In sub-Saharan Africa, fewer than one in ten people who need palliative care currently receive it. This research group will test three practical ways to expand access for the groups most often left out: children with life-limiting illness in Uganda, cancer patients in Zimbabwe, and people with chronic organ failure in South Africa. The scale of the problem is stark—the World Health Organization reports that 80% of people needing palliative care live in low- and middle-income countries, and by 2060, 83% of all deaths involving serious health-related suffering will occur there. The researchers will integrate a child-centred outcome measure into Ugandan paediatric care, develop a model of integrated cancer palliative care in Zimbabwe, and create a symptom self-management intervention for pain, breathlessness, and fatigue in South Africa. If successful, the work could shift palliative care from a neglected afterthought to a standard component of universal health coverage across the region, reducing suffering for millions who currently die without relief.
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Research question How can palliative care access be expanded to underserved groups to meet UHC goals in sub-Saharan Africa? Background Universal Health Coverage goals include palliative care as an essential health service to reduce the global inequity of suffering in progressive illness. The WHO reports that 80% of those who need palliative care live in LMIC, while <10% receive it. By 2060, 83% of all deaths with serious health-related suffering will occur in LMIC (5.14 million in low-income countries, 16.84 million lower-middle and 17.93 million upper-middle). The greatest increase will be in low-income countries (155%). In sub-Saharan Africa, poor palliative care access has been identified for children (of 21 million children globally who could benefit, 97% live in LMIC), for adults attending oncology services (cancer will be the greatest cause of serious health-related suffering by 2060), and for those with chronic illness attending primary care. This is compounded by lack of capacity in the specific challenges of palliative care research. Aims Workstream 1: To integrate a child-and family-centred outcome measure into children’s palliative care at 3 Ugandan demonstration sites, developing data usage plans for quality improvement, and to deliver a manual for regional adoption.?? Workstream 2: To develop a model of integrated cancer palliative care in Zimbabwe that is appropriate and acceptable and determine the feasibility of an RCT evaluation design.? Workstream 3: To develop and assess the acceptability and feasibility of implementing a symptom self-management intervention for people living with chronic organ failure in South Africa, focusing on the high prevalence symptoms of pain, breathlessness, and fatigue. Methods Workstream 1: Institute for Healthcare Improvement “Model for Improvement” stages: a) forming team; b) setting aims; c) establishing measures; d) selecting changes; e) testing changes; f) implementing changes; and g) spreading changes. Conducted in 3 models of paediatric palliative care, each establishing improvement targets for child-centred outcomes. Workstream 2: Intervention development drawing on primary qualitative data with Theory of Change workshop. Adaptation of a costing tool for formal and informal costs will be followed by a hybrid randomised cluster feasibility trial with nested qualitative process data and implementation measures. Workstream 3: Initial scoping review and stakeholder focus groups will model the intervention processes and outcomes, refined through Theory of Change workshop for rapid consultation and consensus. A non-randomised feasibility study with embedded qualitative work will identify intervention process, acceptability and optimisation. Each Workstream has cross-national integration activities. Consortium members attend a bespoke leadership programme, and join both Workstream Steering Groups and 4 PhD supervisory boards. Local expert workshops with stakeholders will adapt outputs to the three countries. Anticipated pathway to impact and dissemination Co-produced outputs with PPI teams will be adapted to each country with policy workshops. Impact via: our WHO Collaborating centre, African Palliative Care Association’s African Heads of Government network, All Party Parliamentary Group global health, World Hospice Palliative Care Alliance (UN and WHO official relation).
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