Family Perspectives on Key Elements of Good Home Palliative Care in South and Southeast Asia: A Scoping Review

Abstract

Palliative care is a comprehensive approach aimed at improving the quality of life of patients with serious illness and their families. Nevertheless, there exists a dearth of systematically synthesized empirical evidence regarding the key elements that contribute to good home palliative care (HPC) from a familial standpoint in the context of South and Southeast Asia. This paper aims to describe family perspectives on key elements of good home palliative care in both regions. We conducted a scoping review using Arksey and O’Malley’s methodological framework. The search was done in 6 electronic databases: PubMed, Ovid MEDLINE, EMBASE, Web of Science, APA PsycINFO, and APA PsycArticles Full Text. Inclusion criteria were (1) exploring family experiences of palliative care, (2) home setting, and (3) South and Southeast Asian countries. Twenty-four studies were included from Bangladesh (n = 1), India (n = 6), Indonesia (n = 7), Malaysia (n = 2), Singapore (n = 2), and Thailand (n = 6). Five key elements of HPC from family perspectives were comprehensive moral and psychological support; religious and spiritual activities with religious figures involvement; empathetic, responsive, and continued home palliative care; adequate access to information and skills training; and facilitation in dealing with systemic barriers. The crucial role of religious and spiritual activities and the need for facilitation in facing systemic barriers were specific to South and Southeast Asia. HPC teams should be able to provide holistic support for patients and their families, which is influential for the quality of care. Improving care on a systemic level in these regions should be a policy priority.