Network of formal and informal care provided by family members for cancer patients receiving palliative care at home.

Abstract

In the face of advanced oncological disease in palliative care at home, caregivers are mostly family members who are part of the informal system. The lack of guidance and social support exposes them to stress and overload that can affect their health, well-being, quality of life, and contribute to failures in care. The aim is to understand the care networks around the main caregiver in the context of home palliative care and describe the implications of the availability of these networks on the health care of this caregiver. Descriptive and qualitative study, developed at a national reference institute in oncology, in Rio de Janeiro, Brazil. Eighteen informal caregivers of patients with advanced cancer hospitalized in the specialized palliative care clinical ward were interviewed. Ethical approval was obtained. Three categories emerged: Formal support network; Informal support network; and Overload of the main caregiver. The qualitative approach was fundamental for understanding that family members present their own demands in the care process. This study contributes to discussions regarding the role of nursing in promoting the transversalization of care to caregivers.