Palliative care is not only end-of-life care but also a practice that upholds dignity and independence for those living with long-term chronic illnesses. This research project examines the feasibility of implementing palliative care in underserved communities to meet Universal Health Coverage goals and reduce suffering.

The Global Health and Palliative Care (GHAP) research project, funded by the UK National Institute for Health and Care Research (NIHR), was established to lead efforts to expand access to palliative care in Uganda, Zimbabwe and South Africa. The South African project has aimed to develop and assess the acceptability and feasibility of implementing a non-pharmacological symptom self-management intervention for people living with chronic organ failure in South Africa. The intervention focused on the most common symptoms: pain, shortness of breath, and fatigue. The project has been implemented by a multidisciplinary group of researchers from the Departments of Family Community and Emergency Care (FaCE) and Health and Rehabilitation Sciences (DHRS) at the University of Cape Town (UCT).

Throughout the research project, various community leaders and community health workers have journeyed with the research team, introducing them to the community, highlighting blind spots in the research by providing local perspectives, and strengthening the research by contributing to the interpretation and understanding of the findings. With the help of the community members, coined "palliative care activists", the research team was able to create a toolkit for non-pharmacological symptom self-management for use by patients and family members. The toolkit training of local community health workers has been well received. The non-randomised feasibility study of the toolkit intervention suggests that the toolkit may support improved symptom self-management and may have improved participants' quality of life.

Palliative care awareness

"Once this is shared far and wide, Gugulethu will not be the same,” says a palliative care activist who has been working with the research team. Managing stigma and encouraging implementation of the toolkit cannot be done by researchers alone, and this collaboration has given community members the authority to promote the toolkit's use and offset stigma associated with chronic disease and palliative care. 

"…Now, you must teach us how to share this knowledge and carry the toolkit forward." Another community member adds, recognising that research projects must have tangible outcomes for the community members who participated in them and for the community the research covers. 

To the community, feedback and the dissemination of research data are important for resource sharing and social growth. "Resources are not just money; it's the social fabric and relationships created by shared values," says another community attendee.

Moving forward

While the palliative care toolkit will be widely available and the team has trained groups of local community health workers to use it, more work remains to be done.

This groundwork includes expanding access to the toolkit by integrating it into the Community Health Workers’ curriculum, making it accessible through various storytelling and social media channels, and making it available to cultural healers.

Research is imperative for contextually relevant development of healthcare services. It is equally important that communities are involved in research to guide acceptable and appropriate implementation of interventions to support feasibility and longer-term sustainability. 

This research was funded by the NIHR (GHRUG NIHR134440) using UK international development funding from the UK Government to support global health research. The views expressed in this publication are those of the author(s) and not necessarily those of the NIHR or the UK government.