“Supportive relationships over support services”—A qualitative study of patient and caregiver perspectives on the implementation of community-based palliative care for people living with advanced noncommunicable diseases

Abstract

Background: Community-based palliative care (CBPC) shows promise for supporting patients with advanced noncommunicable diseases, yet implementation remains inconsistent. Most research focuses on organizational and provider perspectives, with limited understanding of patient and caregiver views on service acceptability and implementation.

Objectives: To understand barriers and facilitators to implementing CBPC services from the perspectives of patients with advanced congestive heart failure, chronic obstructive pulmonary disease and end-stage renal failure, and their primary caregivers.

Design: Qualitative study using focused open-ended interviews conducted over four-monthly intervals. Data were analysed using reflexive thematic analysis within a critical realist paradigm.

Methods: Twenty-five patients (11 male, 14 female; 13 CHF, 8 ESRF, 4 COPD) and 9 caregivers (1 male, 9 female) were recruited from the Segamat district in Malaysia. Participants met inclusion criteria using the Supportive and Palliative Care Indicators Tool. One-on-one open-ended qualitative interviews using the reflexive thematic analysis approach explored experiences of living with advanced illness, perceived needs and perspectives on establishing CBPC services.

Results: Four key themes emerged: “What they offer is not what we need” revealed skepticism towards new healthcare services based on negative past experiences; “Supportive relationships over support services” demonstrated preference for care from trusted community members rather than outsiders; “The myriad cares of family” highlighted the valued role of family caregivers in providing companionship and maintaining patient identity; and “How to care for us” identified unmet needs including transportation, financial support and social connection. Participants emphasized that trust-building through community engagement must precede service implementation.

Conclusion: Successful CBPC implementation requires fundamental shifts from expert-driven service delivery towards relationship-centred, community-engaged approaches. Services must be co-developed with communities, prioritize trust-building and address social determinants of health alongside clinical needs. Traditional “build it and they will come” approaches are insufficient for achieving community acceptance and sustainable implementation.