Title: NIHR Global Health Research Group on Global Health and Palliative Care (GHAP): expanding access
Funder: Department of Health and Social Care

Abstract: Research question_x000D_ How can palliative care access be expanded to underserved groups to meet UHC goals in sub-Saharan Africa?_x000D_ _x000D_ Background_x000D_ 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._x000D_ _x000D_ Aims_x000D_ 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.??_x000D_ 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.?_x000D_ 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._x000D_ _x000D_ Methods_x000D_ 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._x000D_ 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._x000D_ 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._x000D_ 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._x000D_ _x000D_ _x000D_ Anticipated pathway to impact and dissemination_x000D_ 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).

Lay abstract: Aim of the research_x000D_ This research aims to develop ways for people in sub-Saharan Africa to receive palliative care if they need it, focusing on groups that we know are not getting the care they need. _x000D_ _x000D_ Background to the research_x000D_ Palliative care is for people who are living with incurable illness that is likely to shorten their lives. Because palliative care can reduce suffering and improve wellbeing for patients and families, it is now seen as an essential part of healthcare for all. But although most people who need palliative care live in poorer countries, that is also where there is less availability of palliative care. We have found that people with incurable illness in poorer countries have a lot of unnecessary suffering, and the numbers of people suffering is rising rapidly. _x000D_ We have found three groups of people who could benefit from better access to palliative care in sub-Saharan Africa: children and young people, patients living with cancer, and people with long-term illnesses using community-based care._x000D_ The additional challenge is that palliative care has not had enough attention in research and universities, and we must build our skills and networks to address these growing challenges._x000D_ _x000D_ Design and methods used _x000D_ 1: In Uganda we want to improve the quality of palliative care for children and young people, by making sure that care focuses on what matters to them. We will work with three health centres (a hospital, a clinic and a homecare team) and use a simple checklist that helps children (with their families) identify the problems and concerns that are affecting them most._x000D_ _x000D_ 2: In Zimbabwe, we want to ensure that patients with cancer, who are not expected to be cured, can receive palliative care as part of their cancer care at the hospital. Patients, families and their health care team will design together a new way of working that will focus on patients’ symptoms and concerns._x000D_ _x000D_ 3: In South Africa, we want to make sure that patients with long term illness and who have pain, breathlessness, and fatigue, can benefit from palliative care and rehabilitation to optimise independence. We will work with patients, families and physiotherapists/ occupational therapists to develop simple ways for patients and families to self-manage their problems at home._x000D_ _x000D_ Community Engagement and Involvement_x000D_ We have consulted with patients and families on developing this research, and they have inputted to our plans. In each partner country, our Advisory Group (of both adults and children) will be part of the research team. Their specific roles will be to help us design the recruitment plans, to promote the study, to design information and consent forms, to help design interventions, to interpret the findings, input to design of the materials that come from our research, and to present study findings. We will ensure each group has a training programme to support their personal development. We will work together to evaluate the impact of their involvement to continually improve our approach._x000D_ _x000D_ Dissemination _x000D_ We will work at the country level (with governments through our existing networks and healthcare professionals); at the regional/global level (with a series of policy workshops, by our partners the African Palliative Care Association, and with our WHO Collaborating Centre) and for scientists (through African and global conferences, scientific papers and a series of international seminars to improve our science in this area).

Research activity codes: 7.2 END OF LIFE CARE;8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: CANCER AND NEOPLASMS;GENERIC HEALTH RELEVANCE