The perception of burden on the patient's family/caregiver in oncology palliative care in the hospital setting

Abstract

Objective: Unveiling the caregiver's perception and the dimensions of overload experienced in the daily care of their family member in oncological palliative care in the hospital environment, and the implications of spirituality in this coping and as specific objectives: Describe the perception of the caregiver of a patient undergoing oncological palliative care in the hospital regarding the daily care of their family member; Knowing the dimensions of burden experienced by the patient's family member/caregiver undergoing oncology palliative care in the hospital setting; Mention the implications of the spirituality of the family member/caregiver in coping with this lived experience; Propose an educational action together with Continuing Education as a facilitator in addressing the overload of the patient's family caregiver. Method: This is a descriptive research with a qualitative approach in light of the phenomenological perspective in MerleauPonty since it aimed to unveil, understand and reveal an existential situation experienced by human beings. This study is in line with National Health Council Resolution no. 466/12, was submitted and subsequently approved by the Ethics and Research Committee, via Plataforma Brasil, with the consent of the National Cancer Institute, and is registered under CAAE nº 66464423.1.0000.5274, the phenomenological interview began. The setting was the Inpatient sector of the National Cancer Institute IV in the state of Rio de Janeiro. There were 15 interviewees, all primary and family caregivers or those with a very close bond with the patient, using a semi-structured script, with open questions, which allowed the statements to be deepened. The data were interpreted based on Amedeo Georgi's phenomenological analysis. Finally, it is considered that the research achieved the proposed objectives. Results: Being a family caregiver for a patient causes a series of setbacks and in light of this, the search for the meaning of life becomes essential for coping and overcoming the moment experienced. A tendency towards suffering was evident when facing the proximity of terminality, the end of life. The connection with the transcendent, be it faith, hope, communion, prayer life and peace linked to God, is affirmed as an important issue. Conclusion: Identify the spiritual needs of family caregivers and promote support for family caregivers as part of spiritual care, so that this care is humanized and provides comprehensive assistance. Spirituality brings benefits to the family's comprehensive health in the face of the challenges of being a caregiver for a loved one undergoing palliative and oncological care. Limitations: Nurses often experience spiritual care in their daily practices, so it becomes necessary to make care for the human being as a whole a habit and, therefore, academic preparation that reinforces the importance of this dimension for providing a comprehensive care.

Keywords: Palliative Care; Caregivers; Perception.