A WUN-supported project to enable better quality of life for dying people is addressing the global divide in access to palliative care. It’s also notable for the equity of its approach.
It involves six WUN members[i] and six external partners[ii] and will support nurses, and those who educate them, to deliver appropriate, sensitive and life-enhancing palliative care, especially in low- and middle-income countries (LMICs). Just 14% of patients who need palliative care receive it,[iii] a “terrible injustice that is largely ignored in global health,” says Dr. Stephanie Ejegi-Memeh, a Postdoctoral Research Fellow based at the Mesothelioma UK Research Centre at the University of Sheffield.
“Palliative care is virtually non-existent in many low- and middle-income countries. it can be misunderstood,” says Merri Iddrisu, a qualitative researcher and PhD candidate at the school of nursing and Midwifery, University of Ghana. “But the increasing trajectories of chronic diseases in LMICs means the global need for palliative care will keep growing.”
Limited training for nurses and health professionals is a significant barrier to patient access to palliative care, adds Dr. Ejegi-Memeh, a qualified nurse. She does not remember receiving specific training: “What sticks with me is training on the wards with real patients and their family members.” Evidence supports Ejegi-Memeh’s experience: many nurses don’t feel adequately prepared to provide palliative care.[iv]
WUN’s project brought together an international network of nursing researchers and educators to explore global palliative care nursing education. Researchers synthesised findings from all studies conducted in LMICs; they are interviewing educators and student nurses from South Africa, New Zealand, Ghana, Uganda and the UK to identify, and learn from, commonalities and differences.
“When I started examining the data I realised many other studies have not represented LMICs,” Iddrisu says. “For example, a Maori perspective is seldom-heard in health research,” adds Ejegi-Memeh, “but nobody can provide appropriate palliative care if they ignore the explicit and implicit cultural specificities related to dying and death. That context matters.”
The project has identified traditional and creative interventions which may improve palliative care education. “We need evidence to determine which work well in which settings. They must be locally and culturally relevant,” says Ejegi-Memeh. “Collaborations are vital to achieve this.”
An exemplar of equity in research
Partnerships involving researchers from LMICs and higher-income countries should lead to more equitable research collaboration. WUN’s project is an exemplar, Ejegi-Memeh adds:
“Global health research partnerships often share resources inequitably and distribute authorship credits unfairly. The WUN partner universities in Africa are receiving the highest proportion of this funding. It’s incumbent to consider reparative justice when universities collaborate.”
Iddrisu, lead author of the project paper, foresees profound impact from this project because of the learning it has fostered of palliative care nursing education. The collaboration will also enhance her qualitative data analysis skills, she says, adding:
“This project has also been valuable to me, for the shared experiences I have gained collaborating with other researchers, developing my network, mentorship, and the opportunity to first author the research paper.”
WUN’s funding has been a springboard for further investment into research and education in palliative care, with the Glynnis Gale Foundation, Henrietta Stockdale Nursing College and the Universities of Sheffield and Leeds committing resources because of the work. Initial analysis is well underway. The researchers will present at a conference in May 2024.
- For further information about this research project click here.
- Click here for a video summary of this project.
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- Researchers met in Kimberley, South Africa in October 2023. A webinar will follow in April 2024 and the team will present at the European Association of Palliative Care congress in May 2024.
[i] Research teams: University of Alberta, The University of Auckland, University of Ghana, University of Leeds, Makerere University and The University of Sheffield.
[ii] Partners: Mesothelioma UK, Glynnis Gale Foundation, Lancaster University, African Palliative Care Association, Henrietta Stockdale Nursing College, Mesothelioma UK Research Centre.
[iii] World Health Organization estimates, 2020.
[iv] Sekse et al., 2018.