^As Caregivers, We Also Need Someone Who Listens^: A Qualitative Study of Family Perspectives as the Main Providers of Palliative Care for Stroke Patients
Raditya Bagus Septian (a*), Heny Suseani Pangastuti (b), Wenny Artanty Nisman (c)

(a) Department of Nursing, Universitas Jenderal Soedirman, Indonesia
(b) Department of Medical and Surgical Nursing, Universitas Gadjah Mada, Indonesia
(c) Department of Maternity Nursing, Universitas Gadjah Mada, Indonesia

Abstract

Background: Palliative care aims to improve the quality of life of both patients and their families who are facing serious illness. Family members, as the primary caregivers, often encounter multiple challenges when providing intensive care for stroke patients. However, there is a limited body of research exploring the experiences of family caregivers in providing palliative care for stroke patients in Indonesia.
Purpose: The aim of this study was to explore the perspectives of family members as primary caregivers of palliative care for stroke patients in Indonesia.
Methods: We conducted a qualitative phenomenological study, involving ten family caregivers of stroke patients receiving home-based care. Participants were recruited using purposive sampling with data obtained from the homecare unit of Dr. Sardjito Hospital, Yogyakarta. Data were collected through semi-structured interviews and unstructured observations until data saturation was reached. Data analysis was conducted using Colaizzi^s method, and the study was reported in accordance with the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist.
Results: We identified two main themes from the analysis. The first theme, The multifaceted impact of families as caregivers, reflects the physical, emotional, spiritual, financial, and social consequences experienced by caregivers. The second theme, Family as the primary source of support in Javanese culture, highlights the role of extended family support and child support within caregiving practices.
Conclusion: Our study identifies the complex impacts faced by family caregivers in providing palliative care at home. The findings suggest that interprofessional healthcare teams should focus not only on the needs of patients but also on those of family caregivers. Furthermore, policies are needed to address these challenges to enhance the quality of life of both patients and their families.

Keywords: family, caregivers, stroke, palliative care, qualitative

Topic: Nursing Care and Technology Development