Caring amid crisis: a qualitative study of caregivers' experiences, wellbeing, and support for older adults

Unpaid caregivers are a critical yet structurally under-recognized component of health and social care systems, providing essential support to older adults living with chronic illness, frailty, and complex care needs. Although caregiving challenges predate COVID-19, the pandemic intensified reliance on unpaid care and exposed persistent gaps in system coordination, service access, and caregiver support. This study examines how unpaid caregivers in Ontario, Canada, retrospectively understand caregiving during and following this period, with attention to how health and social care system structures shape caregiver recognition, access to supports, and experiences of strain.

This qualitative study used an interpretive description design and drew on semi-structured interviews with caregivers conducted between November 2024 and September 2025. Interviews were completed in person, by telephone, or via Zoom and analyzed using reflexive thematic analysis within an iterative interpretive framework. Analysis was guided by an interest in both experiential accounts of caregiving and the institutional arrangements through which care is organized, including caregiver identification practices, assessment processes, service coordination, and access to formal supports. Coding and theme development were iterative and comparative, occurring alongside data collection to allow emerging insights to inform subsequent interviews. Analytic rigor was supported through sustained team reflexivity, iterative coding cycles, and regular analytic discussions to refine interpretations and ensure coherence across themes.

Fifteen caregivers participated. Analysis generated four interconnected themes: (1) establishing a caregiving identity; (2) experiencing emotional strain and unmet support needs; (3) maintaining social connection through diverse support networks; and (4) managing daily caregiving demands and accessing respite. Across themes, caregiving was shaped by interactions with health and social care systems that influenced whether caregivers were recognized, supported, and connected to appropriate resources. Participants described persistent challenges in navigating services, accessing emotional and practical supports, sustaining social connections, and obtaining respite.

Caregiver strain arises not only from the demands of caregiving, but also from how caregiving is organized and operationalized within health and social care systems. By identifying gaps in caregiver recognition, assessment, coordination, and support, this study shifts attention from individual burden to the institutional conditions shaping caregiver experiences. Strengthening caregiver support will require integrated system responses that embed caregivers within routine care pathways and position them as essential partners in care delivery.