors ) rather than just strictly providing nutritional information. Each workshop of the CS HEI was conducted by a culturally diverse team of researchers among who were a physician, clinical and health psychologist, a faculty member in public health, graduate students, and undergraduate students with training in behavio ral medicine and health psychology. The foci of the CS HEI included : (a) identification of a set of Health Smart Behaviors (HSBs; health promoting behaviors) and pro motion of kn owledge, motivation, and skills for engaging in these behaviors, (b) training in stress, anxiety, and anger management and in assertiveness that promote engagement in health smart behaviors for a healthy lifestyle, and (c) behaviors and strategies that ena ble patients to engage in positive interactions and effective
82 communication with health care providers and to elicit/reinforc e desired PC CSHC behaviors from their providers Workshop I of the CS HEI Workshop I of the CS HEI specifically emphasized the following: (a) the importance of engaging in HSBs each day, (b) the motivators of and barriers to engaging in these behaviors, and (c) specific health/nutrition information that support these behaviors. The HSBs emp hasized include the following: (1) consuming foods low in sugar fat, and sodium, (2) eating a healthy low sugar beverages, (5) walking 10,000 steps or more each day, (6) restricting sedentary ac tivities, such as watching TV, to no more than 2 hours per day, and (7) engaging in moderate to intense physical activity for at least one hour three days per week. These behaviors align with many of the recommendations set forth in the ADA Stand ards of Me dical Care for type 2 diabetes and in Healthy People 202 0 These behaviors are also typically recommended in treating other chronic diseases such as hypertension, cardiovascular disease, and obesity. In addition to learning about HSBs, patients were taug ht by a nutritionist how to interpret nutrition labels on food, monitor portion sizes, and make healthy food choices. Consistent with the PC CSHC Model, HSBs were taught in a culturally sensitive and relevant manner. For example, using simple and understan dable language, participants were taught ways to understand the percents and serving size information on nutrition labels. The n utrition labels of culturally relevant foods (i.e., collard green s, sweet tea, and other common S outhern foods ) were used in this teaching process. Participants were also empowered to ask nutrition related questions of dietitians and nutritionists present at Workshop I. Opportunities to discuss motivators and barriers to engaging in the HSBs in a small group with a group fac ilitator were included so that
83 participants could express emotions around the difficulty in herent in engaging in HSBs and share motivators and strategies for overcoming these barriers. T his helped reduce stress and increase empowerment through the support, knowledge, and encouragement of others. Two health panels were also incorporated into Workshop I of the CS HEI. The first panel consisted of participants with type 2 diabetes who had successfully reduced the symptoms of their disease by incorporating th e HSBs (i.e., healthy eating and exercise behaviors) and asking their providers for needed information/support This panel also included support persons who were either spouses or family members of adults with type 2 diabetes and who were very supportive lifestyle and/or into the lifestyle of a family member with type 2 diabetes. It sho uld be noted that all participants were encouraged to invite family members and spouses/partners to be support partners who experience the intervention workshops with them. Panel 1 helped facilitate patient empowerment by exposing participants to people li ke themselves who had successfully learned to manage their diabetes and the strategies that enabled them to improve their health The second panel consisted of health professionals with degrees or expertise in nutrition, psychology, endocrinology (diabetes) general medicine, nursing, and fitness. Each of these experts answered health related questions from the audience and provided strategies and tips on how to manage type 2 diabetes and related diseases such as elevated blood pressure and pain i n their limbs. This panel also addressed questions regarding how to have a successful health care visit. Providers even shared some of their own struggles with consistently engaging in HSBs and managing stress. Providers emphasized the importance of patie nts being engaged and empowered in the patient provider relationship and in assuming responsibility for their own
84 health through engaging in HSBs. Panel 2 incorporated opportunities for participants to interact with health care providers and to learn effec tive communication and how to reinforce desired behaviors with regard to talking with providers about HSBs. Workshop II of the CS HEI Workshop II of the Health Empowerment Intervention focused on empowering participants with skills for obtaining patient centered culturally sensitive health care provider behaviors and attitudes, which are behaviors and attitudes that enable patients to feel comforta ble with, trusting of and respected by their health care providers (Tucker et al., 2007). Specifically, participants were trained in the following areas: (1) assertiveness skills, (2) anger management skills, and (3) stress and anxiety management skills E ach of these skills w as taught using patient provider interaction scenarios For example, participants were taught how they can appropriately express health care dissatisfaction to their providers cognitive modeling and self instruct ion step by step training approach was used to teach these skills. Participants were also instructed on how to use self praise to reinforce learned behaviors and skills. As with Workshop I Workshop II was informed by the PC CSHC Model S pecifically, this workshop focused on empowering patients to be assertive in their interactions with their providers and to manage experienced stress and anger that ha ve the potential of impeding engag ement in health promoting behaviors and of negatively impact ing the patient provider relationship For the assertiveness training component, participants were taught how to constructively express negative feelings and communicate with their providers when they (the participants) do not feel their questions are being answered, when they are not being treated as desired, or when experiencing their as culturally insensitive and/or
85 disempowering Participants were taught strategies for ensuring an effective health care visit (e.g., havin care and health promotion recommendations). Specific statements and body language that are consistent with assertiveness vers us aggressiveness were taught. Participants were also taught anger management skills This training involved about the potential negative health consequences of expressing anger in a hostile manner (e.g., consequences such as elevated blood pressure) and of not expressing it at all (e.g., increased somatic symptoms) Participants were taught cognitive behavioral strategies, such as envisioning a stop sign and using deep breathing to regain emotional and be ha vioral control when feeling angry Participants were empowered to (a) choose the extent to which they allow others to as to elicit anger that can cause negative health co nsequences (e.g., elevations in blood pressure ) The stress and anxiety management training involved teaching participants that stress and anxiety are normal responses that in small amounts can have a p roductive value, but that when experienced over time can lead to many negative health consequences (e.g., reduced immune functioning, vulnerability to illness, and lapses in self care and health promoting behaviors). Participants were educated about the sp ecific relationship between stress and health among individuals with type 2 diabetes and about the negative and immediate effect stress has on blood pressure and blood glucose levels. Participants were also taught how to take control of their stress and an xiety and thus their health by using relaxation techniques such as deep breathing, progressive muscle relaxation, and meditation and/or prayer. Approxima tely 51 (80%)
86 participants of the original 64 participants in the study who were assigned to the Intervention Group attended both Workshops of the CS HEI. During the two months following Workshop II of the CS HEI, participants in the Intervention Group were contacted by phone and/or mail to encourage and praise their efforts to engage in healthy lifestyle behaviors they learned as part of the CS HEI workshops. This was also an opportunity to provide support and suggestions for overcoming barriers that participants had encountered with incorporating HSBs into thei r lifestyle. Research has found that the use of such booster calls/contacts helps to reinforce and support engagement in health promoting behaviors particularly among adults from low income households (Hind et al., 2010). Post Data Collection Two months f ollowing implementation of the second CS HEI, both the Intervention Group and the Control Group participants attended a Post Data Collection Session that involved the same data collection activities as those that occurred at the Baseline Data Collection Se ssion. Participants were asked to fill out another Assessment Battery (AB) identical to the previously completed AB. A n identical Health Record Form (HR F) for reporting self recorded blood g lucose (BG) was mailed to participants two weeks prior to the Post Data Collection Session and they were asked to record their blood glucose on three separate mornings during a specified week and to bring this form to the Post Data Collection Session. Participants were also encouraged to self record their blood pres sure during the week prior to the Post Data Collection Session. Research A ssistants made reminder calls to provide the dates and times of the Post Data Collection Sess ions and to remind participants to self record their blood glucose and blood pressure Cu lturally diverse nurses and pre med students trained in blood pressure measurement and supervised by the nurses
87 Health Record Form (HRF) at the Post Data Collec tion Session. Abbreviated CS HEI for the Control Participants Foll owing the Post Data Collection S ession, participants who were assigned to the Control Group condition were contacted and invited to attend an abbrev iated version of the CS HEI so that they could access the health information and materials provided to participants in the Intervention Group This abbreviated CS HEI lasted approximately 2 3 hours, and provided Control Group participants with the core presentat ions of the full length CS HEI, resource materials, and an opportunity to have questions answered Approximately, 25% of the Control Group participants (n=10) out of the 43 who participated in both Data Collection Sessions attended the abbreviated CS HEI.
88 Table 3 1. Demographic Characteristics of Control and Intervention Participants Control Participants P Intervention Total N % N % N % Race/Ethnicity African American 33 35.9 35 38.0 68 73.9 White American 10 10.9 14 15.2 24 26.1 Total 43 46.8 49 53.2 92 100 Gender Male 9 9.9 12 13.2 21 23.1 Female 33 36.3 37 40.6 70 76 .9 Total 42 46.2 49 53.8 91 100 Age Age 25 34 1 1.1 1 1.1 2 2.2 Age 35 44 1 1.1 4 4.3 5 5.4 Age 45 54 13 13.9 13 14.0 26 27.9 Age 55 64 12 12.9 15 16.1 27 29 Age 65 or older 16 17.2 17 18.3 33 35.5 Total 43 46.2 50 53.8 93 100 Marital Status Single living without partner 13 13.8 14 14.9 27 28.7 Single living with partner 3 3.2 2 2.1 5 5.3 Married living with partner 12 12.8 23 24.4 35 37.2 Divorced or Separated 6 6.4 6 6.4 12 12.8 Widow/Widower 9 9.6 6 6.4 15 16.0 Total 43 45.8 51 54.2 94 100 Education (highest level completed) Middle School 7 7.6 3 3.3 10 10.9 High school diploma 16 17.4 18 19.6 34 37.0 Some college 13 14.1 20 21.7 33 35.8 College degree 5 5.4 7 7.6 12 13.0 Graduate School 1 1.1 2 2.2 3 3.3 Total 42 45.6 50 54.4 92 100 Employment Full time Employment 3 3.3 6 6.5 9 9.8 Part time Employment 4 4.3 4 4.3 8 8.6 Retired/Unemployed 35 38.1 40 43.5 75 81.6 Total 42 45.7 50 54.3 92 100 Annual Household Income Annual Household Income Less than $10,000 18 21.7 17 20.5 35 42.2 $10,000 $20,000 14 16.9 12 14.5 26 31.4 $20,001 $30,000 2 2.4 8 9.6 10 12.0 $30,001 $40,000 3 3.6 2 2.4 5 6.0 $40,001 $50,000 2 2.4 5 6.0 7 8.4 Total 39 47.0 44 53.0 83 100
89 Table 3 2. Health Related Characteristics of Control and Intervention Participants Control Intervention Total N % N % N % Years Diagnosed with Diabetes 0 5 years 25 26. 5 32 34.0 57 60.5 6 10 years 6 6.4 11 11.7 17 18.1 11 15 years 7 7.4 4 4.3 11 11.7 16 20 years 3 3.2 1 1.1 4 4.3 21 25 years 1 1.1 0 0.0 1 1.1 26+ years 1 1.1 3 3.2 4 4.3 Total 43 45. 7 51 54. 3 94 100 Type of Treatment Diet only 8 9.3 3 3.5 11 12.8 Medication only 7 8.2 13 15.1 20 23.3 Medication plus diet 6 7.0 10 11.6 16 18.6 Medication plus diet and exercise 18 20.9 21 24.4 39 45.3 Total 39 45.4 47 54.6 86 100 Frequency of Blood Glucose Testing Never 6 6.7 4 4.5 10 11.2 1 day per week 4 4.5 6 6.7 10 11.2 2 days per week 6 6.7 5 5.6 11 12.3 3 days per week 3 3.4 6 6.7 9 10.1 4 days per week 1 1.1 4 4.5 5 5.6 5 days per week 1 1.1 3 3.4 4 4.5 6 days per week 2 2.3 1 1.1 3 3.4 7 days per week 17 19.1 20 22.6 37 41.7 Total 40 44.9 49 55.1 89 100 Note: Due to missing re sponses some Ns are less than 94
90 Table 3 3. Demographic Characteristics of Participants by Racial Group African American Non Hispanic White Total Sample N % N % N % Gender Male 16 18.0 5 5.6 21 23.6 Female 49 55.1 19 21.3 68 76.4 Total 65 73.1 24 26.9 89 100 Age Age 25 34 1 1.1 1 1.1 2 2.2 Age 35 44 3 3.3 2 2.2 5 5.5 Age 45 54 18 19.8 8 8.8 26 28.6 Age 55 64 18 19.8 8 8.8 26 28.6 Age 65 or older 27 29.6 5 5.5 32 35.1 Total 67 73.6 24 26.4 91 100 Marital Status Single living without partner 22 23.9 5 5.4 27 29.3 Single living with partner 4 4.4 1 1.1 5 5.5 Married living with partner 22 23.9 13 14.1 35 38.0 Divorced or Separated 9 9.8 3 3.3 12 13.1 Widow/Widower 11 11.9 2 2.2 13 14.1 Total 68 73.9 24 26.1 92 100 Education (highest level completed) Middle School 8 8.9 2 2.2 10 11.1 High school diploma 26 28.9 7 7.8 33 36.7 Some college 22 24.5 11 12.2 33 36.7 College degree 10 11.1 2 2.2 12 13.3 Graduate School 1 1.1 1 1.1 2 2.2 Total 67 74.4 23 25.6 90 100 Employment Full time Employment 8 8.9 1 1.1 9 10.0 Part time Employment 7 7.8 1 1.1 8 8.9 Retired/Unemployed 53 58.9 20 22.2 73 81.1 Total 68 75.5 22 24.5 90 100 Annual Household Income Less than $10,000 26 32.1 8 9.9 34 42.0 $10,000 $20,000 21 26.0 4 4.9 25 30.9 $20,001 $30,000 6 7.4 4 4.9 10 12.3 $30,001 $40,000 2 2.5 3 3.7 5 6.2 $40,001 $50,000 4 4.9 3 3.7 7 8.6 Total 59 72.8 22 27.2 81 100
91 Table 3 4. Health Related Characteristics of Participants by Racial Group African American Non Hispanic White Total Sample N % N % N % Years Diagnosed with Diabetes 0 5 years 37 40.2 19 20. 6 56 60.8 6 10 years 14 15.2 4 4.3 18 19.5 11 15 years 10 10.9 0 0.0 10 10.9 16 20 years 3 3.3 1 1.1 4 4.4 21 25 years 1 1.1 0 0.0 1 1.1 26+ years 3 3.3 0 0.0 3 3.3 Total 68 74.0 24 26.0 92 100 Type of Treatment Diet only 9 10.7 2 2.4 11 13.1 Medication only 18 21.4 2 2.4 20 23.8 Medication plus diet 11 13.1 5 6.0 16 19.1 Medication plus diet and exercise 28 33.3 9 10.7 37 44.0 Total 66 78.5 18 21.5 84 100 Frequency of Blood Glucose Testing Never 6 6.9 4 4.6 10 11.5 1 day per week 9 10.3 1 1.2 10 11.5 2 days per week 6 6.9 5 5.7 11 12.6 3 days per week 6 6.9 2 2.3 8 9.2 4 days per week 3 3.4 2 2.3 5 5.7 5 days per week 4 4.6 0 0.0 4 4.6 6 days per week 3 3.4 0 0.0 3 3.4 7 days per week 27 31.1 9 10.3 36 41.4 Total 64 73.6 23 26.4 87 100 Note: Due to missing responses some Ns are less than 94.
92 CHAPTER 4 RESULTS This chapter presents the results o f the intervention control group design used to test the hypothesized effects of the Culturally Sensitive Health Empowerment Intervention (CS HEI). The r esults are reported as follows: 1) the descriptive data for all of the variables in the study are reported for the entire sample and then separately for the control and intervention groups and separately by racial groups ; 2) the preliminary data analyses and Pearson co rrelations for the co ntrol and intervention groups are presented; and 3) results fr om Repeated Measures Multivariate Analyses of Variance ( MANOVA s) and follow up Analyses of Cov ariance (AN C OVAs) used to examine H ypotheses 1 5 are presented Statistical analyses were performed using the Statistical Package for Social Sciences (SPSS) Version 19. Results of the Descriptive Statistics Means and standard deviations for the psychosocial and health variables of interest (i.e., patient perceived PC CSHC, stress, patient empowerment, health promoting lifestyle, and blood pressure and blood glucose) for participants in the control and interven tion groups at p re intervention and p ost intervention intervals are presented in Table s 4 1 and 4 2 Means and standard deviations for the psychosocial and health variables of interest are also presented by racial group in Tables 4 3 and 4 4 D at pre intervention were identified to hig hlight charact eristics of participants in this study who are meeting the recommended health targets espoused by the American Diabetes Association Standard s for type 2 diabetes management (Refer to Table 4 5) Specifically, h ealth y participants are those who m e et the recommended ADA (2007) standards in two main areas, namely blood pressure (as demonstrated by a reading less than 130/8 0) and blood glucose ( as demonstrated by
93 a fasting blood glucose reading less than 126) The same demographic characteristic s are provided for the least healthy participants in this study as well. The least healthy participants are those with blood pressure (as demonstrated by a reading higher than 130/80) and blood glucose (as demonstrated by a fasting blood glucose reading g reater than 126) that is higher than the cutoff point recommended by the ADA (2007). Participants who are higher in one respective area, such as blood pressure, but are within the recommended range for blood glucose do not fit into this category. The decis ion to include characteristics of healthy participants in addition to those who are not meeting the recommended standards draws from theory of positive psychology ( Duckworth, Steen, & Seligman, 2005 ). This theory emph asizes what people are doing well to contribute to living healthier such as successfully managing their type 2 diabetes, rather than solely focusing on deficits and differences between groups. Demographic and psychosocial characteristics of p articipants who continued in t his study compared to those who discontinued participation were also explored. As previously mentioned, there was approximately a 26% attrition rate for participants in this study with a markedly higher attrition rate for participants in the Control Group assignment (32%) compared to those in the Intervention Group assignment (20%). Although random assignment procedures were used and no significant baseline differences between participants in the control and intervention groups were identified, it seems val uable to explore the characteristics of participants who did not continue in this study. T hree d emographic characteristics differed for participants who discontinued participation compared to t hose who continued participation. The characteristics included relationship status educational status, and employment statu s. Those who discontinued participation (N=32) more frequently reported being single (63%) more frequently reported less than a college education (96%) and more frequently reported being emplo yed (46%)
94 Independent samples t tests were performed to explore differences between those who eventually discontinued participation compared to those who continued participation at pre intervention on the psyc hosocial measures used in this study. There were statistically significant differences in s cores on the HPLP II total score ( t (125)= 1.98, p =.049), HPLP II nutrition subscale ( t (125)= 2.49 p =.017) and HPLP II stress management subscale (t (125)= 2.07, p =.045) Examination of mean scores between the groups (N=32) reported relatively lower levels of overall health promoting behaviors (M= intervention (M=2.45 SD=.50). Simila r differences in mean scores were also noted for nutrition (M=2.35, SD=.46 (N=94) at pre intervention (M=2.60, SD=.50 ) and for stress management 94) at pre intervention (M=2.46, SD=.56). Preliminary Analyses perceived provider cultural sensitivity, patient empowerment, stress, and health promoting lifestyle measures were examined through various SPSS programs for accuracy of data entry, missing values, outliers, distributional properties, multicollinearity, and oth er assumptions specific to the General Linear Model The assumption of normality was met by verifying that skewness and kurtosi s statistics were within an acceptable range. The T CSHCPI was the only measure with substantial missing items. Thus, a missing values analysis (MVA) was performed to determine the pattern of missing data and the appropriate step for addressing missing dat a. Results of the MVA determined that the percen tages of missing data ranged from 3.8% of missing responses to 13.1% of missing
95 responses per item and spanned across all three subscales of the T CSHCPI. As a follow up to assess properties of the missing da ta a Little MCAR test was performe d which tests whether or not data are missing at random. Based on the results of the Little MCAR Test (Missing Completely At Random), it appeared that data were missing at random as evidenced by an alpha greater than .05, in this case p =.100 There are no firm guidelines on what percentage of missing data constitutes the need to replace values, but it is suggested that 5 20% of missing data or less is adequate to proceed without replacing data (Pallant, 2004). However, the percentages of missing data would likely present challenges with statistical powe r given the small sample size for this study According to Tabachnick and Fidell (2007), the Multiple Im putation method is considered the superior option for replacing mis sing values especially in complex cases, but it is not necessary when the data is randomly missing In situations like this, Expectation Maximization (EM) Method is recommended (Tabachnick & Fidell, 2007) T hus, EM was applied to replace missing values for the T CSHCPI. Descriptive data is provided for the original T CSHCPI data with missing values and for the correct ed version using EM in Tables 4 1 and 4 2. Repeated measures multivariate analyses of variance ( MANOVA s ) with follow up univariate analyses an d analyses of covariance ANCOVAs were used to test the majority of the and tests of sphericity were examined for the multivariate analyses A p value of .05 was used to determine statistical significance; however; given the relatively small number of participants in this study, p values in the .05 .10 range were interpreted as approaching significan ce
96 Preliminary independent samples t tests were conducted to determine if there were any group differences between the intervention and control groups with regard to their scores on the measures administered at Baseline Data Collection despite stratified random assignment of participants to the Intervention Group or Control Group Although, no significant differences were identified between these groups on the baseline measures, A NCOVAs with baseline scores as covariates were performed to test three of the hypotheses that had a single dependent variable (Hypothesis 2, 4, 6) and repeated measures MANOVAS with the appropriate follow up univariate analyses were used to test the remaining hypotheses that had multiple dependent variables (Hypotheses 1, 3, 5) ANCOVA was used in order to control for any systematic differences between the IG and CG that may have arisen due to unanticipated issues with using a stratified randomization procedure for assigning participants to these groups An additional be nefit of using an ANCOVA is that this statistical analysis allows for greater power and sensitivity in the F test by accounting for substantial residual variance in the post intervention score ; furthermore, ANCOVAs are typically recommended for use in social science research involving small samples such as the sample in the present study (Pallant, 2004). In cases where follow up univariate analyses or ANCOVAs were used, a Bonferroni adjustment (alpha divided by the number of subscales) was u sed for interpreting alpha in order to reduce the risk of type I error. Correlational analyses were performed to identify the patient demographic and health variables to be entered as variables in the MANOVA s for each hypothesis The correlations among p re intervention measures for Control and Intervention Group participants are presented in Tables 4 6 and 4 7
97 Results of Hypotheses 1 6 Hypothesis 1 Hypothesis 1 stated that participants in the IG, as compared to participants in the CG, and attitudes (as measured by the Tucker Culturally Sensitive Healt h Care Inventory Provider Form) from pre intervention to post intervention To test this hypothesis a repeated measures m ultivariate a nalysis of v ariance ( MANOVA ) was performed. This test was selected versus MANCOVA because there were not significant dif ferences between groups at pre intervention and scores were relatively equivalent. The dependent var iables in this analysis were the following three subscales of the T CSHCPI PF : (1) Competence/ Confidence subscale (2) Respect/ Communication subscale and (3) Sensitivity/Interpersonal Skill subscale. T he independent variables in the MANOVA were Group, (Intervention Group versus Control Group), Time, and Group x Time (from baseline to post intervention ). These analyses were performed on the original T C SHCPI data with missing values and on the data correct using Expectation Maximization (EM) procedures. Preliminary analyses were conducted to assess tests of assumptions for homogeneity of Variances). Both of these tests generated non significant results suggesting that assumptions of was not significant suggesting that the sphericity assumption was met. Estimates of s ke wness and kurtosis were within an acceptable range (i.e. < 1) MANOVA performed on the original, uncorrected data did not generate statistically significant d ifferences by Group (i.e., Intervention and Control)
98 ( F [3, 90 ] = .360 p = .782 2 = .012 ) ; by Time ( F [3,90] = 1.00, p 2 = .022); or Time x Group ( F [3,90] = .244, p 2 = .005). This same procedure was repeated using the complete data adjusted by the EM procedure and significant differences were not found by Group (i.e., Intervention and Control) ( F [3, 91 ] = .3728 p = .538 2 = .0 2 3 ); by Time ( F [3,91] = .628 p = .599 p 2 = .020 ); or Time x Group ( F [3,91] = .580 p = .629 2 = .019 ). Hypothesis 1 was not supported. These results are summarized in Table 4 8 Hypothesis 2 Hypothesis 2 stated that participants in the IG, as compared to participants in the CG, would report greater decrease s in their reported physical stress (as measured by the Strain Questionnaire) from pre intervention to post intervention The rationale for analyzing physical stress only is that it ha d the highest correlation with the SQ total score (r=.96) ; furthermore, physical stress is most frequently associated with engagement in health promoting behaviors and with health outcomes in the type 2 diabetes literature and in tests of the PC CSHC Model ( Tucker et al., 2007; Surwit et al., 2002). To test hypothesis 2 a n analysis of c ovariance (ANCOVA) was performed. The dependent variable in this analysis was the physical stress post intervention score the independent variable was group assignment (Control versus Intervention), and the covariate was the physical stress pre intervention score Preliminary analyses were conducted to assess tests of assumptions for homogeneity of regression slopes and linearity and the assumptions of ANCOVA were met. Findings of the ANCOVA highlighted dif ferences in physical stress between groups at p ost intervention that were approaching significance ( F [1, 92] = 2.99 p = .087 2 = .032 ). An eta value of .032 suggests that approximately 3 % of the variance in physical stress is explained by group assignment. Examination of mean scores between the groups revealed that the participants in the
99 Intervention G roup reported relatively lower le vels of physical stress at p ost intervention (M=52.73, SD=17.65) compared to those in the Control G roup at p ost intervention (M=57.77, SD=18.48 ). In sum, the findings for Hypothesis 2 do not support this hypothesis, but there is an indication that differences between groups for physical stress were approaching significance in the expected direc tion. These res ults are summarized in Table 4 9 Hypothesis 3 Hypothesis 3 stated that participants in the IG, as compared to participants in the CG, would report greater increases in their engagement in health promoting behaviors (as measured by four su bscales of the Health Promoting Lifestyle Inventory (i.e., the Health Responsibility, Exercise, Nutrition, and Stress Management subscales) from pre intervention to post intervention To test this hypothesis a r epeated m easures MANOVA was performed This test was selected versus MANCOVA because there were not significant differences between groups at pre intervention and scores were relatively equivalent. The dependent variables in this analysis were the four subscales of the HPLP II and the independe nt variables were Group (Intervention Group versus Control Group), Time, and Group x Time. Preliminary analyses were conducted to assess tests of assumptions for homogeneity of quality of Error Variances) and Multivariate assumptions were met. Lambda, the results of the MANOVA indicated a non significant effect for differences on the HPLP II subscales by Group (i.e., Intervention and Control) ( F [4, 89] = 1.12 p = .355 2 = .048 ) ; by Time ( F [4, 89] = 2.36 p = .060 2 = .096 ); and Time x Group ( F [4, 89] = .937 p = .447 2 = .040 )
100 Although the p level for the key interaction is not significan t, the eta squared effect size wa Examination of the univariate F tests for Time x Group interactions for the four subscales revealed differences on the nutrition subscale between groups that were approaching signifi cance at p ost intervention ( F [ 1 92 ] = 3.59 p = 06 2 = .0 3 8) but did not reach the Bonferroni adjusted alpha of .0125 Examination of mean scores between groups show that those pa rticipants in the Intervention G roup (M=2.63 SD=0.56 ) reported higher (improved) le vels of nut rition health promoting behaviors at p ost intervention compared to those in the Control G roup at p ost intervention (M= 2.48, SD=0.51 ). In sum, the findings for Hypothesis 3 do not support this hypothesis but there is an indication that differences between groups for nutrition were approaching significance in the expected direction These res ults are summarized in Table 4 10 Hypothesis 4 Hypothesis 4 stated that participants in the IG, as compared to participants in the CG, would report greater increases in self reported patient empowerment (as measured by the Patient Empowerment Inventory) from pre intervention to post intervention To test this hypothesis an a nalysis o f c ovariance (ANCOVA) was performed. The dependent variable in this analysis was the pati ent empowerment post test score the independent variable was group assignment (Control versus Intervention), and the covariate was the patient empowerment pre test score Preliminary analyses we re conducted to assess assumptions of ANCOVA with regard to homogeneity of regression slopes and linearity and the se assumptions were met. Findings of the ANCOVA did not demonstrate differences in patient empowerment between groups at post intervention ( F [1, 92] = 1.17 p = .283 2 = 013. Hypothesis 4 was not supported by th is finding. The results from the ANCOVA to test Hypothesis 4 are summarized in Table 4 11.
101 Hypothesis 5 Hypothesis 5 stated that participants in the IG, as compared to participants in the CG, would evidence greater decreases in their systolic and diastolic blood pressure (as measured by nurses and pre med students trained in blood pressure measurement an d supervised by the nurses using standardized manual blood pressure cuff s at the data collection sessions) from pre intervention to post intervention To test Hypothesis 5 a repeated m easures m ultivariate analysis of v ariance ( MANOVA ) was blood pre ssure based on group assignment following the H ealth E mpowerment I ntervention This test was selected versus MANCOVA because there were not significant differences between groups at pre intervention and scores were relatively equivalent. The depen dent variabl es in this analysis were diastolic and systolic blood pressure and t he independent variables were Group (Intervention Group versus Control Group), Time ( p re intervention versus p ost intervention ) and Group x Time. Preliminary a nalyses were conducted to assess tests of assumptions for homogeneity of Variances) Both of these tests generated non significant results suggesting that assump tions of homogeneity of variance and equality of variance were satisfied. was not significant suggesting that the sphericity assumption was met. results of the MANOVA indicated significant difference s i n blood pressure by Group (i.e., Intervention and Control) ( F [2, 78] = 3.39 p = .039 2 = .080 ). A significant effect was also identified for Time (i.e. p re intervention and p ost intervention ) ( F [2, 78] = 4.11, p = .020, 2 = .095). Significant effects were not observed for Time X Group ( F [2, 78] = 2.13, p = 2 = .052)
102 Examination of the univariate F tests for Time x Group interactions for the two blood pressure subscales revealed differences on the subscale s between g roups that were significant at post intervention for diastolic blood pressure ( F [1, 79 ] = 4.24 p = 043 2 = .0 51 ) but not for systolic blood pressure ( F [1, 79 ] = .361 p = 549 2 = .0 05 ). To further explore Hypothesis 5 ANCOVAs were performed to determine if there were group differences in diastolic and systolic blood pressure at post intervention when controlling for pre intervention diastolic and systolic blood pressure, respectively. Results from the ANCOVA with dias tolic blood pressure as the dependent variable and pre intervention diastolic blood pressure as the covariate revealed significant group differences in diastolic blood pressure at post intervention even using a Bonferroni adjusted alpha of .025 ( F [1, 79] = 5.44 p = .022 2 = .066 ). An eta value of .0 66 suggests that approximately 6 .6 % of the variance in diastolic blood pressure is explained by group assignment. Examination of mean scores between groups revealed that those participants in the Int ervention G roup (M=74.41, SD=12.53 ) reported significantly lower levels of diastolic blood pressure at p ost intervention compared to those in the Control G roup at p ost intervention (M= 80.51, SD=13.67). Results from the ANCOVA with systolic blood pressure as the dependent variable and pre intervention systolic blood pressure as the covariate revealed no significant group differences in systolic blood pressure at post intervention ( F [1, 79] = 2.58 p = .112 2 = .032 ). In sum the results from the A NCOVAs to test Hypothesis 5 provide partial support for this hypothesis. These results are summarized in Table 4 12 Hypothesis 6 Hypothesis 6 stated that p articipants in the IG, as compared to participants in the CG, will evidence greater decreases in their blood glucose (BG), as measured by an average of three self
103 rea dings recorded one week following the Baseline Post Data Collection Sessions but prior to the first CS HEI Workshop and one week prior to the Post Data Collection Sessions (i.e., from pre intervention to post intervention ). To test this hypothesis, an analysis of covariance (ANCOVA) was performed. The dependent variable in this analysis was the average blood glucose score at post intervention the independent variable was group assignment (Control versus Intervention), and the covariate was the average blood glucose score at pre intervention Preliminary analyses were conducted to assess tests of assumptions for homogeneity of regression slopes and linearity, and the assumptions of ANCOVA w ere met. Significant differences were not observed ( F [1, 65] = .259 p 2 = .004). It was noted that participants in this study did not follow the instructions for recording blood glucose data, and many participants recorded this informatio n anywhere from 1 7 days of the week instead of the requested three days per week. Given the relative inconsistency in recording the blood glucose data f or three days of the week, non parametric statistical procedures were pursued to explore this hypothesis. Another advantage to using a non parametric procedure for analyzing blood glucose data is that these data are often skewed given the range of blood glucose measurements (i.e. anywhere from 75 to 250) that naturally occur with people with type 2 diabetes. In this study, the blood glucose data from the participants was slightly skewed in a positive direction To further explore Hypothesis 6 a Wilcoxon signed rank test was performed. The Wilcox on signed rank test is used to compare two related samples (often repeated measurements) when a normal distribution cannot be assumed. It tests the null hypothesis that the difference between blood glucose at pre intervention compared to post intervention equals zero. Analyzing Intervention Group and Control Group participant s separately, the null
104 hypothesis was retained for Control Group Participants and was rejected for Intervention Group Participants. Examination of mean scores for pa rticipants in the Intervention G roup demonstrate s a reduction in mean scores from p re intervention (M=135.7, SD=33.38 to p ost intervention (M=130. 3, SD=34.23) However, g roup differences cannot be determined by this analysis. Overall, Hypothesis 6 was not supported by the f indings The results of the ANCOVA and Wilcoxon signed rank test are summarized in Tables 4 13 and 4 14 respectively
105 Table 4 1. Descriptive Data for Psychosocial Variables (Pre and Post Intervention) Control Participants (PRE) Control Participants (POST) Intervention Participants (PRE) Intervention Participants (POST) Psychosocial Variable s of Interest N M SD N M SD N M SD N M SD Strain Questionnaire Physical Stress 43 61.02 18.71 43 57.77 18.48 51 60.35 18.90 51 52.73 17.65 Perceived Cultural Sensitivity Competence/Confidence 40 3.48 0.47 36 3.53 0.47 46 3.48 0.60 46 3.50 0.58 Respect/Communication 40 3.41 0.48 40 3.44 0.47 39 3.31 0.55 44 3.39 0.58 Sensitivity/ Interpersonal Skill 31 3.28 0.50 31 3.45 0.50 36 3.17 0.54 39 3.10 0.54 T CSHCI PF Total Score 31 3.39 0.44 31 3.42 0.38 36 3.29 0.52 39 3.35 0.48 T CSHCI PF with EM Correction Competence/Confidence 43 3.48 0.47 43 3.56 0.48 51 3.41 0.61 51 3.48 0.57 Respect/Communication 43 3.39 0.49 43 3.44 0.48 51 3.29 0.59 51 3.38 0.59 Sensitivity/ Interpersonal Skill 43 3.28 0.55 43 3.39 0.55 51 3.19 0.58 51 3.20 0.69 T CSHCI PF Total Score 43 3.31 0.50 43 3.43 .052 51 3.28 0.51 51 3.32 .047 Heal th Promoting Lifestyle Health Responsibility 43 2.67 0.58 43 2.71 0.62 51 2.59 0.53 51 2.66 0.56 Nutrition 43 2.62 0.48 43 2.48 0.51 51 2.59 0.53 51 2.63 0.56 Physical Activity 43 2.06 0.79 43 2.13 0.77 51 2.06 0.72 51 2.21 0.68 Stress Management 43 2.43 0.59 43 2.42 0.62 51 2.48 0.56 51 2.54 0.56 HPLP II Total Score 43 2.46 0.51 43 2.44 0.52 51 2.44 0.51 51 2.52 0.51 Patient E mpowerment PEI Total Score 43 46.84 6.45 43 48.91 5.79 51 46.94 6.93 51 47.69 7.17
106 Table 4 2. Descriptive Data for Health Variables (Pre and Post Intervention) Control Participants (PRE) Control Participants (POST) Intervention Participants (PRE) Intervention Participants (POST) Health Variable s of Interest N M SD N M SD N M SD N M SD Blood Pressure (BP) Diastolic BP 41 81.41 8.24 35 80.51 13.67 49 80.43 9.63 43 74.41 12.53 Systolic BP 41 138.49 14.05 35 139.14 16.64 49 134.50 12.69 43 131.25 14.88 Blood Glucose (BG) Weekly average BG reading 35 134.16 32.51 32 135.03 25.12 43 135.70 33.39 43 130.34 34.23 Note: Means for the entire sample at pre test are: Diastolic Blood Pressure (M=80.89, SD=8.99); Systolic Blood Pressure (M=136.34, SD=13.41); and Blood Glucose (M=138.81, SD=46.91).
107 Table 4 3. Descriptive Data for Psychosocial and Health Variables by Racial Group (Pre Intervention) Psychosocial Variable s African American Participants (N=68) Non Hispanic White Participants (N=3 4) Control N=33 Int N=35 Control N=10 Int. N=24 M SD M SD M SD M SD Strain Questionnaire Physical Stress 59.85 19.27 58.20 18.60 64.90 17.06 61.71 16.75 Cognitive Stress 11.52 4.02 10.82 5.42 15.30 5.08 14.79 6.76 Behavioral Stress 23.52 6.97 22.35 6.69 28.30 6.79 25.79 7.36 SQ Total Score 94.61 27.76 90.37 27.65 108.0 0 27.52 102.0 0 26.34 Cultural Sensitivity Competence/Confidence 3.53 0.46 3.47 0.56 3.33 0.48 3.22 0.68 Respect/Communication 3.41 0.46 3.31 0.56 3.39 0.56 3.17 0.51 Sensitivity/ Interpersonal Skill 3.34 0.44 3.25 0.50 3.06 0.65 2.92 0.61 T CSHCI PF Total Score 3.43 0.41 3.34 0.50 3.26 0.54 3.10 0.58 Health Promoting Lifestyle (HPLP) Health Responsibility 2.65 0.59 2.58 0.55 2.74 0.59 2.62 0.53 Nutrition 2.55 0.51 2.54 0.57 2.83 0.23 2.71 0.67 Physical Activity 2.11 0.75 2.12 0.67 1.90 0.94 2.05 0.82 Stress Management 2.44 0.61 2.49 0.49 2.41 0.54 2.52 0.52 HPLP II Total Score 2.45 0.53 2.44 0.50 2.49 0.46 2.49 0.57 Patient Empowerment PEI Total Score 47.3 6.70 46.23 6.49 45.30 5.58 49.07 8.17 Health Variable s African American Participants Non Hispanic White Participants Control N=30 Int. N= 31 Control N= 9 Int. N= 13 M SD M SD M SD M SD Blood Pressure (BP) Diastolic BP 81.7 8.67 79.9 8.41 80.4 7.40 82.43 10.85 Systolic BP 137.5 12.7 135.4 13.3 141.6 0 18.1 131.0 0 9.57 Blood Glucose (BG) Weekly Average BG 130.2 28.6 137.9 34.2 152 .6 35 .7 128.5 6 29.51
108 Table 4 4. Descriptive Data for Psychosocial and Health Variables by Racial Group (Post Intervention) Psychosocial Variable s African American Participants (N=68) Non Hispanic White Participants (N=24) Control N=33 Int. N=35 Control N=10 Int. N=14 M SD M SD M SD M SD Strain Questionnaire Physical Stress 54.88 18.41 51.54 16.66 67.30 16.02 54.57 18.85 Cognitive Stress 10.33 3.32 10.37 3.53 12.50 3.89 11.29 3.99 Behavioral Stress 20.85 6.35 20.29 4.72 27.30 6.39 22.36 7.74 SQ Total Score 86.06 25.89 82.20 21.29 107.1 0 23.99 88.21 27.94 Cultural Sensitivity Competence/Confidence 3.51 0.49 3.56 0.53 3.67 0.38 3.31 0.62 Respect/Communication 3.43 0.47 3.31 0.56 3.44 0.47 3.26 0.70 Sensitivity/ Interpersonal Skill 3.34 0.44 3.25 0.50 3.06 0.65 2.92 0.61 T CSHCI PF Total Score 3.43 0.36 3.41 0.42 3.39 0.44 3.16 0.59 H ealth Promoting Lifestyle Health Responsibility 2.65 0.59 2.66 0.49 2.93 0.69 2.68 0.76 Nutrition 2.35 0.48 2.59 0.53 2.92 0.35 2.73 0.67 Physical Activity 2.07 0.74 2.25 0.66 2.30 0.86 2.11 0.79 Stress Management 2.35 0.60 2.54 0.59 2.63 0.67 2.54 0.52 HPLP II Total Score 2.36 0.52 2.52 0.48 2.71 0.47 2.53 0.61 Patient Empowerment PEI Total Score 48.91 6.37 48.20 6.48 48.90 3.48 46.36 9.22 Health Variable s African American Participants Non Hispanic White Participants Control N= 2 6 Int N= 3 3 Control N= 9 Int. N= 1 2 M SD M SD M SD M SD Blood Pressure (BP) Diastolic BP 81.04 14.78 76.00 12.93 78.75 9.56 71.36 11.28 Systolic BP 139.9 16.97 134.0 0 14.19 136.5 0 16.27 126.0 0 15.96 Blood Glucose (BG) Weekly Average BG 125.2 26.02 132.2 37.07 15 1.2 47 .68 126.3 1 19.13
109 Table 4 5. Intervention Participants Demographics of Total Sample Participants N % N % N % Race/Ethnicity African American 11 73.3 68 73.9 18 69.2 White American 4 26.7 24 26.1 8 30.8 Total 15 100 92 100 26 100 Gender Male 1 6.7 21 23.1 7 27.0 Female 14 93.3 70 76.9 19 73.0 Total 15 100 91 100 26 100 Age Age 25 34 0 0.0 2 2.2 1 3.8 Age 35 44 1 6.7 5 5.4 2 7.7 Age 45 54 4 26.7 26 27.9 7 26.9 Age 55 64 6 40.0 27 29.0 8 30.8 Age 65 or older 4 26.7 33 35.5 8 30.8 Total 15 100 93 100 26 100 Marital Status Single living without partner 3 20.0 27 28.7 9 34.6 Single living with partner 0 0.0 5 5.3 1 3.8 Married living with partner 6 40.0 35 37.2 9 34.6 Divorced or Separated 3 20.0 12 12.8 2 7.7 Widow/Widower 3 20.0 15 16.0 5 19.3 Total 15 100 94 100 26 100 Education (highest level completed) Middle School 2 13.3 10 10.9 2 7.7 High school diploma 3 20.0 34 37.0 11 42.3 Some college 6 40.0 33 35.8 10 38.5 College degree 3 20.0 12 13.0 2 7.7 Graduate School 1 6.7 3 3.3 1 3.8 Total 15 100 92 100 26 100 Employment Full time Employment 1 7.1 9 9.8 1 3.8 Part time Employment 1 7.1 8 8.6 2 7.7 Retired/Unemployed 12 85.8 75 81.6 23 88.5 Total 14 100 92 100 26 100 Annual Household Income Less than $10,000 6 42.9 35 42.2 11 50.0 $10,000 $20,000 5 35.8 26 31.4 5 22.7 $20,001 $30,000 1 7.1 10 12.0 2 9.1 $30,001 $40,000 1 7.1 5 6.0 2 9.1 $40,001 $50,000 1 7.1 7 8.4 2 9.1
110 Table 4 5 C ontinued N % Total Sample N % N % Years Diagnosed with Diabetes 0 5 years 9 60.0 57 60.5 20 77.0 6 10 years 1 6.7 17 18.1 4 15.4 11 15 years 1 6.7 11 11.7 1 3.8 16 20 years 3 20.0 4 4.3 0 0.0 21 25 years 0 0.0 1 1.1 1 3.8 26+ years 1 6.7 4 4.3 0 0.0 Total 15 100 94 100 26 100 Type of Treatment Diet only 0 0.0 11 12.8 3 12.5 Medication only 5 35.7 20 23.3 9 37.5 Medication plus diet 3 21.4 16 18.6 5 20.8 Medication plus diet & exercise 6 42.9 39 45.3 7 29.2 Total 14 100 86 100 24 100 Frequency of BG Testing Never 0 0.0 10 11.2 2 8.3 1 day per week 4 26.6 10 11.2 2 8.3 2 days per week 1 6.7 11 12.3 6 25.0 3 days per week 0 0.0 9 10.1 5 20.8 4 days per week 2 13.3 5 5.6 0 0.0 5 days per week 0 0.0 4 4.5 1 4.2 6 days per week 1 6.7 3 3.4 1 4.2 7 days per week 7 46.7 37 41.7 7 29.2 Total 15 100 89 100 24 100 Religiosity Not at all religious 0 0.0 3 3.3 1 4.0 Somewhat religious 1 6.7 15 16.7 6 24.0 Religious 8 53.3 40 44.4 8 32.0 Very religious 6 40.0 32 35.6 10 40.0 Total 15 100 90 100 25 100 Spirituality Not at all spiritual 0 0.0 1 1.1 0 0.0 Somewhat spiritual 3 20.0 17 18.7 5 20.0 Spiritual 6 40.0 33 36.3 9 36.0 Very spiritual 6 40.0 40 43.9 11 44.0 Total 15 100 91 100 25 100 Frequency of Provider Visits 1 time annually 0 0.0 1 1.1 0 0.0 2 5 times annually 9 64.3 52 56.5 11 44.0 6 10 times annually 2 14.3 23 25.0 9 36.0 Over 10 times annually 3 21.4 16 17.4 5 20.0 Total 14 100 92 100 25 100
111 Table 4 6. Pearson Correlations among Major Variables for Control Participants (N=43) 1 2 3 4 5 6 7 8 9 10 10 11 12 13 14 1. HPLP Total 1.00 -------------2. Health Responsibility .826* 1.00 ------------3. Physical Activity .874* .567* 1.00 -----------4. Nutrition .746* .487* .543* 1.00 ----------5. Stress Management .897* .718* .736* 558 1.00 ---------6. Patient Empowerment .330* .452* .272 .014 .365* 1.00 --------7. Stress Total .304* .233 .197 .303* .315 .257 1.00 -------8. Physical Stress .288 .221 .168 .323* .290 .203 .963 1.00 ------9. Behavioral Stress .211 .165 .138 .208 .220 .226 .885 .74 7 1.00 -----10. Cognitive Stress .342* .250 .296 .191 .411 .431 .800 .661 .777 1.00 ----11. Prov. Cultural Sensitivity .331 .162 .251 .312 .408 .070 .227 .172 .236 .333 1.00 ---12. Competence/ Confidence .233 .163 .130 .191 .311 .129 .234 .187 .198 .346 .911 1.00 --13. Respect/ Communication .216 .201 .100 .144 .300 .168 .173 .125 .184 .259 .929 .812 1.00 -14. Sensitivity/ Interpersonal .388 .217 .316 .297 .489 .049 .107 .047 .125 .281 .933 .761 .799 1.00 Table 4 7. Pearson Correlations among Major Variables for Intervention Participants (N=51) 1 2 3 4 5 6 7 8 9 10 10 11 12 13 14 1. HPLP Total 1.00 -------------2. Health Responsibility .894 1.00 ------------3. Physical Activity .862 .660 1.00 -----------4. Nutrition .869 .732 .623 1.00 ----------5. Stress Management .904 .787 .710 .724 1.00 ---------6. Patient Empowerment .315 .379 .191 .271 .284 1.00 --------7. Stress Total .177 .063 .132 .191 .248 .158 1.00 -------8. Physical Stress .130 .015 .114 .115 .224 .154 .942 1.00 ------9. Behavioral Stress .244 .141 .178 .268 .287 .003 .853 .687 1.00 -----10. Cognitive Stress .287 .226 .135 320 .364 .149 .747 .548 .714 1.00 ----11. Prov. Cultural Sensitivity .179 .128 .250 .118 .109 .130 .143 .149 .025 .212 1.00 ---12. Competence/ Confidence .166 .108 .107 .140 .237 .148 .285 .275 .258 .226 .953 1.00 --13. Respect/ Communication .060 .045 .114 .028 .000 .223 .119 .068 .083 .075 .953 .849 1.00 -14. Sensitivity/ Interpersonal .153 .166 .190 .096 .064 .132 .074 .076 .028 .113 .975 .876 .907 1.00
112 Table 4 8. Multivariate Analysis of Variance Results for Provider Cultural Sensitivity Repeated Measures MANOVA (Dataset including missing values) Independent Variable F df p Group (Control/Intervention) .988 .360 3 .782 .012 Time (Pre to Post Intervention) .978 1.00 3 .371 .022 Time X Group .995 .244 3 .784 .005 Repeated Measures MANOVA (Dataset corrected using EM Method) Independent Variable F df p Group (Control/Intervention) .977 .3728 3 .538 .023 Time (Pre to Post Intervention) .980 .628 3 .599 .020 Time X Group .981 .580 3 .629 .019 Tests of Between Subjects Effects Independent Variable Dependent Variable F df p Group Comp/Conf .354 1 .553 .004 Resp/Comm .785 1 .378 .008 Sens/ Int .957 1 .330 .010 p < .05 Table 4 9. Analysis of Covariance Results for Physical Stress One way ANCOVA Ind. Variable Dep. Variable Covariate F df p Group Physical Stress (Post) Physical Stress (Pre) 2.99 1 .087* .032 p < .10
113 Table 4 10. Multivariate Analysis of Variance Results for Health Promoting Behaviors Repeated Measures MANOVA Independent Variable F df p Group (Control/Intervention) .952 1.12 4 .355 .048 Time (Pre to Post Intervention) .904 2.36 4 .060* .096 Time X Group .960 .937 4 .447 .040 Tests of Between Subjects Effects Independent Variable Dependent Variable F df p Grou p Physical Activity .578 1 .449 .006 Nutrition 3.59 1 .061* .038 Stress Management .761 1 .385 .008 Health Responsibility .000 1 .982 .000 p < .10 Table 4 11. Analysis of Covariance Results for Patient Empowerment One way ANCOVA Ind. Variable Dep. Variable Covariate F df p Group PEI Total (Post) PEI Total (Pre) 1.17 1 .283 .013 p < .10
114 Table 4 12. Multivariate Analysis of Variance Results for Blood Pressure Repeated Measures MANOVA Independent Variable F df p Group (Control/Intervention) .929 3.39 2 .039* .0 80 Time (Pre to Post Intervention) .905 4.11 2 .020* .095 Time X Group .948 2.13 2 .125 .052 Tests of Between Subjects Effects Independent Variable Dependent Variable F df p Group Systolic (Post) .369 1 .549 .005 Diastolic (Pre) 4.23 1 .043* .051 One way ANCOVA Ind. Variable Dep. Variable Covariate F df p Group Systolic (Post) Systolic (Pre) 2.58 1 .112 .032 Diastolic (Post) Diastolic (Pre) 5.44 1 .022* .066 p < .05 Table 4 13. Analysis of Covariance Results for Blood Glucose One way ANCOVA Ind. Variable Dep. Variable Covariate F df p Group BG Average (Post) BG Average (Pre) 2.59 1 .612 .004 Table 4 14. Non Parametric Test Results for Blood Glucose Wilcoxon Signed Rank Test Group Null Hypothesis Significance Decision Intervention The median of differences between BG Pre and BG Post equals zero. .033* Reject the null hypothesis. Control The median of differences between BG Pre and BG Post equals zero. .063 Retain the null hypothesis. p < .05
115 CHAPTER 5 DISCUSSION The present study tested the impact of a Culturally Sensitive Health Empowerment Intervention (CS HEI) informed by major aspects of the Patient Centered Culturally Sensitive Health Care (PC CSHC) Model. This study specifically sought to test the effects of the CS HEI on the most salient aspects of the PC CSHC Model, namely perceived provider cultural sensitivity, patient empowerment, physical str ess, health promoting behaviors, blood glucose levels, and blood pressure levels. This intervention was tested with adult patients who have type 2 diabetes. This chapter presents the summary and interpretation of results from this study, limitations of the study, directions for future research, implications for counseling p sychologists and conclusions Summa ry and Interpretation of Results This study is one of the few studies that have sought to explore the impact of a health empowerment intervention on the psychosocial and health outcomes of patients with type 2 diabetes The intervention tested, which is called the Culturally Sensitive Health Empowerment Intervention (CS HEI), is novel in that it is informed by major aspects of a culturally sensitiv e health care model, the Patient Centered Culturally Sensitive Health Care Model. T he CS HEI is specifically designed to reduce physical stress increase perceived provider cultural sensitivity, promote patient empowerment, and increase health promoting be haviors as well as improve health outcomes among patients with type 2 diabetes. Importantly, the sample of patients with type 2 diabetes included in this study was racially diverse and from lower income households, and is highly representative of the demog raphic characteristics of those most at risk for developing type 2 diabetes in the United States (CDC, 2010). The specific hypotheses tested, the
116 results from the analyses to test each of the hypotheses, and interpre tations of these results are presented i n the following sections. Hypothesis 1 Hypothesis 1 stated that participants in the IG, as compared to participants in the CG, would r eport greater increases in attitudes (as measured by the Tucker Culturally Sensitive Health Care Inventory Provider Form) from pre intervention to post intervention. This hypothesis was not supported by the fi ndings Significant group differences in the scores on the three T CSHC P I subscales used as measures of perceived cultural sensitivity (i.e., Competence/Confidence subscale Respect/Communication subscale and Interpersonal Skill/Sensitivity subscale) were not f ound There are a few possible explanations of this finding. Perhaps, learning about what constitutes PC CSHC in the CS HEI enabled Intervention Group participants to be informed consumers of their health care and be more evaluative (and critical) of thei r health care experiences After all, PC CSHC emphasizes a shift from providers being the experts and self reporting their cultural sensitivity to patients being the experts with regard to determining whether or not they experience their health care as cultural ly s ensitive (Tucker et al., 2003). Educating participants and providing them with an opportunity for dialogue about their health care experiences at the workshops may have helped participants in the IG clarify their own definition and expectations of what constitutes culturally sensitive health care and perhaps realize that the care they are receiving is not culturally sensitive Lastly, patient centered culturally sensitive health care and perceptions of provider cultural sensitivity are only beg inning to be empirically studied, thus it remains unclear if the lack of findings are consistent with previous studies. Theoretical research has highlighted the
117 pathways between perceptions of provider cultural sensitivity and important health behaviors an d outcomes (Tucker et al., 2010), but more research is needed in this area. Previous type 2 diabetes studies have demonstrated positive associations between satisfaction with health care providers and improvements in diabetes management (Rubin et al., 2006 ). Hypothesis 2 Hypothesis 2 stated that p articipants in the IG, as compared to participants in the CG, would report greater decreases in their reported physical stress (as measured by the Strain Questionnaire) from pre in tervention to post intervention. Physical stress was the primary subscale of the Strain Questionnaire that was hypothesized to change because it had been identified in previous studies testing the pathways of the PC C SHC Model (Tucker et al., 2010). The present study investigated whether the physical stress among the IG as compared to the CG would be significantly lower among the IG at post intervention. The overall findings from the analysis of c ovariance ( ANCOVA ) to test this hypothesis approach ed significance ( p =.087) and showed that self reported physical stress was lower for IG participants as compared to the CG at post intervention. This finding provides tentative support for Hypothesis 2. Many of the items on the physical stress subscale of the S train Q uestionna ire pertain to somatic (physical) manifestations of stress, so it is reasonable to expect that there is a link between these symptoms of stress and engagement in health promoting behaviors. In fact, b eing more physically active and eating healthier may co ntribute to reductions in symptoms of physical stress. Recent research conducted in 2011, highlights the shift in medical attitudes to the attitude that reducing stress may b e more influential for preventing obesity than physical activity and diet (Foss & Dyrstad, 2011) The complimentary relationship between health promoting behaviors, health outcomes, and stress management i s being increasingly studied in health interventions.
118 P revious diabetes intervention s have demonstrated success in modifying stress in patients with type 2 diabetes and that teaching patients str ess management is associated with sustaining positiv e changes in blood glucose over time (Surwit et al., 2002) and improved coping related to diabetes management (Samuel Hodge et al., 2008 ). Wi th regard to the PC CSHC Model, physical stress has been associated with treatment adherence and engagement in health promoting lifestyle behaviors. The CS HEI interventions aimed to reduce physical stress by providing psychoeducation offering small group discussions of the motivators/barriers of engaging in health promoting behaviors, and instructing participants in progressive muscle relaxation and visualization The findings from the present study are consistent with previous studies that have demo nstrated success in reducing stress in patients with type 2 diabetes. However, in the present study the reduction in physical stress in association with the CS HEI was approaching significance (p= .05 .10 range) but not statistically significant. Another possible explanation for the lack of statistically significant findings for differences in physical stress is the small sample size in this study. Hypothesis 3 Hypothesis 3 stated that p articipants in the IG, as compared to participants in the CG, would report greater increases in their engagement in health promoting behaviors (as measured by four subscales of the Health Promoting Lifestyle Inventory II (i.e., the Health Responsibility, Exercise, Nutrition, and Stress Management subscales) from pre in ter vention to post intervention. Hypothesis 3 was partially supported by the findings. The overall multivariate analysis of variance ( MANOVA ) did not yield significant differences by Group; however, there were significant effects for Time. This finding is pro bably best explained by the Hawthorne Effect The Hawthorne Effect is a phenomenon that occurs when participants change a particular
119 behavior because they know they are being studied, even prior to any interv ention that would explain the be h av ior change. The Hawthorne Effect has been studied in relation to health interventions and has been found to produce changes in health behavior s (McCarney et al., 2007). A group difference in nutrition at post intervention was approachi ng significance; that is, the participants in the IG, but not for participants in the CG suggesting improvement in nutrition following the CS HEI. Although not impressive in statistical terms, cha nges in self reported lifestyle intervention behaviors, such as nutrition, are quite cumbe rsome to modify Previous studies have found that patients with type 2 diabetes report that changes in lifestyle behaviors (specifically diet and exercise) are the most challenging aspect of diabetes management, compared to medication adherence and blood g lucose monitoring (Glasgow et al., 2001; DiMatteo, 2004 ) Physical activity means on the HPLP II were consistently lower than the other HPLP II subscale means in this study which is consistent with previous research on the difficulty associated with enga ging in physical activity ( Glasgow et al., 1997, 2001 ). Other type 2 diabetes studies have found that patients with type 2 diabetes from low income households identify transportation, access to safe parks and recreation, and cost of purchasing healthy food s as barriers that frequently prevent them from eating a healthy diet and exercising regularly (Metghalchi et al., 2007). Yet, r esearch has demonstrated that changes in health promoting behaviors, specifically diet and exercise, are the most effective at pr eventing complications of type 2 diabetes ( ADA, 2011 ) and have been found to reduce the rate of developing type 2 diabetes by 58% in people who have borderline/pre diabetes (Knowler et al, 2002).
120 The findings for group differences approaching significance for nutrition are likely due to the emphasis placed on this behavior in the CS HEI. There was an hour long presentation on how to read n utrition labels, demonstrations on how to prepare healthy meals and nutritionists and physicians spoke on panels regard ing nutrition. This material was presented in an understandable and simple manner with demonstrations on easy ways to apply fractions to understand serving sizes and the calories, sodium, fat, and cholesterol per serving. Other type 2 diabetes studies have found that modifying food pyramids and nutritional information in ways that are culturally and educationally relevant produces changes in dietary behaviors and weight ( Cramer et al., 2007). The findings that emerged are consistent with previou s interventi on research that have had some success in m odifying nutritional behaviors in patients with type 2 diabetes (Cramer et al., 2007; Mayer Davis et al., 2004). However, in the present study the differences in nutrition following the CS HEI were approaching sig nificance (p= .05 .10 range), but not statistically significant. One explanation for the lack of statistically significant findings for differences in nutrition is the small sample size in this study and the difficulties in modifying health promoting behav iors mentioned earlier Hypothesis 4 Hypothesis 4 stated that p articipants in the IG, as compared to participants in the CG, would report greater increases in self reported patient empowerment (as measured by the Patient Empowerment Inventory) from pre in tervention to post intervention. There were no group differences observed for patient empowerment at post intervention Both groups had non significant but slightly increased ratings of patient empowerment from pre intervention to post intervention. The Ha wthorne effect may be applied here to explain why participants in both
121 groups may have reported slightly improved empowermen t (McCarney et al., 2007) Specifically, as a result of participating in a Culturally Sensitive H ealth E mpowerment Intervention and rating patient empowerment items when completing the PEI, participants in both groups may have changed some behaviors to take greater control in patient provider interactions care provider more frequently. Another possible explanation for the lack of findings is that this measure was constructed by the research team and has not been rigorously tested and refined compared to other measures in this study. For the present study, the C ronbach alpha coefficient of the PEI wa s found to be .72 which was lower than the internal consistency estimates of the other measures used in this study an d is on the cusp of what is considered acceptable for reliability standards (Pallant, 2004). Much of the research that has been conducted on patient empowerment with type 2 diabetes has involved testing intervention models that are empowerment oriented such as the Chronic Care Model (Mayer Davis et al., 2004). These previous empowerment models have been su ccessful with regard to modifying health outcomes (such as blood glucose), but empowerment was not measured as a variable in these studies. Thus, it is unclear whether the lack of observed changes in patient empowerment in the present study is consistent w ith findings in past research or is due in part to the PEI not being a reliable and valid measure of empowerment. Hypothesis 5 Hypothesis 5 stated that p articipants in the IG, as compared to particip ants in the CG, would evidence greater decreases in their systolic and diastolic blood pressure (as measured by a trained professional using a standardized manual blood pressure cuff at the data collection sessions) from pre intervention to post interventio n. Hypothesis 5 was partially supported
122 Compared t o CG participants, IG participants had significantly lower diastolic blood pressure following participation in the CS HEI. However, such group differences were not found for systolic blood pressure. Since systolic and diastolic blood pressure readings are measuring slightly different functions, it is important to interpret these findings with this in consideration Systolic blood pressure (the higher number) refers to the pressure exerted w diastolic blood pressure (the lower num ber) refers to the pressure exerted against the arterial walls. Generally speaking, it is a better indicator of health to have diastolic blood pressure in a normal range with high systolic blood pressure versus having normal systolic blood pressure and high diastolic readings. Lower diastolic blood pressure typically suggests there is less plaque accumulated in the arteries, and thus less arterial pressure (NICE, 2006) Following participation in the CS HEI, IG participants were shown to have significan tly reduced average diastolic blood pressure as indicated by a change in diastolic blood pressure scores from 80 to 74. This represents both a statistical change and a meaningful clinical change from the pre hypertensive category to a normal range ( NIH, 20 11) In patients with type 2 d iabetes, a significant decrease in diastolic blood pressure often results from reductions in sodium intake adopting a healthier diet and reductions in stress ( NICE, 2006 ). These findings are consistent with the observed impr ovements in nutrition self reported by IG participants in this study The reductions in physical stress reported by IG participants in this study may be related to the observed reductions in diastolic blood pressure because stress influence s diastolic readings as well There is a well documented literature on the relationship between stress and blood
123 pressure in people with type 2 diabetes and cardiovascular disease ( ADA, 2007 ). Blood pressure can fluctuate as a result of more temporary chan ges, such as elevated stress (NIH, 2011). The finding of reduced diastolic blood pressure in the present study highlights the importance of including blood pressure as a health outcome variable in type 2 diabetes intervention studies because it is a valua ble indicator of type 2 diabetes management and a n indicator of the risk for developing cardiovascular complications (ADA, 2007). Many studies do not include blood pressure as a health outcome in type 2 diabetes studies and solely focus on blood glucose (M ayer Davis et al., 2004) but those studies that have included this variable have found positive results especially when there is a stress reduction /stress management component included (Surwit et al., 2002). Hypothesis 6 Hypothesis 6 stated that p articipants in the IG, as compared to participants in the CG, would evidence greater decreases in their blood glucose (as measured by an average of three self readings recorded one week prior to the data collection sessions) from pre intervention to post i ntervention. Hypothesis 6 was not supported by the findings in this study It is noteworthy that participants self recorded their blood glucose readings inconsistently and did not follow instructions for recording their BG levels three times per week The lack of observed changes for blood glucose are not entirely consistent with previous ty p e 2 diabetes intervention studies which often do find changes in this health outcome (Mayer Davis et al., 2004; Cramer et al., 2007). However, the lack of observed changes in blood glucose is consistent with national findings that only 7.3% of adults with type 2 diabetes have met the ADA Standards for blood glucose management (ADA, 2007). Specifically, the recommended
124 blood glucose (HbA1C) was only met by 37% of ind ividuals examined and by a mere 17% of African Americans examined at that time (Saydah, Fradkin, & Cowie, 2004). P revious research examining type 2 diabetes management in people from low income backgrounds have found that financial resources often are a barrier to blood glucose monitoring and management ( Abrams et al., 2003 ). Specifically, many adults with type 2 diabetes from low income households do not purchase enough blood glucose monitoring supplies to enable them to test their blood glucose as recom mended by the ADA Standards. Factors that previous research studies have found to predict lower levels of self moni toring of blood glucose include living in a lower socioeconomic neighborhood, older age, African American racial status, and poor blood gluco se control (Abrams et al., 2003). Th ese research findings and the lack of follow through in recording blood glucose levels as requested in the present stu dy underscore the importance of having on site measurement of blood glucose by trained professionals in future similar research. Limitations of the Present Study This research had several limitations which must be factored into the interpretation of the findings This study was conducted using a pre post intervention data collection design with post da ta collection occurring two months after the CS HEI, and is therefore not a longitudinal study that could determine the presence of long term effects of the intervention on health behaviors and outcomes The a ttrition rate in this study is also a limitation as it was 30%. However, attrition is often a limitation in research studies with racial ly/ethnically diverse community members and with persons from low income households ( Janson, Alioto, & Boushey, 2001 ) with attrition rates typically over 40% for African Americans and non Hispanic Whites from low income groups (Jansen et al., 2001). The attrition rate in this study may have been influenced by the fact that all
125 of the participants had a diagnosis of type 2 diabetes. Livi ng with diabetes poses additional challenges with mobility, transportatio n, scheduled health care visits and unanti cipated periods of feeling ill. In this study, those who continued in participation differed at pre intervention from those who discontinued participation in the study. Specifically, participants who continued reported better health promoting lifestyle behaviors overall as well as better nutrition and stress management at pre intervention compared to those who discontinued participation. Futur e studies may want to address characteristics that may contribute to attrition, such as baseline stress scores or current health promoting behaviors. It may be useful to interview participants who discontinue participation to learn about the barriers that prevented them from continuing with the study. Although such interviews were not conducted in this study, future health intervention studies may benefit from including an exit interview. Limited generalizability of the findings from this st udy is also a st udy limitation. Diversity o f participants in this study was restricted to primarily African Americans and non Hispanic White s, and did not include Latinos, Native Americans, and Asian Americans which are other groups that experience high rates of type 2 d iabetes and are increasingly affected by our alth disparities ( CDC, 2007 ). There was also a higher proportion of women in this study compared to men The educational and socioeconomic characteristics of this sample were relatively homogenous with most participants reporting low er household income s (i.e. < $20,000) and only a high school level of education, so it is unclear if these findings apply to people with higher socioeconomic status and education. Geographic diversity was restricte d to t he Southeast region of the United States. The psychosocial and health outcome variables emphasized in this study were selected because they correspond to the most important aspects CSHC Model. Using the
126 PC CSHC Model was one approach to desi gning and testing the effectiveness of a theoretically based Culturally Sensitive Health Empowerment Intervention for adults with type 2 diabetes. Yet there are myriad other variables that are also important to explore in future diabetes interv ention stud ies For examp le, cholesterol, weight loss depression, attachment style, self efficacy, fruit and vegetable consumption, social support and health related knowledge and attitudes are supported by the diabetes research literature as important areas of intervention T he structure and delivery of workshop content of the PC CSHC based Culturally Sensitive Health Empow erment Interventions may be considered a study limitation because of the breadth of the workshop materials, activitie s, and topics covered For example the breadth of the CS HEI Workshops may hav e covered more than the most necessary elements of the intervention needed to produce behavior changes. Findi ngs from this study are a preliminary step in identifying and narrowing the effects of this type of intervention. Lastly, some might argue that it is unclear which aspect of the CS HEI ( W orkshop I or W orkshop II ) is more important for producing health behavior changes given that each workshop focused on distinct content, albeit both were delivered in a patient centered culturally sensitive manner that emphasized patient empowerment and the key elements of the PC CSHC Model The research design (i.e. by delivering health information in a cultur ally sensitive manner and empowering participants to be more active in the patient provider interaction and in engaging in health promoting behaviors ) did not include a mechanism for distinguishing the intervention effects attributed to receiving a cultura lly sensitive intervention compared to the intervention effects of receiving health related knowledge, if such a distinction exists. For example, th e research design does not clarify if similar results would have occurred if the health knowledge was simply p resented in a traditional manner It also remains unclear if there is a dosage effect;
127 specifically, whether participants who att ended only one workshop experienced similar results because all 51 of the IG participants included in th e data analyses for this study attend ed both Workshops of the CS HEI. Specifically, post intervention data is not available for participants who dropped out of the study. Future Directions for Research The findings of this research underscore the potentia l benefits of conducting culturally sensitive health empowerment intervention s with low income African American and non Hispanic White adults with type 2 diabetes These potential benefits include possibly improving blood pr essure, physical stress, and nutrition Future research is needed to identify cost effective, intervention stra tegies for targeting modifiable health behaviors and outcomes for people with type 2 diabetes This study did not entirely support the use of the PC CSHC Model in future stud ies with patients with type 2 diabetes. The study tested the most important aspects of the PC CSHC Model including perceived provider cultural sensitivity, physical stress, empowerment, engagement in health promoting behaviors, and health outcomes. Yet, ma ny of the hypothesized changes were not supported by the findings. For instance, the crux of the model (perceived provider cultural sensitivity) did not change following the intervention. Thus, it is unclear why some aspects of the model, such as reduction in physical stress and improvement in nutrition were noted in the absence of changes in perceived cultural sensitivity and empowerment. More research is needed to determine the usefulness of the PC CSHC Model in informing such future research and more re fined measurement instruments for empowerment and cultural sensivity are needed to accurately assess the PC CSHC Model F uture re search on the role of physical stress in the development and maintenance of type 2 diabetes is also needed. Based on the findings from this study, there is potential for reducing
128 physical stress through health empowerment interventions based on the PC CSHC Model. There is also a need for increased understanding of the role of physical stress in the maintenance and development of type 2 diabetes R esearch is beginning to highlight how stress contributes to obesity (Foss & Dyrstad, 2011). I t would be interesting to explore the relationship between physical stress and blood pressure, two variables t hat did change following the intervention tested in the present study It would also be fascinating to see if baseline stress affects health outcomes in other areas important for patients with type 2 diabetes (i.e., weight, exercise). Lastly, m ore research is needed in the area of understanding the significance of culturally sensitive health care in promoting health behaviors and positive health outcomes among patients with type 2 diabetes. Preliminary studies have found that cultural competenc e/sensitivity influences trust, patient satisfaction, patient provider communication, and treatment adherence ( Tucker et al., 2010 ). These variables may be critical for successful type 2 diabetes management. CSHC Model offers a preliminary expl anation of the potential links between provider cultural sensitivity and health outcomes ; yet research is needed to test this model with various patient groups, particularly patient groups with type 2 diabetes. Future research in culturally sensitive he alth care may need to distinguish what is deemed culturally sensitive by persons of different racial/ethnic minority and socio economic groups. Tucker and colleagues in their original study of low income African American, non Hispanic White and Hispanic focus group participants found that many (i.e., 80%) of the themes identified as culturally sensitive by participants overlapped across racial/ethnic groups ( Tucker et al., 2003 ). Twenty percent of themes varied by racial/ethnic group; for example, Hispani c participants emphasized items related to being sensitive to language barriers. It may also be fruitful to investigate if educating participants about PC CSHC has any effect in producing
129 changes in how participants actually interact with providers or expe rience their health care. Perhaps, education is a positive step in the direction of empowering patients to identify and communicate their health care expectations to providers I t may be useful to design minority specific interventions based on racial/eth nic and gender specific health theories, such as the Sojourner Syndrome and Strong Black Women Syndrome previously described in chapter 2 to explain health risks for African American women (Lekan, 2009) Designing health interventions based on these theori es provides a framework for testing race specific theories versus more broad, inclusive culturally sensitive health care theories. This study was not able to test race specific hypotheses and race specific differences were not noted at pre intervention bet ween participants on the measures. However, some studies have identified different mechanisms of change in health behaviors and outcomes based on racial/ethnic status (Tucker et al., 2010). For example, in a path analysis testing the pathways of the PC CSH C Model, Tucker and colleagues found that trust was a more important predictor of engagement in a health promoting lifestyle and medication adherence for African Americans compared to non Hispanic Whites. F uture studies might want to explore and test interventions based on specific racial/ethnic theories. Implications for Counseling Psychologists T his study has important implications for counseling p sychologists A particularly important implication of this study is that counseling psychologists can use their knowledge of cultural sensitivity, stress, empowerment, and research to develop and test interventions to foster health promoting behaviors and health outcomes among diverse adults from low income households who have type 2 diabetes.
130 Fortunately, counseling p sychologists have already begun to redefine their professional identity to include specializations in working with people with chronic health cond itions. Since counseling p sychologists have begu n t o explore the application of counseling p sychology to better understa nd physical health Specific health issues that have been studied include psychological features of chronic back pain cancer HIV/AIDS, and gastrointestinal diseases ( Werth et al., 2008; Tallman, Altmaier, & Garcia, 2007 ). Counseling p sychology research programs have also expanded to apply principles of counseling p sychology to improve patient provider communication and to define patient centered culturally sensitive health care ). T he benefits of using counseling psychology to help people adjust to living with a chronic health condition are becoming increasingly recognized and more valued in our society and profession now has a section devoted to Counseling Health Psychology with the following mission : The Counseling Health Psychology Section is dedicated to the science and practice of counseling psychology in health related contexts either through re search with medical, rehabilitation, or related populations, direct service to individuals across their lifespan (e.g., prevention, adjustment to and recuperation from illness, healthy lifestyle changes, psychological concomitants of medical illnesses), te aching and training of graduate students or the education of other health care professionals, or involvement with health policy. (APA, 2011 retrieved from www.apa.org ) Counseling p sychologists are well suited to use their knowledge of cultural sensitivity interventions; and (b) apply their understand ing of PC CSHC, stress depression/anxiety, and suicide to people with chronic health issues (often in hospital and health care facilities) whose psychological needs are sometimes overlooked/underemphasized. T he research findings of this study specifically highlight how counse ling p sychologist s can use their knowledge of cultural sensitivity, competence, and awareness in addition to their
131 knowledge of stress management and empowerment to help adults with typ e 2 diabetes possibly improve their reported nutrition, reduce their bl ood pressure and reduce reported physical stress. Specifically, counseling p sychologist s can design health interventions based on PC CSHC or can apply parts of PC CSHC in their individual and/or group clinical work. To demonstrate what this might look like in practice, Tucker, Daly, and Herman (2010) coined (CMHC) T he traditional definition of multicultural counseling is using knowledge, skills, awareness, and exp er iences for effectively counseling culturally diverse clients (S ue et al., 1998). In CMHC the traditional definition of multicultural counseling is broadened and it involves using multicultural counseling principles to address the physical hea lth problems of clients with t he recognition that physical and psychological issues are often intertwined CMHC is very useful with culturally and socioeconomically diverse persons where cultural barriers may impede communication, trust, and adherence to the r ecommendations of providers. For example, it may involve a counseling psychologist talking openly with a client about his/her frustration of feeling disempowered and/or discriminated in the health care process, and working to build a tru sting and collabora tive relationship to help the client become mor e empowered in managing his/her health condition Conclusion s By the year 2050, it is projected that 1 in 3 Americans will be diagnosed with type 2 diabetes, and m any of these individuals will likely be from racial/ethnic minority and /or low income backgrounds (CDC, 2010 ). It is imperative for the health and financial stability of our nation that interventions are identified to reduce the incidence of type 2 diabetes. The importance of culturally sensitive he alth interventions to reduce type 2 diabetes related health disparities are increasingly being designed and implemented (Mayer Davis et al., 2004 ; Tucker et al., 2007 ).
132 I dentifying ways to increase engagement in health promoting behaviors an d improve healt h outcomes is essential for improving the quality of life of peo ple living with type 2 diabetes. Patient Centered Culturally Sensitive Health Care offers a framework for intervening with culturally diverse adults with type 2 diabetes from low income househ olds Culturally sensitive health empowerment intervention efforts off er promise in reducing complications associated with type 2 diabetes by reducing diastolic blood pressure reducing physical stress, and improvements in self reported nutrition C ounseling p sychologis ts have a wide repertoire of skills and multicultura l awareness that is well suited to empower clients and patients with type 2 diabetes to liv e healthier lives
133 APPENDIX A : PATIENT DEMOGRAPHIC AND HEALTH DATA QUESTIONNAIRE (PATIENT DHDQ) Directions: Please answer the questions below by filling in the blank or shading in the circle next to the answer you choose like this: 1. What is your gender? Male Female 2. What is your age ? Age 18 24 Age 45 54 Age 25 34 Age 55 64 Age 35 44 Age 65 or older 3. Which of the following best describes you? Single, living without a partner Married, not living with a partner Single, living with a partner Divorced or separated Married, living with a partner Widow/Widower 4. Please shade in one or more of the circles below that best describes your race/ethnicity: African American/Black American Hispanic/Hispanic American/Latino(a) White/European American Other American Indian/Native American (please specify:_________________) Asian/Asian American/Pacific Islander 5. If Hispanic/Latino or Asian/Asian American, please shade in one or more of the circles that best describes your ethnicity: If Hispanic/Latino (a) Shade Below: If Asian/Asian American Shade Below: Cuban/Cuban American Chinese/Chinese American Mexican/Mexican American/Chicano(a) Vietnamese/Vietnamese American Puerto Rican Filipino/Filipino American Other Hispanic/Latino(a) (please specify: _____________________) Other Asian (please specify: _____________________)
134 6. What is the highest level of education that you have completed? Elementary School Some College/Technical School Middle/Junior High School College High School Graduate School 7. What is your employment status? Work Full Time Work Part Time Do Not Work 8. What is your yearly household income? Less than $10,000 $30,001 40,000 $10,000 20,000 $40,001 50,000 $20,001 30,000 $50,001 60,000 9. How religious are you? Not At All Religious Religious Slightly Religious Very Religious Somewhat Religious 10. How spiritual are you? Not At All Spiritual Spiritual Slightly Spiritual Very Spiritual Somewhat Spiritual 11. How often do you pray/meditate? Never Often Rarely Very Often Sometimes 12. Where do you usually receive your health care services? Health Care Center/Clinic Private Practice Hospital Other Health Department (please specify: ________________)
135 13. What is the gender of the primary health care provider that you see most often? Male Female 14. What do you think is the age of the health care provider that you see most often? Age 18 24 Age 45 54 Age 25 34 Age 55 64 Age 35 44 Age 65 or older 15. What is the race/ethnicity of the health care provider that you see most often? African American/Black American Hispanic/Latino(a) White/European American Other American Indian/Native American (please specify:________________) Asian/Asian American 16. H ow many times each year do you see the health care provider that you see most often? 1 time 6 to 10 times 2 to 5 times Over 10 times 17. Where were you born? In the United States In Another Country 18. Where were your parents born? In the United States In Another Country 19. Do you have children? Yes (How many? _________) No 20. If you do NOT have children, please move on to Question 21. Do your children live with you? Yes No
136 21. Where in the United States is your community located? Northeast ( Pennsylvania to Maine) Southeast ( West Virginia to Texas) Midwest ( Ohio to Kansas) West (New Mexico to California, including Hawaii and Alaska) 22. In general, how would you describe your health? Excellent Fair Very Good Poor Good 23. What is your height? _______________ feet and _______________ inches 24. What was your weight the last time you were weighed? _______________ pounds 25. What type of Diabetes have you been diagnosed with? Type 1 Diabetes Type 2 Diabetes Gestational Diabetes (Diabetes that develops during pregnancy) 26. When were you told that you have diabetes? ________ years and ________ months ago 27. H ow is your diabetes treated? Diet Only Medication Plus Diet Medication Only Medication plus Diet and Exercise 28. How often (if ever) per week do you check your blood glucose level? One Day Per Week Five Days Per Week Two Days Per Week Six Days Per Week Three Days Per Week Seven Days Per Week Four Days Per Week Never
137 APPENDIX B: TUCKER CULTURALLY SENSITIVE HEALTH CARE PROVIDER INVENTORY PATIENT FORM (T CSHCPI PF) Directions: Please fill out the survey using the following steps: Take a moment to think about your experiences with the provider you see most often at your health care center or office. This provider might be a doctor, a nurse practitioner, or some other health care provider. Now please rate how much you agree that this provider shows each health care characteristic or behavior listed below ase shade in the circles below like this: Strongly Disagree Disagree Agree Strongly Agree THE HEALTH CARE PROVIDER I SEE MOST OFTEN WHEN I VISIT MY HEALTH CARE CENTER OR OFFICE: 1. Is honest and direct with me. 2. Is dedicated to her or his work. 3. Enjoys what he or she is doing. 4. Is well educated. 5. Is knowledgeable about medicine. 6. Knows what he or she is doing. 7. Is confident in his or her abilities. 8. Is right about why I am sick. 9. Seems interested in my problem. 10. Takes my concerns seriously. 11. Does not question the truth or accuracy of what I am feeling. 12. 13. Does not talk down to me. 14. Tries to communicate with me. 15. Tries to educate me. 16. Takes all my concerns seriously even if he or she does not consider
138 them to be serious. 17. Does not embarrass me in private or public. 18. Prescribes medicine only when he or she is sure of my illness. 19. Does not make me wait long. 20. Follows up on my visits. 21. Lets me know about illnesses and diseases common among people of my race/ethnicity. 22. Prepares me for the next steps in treating my illness. 23. Understands my financial situation. 24. Shows appreciation for me and all of his or her other patients. 25. Shows care and concern for my child/children. 26. Is respectful of my religious beliefs. 27. Understands my culture. Please list any additional comments or suggestions about your experience regarding the cultural sensitivity of your health care experience on the lines provided below:
13 9 APPENDIX C: HEALTH PROMOTING LIFESTYLE PROFILE II (HPLP II) Directions: This questionnaire contains statements about your present way of life or personal habits. Please respond to each item as accurately as possible and try not to skip any item. Indicate how often you engage in each behavior by shading in the circl e beneath the response you choose like this: Never Sometimes Often Routinely 1. Choose a diet low in fat, saturated fat, and cholesterol. 2. Report any unusual symptoms to a physician or other health professional. 3. Follow a planned exercise program. 4. Get enough sleep. 5. Limit use of sugars and food containing sugar (sweets). 6. Read or watch TV programs about improving health. 7. Exercise vigorously for 20 or more minutes at least three times a week (such as brisk walking, bicycling, aerobic dancing, using a stair climber). 8. Take some time for relaxation each day. 9. Eat 6 11 servings of bread, cereal, rice, or pasta each day. 10. Question health professionals in order to understand their directions. 11. Take part in light to moderate physical activity (such as sustained walking 30 40 minutes five or more times a week). 12. Accept those things in my life which I cannot change. 13. Eat 2 4 servings of fruit a day. 15. Take part in leisure time (recreational) physical activities (such as swimming, dancing, bicycling).
140 16. Concentrate on pleasant thoughts at bedtime. 17. Eat 3 5 servings of vegetable each day. 18. Discuss my health concerns with health professionals. 19. Do stretching exercises at least 3 times per week. 20. Use specific methods to control my stress. 21. Eat 2 3 servings of milk, yogurt, or cheese each day. 22. Inspect my body at least monthly for physical changes/danger signs. 23. Get exercise during usual daily activities (such as walking during lunch, using stairs instead of elevators, parking my car farther away from destination, and walking). 24. Balance time between work and play. 25. Eat only 2 3 servings from the meat, poultry, fish, dried beans, eggs, and nuts group each day. 26. Ask for information from health professionals about how to take good care of myself. 27. Check my pulse rate when exercising. 28. Practice relaxation or meditation for 15 20 minutes daily. 29. Read labels to identify nutrients, fats, sodium content in packaged food. 30. Attend educational programs on personal health care. 31. Reach my target heart rate when exercising. 32. Pace myself to prevent tiredness. 33. Eat breakfast. 34. Seek guidance or counseling when necessary.
141 APPENDIX D: STRAIN QUESTIONNAIRE (SQ) Directions: Please read the following list and shade in the circle of the letter that most closely corresponds to how often in the past week you have experienced or felt each of the items listed. Please shade in the circle below the response you choose lik e this: Not at All (0 Days) Rarely (1 2 days) Sometimes (3 4 days) Frequently (5 6 days) Everyday (7 days) 1. Backaches 2. Muscle soreness 3. Numbness or tingling in body 4. Heaviness in arms or legs 5. Weakness in body parts 6. Tense muscles 7. Pain in neck 8. Nausea or upset stomach 9. Diarrhea or indigestion 10. Tight stomach 11. Loss of or excessive appetite 12. Pain in heart or chest 13. Shortness of breath 14. Racing heart 15. Light headedness 16. Headaches 17. Hot or cold spells 18. Lump in throat
142 19. Dryness of throat and mouth 20. Teeth grinding 21. Trembling or nervous tics 22. Sweating 23. Sweaty hands 24. Itching 25. Cold or warm hands 26. Frequent need to urinate 27. Spent more time alone 28. Irritability 29. Impulsive behavior 30. Easily startled 31. Stut tering/other speech impairment 32. Insomnia 33. Inability to sit still 34. Smoking 35. Use of prescription drugs 36. Use of alcohol 37. Accident proneness 38. Believe the world is against you 39. Feeling out of control 40. Urge to cry or run away 41. Feeling of unreality 42. Feeling that you are no good
143 43. Inability to concentrate 44. Nightmares 45. worse 46. Faintness or dizziness 47. Used recreational drugs 48. Premenstrual tension or missed cycles
144 APPENDIX E: THE PATIENT EMPOWERMENT INVENTORY (PEI) Directions: Please carefully read each statement below and rate how strongly do you agree or disagree with the statement about your relationship with the health care provider that you see most often. Please shade in the circle you choose like this: St rongly Disagree Somewha t Disagree Somewha t Agree Strongly Agree 1. In my relationship with my health care provider, she or he has more control in the relationship than I do. 2. If I felt that my health care provider did not treat me with respect, I would express this feeling to her or him. 3. I feel powerless in discussions with my health care provider about my health problem(s) and what must be done in treatment. 4. I tell my health care provider what I want her or him to know about my health. 5. I ask my health care provider the questions I want answered even when she or he is rushing. 6. Most things that I want to say to my health care provider are not worthwhile. 7. I have as much control or power as I want in my relationship with my health care provider. 8. If I think that my concerns are being ignored or overlooked, I discuss this with my health care provider. 9. If the medicines recommended by my health care provider did not help me feel better, I would contact her or him.
145 10. I often leave a visit with my health care provider feeling that my questions were not answered. 11. I tell my health care provider what I want her or him to do as part of my health care. 12. If I did not trust my health care provider, I would not feel comfortable expressing this to him or her. 13. I am comfortable telling my health care provider that I disagree with the treatment that she or he is recommending. 14. If I felt that my health care provider is not making a correct conclusion about my health problem, I would express this feeling to her/him. 15. When my health care provider provides me with great health care, I compliment him or her for providing this great care.
146 APPENDIX F: HEALTH RECORD FORM (HRF) Section 1: Health information we will record today. Instructions: Please visit the following stations today at the pre workshop session to obtain a measurement of each health variable listed below. Nurses and research assistants will be available to assist you and answer any questions. Please keep this form and return i t to the research team today with your completed assessment battery Health Variable Measurement Height Weight Body Mass Index Blood Pressure Hip Circumference Waist Circumference Section 2: Health information you will record this week. Instructions: Please visit the following stations today to learn about how you can record the following health variables over the course of this week before beginning the workshop You will need to record the number of steps walked each day, and blo od glucose and blood pressure will need to be recorded at three times during the week. Please keep this form and return it to the research team at the first health workshop. Health Variable Mon Tues Wed Thurs Fri Sat Sun Steps Walked Blood Glucose* Blood Pressure* *Need to be measured at least three times during the week.
147 APPENDIX G: INFORMED CONSENT FORM (ICF) I NFORMED C ONSENT F ORM to Participate in Research, and A UTHORIZATION to Collect, Use, and Disclose Protected Health Information (PHI) I NTRODUCTION Name of person seeking your consent: This is a research study of health promotion and promotion of desired health care among patients with type 2 diabetes. Could participating in this study offer any direct benefits to you? Yes, as described in Section 11a (page 5). Cou ld participating cause you any discomforts or are there any risks to you? No, as described in Section 10 (page 5). Please read this form, which describes the study in some detail. I or one of my co workers will also describe this study to you and answer all of your questions. Your participation is entirely voluntary. If you choose to participate you can change your min d at any time and withdraw from the study. You will not be penalized in any way or lose any benefits to which you would otherwise be entitled if you choose not to participate in this study or to withdraw. If you have questions about your rights as a resear ch subject, please call the University of Florida Institutional Review Board (IRB) office at (352) 846 1494. If you decide to take part in this study, please sign this form on page 11. G ENERAL I NFORMATION ABOUT THI S S TUDY 1. Name of Participant ("Study Subject") ___________________________________________________________________
148 2. What is the Title of this research study? Patient Centered Culturally Sensitive Health Care and Health Promotion Project 4. Who do you call if you have questions about this research study? Carolyn M. Tucker Distinguished Alumni Professor Joint Professor of Psychology Professor of Community Health and Family Medicine Professor of Pediatrics (Affiliate) (Toll free) 1 866 290 5770 4. Who is paying for this research study? The sponsor of this study is the Robert Wood Johnson Foundation. 5. Why is this research study being done? The purpose of this study is to determine the effects of two 5 hour workshops on health behaviors and health care experienced by adults with type 2 diabetes. These workshops are designed to help workshop participants to improve their relationships with their doctors and increase their health promo ting behaviors. These workshops are also designed to help participants improve their diet and medication adherence, blood glucose levels, and health related quality of life. You are being asked to be in this research study because you are an adult with typ e 2 diabetes who identifies as African American, Asian, Hispanic, or White. W HAT C AN YOU E XPECT IF YOU P ARTICIPATE IN THIS S TUDY ? 6. What will be done as part of your normal clinical care (even if you did not participate in this research study)? If you choose not to participate in this study, you will continue with your present diabetes management care. 7. What will be done only because you are in this research study? You will participate in one of two groups. One group will be an Immediate Participation Group who will (a) attend two meetings one month before and one month after two 5 hour health and health care workshops to complete a set of questionnaires, provide hea lth data, and learn how to use a pedometer and record steps walked and other health data; (b) attend
149 two 5 hour workshops (which will be 2 to 3 weeks apart) within three months after agreeing to be a research participant. The other group will be a Delayed Participation Group who (a) will attend the two meetings mentioned above, but will not attend the two 5 hour workshops, and (b) will attend a 2 hour health session after the two 5 hour workshops occurred for the other group. In this health session, the par ticipants in the Delayed Training Group will learn the most important information covered in the two 5 hour workshops. The two workshops and the health session will be videotaped and those videotapes will be used to train others how to conduct similar work shops and sessions. These videotapes may be available to the public in the future. Regardless of the group you are in, you will be asked to (a) attend the two meetings mentioned above, and (b) complete some questionnaires and provide some health data suc h as your weight, height, blood pressure, and a record of your glucose levels. During the first meeting all patient participants will be taught how to (a) use the Health Record Form, (b) use a pedometer (which is a steps walked counter that will be provide d for you), and (c) record steps walked daily. Volunteer nurses will also obtain your weight, height, blood pressure, and your waist size. You will record this information in your Health Record Form and will be instructed to keep it with you and record the number of steps walked daily (by using a pedometer), and your blood glucose levels and blood pressure levels three times over one week. This first meeting should last about 1 hours. During the second meeting you will be asked to complete another set of questionnaires and provide health data. One of the questionnaires will ask how much you agree or disagree with the statements that describe certain behaviors and attitudes of your health care provider and office staff or describe your health care center o lifestyle and culture, your relations with health care providers, your stress and depression levels, and your health behaviors. You will also be asked to complete a questionnaire about yourself wh ich asks about your age, gender/sex, race, years of having any long term health problems, any communication problems you may have, how you pay for your health care, your telephone number, your address, your phone number, your current health care clinic or Two months after the Immediate Participation Group attended the two 5 hour workshops, the Delayed Training Group will par ticipate in the 2 hour health session to learn the most important information covered in the two 5 hour workshops. During this session, you will receive information about health promotion and health care for patients with type 2 diabetes, and you will lear n skills for obtaining desired health care behaviors from your health care providers and desired family support to help you engage in the behaviors to be healthy with diabetes.
150 Additionally, during the two months between the end of the second 5 hour work shop and the 2 hour health session, only the Immediate Participation Group will be contacted by phone and mail to provide them with a brief review of the information that they covered in the workshops and to encourage and praise their efforts to meet the b ehavioral goals that they set as part of the workshops. All research participants are welcome to bring an adult family member to all research activities; however, the family member will not be a research participant and thus will not be asked to provide any research data and will not be paid for their participation in any research activities unless he/she has been officially enrolled in the study and has completed an informed consent form. All research participants will be called or mailed letters or pos t cards to inform them that they are in the study, to answer questions that they may have when deciding whether or not to participate in the study, and to remind them of the study related meetings, workshops, and health sessions. They will also be called o r mailed a letter to determine their food choices for the free meal that they will be provided at the workshops and health session. You will be paid for your participation. To see how much money you will be paid for participation in each part of our study please see Section 15 of this form. If you have any questions now or at any time during the study, please contact Dr. Carolyn M. Tucker who is identified in Question 3 (page 2) of this form. 8. How long will you be in this research study? Participation in this study will begin when you are enrolled in the study. Your participation will end before the month of April. As mentioned in Question 7 (page 3) depending on which group you are assigned to, the time commitment that i s required may vary but will not exceed eight months. 9. How many people are expected to take part in this research study? A total of 750 patient participants are expected to be enrolled in this study.
151 W HAT ARE THE R ISKS AND B ENEFITS OF THIS S TUDY AND W HAT ARE Y OUR O PTIONS ? 10. What are the possible discomforts and risks from taking part in this research study? Researchers will take appropriate steps to protect any information they collect about you. However there is a slight risk that information about you could be accidentally revealed. Depending on the nature of the information such a release could upset or embarrass you, or possibly even affe ct your insurability or employability. Question 17 in this form discusses what information about you will be collected, used, protected, and shared There are no known other risks to participating in our study. However, t his study may include risks that a re unknown at this time. Participation in more than one research study or project may cause risks to you. If you are already enrolled in another research study, please inform the PI or contact person listed on the front page of this form or the person reviewing this consent form with you before enrolling in this or any other research study or project. Throughout the study, the researchers will not ify you of new information that may become available and might affect your decision to remain in the study. If you wish to discuss the information above or any discomforts you may experience, please ask questions now or call the PI or contact person. 11a. What are the potential benefits to you for taking part in this research study? We anticipate that you will learn health information, behaviors, and skills to help you (a) live a healthier life with diabetes, (b) reduce or prevent stress and depression, and (c) inspire health care providers and staff to engage in behaviors, display attitudes, and create health care environments and policies that respect cultural differences. 11b. How could others possibly benefit from this study? Others wi th type 2 diabetes and providers of patients with type 2 diabetes may learn information, behaviors, and skills for better managing diabetes and for improving the health care quality and health outcomes of these patients. 11c. How could the researchers benefit from this study? In general, presenting research results helps the career of a scientist. Therefore Dr. Tucker and her research team may benefit if the results of this study are presented at scientific meetings or
152 in scientif ic journals. Otherwise, there are no conflicts of interest for Dr. Carolyn Tucker or her research team. 12. What other choices do you have if you do not want to be in this study? The other option to taking part in this study is doing n othing. If you do not want to take part in this study, tell the Principal Investigator or Research Participation Recruiter and do not sign this Informed Consent Form. 13a. Can you withdraw from this study? You are free to withdraw your consent and to stop participating in this study at any time. If you do withdraw your consent, you will not be penalized in any way and you will not lose any benefits to which you are entitled. However, you will only receive financial compensation for the portion of the proje ct that you have completed. If you decide to withdraw your consent to participate in this study for any reason, please contact Dr. Carolyn M. Tucker, or a member of her research team who she appoints at 1 866 290 5770, ext 255. You will be told how to safely stop your participation. If you have any questions regarding your rights as a research subject, please call the Institutional Review Board (IRB) office at (352) 846 1494. 13b. If you withdraw, can information about you still be used and/or collected ? If you withdraw from this study, the information that you have already provided to the researchers can still be used. The confidentiality of this information will still be protected as it will be identified by a code number rather than by your name. The list that links your name with your code will be kept in a separate locked file away from the information that we obtain from you. This file will kept in the research lab of the PI (Dr. Carolyn Tucker) to further protect your confidentiality. 13c. Can the Principal Investigator withdraw you from this study? You may be withdrawn from the study without your consent for the following reasons: 1) You become pregnant 2) You are unable to obtain and provide us with the earlier described health data, or attend the meetings and workshops or health promotion session that were described above 3) We have already enrolled the maximum number of participants of your gender or race/ethnicity W HAT ARE THE F INANCIAL I SSUES IF Y OU P ARTICIPATE ? 14. If you choose to take part in this research study, will it cost you anything?
153 The study will not cost you anything as a participant other than the cost of transportation for yourself so that you can attend the earlier describe d meetings and workshops that participation in this research study require. 15. Will you be paid for taking part in this study? All participants who complete participation in this research project will receive a total of $60 as research participation compensation, and this amount will be pro rated across three payments in the form of money orders. These three payment installments w ill vary depending on whether or not the individual is assigned to the Immediate Training Group or the Delayed Training Group. For participants in the Immediate Training Group, the first payment amount will be $15, which will be paid at the end of the firs t workshop. The second payment amount will be for $15, which will be paid at the end of the second workshop. The third payment amount will be for $30, which will be paid at the end of the second meeting (i.e., the meeting where all data collection that occ urred in meeting 1 will occur again). The money orders for the stated amounts will be directly given to participants at the end of each stated activity. For participants in the Delayed Training Group, the first payment amount will be $15, which will be pai d at the end of the first meeting. The second payment amount will be for $15, which will be paid at the end of the second meeting (i.e.., the meeting where all data collection that occurred in meeting 1 will occur again). The third payment amount will be f or $30, which will be paid at the end of the 2 hour health promotion training session. Thus, all participants who have completed their participation requirements will have received $60 research participation compensation by the end of their participation. 16. What if you are injured because of the study? B efore making any health behavior changes as a result of participating in this study, please consult your health care provider before you engage in those behaviors. The study sponsor and the researchers will not be responsible for medical services incurred by research participants for injuries directly related to their participation in this research study. If you are injured as a direct result of participating in this research, only professional consultative care that you receive at the University of Florida Health Science Center will be provided without charge. However, hospital expenses will be billed to your insurance provider. You will be responsible for any deductible, co insurance, or co payments. Some insurance companies may not cover costs associated with research studies. Please contact your insurance company for additional information. No additional compensation is offered. The Principal Investigator and most of the others involved in this study may be University of Florida employe es. As employees of the University, they are protected under state law, which limits financial recovery for negligence. Please contact the Principal Investigator listed in question 3 of this form if you experience an injury or have questions about any discomforts that you experience while participating in this study.
154 17. How will your health information be collected, used and shared? If you agree to participate in this study, the Principal Investig ator will create, collect, and use private information about you and your health. This information is called Protected Health Information or PHI. In order to do this, the Principal Investigator needs your authorization. The following section describes what PHI will be collected, used and shared, how it will be collected, used, and shared, who will collect, use or share it, who will have access to it, how it will be secured, and what your rights are to revoke this authorization. Your protected health information may be collected, used, and shared with others to determine if you can participate in the study, as part of your participation in the study, and to evaluate the effects of the workshops and health sessions. This informatio n can be gathered from you or your past, current or future health records, from procedures such as physical examinations, x rays, blood or urine tests or from other procedures or tests. This information will be created by receiving study treatments or par ticipating in study procedures, or from your study visits and telephone calls. More specifically, the following information may be collected, used, and shared with others: Demographic information Results from questionnaires that you wil l complete as part of this study Body mass index determined by obtaining your weight and height Waist and hip measurements Blood pressure readings Blood glucose readings The above listed information will be stored in locked filing cabinets or in computers with security passwords. It will be identified by a code number. The names and addresses matching the code numbers will be kept in a separate locked file or computer folder away from the health information questionnai re responses that you provide in order to protect your confidentiality. Some of the information collected could be included in a "limited data set" to be used for other research purposes. This information will be stored in locked filing cabinets or in comp uters with security passwords. If so, the limited data set will only include information that does not directly identify you. For example, the limited data set cannot include your name, address, telephone number, social security number, or any other infor mation that link you to the information in the limited data set. If limited data sets are created and used, agreements between the parties creating and receiving the limited data set are required in order to protect your identity and confidentiality and p rivacy. Your PHI may be collected, used, and shared with others to make sure you can participate in the research, through your participation in the research, and to evaluate the results of the research study. More specifically, your PHI may be collected, used, and shared with others for the following study related purpose: to examine the effects of two 5 hour Health Care and
155 Health Promotion Model Program Workshops. Once this information is collected, it becomes part of the research record for this study. Only certain people have the legal right to collect, use and share your research records, and they will protect the privacy and security of these records to the extent the law allows. These people are as follows: The study Principal Investigator, Dr. Carolyn M. Tucker and research staff associated with this project. other professionals at the University of Florida or Shands Hospita l that provide study related treatment or procedures The University of Florida Institutional Review Board (IRB; an IRB is a group of people who are responsible for looking after the rights and welfare of people taking part in research). Your PHI may be sh ared with: The study sponsor the Robert Wood Johnson Foundation Dr. Keith Herman at the University of Missouri at Columbia, who will help with data analyses United States and foreign governmental agencies who are responsible for overseeing research, such as the Food and Drug Administration, the Department of Health and Human Services, and the Office of Human Research Protections Government agencies who are responsible for overseeing public health concerns such as the Centers for Disease Control and federa l, state and local health departments Otherwise, your research records will not be released without your permission unless required by law or a court order. It is possible that once this information is shared with authorized persons, it could be shared by the persons or agencies who receive it and it wou ld no longer be protected by the federal medical privacy law. You are not required to sign this consent and authorization or allow researchers to collect, use and share your PHI. Your refusal to sign will not affect yo ur treatment, payment, enrollment, or eligibility for any benefits outside this research study. However, you cannot participate in this research unless you allow the collection, use and sharing of your protected health information by signing this consent a nd authorization. You have the right to review and copy your protected health information. However, we can make this available only after the study is finished. You can revoke your authorization at any time before, during, or after your participation in t his study. If you revoke it, no new information will be collected about you. However, information that was already collected may still be used and shared with others if the researchers have relied on it to complete the research. You can revoke your auth orization by giving a written request with your signature on it to the Principal Investigator.
156 S IGNATURES As an investigator or the in purpose, the procedures, the possible benefits, and the risks of this research study; the alternative to collected, used, and shared with others: Signature of Person Obtaining Consent and Authorization Date alternatives to being in the study; and how your protected health information will be collected, used and shared with others. You have received a copy of this Form. You have been given the opportunity to ask questions before you sign, and you have been told that you can ask questions at any time. You voluntarily agree to participate in this study. You hereby authorize the collection, use and sharing of your p rotected health information as described in section 17 above. By signing this form, you are not waiving any of your legal rights. Signature of Person Consenting and Authorizing Date Name, Telephone Number, and Mailing Address: Please write your name, telephone number, and address. Name: _____________________________________ Telephone: _____________________________________ Mailing address: _____________________________________ Email address: _________________ ____________________
157 APPENDIX H: WORKSHOP AGENDAS FOR CULTURAL LY SENSITIVE HEALTH EMPOWERMENT INTERVENTIONS Ways of Saying I Love You: Engaging in and Encouraging Health Smart Behaviors 9:00 a.m. 3:30 p.m. Time Activity/Task Presenter/Organizer 9:00 9:30 am Registration BMED Team 9:30 9:50 General Group Session I Welcome and Workshop Overview Ms. Katie Daly Dr. Carolyn Tucker 9:50 10:35 General Group Session II Health Smart Behaviors that Express Love for Ourselves and Those We Love Dr. Carolyn Tucker 10:35 11:15 General Group Session III Patient Panel on Living Well with Diabetes Panelists 11:15 12:25 Small Group Session Tips for Engaging in Health Smart Behaviors and for Overcoming Related Barriers Health Empowerment Coaches 12:25 1:15 Lunch BMED team 1:15 2:20 General Group Session IV Expressing Family Love Through Health Smart Grocery Shopping, Meal Planning, and Eating Dr. Carolyn Tucker 2:20 3:20 General Group Session V Expert Panel on Living Well with Diabetes Ms. Katie Daly Ms. Laura Reid 3:20 3:50 General Group Session VI Closing Comments and Fun Closing Activities Dr. Carolyn Tucker BMED Team
158 Obtaining the Health, Happiness, and Health Care You Desire and Deserve 9:00 a.m. 3:30 p.m. Time Activity/Task Presenter/Organizer 9:00 9:30 Registration BMED Team 9:30 10:00 General Group Session I Welcome and Workshop Overview Ms. Katie Daly Dr. Carolyn Tucker 10:00 11:00 General Group Session II Skills for Overcoming Stress and Depression and for Obtaining the Health, Happiness, and Health Care You Desire and Deserve Dr. Carolyn Tucker 11:00 11:50 General Group Session III Mental Health Provider Panel on Situations that Cause Stress, Depression, and/or Frustration Dr. Carolyn Tucker Ms. Stephanie Pollard 11:50 12:40 Small Group Session Tips and Strategies for a Successful Health Care Visit; Information to give Your Doctor; and Questions to Ask Your Doctor Health Empowerment Coaches 12:40 1:25 Lunch BMED Team and participants 1:25 2:15 Individual Meetings Situations that Cause Stress, Depression, and/or Frustration and Review of Goals and Commitment Forms Health Empowerment Coaches 2:15 3:15 General Group Session IV Health Care Provider Panel: Comments on Responsibilities, and Responses to Patients Questions Dr. Nancy Hardt Dr. Rene Campbell Ms. Stephanie Pollard 3:15 3:30 General Group Session V Closing Comments and Fun Closing Activities Dr. Carolyn Tucker BMED Team
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167 BIOGRAPHICAL SKETCH Katherine Di ane Daly was raised in Muskegon, Michigan on the Great Lakes She land in 2004 and continued on to pursue a Master of Arts degree in Counseling Psychology from the Univer sity of Missouri Columbia in 2006. Katherine received her Ph.D. in Counseling Psychology from the University of Florida in 2011 During her doctoral studies, Katherine ty based health projects with low income, diverse co mmunity members and the application of counseling for individuals and families affected by chronic health issues. The objective o f this research is to combat health disparities in the United States and to expand the roles of Counseling Psychologists to work with individuals and families faced with chronic illnesses. Katherine was able to apply her interest in counseling individuals and families with chronic health issues in a number of clinical settings during her doctoral training, includi ng the Malcolm Randall VA Hospital, the Gainesville Healthcare Center, and the Alachua County Crisis Center. Katherine completed an Amer ican Psych ological Association accredited pre doctoral psycholo gy internship at the U niversity of Tennessee Knoxville. Katherine accepted a position as Staff Psychologist at Cherokee Health Systems in Lenoir City, T ennessee where she will continue to focus on helping clients and families adjust to the psychological issues associated with living with chronic health conditions