The experience of advanced cancer patients and family caregivers: expanding research perspectives and interventions in psycho-oncology and palliative care between Canada and Brazil

• Grant number: 19/02134-0
• Support Opportunities: Scholarships abroad - Research Internship - Doctorate
• Effective date (Start): September 01, 2019
• Effective date (End): August 31, 2020
• Field of knowledge: Humanities - Psychology - Psychological Treatment and Prevention
• Principal Investigator: Manoel Antônio dos Santos
• Grantee: Andrea Carolina Benites
• Supervisor: Gary Michael Rodin
• Host Institution: Faculdade de Filosofia, Ciências e Letras de Ribeirão Preto (FFCLRP). Universidade de São Paulo (USP). Ribeirão Preto , SP, Brazil
• Research place: University of Toronto (U of T), Canada
• Associated to the scholarship: 17/26542-5 - The lived experience of a family caregiver of a person with advanced Cancer and the significances of spirituality, BP.DR

Abstract

This Research Internship Abroad (BEPE) is part of the doctoral study in development, which aims to understand the experience of the family caregiver who accompanies and takes care of the patient with advanced cancer and the meaning attributed to spirituality during the process of dying in the hospital and after the loss of the loved one. To achieve this objective, individual audiographed interviews are being transcribed in full, and analyzed qualitatively according to the theoretical-methodological assumptions of the Phenomenology. The thematic is relevant to the existential suffering experienced by patients and their relatives in the face of the impending death. The Research Internship Abroad is justified because no interdisciplinary research center was found in Brazil with international leadership in theoretical studies and the development of systematized interventions geared specifically to access the suffering and existential needs of advanced cancer patients and their families. The Global Institute of Psychosocial, Palliative and End-of-Life Care (GIPPEC) is an interdisciplinary institute of the University of Toronto, Canada, dedicated to developing research and systematized interventions that address the existential distress of people with advanced and terminal diseases and their families. This project has the following overall objectives: (1) to promote the insertion of the applicant into the GIPPEC, under the supervision of Prof. Gary Rodin and his team, enabling familiarization with new methodological designs in psycho-oncology and palliative care and participation in other studies with the GIPPEC team; (2) To discuss the data obtained in the Brazilian context with the Toronto team, internationally recognized for its expertise in the field, in order to improve the analysis; (3) to allow the researcher to deepen the studies on the domain of spirituality, through participation in the "Managing Cancer and Living Meaningfully" (CALM) Training Program, in order to acquire technical skills and competences that will allow in the future to adapt this model to the Brazilian reality; (4) to identify expressions of existential distress in advanced cancer patients and their families, through interviews to be carried out with this population in a cancer hospital in the city of Toronto, and compared with the data that are being collected in Brazil. The student should remain in GIPPEC for 12 months and the Research Internship Abroad also includes participation in theoretical studies, supervisions, seminars and courses of the Canadian institution (objectives 1, 2 and 3), as well as the development of a new fieldwork involving participant observation and interviewing in Canadian individuals (objective 4). Data will be collected through field notes and interviews, and data will be organized and analyzed through thematic analysis. At the end of the internship period, two articles are expected to be submitted to foreign journals, with the Canadian supervisor as co-author, as well as the scientific report detailing the activities carried out and their main results. This internship will contribute to improve the doctoral project under development in the Brazilian context, also allowing to strengthen and broaden the range of international partnerships of the Laboratory of Teaching and Research in Health Psychology (LEPPS-USP-CNPq), to establish objective conditions for the proposal of an agreement between the University of São Paulo and the University of Toronto, to favor the incorporation of a systematized approach (CALM), especially designed to manage the existential needs of advanced cancer patients and their family caregivers, as well as to promote the sharing of knowledge between institutions in Brazil and Canada.

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, NOV 2021. (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., 2022-03-16. (17/26542-5, 19/02134-0)