“As Caregivers,We Also Need Someone Who Listens”: Family Perspectives on Providing Palliative Care for Stroke Patients

Abstract

Objectives: 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. 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. Data were collected through semi-structured interviews and unstructured observations until data saturation were reached. Data analysis was conducted using Colaizzi's method, and the study was reported in accordance with the Consolidated Criteria for Reporting Qualitative Research 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.