Necessidades de conforto de cuidadores familiares que prestam cuidados paliativos domiciliares: um estudo qualitativo

Abstract

The expansion of home-based palliative care has increased family involvement in complex caregiving tasks, exposing family caregivers to physical, emotional, and social burden, often exacerbated by fragile support networks. Within this context, comfort emerges as a key dimension of the caregiving experience, shaped by relational, spiritual, and sociocultural factors. From this perspective, this study aimed to understand how comfort needs are configured and managed by family caregivers in the context of home-based palliative care. This is a qualitative study grounded in Interpretive Description and reported in accordance with the Standards for Reporting Qualitative Research (SRQR). Data were collected between December 2025 and January 2026 in a university hospital in Fortaleza, Ceará, Brazil, involving family caregivers of individuals receiving palliative care who were responsible for daily care at home. Data were generated through semi-structured interviews, audio-recorded, fully transcribed, and analyzed using an interpretive and comparative process, with flexible coding, thematic construction, and clinical integration of findings. The study was approved by the Research Ethics Committee of Hospital Universitário Walter Cantídio (Approval No. 7,898,841). A total of 15 family caregivers participated, predominantly middle-aged and older adults, emotionally connected to the care recipient, centrally involved in the home care routine, and living under predominantly constrained socioeconomic conditions. Findings indicate that home-based caregiving profoundly reorganizes caregivers’ time, body, and identity, producing a form of comfort rarely experienced as full well-being, and more often as a comfort within constraints, sustained through practical and symbolic arrangements. The findings were organized into six interpretive patterns: (1) ambivalence in transitioning into the caregiver role; (2) navigating between reciprocity and a sense of duty; (3) the lived body as a site of strain; (4) the antinomies of comfort experience; (5) balancing tensions within caregiving and support networks; and (6) cultivating transcendence as a source of self-care. It is concluded that comfort needs are produced at the intersection of high care demands, fragile support networks, and sustained burden, positioning comfort as an experience constructed within constraints. By making this everyday dynamic visible, the study contributes to recognizing family caregivers as recipients of care in their own right and highlights the relevance of nursing in identifying burden, coordinating support, and co-constructing realistic strategies to sustain care at home.