Transição para o papel de cuidador familiar de pessoa idosa desospitalizada para cuidados paliativos pela Atenção Domiciliar

Abstract

This research aimed to understand how family members of older people discharged from hospital for Palliative Care through Home Care experienced the transition to the role of caregiver and, based on this understanding, explain how this transition occurred for a family member and describe the adaptation strategies to the role of caregiver developed by the family member in this context. The research was carried out with a qualitative, comprehensive-explanatory approach, using Robert Yin's Case Study method, with the contribution from Afaf Meleis's Theory of Transitions. The scenarios were a public Home Care Service in Minas Gerais, subsidized by the Melhor em Casa Program and the home where the participants provided care to their older family member in contact with the service. Nine family caregivers were included gradually, intentionally, until theoretical saturation. After approval by the Human Research Ethics Committee of the Federal University of Juiz de Fora (CAAE Nº 54046621.4.0000.5147), data were collected in the service's Information system; in medical records; by direct observation and with two in-depth interviews carried out at home: the first after seven and the second after 30 days of hospital discharge. The data was analyzed using the analytical strategy of theoretical propositions and the analytical technique used was the construction of the explanation to elucidate how the transition to the role of caregiver occurs for the family member of an older person discharged from hospital for Palliative Care through Home Care. It is understood that when assuming the role of Caregiver, the older person's family member experiences three phases: Entry into the role; taking on and then accommodation in the role of caregiver. This phenomenon was explained with six categories and 23 subcategories related to them, namely: Entry into the role and return to home; fears and concerns inherent to the role of caregiver; organization of care; role expectations; determinant factors that facilitate or inhibit transition and accommodation in the caregiver role. The findings were presented in tables and diagrams explaining the transition to the role of family caregiver in the studied context, discussed in light of Afaf Meleis’s Theory of Transitions, and current literature on the topic. Strategies for adaptation to the role were: seeking guidance from health professionals, internet sources and other caregivers. There was organization and insertion of other members in care, time for rest and self-care, in addition to seeking support in society. The family member who assumes the role of caregiver goes through a period of change in their life routine, triggered by the hospital discharge and return of the older family member to palliative care through Home Care, experiencing instability in the transition to the new role until reaching mastery or stabilization of a new routine as a family caregiver. Understanding this process in light of this theoretical framework made it possible to advance in knowledge about the experience of situational role transitions. The research provides theoretical support for nurses, encouraging them to develop support models and Nursing Therapeutics for family members at each stage of the transition to the role of family caregiver. The need to implement a public policy to support family caregivers is reinforced, supporting them with their needs. It is recommended that transitional care be systematically implemented between Hospital and Home Care involving family members of older people, so that they develop the skills required in the transition to the role of family caregiver, preventing or reducing the occurrence of unhealthy transitions.