“Cultivou, regou e floresceu”: experiências de familiares no contexto dos cuidados paliativos domiciliares

Abstract

This dissertation comprises two studies on palliative care involving different populations and methodological designs. Study 1 aimed to establish connections between Winnicottian psychoanalytic theory and the practice of palliative care. It consists of an experience report based on follow-up home visits to a patient receiving palliative care. Through home-based palliative care, the patient and their family were provided with a space and time in which suffering could be communicated, both verbally and nonverbally, and actively addressed. Study 2 aimed to understand the emotional experiences of family caregivers of children receiving home-based palliative care. This qualitative study included 12 participants: nine mothers, two grandmothers, and one great-grandmother. Data were collected individually in the participants’ homes using the Thematic Drawing-And-Story Procedure and an interactive narrative specifically developed for the purposes of this study. The data were analyzed through a psychoanalytic interpretive approach aimed at identifying fields of meaning. Four fields of meaning were identified, and the following titles were assigned to them: “The word became a better place when you arrived”, “One bird alone doesn’t make a summer”; “I never learned to say goodbye”; and “Who could make that love die?” These fields refer, respectively, to motherhood, the transience of life, peer support, and the transformations and continuities associated with grief. It is concluded that family caregivers of children receiving home-based palliative care undergo intense emotional experiences and therefore require care and support from both healthcare professionals and their peers.