North Carolina Caregiver Listening Study: Caregiver Experiences and Perspectives on Services and Supports in an Aging U.S. State.

Abstract

Family caregivers experience health, financial, and social burdens related to caregiving responsibilities. North Carolina has an estimated 1.3 million caregivers, equating to a value of $13.1 billion per year. Caregiving demands warrant additional understanding of the caregiver lived experiences. Our objective was to document these North Carolina caregiver experiences during the era of COVID-19 through focus groups. Participants were recruited through diverse community organizations. All 44 caregivers who completed interest solicitation surveys were invited to participate; 29 caregivers participated across 11 groups. Thematic analysis was used to code and synthesize transcripts from each participant using Dedoose software and guided by the Consolidated Criteria for Reporting Qualitative Research (COREQ). Themes included: caregiver routines (caregiving as an all-encompassing role; dimensions of support); most challenging parts (exhaustion and defeat; lacking support; evolving relationships); most rewarding parts (care recipient resilience; quality time; sense of purpose); social service and healthcare system interactions (positive interactions; negative interactions; inaccessible services); COVID-19 impacts on caregiving (opportunities; challenges); and caregiver suggestions for system improvements (increasing financial support; improved coordination; ideological shifts). Caregivers shared unmet needs, challenges, and opportunities for improvement. Examining these needs and experience-informed recommendations can help advance additional caregiving research, policy-making, and program development.