"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.
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 se...
| Publicado en: | Palliative Care & Social Practice Vol. 20; pp. 1 - 15 |
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| Autores principales: | , , , , , , |
| Formato: | research tables/charts Journal Article |
| Publicado: |
Sage Publications Inc.
1/2/2026
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| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=190645381&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 190645381 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 26323524 M8AB jtl: Palliative Care & Social Practice issn: 26323524 maglogo: Y pubinfo: dt: 1/2/2026 vid: 20 pid: 344 pub: Sage Publications Inc. place: Thousand Oaks, California artinfo: ui: 190645381 190645381 190645381 10.1177/26323524251409212 190645381 ppf: 1 ppct: 14 formats: tig: atl: "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. aug: au: Cheong, Mark Wing Loong Aqilah, Nurul Lee, Shaun Wen Huey McCarthy, Sylvia Reidpath, Daniel D. Warren, Narelle Su, Tin Tin affil: School of Pharmacy, Monash University Malaysia, Bandar Sunway, Malaysia sug: subj: Palliative Care Noncommunicable Diseases Caregiver Attitudes Patient Attitudes Community Health Services Health Services Accessibility Evaluation Heart Failure Pulmonary Disease, Chronic Obstructive Kidney Failure, Chronic Rural Areas Malaysia Funding Source Malaysia Human Male Female Adult Descriptive Statistics Qualitative Studies Thematic Analysis Interviews Prospective Studies Audiorecording Data Analysis Software Patient Participation Support, Social Social Participation Trust Financial Support Social Isolation Transportation Caregiver Burden Implementation Science Adult: 19-44 years Male Female ab: 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. Plain language summary: What patients with serious long-term illnesses and their families really want from healthcare services in their communities: Listening to their voices to build better support Many people living with serious long-term illnesses like heart failure, lung disease, and kidney failure need extra support to manage their symptoms and improve their quality of life. Healthcare systems are trying to provide this support through community services that help people stay at home rather than going to hospital. However, these services often struggle to get started or don't work well in practice. We wanted to understand why this happens by talking directly to patients and their family caregivers. We interviewed 25 patients and 9 family members in rural Malaysia over several months to learn about their experiences and what they thought about having new healthcare services in their community. What we found was surprising. Even though these families clearly needed help, many were skeptical about new healthcare services. This wasn't because they didn't want support, but because they had bad experiences with healthcare in the past. They felt that doctors and nurses didn't understand their daily struggles and offered advice that wasn't practical for their real lives. Instead of wanting professional services, people preferred help from family members, friends, and neighbors they already knew and trusted. They valued relationships over services. Family caregivers didn't want to be replaced by professionals – they wanted support so they could continue caring for their loved ones. The families told us that if healthcare providers want to help, they need to first build trust in the community. This means getting to know people, participating in community events, and working with local leaders. They also need to address practical problems like transportation to medical appointments and financial struggles, not just medical symptoms. Our research shows that successful healthcare services must be built with communities, not just for them. Trust and relationships matter more than professional expertise alone. pubtype: Academic Journal doctype: research tables/charts Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
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