Abstract
BACKGROUND: Typically, chronic disease self-management happens in a family context, and for African American adults living with diabetes, family seems to matter in self-management processes. Many qualitative studies describe family diabetes interactions from the perspective of adults living with diabetes, but we have not heard from family members. OBJECTIVE: To explore patient and family perspectives on family interactions around diabetes. DESIGN: Qualitative study using focus group methodology. PARTICIPANTS & APPROACH: We conducted eight audiotaped focus groups among African Americans (four with patients with diabetes and four with family members not diagnosed with diabetes), with a focus on topics of family communication, conflict, and support. The digital files were transcribed verbatim, coded, and analyzed using qualitative data analysis software. Directed content analysis and grounded theory approaches guided the interpretation of code summaries. RESULTS: Focus groups included 67 participants (81 % female, mean age 64 years). Family members primarily included spouses, siblings, and adult children/grandchildren. For patients with diabetes, central issues included shifting family roles to accommodate diabetes and conflicts stemming from family advice-giving. Family members described discomfort with the perceived need to police or "stand over" the diabetic family member, not wanting to "throw diabetes in their [relative's] face," perceiving their communications as unhelpful, and confusion about their role in diabetes care. These concepts generated an emergent theme of "family diabetes silence." CONCLUSION: Diabetes silence, role adjustments, and conflict appear to be important aspects to address in family-centered diabetes self-management interventions. Contextual data gathered through formative research can inform such family-centered intervention development.