Heart 2 Heart: Pilot Study of a Church-Based Community Health Worker Intervention for African Americans with Hypertension.

African Americans (AAs) have higher prevalence of uncontrolled hypertension than Whites, which leads to reduced life expectancy. Barriers to achieving blood pressure control in AAs include mistrust of healthcare and poor adherence to medication and dietary recommendations. We conducted a pilot study of a church-based community health worker (CHW) intervention to reduce blood pressure among AAs by providing support and strategies to improve diet and medication adherence. To increase trust and cultural concordance, we hired and trained church members to serve as CHWs. AA adults (n = 79) with poorly controlled blood pressure were recruited from churches in a low-income, segregated neighborhood of Chicago. Participants had an average of 7.5 visits with CHWs over 6 months. Mean change in systolic blood pressure across participants was - 5 mm/Hg (p = 0.029). Change was greater among participants (n = 45) with higher baseline blood pressure (- 9.2, p = 0.009). Medication adherence increased at follow-up, largely due to improved timeliness of medication refills, but adherence to the DASH diet decreased slightly. Intervention fidelity was poor. Recordings of CHW visits revealed that CHWs did not adhere closely to the intervention protocol, especially with regard to assisting participants with action plans for behavior change. Participants gave the intervention high ratings for acceptability and appropriateness, and slightly lower ratings for feasibility of achieving intervention behavioral targets. Participants valued having the intervention delivered at their church and preferred a church-based intervention to an intervention conducted in a clinical setting. A church-based CHW intervention may be effective at reducing blood pressure in AAs.

Partnering with Churches to Conduct a Wide-Scale Health Screening of an Urban, Segregated Community.

West Side Alive (WSA) is a partnership among pastors, church members and health researchers with the goal of improving health in the churches and surrounding community in the West Side of Chicago, a highly segregated African American area of Chicago with high rates of premature mortality and social disadvantage. To inform health intervention development, WSA conducted a series of health screenings that took place in seven partner churches. Key measures included social determinants of health and healthcare access, depression and PTSD screeners, and measurement of cardiometabolic risk factors, including blood pressure, weight, cholesterol and hemoglobin A1C (A1C). A total of 1106 adults were screened, consisting of WSA church members (n = 687), members of the local community served by the church (n = 339) and 80 individuals with unknown church status. Mean age was 52.8 years, 57% were female, and 67% reported at least one social risk factor (e.g. food insecurity). Almost all participants had at least one cardiovascular risk factor (92%), including 50% with obesity, 79% with elevated blood pressure and 65% with elevated A1C. A third of participants experienced ≥ 4 potentially traumatic events and 26% screened positive for depression and/or post-traumatic stress disorder. Participants were given personalized health reports and referred to services as needed. Information from the screenings will be used to inform the design of interventions targeting the West Side community and delivered in partnership with the churches. Sharing these results helped mobilize community members to improve their own health and the health of their community.

Trauma exposure, PTSD symptoms, and tobacco use: Does church attendance buffer negative effects?

Traumatic stress and posttraumatic stress disorder (PTSD) are overrepresented in urban African American communities, and associated with health risk behaviors such as tobacco use. Support and resources provided by churches may reduce trauma-related health risks. In the current study, we assessed weekly church attendance as a moderator of relations between (a) traumatic event exposure and probable PTSD, and (b) probable PTSD and tobacco use. Data were drawn from a health surveillance study conducted in seven churches located in Chicago's West Side. Participants (N = 1015) were adults from churches as well as the surrounding community. Trauma exposure was reported by 62% of participants, with 25% of those who experienced trauma reporting probable PTSD. Overall, more than one-third of participants (37.2%) reported current tobacco use. As compared with non-weekly church attendance, weekly church attendance was associated with a lower likelihood of PTSD (odds ratio [OR] = 0.41; 95% confidence interval [CI] = 0.26-0.62; p < .0001) and lower tobacco use overall (OR = 0.22; 95% CI = 0.16-0.30; p < .0001), but did not moderate the effect of trauma exposure on risk of PTSD, or the effect of PTSD on tobacco use. Findings support church attendance as a potential buffer of trauma-related stress.

Randomized Trial of a Lifestyle Intervention for Urban Low-Income African Americans with Type 2 Diabetes.

BACKGROUND: African Americans suffer more than non-Hispanic whites from type 2 diabetes, but diabetes self-management education (DSME) has been less effective at improving glycemic control for African Americans. Our objective was to determine whether a novel, culturally tailored DSME intervention would result in sustained improvements in glycemic control in low-income African-American patients of public hospital clinics. RESEARCH DESIGN AND METHODS: This randomized controlled trial (n = 211) compared changes in hemoglobin A1c (A1c) at 6, 12, and 18 months between two arms: (1) Lifestyle Improvement through Food and Exercise (LIFE), a culturally tailored, 28-session community-based intervention, focused on diet and physical activity, and (2) a standard of care comparison group receiving two group DSME classes. Cluster-adjusted ANCOVA modeling was used to assess A1c changes from baseline to 6, 12, and 18 months, respectively, between arms. RESULTS: At 6 months, A1c decreased significantly more in the intervention group than the control group (- 0.76 vs - 0.21%, p = 0.03). However, by 12 and 18 months, the difference was no longer significant (12 months - 0.63 intervention vs - 0.45 control, p = 0.52). There was a decrease in A1c over 18 months in both the intervention (ß = - 0.026, p = 0.003) and the comparison arm (ß = - 0.018, p = 0.048) but no difference in trend (p = 0.472) between arms. The intervention group had greater improvements in nutrition knowledge (11.1 vs 6.0 point change, p = 0.002) and diet quality (4.0 vs - 0.5 point change, p = 0.018) while the comparison group had more participants with improved medication adherence (24% vs 10%, p < 0.05) at 12 months. CONCLUSIONS: The LIFE intervention resulted in improved nutrition knowledge and diet quality and the comparison intervention resulted in improved medication adherence. LIFE participants showed greater A1c reduction than standard of care at 6 months but the difference between groups was no longer significant at 12 and 18 months. NIH TRIAL REGISTRY NUMBER: NCT01901952.

Care provider perspectives on medical travel: A three-country study of destination hospitals.

Despite growing interest in the current and potential role of medical travel in U.S. patient care, very little research has been conducted on clinician and other provider organizations' perspectives on providing international patient care. The present study sought to gain formative insights about medical travel from the providers' perspectives, by conducting structured interviews and focus groups in six hospitals from three countries catering to patients traveling from the United States. Findings highlighted the surprising role of international events and policies in the evolution of medical travel, as well as both the desire and need for more transparent quality standards.

Correlates of 15-year maintenance of physical activity in middle-aged women.

BACKGROUND: Interventions to increase sustained physical activity are needed and should be based on proven theories. PURPOSE: To gain a better understanding of the correlates of sustained physical activity in midlife women, we used longitudinal epidemiologic data to investigate links between sustained physical activity and constructs advocated by three basic behavioral and social science theories: (1) self-determination, (2) social cognitive, and (3) social networks. A random sample of 90 midlife women, stratified by level of physical activity over 15 years, was selected from the Chicago cohort of the Longitudinal Study of Women's Health Across the Nation (SWAN). METHODS: Using data on self-reported physical activity collected over 15 years, women were categorized into consistently active, sporadically active, and sedentary. New data were collected on theory-relevant constructs, i.e., autonomous motivation (assessed by the Treatment Self-Regulation Questionnaire) and self-efficacy (assessed by the Self-Efficacy and Exercise Habits Survey). Every SWAN woman identified a close female friend who also completed the physical activity questionnaire. RESULTS: SWAN women with higher autonomous motivation (p = 0.002) and higher self-efficacy (p < 0.001) were more likely to be consistently physically active in analyses adjusted for age, race, and socioeconomic status. Sixty-one percent of SWAN women with a history of consistent physical activity had a friend who is currently highly active, versus 38 and 23 % for sporadically active and sedentary women, respectively (test for trend p = 0.008). CONCLUSION: In midlife women, constructs advocated by basic behavioral and social science theories were consistent with long-term patterns of physical activity behavior. Special focus should be given to these basic theories in the design of interventions to promote sustained physical activity in mid-life women.

A self-management intervention for African Americans with comorbid diabetes and hypertension: a pilot randomized controlled trial.

INTRODUCTION: The objective of this pilot 6-month randomized controlled trial was to determine the effectiveness of an intensive, community-based, group intervention that focused on diet, physical activity, and peer support for reducing weight among urban-dwelling African Americans with comorbid type 2 diabetes and hypertension. METHODS: Sixty-one participants were randomized into an intervention or control group. The 6-month intervention consisted of 18 group sessions led by a dietitian in a community setting and weekly telephone calls from a peer supporter. The intervention featured culturally tailored nutrition education, behavioral skills training, and social support focused on changes to diet and physical activity. The control group consisted of two 3-hour group sessions of diabetes self-management education taught by a community health worker. Outcome measures were assessed at baseline and 6 months. The primary outcome was achievement of a 5% weight reduction at 6 months. A secondary outcome was achievement of a 0.5 percentage-point reduction in hemoglobin A1c (HbA1c). RESULTS: Groups did not differ in achievement of the weight-loss goal. Intervention participants lost a mean of 2.8 kg (P = .01); control participants did not lose a significant amount of weight. A greater proportion of intervention (50.0%) than control (21.4%) participants reduced HbA1c by 0.5 percentage points or more at 6 months (P = .03). CONCLUSION: The intervention was more effective than usual care (short-term diabetes education) at improving glycemic control, but not weight, in low-income African Americans with comorbid diabetes and hypertension. A community-based 6-month group class with culturally tailored education, behavioral skills training, and peer support can lead to a clinically significant reduction in HbA1c.

Clustering of Social Determinants of Health as an Indicator of Meaningful Subgroups within an African American Population: Application of Latent Class Analysis.

BACKGROUND: Health disparities between people who are African American (AA) versus their White counterparts have been well established, but disparities among AA people have not. The current study introduces a systematic method to determine subgroups within a sample of AA people based on their social determinants of health. METHODS: Health screening data collected in the West Side of Chicago, an underserved predominantly AA area, in 2018 were used. Exploratory latent class analysis was used to determine subgroups of participants based on their responses to 16 variables, each pertaining to a specific social determinant of health. RESULTS: Four unique clusters of participants were found, corresponding to those with "many unmet needs", "basic unmet needs", "unmet healthcare needs", and "few unmet needs". CONCLUSION: The findings support the utility of analytically determining meaningful subgroups among a sample of AA people and their social determinants of health. Understanding the differences within an underserved population may contribute to future interventions to eliminate health disparities.

Feasibility and acceptability of Internet grocery service in an urban food desert, Chicago, 2011-2012.

We explored the feasibility and acceptability of an Internet grocery service (IGS) as an approach to improving food access in urban neighborhoods. In our pilot study, caregivers residing in a documented Chicago food desert (N = 34, 79% ethnic minority) received a voucher to use a commercial IGS to purchase groceries for their household. Caregivers most frequently purchased fruits, vegetables, meats, and caloric beverages, and endorsed 4 factors as potentially important determinants of future IGS use. IGS programs could have a role in improving urban food access if they have competitive prices, provide rapid delivery, and incorporate strategies to discourage purchasing of discretionary caloric beverages.

"You Just Have to Keep It Movin':" Perceptions of Physical Function Limitations in an African American Health Ministry.

Physical function (PF) limitations are common in aging. However, there is a dearth of interventions focused on addressing PF limitations in community-based settings, particularly in minoritized communities. To guide intervention development, we conducted focus groups to understand perceptions of PF limitations, gauge intervention interest, and identify potential intervention strategies as part of a large health partnership of African American churches in Chicago, IL. Participants were age 40+ years with self-reported PF limitations. Focus groups (N=6 focus groups; N=40 participants) were audio recorded, transcribed, and analyzed using thematic analysis methods.Six themes were identified: (1) causes of PF limitations, (2) impact of PF limitations, (3) terminology and communication, (4) adaptations and treatments, (5) faith and resilience, and (6) prior program experiences. Participants described how PF limitations affected their ability to live a full life and play an active role in their family, church, and community. Faith and prayer aided in coping with limitations and pain. Participants expressed that it is important to keep moving, both from an emotional (not giving up) and physical (to prevent further exacerbation of limitations) standpoint. Some participants shared adaptation and modification strategies, but there were overall frustrations with communicating regarding PF limitations and obtaining medical care for them. Participants expressed that they would like to have programs in their church focused on improving PF (including physical activity), particularly as their communities often lacked resources conducive to being active. Community-based programs focusing on reducing PF limitations are needed, and the church is a potentially receptive setting.

Experiences With Kidney Transplant Among Undocumented Immigrants in Illinois: A Qualitative Study.

Rationale & Objective: Noncitizen, undocumented patients with kidney failure have few treatment options in many states, although Illinois allows for patients to receive a transplant regardless of citizenship status. Little information exists about the experiences of noncitizen patients pursuing kidney transplantation. We sought to understand how access to kidney transplantation affects patients, their family, health care providers, and the health care system. Study Design: A qualitative study with virtually conducted semistructured interviews. Setting & Participants: Participants were transplant and immigration stakeholders (physicians, transplant center and community outreach professionals), and patients who have received assistance through the Illinois Transplant Fund (listed for or received transplant; patients could complete the interview with a family member). Analytical Approach: Interview transcripts were coded using open coding and were analyzed using thematic analysis methods with an inductive approach. Results: We interviewed 36 participants: 13 stakeholders (5 physicians, 4 community outreach stakeholders, and 4 transplant center professionals), 16 patients, and 7 partners. The following seven themes were identified: (1) devastation from kidney failure diagnosis, (2) resource needs for care, (3) communication barriers to care, (4) importance of culturally competent health care providers, (5) negative impacts of policy gaps, (6) new chance at life after transplant, and (7) recommendations for improving care. Limitations: The patients we interviewed were not representative of noncitizen patients with kidney failure overall or in other states. The stakeholders were also not representative of health care providers because they were generally well informed on kidney failure and immigration issues. Conclusions: Although patients in Illinois can access kidney transplants regardless of citizenship status, access barriers, and health care policy gaps continue to negatively affect patients, families, health care professionals, and the health care system. Necessary changes for promoting equitable care include comprehensive policies to increase access, diversifying the health care workforce, and improving communication with patients. These solutions would benefit patients with kidney failure regardless of citizenship.

Delay discounting and intake of ready-to-eat and away-from-home foods in overweight and obese women.

A shift from home-prepared to away-from-home and ready-to-eat foods has occurred in recent decades, which has implications for obesity and health. This study tested whether delay discounting, a facet of impulsivity reflecting sensitivity to immediate reward, is associated with the frequency of consumption and typical amount consumed of home-prepared, away-from-home, and ready-to-eat foods among overweight and obese women. Seventy-eight participants completed a binary choice task assessing discounting of delayed monetary rewards. Nutrient analysis of weighed food records characterized dietary intake over seven consecutive days. Foods were categorized as home-prepared, away-from-home, or ready-to-eat by a registered dietitian from information provided by participants. Delay discounting was not associated with the frequency of consuming home-prepared, away-from-home, and ready-to-eat foods as reflected in the percentages of recorded foods or total energy intake from each category. However, once consuming away-from-home and ready-to-eat foods (but not home-prepared foods), impulsive women consumed more energy than less impulsive women. Exploratory analyses indicated that more impulsive women chose away-from-home foods with a higher energy density (kcal/g). Impulsivity was associated with the quantity of away-from-home and ready-to-eat foods consumed, but not the frequency of their consumption. Home food preparation may be critical to weight control for impulsive individuals.

Racial Differences in the Effect of HIV Status on Motor and Pulmonary Function and Mobility Disability in Older Adults.

BACKGROUND: Older Black adults face a disproportionate burden of HIV prevalence, but less is known about racial disparities in age-related outcomes in HIV. We assessed the effect of HIV status and race on motor and pulmonary function, as well as how they contribute to mobility disability. SETTING: Community-based study; Chicago, IL METHODS: Participants were 363 community-dwelling adults age ≥ 50 years, 48% living with HIV, and 68% Black. Participants with HIV were recruited from a specialty HIV clinic, and participants without HIV (comparable on key demographic, lifestyle, and behavioral characteristics) were recruited from the community. Measures included motor function summarized by 10 motor performance measures, pulmonary function summarized by 3 measures assessed using handheld spirometry, and self-reported mobility disability. RESULTS: In fully adjusted linear models, HIV was associated with better motor (ß = 9.35, p < 0.001) and pulmonary function (ß = 16.34, p < 0.001). For pulmonary function, the effect of HIV status was moderated by race (interaction between Black race and HIV status: ß = - 11.66, p = 0.02), indicating that better pulmonary function among participants with HIV was less evident among Black participants. In fully adjusted models, odds of mobility disability did not differ by race, HIV status, or pulmonary function; better motor function was associated with lower odds of mobility disability (OR = 0.91 per 1-point higher, 95% CI 0.88-0.93). CONCLUSION: Better motor and pulmonary function exhibited by participants with HIV could reflect access to medical care. Racial differences in lung function among participants with HIV indicate potential disparities in prevention or treatment of pulmonary disease or underlying risk factors.

End Stage Kidney Disease in Non-citizen Patients: Epidemiology, Treatment, and an Update to Policy in Illinois.

End-stage kidney disease (ESKD) is common in the U.S. There is no cure, and survival requires either dialysis or kidney transplant. Medicare provides coverage for most ESKD patients in the U.S., though non-citizens are excluded from most current policies providing standard ESKD care, especially regarding kidney transplants. Despite being eligible to be organ donors, non-citizens often have few avenues to be organ recipients-a major equity problem. Overall, transplants are cost-saving compared to dialysis, and non-citizens have comparable outcomes to the general population. We reviewed the literature regarding the vastly different policies across the U.S., with a focus on current Illinois policy, including updates regarding Illinois legislation which passed in 2014 providing non-citizens to receive coverage for transplants. Unfortunately, despite legislation providing avenues for transplants, funds were not allocated, and the bill has not had the impact that was expected when initially passed. We outline opportunities for improving current policies.

Physical Function in Midlife and Older Adults From an African American Church-Based Health Screening.

INTRODUCTION: Limitations in physical function are predictive of adverse health outcomes, and screening has been recommended in clinical settings for older adults. Rarely assessed in community-based settings, physical function could provide insight for tailoring health-related community-based programs and raise awareness about this important aspect of health. This cross-sectional study seeks to demonstrate the feasibility of integrating physical function assessments into health screenings in African American churches in Chicago, Illinois, through a large health partnership and to determine the prevalence and correlates of physical function limitations among midlife (aged 40-59 years) and late-life (aged ≥60 years) participants. METHODS: Screenings were held in 7 churches in Spring 2018. Physical function was assessed using the Short Physical Performance Battery. Demographics, medical history, health status, and health behaviors were assessed. Age-stratified logistic regression identified independent associations with physical function limitations (Score ≤9) among midlife and late-life participants (data were analyzed in 2018-2019). RESULTS: Among 731 participants (median age=57 [IQR=51-65] years, 58% women, 97% African American), 25% of midlife and 56% of late-life participants had physical function limitations. For midlife participants, fair/poor health (OR=1.83, 95% CI=1.10, 3.05), stroke/neurologic conditions (OR=2.42, 95% CI=1.07, 5.46), and arthritis (OR=2.25, 95% CI=1.32, 3.81) were associated with higher odds of limitations. Fair/poor health (OR=1.97, 95% CI=1.11, 3.50) and stroke/neurologic conditions (OR=7.85, 95% CI=2.22, 27.74) were related to limitations among late-life participants. CONCLUSIONS: Physical function screening was successfully implemented into this large-scale church-based health screening program. Physical function limitations were prevalent, particularly at midlife; this information will be used to guide future programs.

Interhospital Transfer Outcomes for Critically Ill Patients With Coronavirus Disease 2019 Requiring Mechanical Ventilation.

Studying interhospital transfer of critically ill patients with coronavirus disease 2019 pneumonia in the spring 2020 surge may help inform future pandemic management. OBJECTIVES: To compare outcomes for mechanically ventilated patients with coronavirus disease 2019 transferred to a tertiary referral center with increased surge capacity with patients admitted from the emergency department. DESIGN SETTING PARTICIPANTS: Observational cohort study of single center urban academic medical center ICUs. All patients admitted and discharged with coronavirus disease 2019 pneumonia who received invasive ventilation between March 17, 2020, and October 14, 2020. MAIN OUTCOME AND MEASURES: Demographic and clinical variables were obtained from the electronic medical record. Patients were classified as emergency department admits or interhospital transfers. Regression models tested the association between transfer status and survival, adjusting for demographics and presentation severity. RESULTS: In total, 298 patients with coronavirus disease 2019 pneumonia were admitted to the ICU and received mechanical ventilation. Of these, 117 were transferred from another facility and 181 were admitted through the emergency department. Patients were primarily male (64%) and Black (38%) or Hispanic (45%). Transfer patients differed from emergency department admits in having English as a preferred language (71% vs 56%; p = 0.008) and younger age (median 57 vs 61 yr; p < 0.001). There were no differences in race/ethnicity or primary payor. Transfers were more likely to receive extracorporeal membrane oxygenation (12% vs 3%; p = 0.004). Overall, 50 (43%) transferred patients and 78 (43%) emergency department admits died prior to discharge. There was no significant difference in hospital mortality or days from intubation to discharge between the two groups. CONCLUSIONS AND RELEVANCE: In a single-center retrospective cohort, no significant differences in hospital mortality or length of stay between interhospital transfers and emergency department admits were found. While more study is needed, this suggests that interhospital transfer of critically ill patients with coronavirus disease 2019 can be done safely and effectively.

A Small-Changes Weight Loss Programfor African-American Church Members.

OBJECTIVE: To test whether a previously tested, small-changes weight loss program could be translated for use in African American churches. METHODS: The program consisted of 12 group sessions held weekly at a partner church. Key intervention messages were disseminated via Facebook. A single-arm pretest-posttest evaluation included assessments at baseline, program completion (3-month), and after three months with no contact (6-month). RESULTS: Participants (N = 17; 16 women, age 57.5±12.1 years, body mass index 36.5 kg/m2±5.4, hemoglobin A1c 6.3±0.5, blood pressure 132±14/82±7) attended an average of 77% (mdn=9) of treatment sessions and 94% and 100% completed the 3- and 6-month assessment visits. All participants reported they were "somewhat" or "very satisfied" with the program. There was minimal interaction with Facebook with an average of 0.5 comments and 3.9 reactions per post. Three- and six-month reductions (all p's≤.01) were observed for weight (mdn=-2.7 kg; mdn=-2.6 kg), waist circumference (mdn=-3.8cm; mdn=-5.1cm), and hemoglobin A1c (mdn=-0.5; mdn=-0.3). At 3-months, there were significant reductions in systolic (mdn=-10.7 mmHg) and diastolic blood pressure (mdn=-8.0) but not at 6 months. CONCLUSIONS: This study suggests that a faith-based, faith-placed intervention utilizing a small-changes approach in African American churches may achieve sustained weight loss in parishioners with obesity.

Sleep-related attitudes, beliefs, and practices among an urban-dwelling African American community: a qualitative study.

OBJECTIVES: Short sleep duration and poor sleep quality are more prevalent among African Americans (AAs) and may be a modifiable risk factor for cardiometabolic disorders. However, research is limited about sleep-related attitudes, beliefs, and practices among AAs. Our objective was to evaluate these practices and beliefs surrounding sleep among urban-dwelling AAs. DESIGN: Qualitative study comprised of five 90-minute focus groups using a semistructured interview guide. SETTING: Five churches located on the west side of Chicago. PARTICIPANTS: Adults (N = 43) ages 25-75 years. MEASUREMENTS: Transcripts were voice recorded, transcribed, and then coded for content analysis using NVivo 12 Pro to capture themes in the discussions. RESULTS: Most participants (86%) reported sleeping less than the recommended 7 or more hours. The discrepancy between actual and desired sleep duration was nearly 3 hours per night. Participants reported that sleep is essential for mental and physical health. Napping and consuming caffeine were frequently reported techniques for coping with lack of sleep. Noise, physical discomfort, and stress were reported as barriers to sleep, and participants reported using TV and other electronics to cope with racing thoughts or worry. Many participants were diagnosed with or knew someone with obstructive sleep apnea, but few participants had been diagnosed with insomnia or were aware of nonpharmacologic insomnia treatments. CONCLUSION: A cycle of stress/disruptive environment, stress, rumination at night, and coping by use of electronics and daytime napping may perpetuate sleep disparities in this community. Results suggest that sleep-related interventions should include stress reduction and environmental improvements in addition to the typical sleep hygiene-related behavioral recommendations.

A qualitative study of quality of life after stroke: the importance of social relationships.

BACKGROUND: Stroke is a leading cause of long-term disability in the USA; however, we have an incomplete understanding of how stroke affects long-term quality of life. METHODS: We report here findings from focus groups with 9 long-term stroke survivors and 6 caregivers addressing patients' post-stroke quality of life. RESULTS: Key themes identified by patients were: social support, coping mechanisms, communication, physical functioning and independence. Role changes in patients were important to caregivers. Much of the discussion with patients and caregivers described specific ways in which the stroke altered social relationships. CONCLUSION: These findings are consistent with prior research indicating the importance of social factors to quality of life following stroke. Our findings suggest that measures of stroke-related quality of life should include assessment of social function and social support.