Wicaksono Raditya Bagas, Muhaimin Amalia, Willems Dick L, Pols Jeannette
Department of Ethics, Law, and Humanities, Amsterdam UMC, University of Amsterdam, Amsterdam, The Netherlands.
Department of Bioethics and Humanities, Faculty of Medicine, Universitas Jenderal Soedirman, Purwokerto, Indonesia.
Palliat Med. 2025 Jan;39(1):139-150. doi: 10.1177/02692163241287640. Epub 2024 Oct 10.
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.
SETTING/PARTICIPANTS: 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.
非传染性疾病负担的增加和人口老龄化导致各环境下对姑息治疗的需求上升。然而，在印度尼西亚等资源有限的环境中，尤其是在农村地区，缺乏专业的姑息治疗。由于先前的研究大多集中在癌症护理导航方面，对于特定的姑息治疗导航知之甚少。因地制宜的方法至关重要。
探讨患者及其家庭如何进行姑息治疗导航以及他们所经历的问题。
一项人种志研究，采用深入访谈和观察法，并运用反思性主题分析法进行分析。
背景/参与者：在印度尼西亚班尤马斯对49名参与者（患者、家庭照顾者和卫生专业人员）进行访谈，并对12个患者-家庭单元进行观察。
患者及其家庭通过不同策略进行姑息治疗导航：（1）自助；（2）利用补充和替代医学；（3）避免讨论心理问题；（4）动员富有同情心且积极倡导的社区；（5）通过宗教活动寻求精神关怀。
尽管在进行姑息治疗导航时资源有限，但我们的参与者使用了复杂的护理网络。一些问题根源在于医疗保健系统中的障碍以及公众对姑息治疗的认识不足。当地的初级卫生中心可以通过在现有项目的基础上开展工作并让社区卫生志愿者参与进来，成为潜在的姑息治疗领导者。在社区内培养共同理念可以加强护理协作与支持。
