Difficulties of caregivers providing palliative care to patients covered by the family health strategy

Abstract

This study’s aim was to identify the main difficulties faced by caregivers of patients receiving comfort care at home and how they perceive the support provided by the Family Health Strategy. Qualitative research involving 50 caregivers providing comfort care to patients cared for by the Family Health Strategy in a city in the State of São Paulo, Brazil. The interviews were transcribed and analyzed using the Collective Subject Discourse methodological strategy. The results show that countless difficulties are experienced, which are linked to a lack of support, of equipment and financial resources and a lack of preparation to deal with death in the context of terminal illness. The program actions are limited and sporadic. The difficulties caregivers experience reflect unpreparedness combined with social and economic instability experienced in the home context. Additionally, caregivers are confronted with restricted and discontinued care provided by the program.