https://orcid.org/0000-0003-1617-2854
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Abstract
The aim of this study was to identify barriers and mechanisms in the development of palliative care in the province of Aceh, North West Indonesia. Several factors, including an ageing population, have increased palliative care needs in the region; however, as with many low to middle income countries (LMICs), palliative care is not well established or integrated into mainstream health care services. Consequently, many people may experience serious health-related suffering (SHRS) at the end-of-life. Qualitative semi-structured interviews and focus groups were conducted with key stakeholders in Aceh, Indonesia and a semi-structured interview guide prompted an exploration of palliative care provision, including barriers and enablers. Interviews were digitally recorded, transcribed, and analysed using the principles of thematic analysis. Eight interviews and two focus groups were conducted with medics (n = 6), nurses (n = 7), hospital management (n = 1) and religious/cultural leaders (n = 2). The findings indicate that all participants recognise a need to reduce SHRS and a growing impetus to embed a culturally salient and sustainable model of palliative care within the Aceh healthcare system. The following four themes indicate key areas for further focus: (1) Local vision and leadership, (2) Prioritisation of palliative care policy and funding, (3) Access to palliative care in community and public services, and (4) supporting palliative care in the cultural context of Sharia law, family, and faith. Future expansion requires the identification of a culturally and socioeconomically salient package of palliative care which operates across rural community and acute care settings and is informed by further evaluation and evidence.
Acknowledgements
The authors would like to thank all the staff who contributed to this study for their time, expertise and most importantly, their hospitality.
Disclaimer statements
Disclosure statement No potential conflict of interest was reported by the author(s).
Funding This work was supported by the Global Challenges Research Fund (GCRF) distributed via the Higher Education Funding Council, to the University of Sheffield and Research England approved.
Data availability statement The participants of this study did not give written consent for their data to be shared publicly, so due to the sensitive nature of the research supporting data is not available.
Additional information
Notes on contributors
Fiona Wilson
Dr Fiona Wilson, PhD, MA, BA, is a course lead and lecturer. She joined the University of Sheffield in May 2016. She has a clinical nursing background having worked in the areas of critical care, palliative care and the care of older people. She is an experienced researcher having worked on several studies exploring issues around service delivery and quality of life for older people, exploring the impact of reminiscence as well as exploring participatory research approaches with older people and hard-to-reach groups. Her most recent research has focussed on access and care decisions in the context of palliative and end-of-life care.
E. Wardani
Dr Elly Wardani, MA PhD, recently joined the Higher Colleges of Technology-United Arab Emirates on January 2022. She was an assistant professor at the University of Syiah Kuala, Banda Aceh-Indonesia. She has been involved in multidisciplinary research with medical and nurses team in building their capacity in communication, safety, and leadership. Her current research has focussed on curriculum development for nurses, diversity and quality of care, and how these impact on overall patients’ safety and satisfaction.
T. Ryan
Professor Tony Ryan, PhD, MA, PGCert, BSc (Hons), work in the field of older people and family care spans 25 years having worked on a number of large-scale research studies and service development projects in the field of dementia, stroke, palliative and supportive care and healthcare workforce. He led a major strand of the South Yorkshire CLAHRC (2009-2013) and most recently co-led the Strategic Research Alliance, a five-year research partnership between the Royal College of Nursing and the University of Sheffield (2017-2022).
C. Gardiner
Professor Clare Gardiner, PhD, BSc (Hons), joined the University of Sheffield in 2015 as a Vice-Chancellor's Fellow, undertaking a Fellowship project on the costs of palliative care in the last six months of life. She previously worked as a senior lecturer at The University of Auckland, New Zealand, before which she was a lecturer and research fellow at the University of Sheffield. She has been involved in palliative and end-of-life care research for over 10 years, and have published over 80 papers in peer review journals. She has been involved in a number of international research projects, totalling over £5 million of funding to date.
A. Talpur
Dr Ashfaque Talpur, PhD, MPH, BSc (Hons), completed his PhD in the Division of Nursing and Midwifery in 2019 under the supervision of Prof. Tony Ryan and Dr. Sharron Hinchliff. His thesis was a constructive grounded theory of elder mistreatment among older people from Pakistani communities living in the UK. Since 2019, he has worked as a research associate in the Division of Nursing and Midwifery.