title: Developing a nurse-led palliative care intervention for adults with cancer and their family caregivers in the resource-challenged context of Indonesia
Creators: name: Purba, Chandra Isabella Hostanida
Publisher: name: University of Glasgow
Year: 2025
Subjects: subject: Cancer, palliative care, person-centred nursing care.

description: Background: Indonesia is the fourth largest country in the world. The prevalence of communicable and non-communicable diseases is high. Cancer diagnosis and treatment are often delayed for more than three months due to limited resources, thus delaying treatment and appropriate supportive care. Indonesia also lacks a formal policy on services to support adults with cancer who need palliative care. Meanwhile, there is a culture that the family has responsibility for caring for their family members. This role increases the burden on family caregivers. In addition, nurses have a pivotal role in palliative care. This doctoral study aimed to identify the need for and develop a nurse-led intervention for adults with cancer and their family caregivers in West Java Province, Indonesia, which will be tested and implemented in postdoctoral work.

Methods: This study is a mixed-methods study carried out in four stages. Stage 1 synthesised evidence on palliative care service development in the countries listed as being in levels 1-3 of palliative care development to justify the main components of the service and suggest the appropriate modes of operation in Indonesia. Stage 2 investigated the current structure of the service, patient access, as well as the type of services and how they work. Stage 3 surveyed the level of needs and the burdens on people and family caregivers. Stage 4 involved gathering participants' views and expectations of a nurse-led intervention via semi-structured interviews. Ethics approval was granted by the University of Glasgow College of Medicine, the veterinary and Life Sciences Ethics Committee (ref no. 200180198) and Hasan Sadikin Hospital. Data were collected using a search strategy for the systematic review, document observation for the audit, surveys using four questionnaires, and an interview topic guide for the interviews. Descriptive statistics were computed and reported for the quantitative data, while thematic analysis was used for the qualitative data analysis. Integrated findings from all four stages were used to map the main components of the proposed new intervention and suggest its mode of operation in Indonesia.

Results: The systematic review suggested a model of care that allows for easy access to palliative care to mitigate burdens and fulfil supportive care needs. The audit found that palliative care development in West Java province, Indonesia, was slow and served few people due to the limited resources in the hospital. In the survey, the participants reported high need supportive care needs in all domains except for sexuality. The top highly need was discussing treatment with staff. All participants experienced a high level of needs and burdens regarding their illness and struggled to balance their living costs and their budget for cancer treatment, which increased the burden on the family. The interviews found that all participants had high expectations of a nurse-led intervention, which they determined would provide easier access to palliative care to help them meet their needs. Overall, the findings demonstrated a need for a nurse-led intervention that focuses on the following issues: 1) greater access to the 'superhero nurse’, 2) extending out the service to the community, 3) providing a low-cost intervention, 4) greater access to pain management, 5) more systematic assessment using patient reports, 6) more training for the family so that they can be more involved in patient care, that is, shared care with the nurse.

Conclusions and implications: Overall, palliative care in West Java team is developing slowly, and most participants reported a high level of need for supportive care. The overarching theme was the barriers to and challenges of providing a nurse-led intervention in a resource-poor setting. The suggested palliative (cancer) care service model developed from this thesis supports the physical, psychological, spiritual and financial components. The hospital- and home-care-based model uses qualified healthcare staff and volunteers. The findings will be valuable for enhancing the status of supportive and palliative care provided in West Java Province, Indonesia. Flexible and comprehensive nurse-led interventions should be developed to support family caregivers to fulfil their roles and sustain their quality of life. Reinforcing the role of nurses as part of the local multidisciplinary palliative care team is valuable because nurses are available 24 hours a day for patients. These results significantly contribute to the emerging literature on palliative care initiatives in resource-challenged countries.