A experiência da espiritualidade em cuidadores familiares de pacientes com câncer avançado vivenciando a terminalidade e o luto

Abstract

Benites, A. B. (2021). The experience of spirituality in family caregivers of patients with advanced cancer facing end-of-life and bereavement (Doctoral Dissertation). Faculty of Philosophy, Sciences, and Letters at Ribeirão Preto, University of São Paulo.Caring for a patient with a terminal illness and accompanying the inevitable outcome of the death of a loved one is characterized as a complex, challenging and potentially stressful process that can impact bereavement. Studies have highlighted the importance of spirituality and the search for meaning in life as essential components for people dealing with serious illnesses. However, few studies seek to investigate the spiritual and existential experiences of family members facing the imminent death of the loved one and after the loss. This study aimed to understand the spiritual and existential experiences of the family member who takes care of the patient with advanced cancer at the end of life in the hospital and after the loss of a loved one. This is a prospective and exploratory study, with a qualitative approach, whose design is based on the methodological and theoretical framework of Interpretive Phenomenological Analysis (IPA). Participants were sixteen family caregivers who were accompanying the patient with cancer at the end-of-life and considered beyond the possibility of cure during hospitalization (Study 2) and 10 of these family caregivers after experiencing the loss (Study 3). The Phenomenological interview, through an initial question and other further probing questions, was the main instrument used for data collection. The investigation was complemented by a questionnaire of sociodemographic data and field observation records. The interviews were conducted at the convenience of each participant, in two meetings: the first, during the patient's hospitalization, and the second, from three to 24 months after the patient's death. The results are presented in three studies. Study 1 consists of a meta-synthesis on the experience of spirituality in family caregivers of patients with advanced cancer. It was found that the literature devotes little attention to the existential and spiritual needs of family caregivers who accompany the terminality of a loved one due to cancer. Study 2 consists of an exploratory qualitative research. It was found that the family member expresses their spirituality through caregiving, relationships, and their spiritual beliefs. There was also an oscillation between the hope fostered by the expectation of cure and a resignation and preparation for death, focused on the desire to provide comfort to the patient in his dying process. When confronted with the imminence of death, the family member seeks to reframe their suffering by resizing the meanings and priorities of life. In Study 3, a longitudinal interpretative phenomenological analysis of the experience of 10 family caregivers interviewed at two different times was performed: during hospitalization and after the death of the loved one. It was found that, for family membe...