Utilizing intricate care networks : An ethnography of patients and families navigating palliative care in a resource-limited setting

• Published in: Palliative medicine p. 2692163241287640
• Main Authors: Wicaksono, Raditya Bagas, Muhaimin, Amalia, Willems, Dick L, Pols, Jeannette
• Format: Journal Article
• Language: English
• Published: England 10.10.2024
• Subjects: family caregivers; navigation; Patients; palliative care; social networks; ethnography
• ISSN: 0269-2163; 1477-030X; 1477-030X
• DOI: 10.1177/02692163241287640

The increase in non-communicable disease burdens and aging populations has led to a rise in the need for palliative care across settings. In resource-limited settings such as Indonesia, however, notably in rural areas, there is a lack of professional palliative care. Little is known about specific palliative care navigation, as previous studies have mostly focused on cancer care navigation. A locally tailored approach is crucial. To explore how patients and families navigate palliative care and the problems they experience. An ethnographic study using in-depth interviews and observations, analyzed using reflexive thematic analysis. Interviews with 49 participants (patients, family caregivers, and health professionals) and 12 patient-family unit observations in Banyumas, Indonesia. Patients and families navigated palliative care through different strategies: (1) helping themselves, (2) utilizing complementary and alternative medicine, (3) avoiding discussing psychological issues, (4) mobilizing a compassionate and advocating community, and (5) seeking spiritual care through religious practices. Our participants used intricate care networks despite limited resources in navigating palliative care. Several problems were rooted in barriers in the healthcare system and a lack of palliative care awareness among the general public. Local primary health centers could be potential palliative care leaders by building upon pre-existing programs and involving community health volunteers. Cultivating a shared philosophy within the community could strengthen care collaboration and support.