Abstract / Summary
Abstract Background Globally, the development of palliative care emphasizes the accessibility and quality of home-based services. Consequently, most people with advanced cancer wish to remain at home at end-of-life (EOL), yet many still die in hospital. Informal caregivers are essential in enabling home-based EOL care, as such care is rarely feasible without their involvement. Understanding informal caregivers’ experiences is crucial for informing caregiver support, service development, and family-centred palliative care. Despite the central role of informal caregivers in home-based EOL care, their experiences remain insufficiently understood. The aim of this study was to describe informal caregivers’ experiences of providing home-based EOL care for a person with cancer, 3–12 months after the patient’s death. Methods A descriptive qualitative study design was used. Data were collected between November 2021 and May 2022 through individual interviews with informal caregivers ( n = 19) who had provided home-based EOL care for a person with cancer and had received support from three hospital-at-home (HaH) services in urban southern Finland. The interviews were analyzed using inductive content analysis. The study adhered to the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist. Results The content analysis identified four main categories describing informal caregivers’ experiences of providing home-based EOL care for a person with cancer: (1) adapting daily life to care needs, (2) complex care responsibilities of informal caregivers, (3) personal strengths and resources supporting coping, and (4) meaningful experiences in caregiving. Informal caregivers assumed primary responsibility for symptom assessment, medication management, and daily care activities, while simultaneously reorganizing home environments and everyday life to enable care. Caregiving was characterized by substantial physical, emotional, and financial strain, compounded by challenges in accessing timely guidance and support when care needs changed rapidly. At the same time, caregivers demonstrated increasing competence, adaptability, and commitment, while enabling patients’ EOL preferences. Conclusions Informal caregivers carry substantial responsibility in enabling EOL care for people with cancer. Their commitment enables home-based EOL care yet exposes them to significant physical and emotional strain. Although caregivers developed considerable competence and adaptability in managing complex care responsibilities, timely professional guidance, psychosocial support, and recognition as partners in care are essential for sustaining high-quality EOL care at home.