Whose voice counts? Family caregivers' roles in shared decision making for chronic illness in urban South Korea: A...

Shared decision making (SDM) is fundamental to patient-centered care, yet dominant frameworks have been developed within dyadic patient-provider models grounded in Western individualistic assumptions. Prior research from East Asian, Sub-Saharan African, and Latin American contexts has documented that medical decision making is frequently family-centered and that caregivers function as recognized actors in clinical encounters. Building on this evidence base, this study examines how caregiver participation is enacted and constrained within the Korean chronic care context, contributing a multilevel reinterpretation rather than a discovery of caregiver involvement.

We conducted four semi-structured focus group interviews between June and September 2024 with 20 family caregivers of patients diagnosed with hypertension, diabetes mellitus, chronic kidney disease requiring dialysis, or heart disease. Disease-specific groups were formed to enable contextually grounded discussion. Participants were recruited through a Seoul-based research agency and were, on average, highly educated. Using inductive qualitative content analysis, we identified key themes and interpreted the findings through the Social-Ecological Model. Interviews were conducted in Korean, and selected quotations were translated by bilingual researchers through consensus-based reconciliation. Analytic adequacy was assessed in terms of thematic sufficiency.

At the individual level, caregivers experienced emotional strain and decision-related uncertainty, prompting self-directed information seeking. At the interpersonal level, participation was shaped by hierarchical communication with physicians and role-based constraints with nonphysician staff. At the organizational level, fragmented care pathways and standardized information formats constrained access to guidance. At the societal level, culturally embedded deference to medical authority and normalized expectations of family responsibility framed involvement as obligation rather than a formally recognized role. Caregivers simultaneously described aspirations for participatory legitimacy.

Consistent with prior non-Western literature, caregiver involvement is not exceptional but routine; the contribution lies in jointly examining the individual, interpersonal, organizational, and societal conditions through which involvement is simultaneously expected and constrained.