Integrating Perspectives on Family Caregiving After Critical Illness: A Qualitative Content Analysis

Abstract

BACKGROUND: To date, no intervention has definitively improved outcomes for families of critical illness survivors. An integrated perspective on caregivers' needs after critical illness could help identify high-priority intervention targets and improve outcomes. OBJECTIVES: To obtain diverse perspectives on the needs, barriers and facilitators, and social determinants of health associated with family caregiving across the critical illness continuum and assess the extent to which successful caregiving interventions in other populations may be adapted to the critical illness context. METHODS: This qualitative content analysis of 31 semistructured interviews and 10 focus groups with family caregivers, health care providers, and health care administrators explored family caregivers' needs during post- intensive care unit (ICU) transitions and the barriers and facilitators associated with addressing them. Trained coders analyzed transcripts, identified patterns and categories among the codes, and generated themes. RESULTS: Caregivers have 3 instrumental needs: formal and informal support, involvement in care planning, and education and training. Only caregivers described their self-care and mental health needs. Social determinants of health are the key barriers and facilitators shaping the caregivers' journey, and caregiving as a social determinant of health was a prominent theme. CONCLUSIONS: Caregivers have instrumental, self-care, and mental health needs after critical illness. Adapting hands-on and skills training interventions to the post-ICU setting, while tailoring interventions to caregivers' health-related social context, may improve caregiver outcomes.