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The lived experience of a family caregiver of a person with advanced Cancer and the significances of spirituality

Grant number: 17/26542-5
Support Opportunities:Scholarships in Brazil - Doctorate
Effective date (Start): April 01, 2018
Effective date (End): September 30, 2021
Field of knowledge:Humanities - Psychology - Psychological Treatment and Prevention
Principal Investigator:Manoel Antônio dos Santos
Grantee:Andrea Carolina Benites
Host Institution: Faculdade de Filosofia, Ciências e Letras de Ribeirão Preto (FFCLRP). Universidade de São Paulo (USP). Ribeirão Preto , SP, Brazil
Associated scholarship(s):19/02134-0 - The experience of advanced cancer patients and family caregivers: expanding research perspectives and interventions in psycho-oncology and palliative care between Canada and Brazil, BE.EP.DR


Caring for a patient with a terminal illness and accompanying the inevitable outcome of the death of those loved ones is characterized as a complex, challenging and potentially stressful process that can impact the resulting grieving process. Studies have highlighted the importance of spirituality and the search for meaning for life as essential components for people dealing with serious illnesses. However, few studies seek to investigate the spiritual needs and preferences of the family members in the face of the imminent death of the loved one and after the loss. Considering the need to fill this gap in literature, this study aims to understand the experience of the family member who takes care of the patient with Cancer in the end of life and the significance attributed to spirituality during the process of dying in the hospital and after the loss of the loved one. It is a prospective and exploratory study of qualitative approach, whose design is based on the theoretical-methodological reference of phenomenology. Ten family caregivers who are accompanying their patients with Cancer in the end of life and considered out of healing possibilities during hospital hospitalization (stage 1) and after experiencing the loss (step 2) will participate in the study. The main instrument to be used for data collection is the phenomenological interview, characterized by being open, exploratory and triggered by a guiding issue. The investigation will be supplemented by a /questionnaire of sociodemographic data and field observation records. The interviews will be held at the convenience of each participant, and happen in two meetings: the first, during the hospitalization of the patient, and the second, from six to twelve months after his death. It is expected to foster reflections on the possibilities for the improvement of public policies and assistance to the families of Cancer patients at the end of their lives, thus contributing to support the transition from the dying process and the assistance to grieving families considering the inclusion of the spiritual dimension in the care, in order to fill an important gap identified in the national scenario. (AU)

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Scientific publications
(References retrieved automatically from Web of Science and SciELO through information on FAPESP grants and their corresponding numbers as mentioned in the publications by the authors)
BENITES, ANDREA CAROLINA; RODIN, GARY; DE OLIVEIRA-CARDOSO, ERIKA ARANTES; DOS SANTOS, MANOEL ANTONIO. ``You begin to give more value in life, in minutes, in seconds{''}: spiritual and existential experiences of family caregivers of patients with advanced cancer receiving end-of-life care in Brazil. SUPPORTIVE CARE IN CANCER, v. 30, n. 3, . (17/26542-5, 19/02134-0)
BENITES, ANDREA CAROLINA; DE OLIVEIRA-CARDOSO, ERIKA ARANTES; DOS SANTOS, MANOEL ANTONIO. Spirituality in Brazilian family caregivers of patients with cancer from the end-of-life care to bereavement. DEATH STUDIES, v. 47, n. 3, p. 10-pg., . (17/26542-5, 19/02134-0)
Academic Publications
(References retrieved automatically from State of São Paulo Research Institutions)
BENITES, Andrea Carolina. The experience of spirituality in family caregivers of patients with advanced cancer facing end-of-life and bereavement. 2021. Doctoral Thesis - Universidade de São Paulo (USP). Faculdade de Filosofia, Ciências e Letras de Ribeirão Preto (PCARP/BC) Ribeirão Preto.

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