Data Collection and Management in Community Engaged Research: Lessons Learned From Two Community-Based Participatory Research Partnerships.

BACKGROUND: Data collection and data management (DCDM) within community-engaged research (CEnR) requires special considerations that differ from those of traditional research. To date, little guidance exists to preemptively help community-academic partnerships anticipate and resolve DCDM issues that may arise. OBJECTIVE: We sought to provide recommendations for DCDM based on two CEnR research projects. METHODS: We used a case study design to describe the DCDM process and lessons learned that were generated through formal and informal discussions between community and academic partners. LESSONS LEARNED: We identified 4 key lessons: 1) CEnR requires a flexible, iterative approach to DCDM, 2) there are trade-offs to having a flexible DCDM approach, 3) responsibilities for DCDM should consider the skill sets and priorities of all partners, and 4) nuances of DC within CEnR has important implications for human subjects and ethics training. CONCLUSIONS: Based on our lessons learned, we provide recommendations for how to approach DCDM within CEnR.

Family member accompaniment to routine medical visits is associated with better self-care in heart failure patients.

OBJECTIVES: To examine the association between frequency of family member accompaniment to medical visits and heart failure (HF) self-care maintenance and management and to determine whether associations are mediated through satisfaction with provider communication. METHODS: Cross-sectional survey of 150 HF patients seen in outpatient clinics. HF self-care maintenance and management were assessed using the Self-Care of Heart Failure Index. Satisfaction with provider communication was assessed using a single question originally included in the American Board of Internal Medicine Patient Satisfaction Questionnaire. Frequency of family member accompaniment to visits was assessed using a single-item question. We performed regression analyses to examine associations between frequency of accompaniment and outcomes. Mediation analysis was conducted using MacKinnon's criteria. RESULTS: Overall, 61% reported accompaniment by family members to some/most/every visit. Accompaniment to some/most/every visit was associated with higher self-care maintenance (ß = 6.4, SE 2.5; p = 0.01) and management (ß = 12.7, SE 4.9; p = 0.01) scores. Satisfaction with provider communication may mediate the association between greater frequency of accompaniment to visits and self-care maintenance (1.092; p = 0.06) and self-care management (1.428; p = 0.13). DISCUSSION: Accompaniment to medical visits is associated with better HF self-care maintenance and management, and this effect may be mediated through satisfaction with provider communication.

Implementation of the power to prevent diabetes prevention educational curriculum into rural African American communities: a feasibility study.

PURPOSE: The purpose of this study was to describe the feasibility of using a community-based participatory research (CBPR) approach to implement the Power to Prevent (P2P) diabetes prevention education curriculum in rural African American (AA) settings. METHODS: Trained community health workers facilitated the 12-session P2P curriculum across 3 community settings. Quantitative (based on the pre- and post-curriculum questionnaires and changes in blood glucose, blood pressure [BP], and weight at baseline and 6 months) and qualitative data (based on semi-structured interviews with facilitators) were collected. Indicators of feasibility included: demand, acceptability, implementation fidelity, and limited efficacy testing. RESULTS: Across 3 counties, 104 AA participants were recruited; 43% completed ≥ 75% of the sessions. There was great demand for the program. Fifteen community health ambassadors (CHAs) were trained, and 4 served as curriculum facilitators. Content and structure of the intervention was acceptable to facilitators but there were challenges to implementing the program as designed. Improvements were seen in diabetes knowledge and the impact of healthy eating and physical activity on diabetes prevention, but there were no significant changes in blood glucose, BP, or weight. CONCLUSION: While it is feasible to use a CBPR approach to recruit participants and implement the P2P curriculum in AA community settings, there are significant challenges that must be overcome.

Self-care confidence mediates the relationship between perceived social support and self-care maintenance in adults with heart failure.

BACKGROUND: Social support may be associated with heart failure (HF) self-care; however, the mechanisms are not well understood. We examined the association between perceived support and self-care behaviors and whether self-care confidence mediates these relationships. METHODS: Cross-sectional survey of HF patients seen in outpatient clinic settings. Our outcome (HF self-care maintenance and self-care management) and mediator (HF self-care confidence) variables were assessed with the Self-Care of Heart Failure Index. Perceived emotional/informational support was assessed with the Medical Outcomes Study social support survey. We performed regression analyses to examine associations between perceived support and HF self-care behaviors. Mediation analysis was performed according to the Baron and Kenny method. RESULTS: We surveyed 150 HF patients (mean age 61 y; 51% female; 43% black). More emotional/informational support was associated with better self-care maintenance (ß = 0.13; P = .04). More emotional/information support was associated with better self-care management in unadjusted (ß = 0.23; P = .04), but not adjusted (ß = 0.20, P = .10), analysis. Self-care confidence mediates the association between perceived support and self-care maintenance (percent change in ß coefficient was 32%) and management (percent change in ß coefficient was 20%). CONCLUSION: Perceived emotional/informational support is associated with better self-care maintenance and possibly better self-care management. Greater self-care confidence is one mediating mechanism.