NIHR Global Health Research Group on Global Health and Palliative Care (GHAP): expanding access 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. 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 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.

2: In Zimbabwe, we want to ensure that adults 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.

3: In South Africa, we want to make sure that adults with long term illness and who have pain, breathlessness, and fatigue, can benefit from palliative care and rehabilitation to optimise function and independence. We will work with patients, families and
physiotherapists/ occupational therapists to develop simple ways for patients and families to self-manage their symptoms at home.
Why is this being done?

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. 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. 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.

Who is doing it?
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. The project leads are King’s College London and the University of Cape Town UK. Our other partners are the African Palliative Care Association, Makerere University, Mildmay,
University of Zimbabwe, and Island Hospice.

When is it being done?
We will be delivering this project for 4 years from August 2022. Workstream 1 (integrated child- and family-centred outcome measurement) 
 Aim 
To integrate a child- and family-centred outcome measure (i.e. Children’s Palliative Outcome Scale, C-POS) into routine children’s palliative care at three demonstration sites in Uganda, developing implementation and data usage plans for quality improvement, and to deliver a manual for regional adoption. 
 Objectives
i)	To develop a child expert group to advise and act as peer promoters.
ii)	To refine C-POS for implementation across age groups and diagnoses.
iii)	To develop a quality improvement team within each of our three demonstration sites and identify site-specific integration plans.
iv)	To develop a Decision Support Tool (DST) specifying appropriate and feasible clinical responses to real-time data that are feasible and effective within local resources. 
v)	To implement C-POS for quality improvement cycles within routine practice in three demonstration sites.
vi)	To determine stakeholder views on quality improvement mechanisms and impact.
vii)	To develop an implementation manual with consortium partners for the region. 

Workstream 2 (integrated cancer palliative care) 
Aim
To develop a model of integrated cancer palliative care that is tailored to the context of Zimbabwe, and to determine the feasibility of evaluating it using an RCT design. 
Objectives
Phase 1 Develop the intervention (MRC: “Development”) 
i.	Identify patients’, families’ and clinical staff views on acceptable model of integrated cancer palliative care, and on trial methods 
ii.	Develop a theory of change and manualised intervention programme to standardise delivery 
iii.	Adapt an existing palliative care costing tool using qualitative data from objective i on formal and informal care costs 
Phase 2 Assess feasibility of a hybrid cluster randomised controlled trial (MRC: “Feasibility”)
iv.	Determine trial recruitment rates to a RCT for patients and family members
v.	Measure completion of potential family and patient outcome & staff cost data, intervention implementation, and determine staff and family views of the intervention and its processes 
vi.	Confirm primary outcome measure and potential effect size, identify contamination, and develop full trial protocol if full trial is warranted
vii.	Develop methodological guidance for palliative care trials in LMIC & intervention manual adaptation to partner countries 

Workstream 3 (symptom self-management) 
Aim
This workstream aims to develop, then assess the acceptability and feasibility of implementing symptom self-management for people living with chronic organ failure (lung, heart, renal, liver disease) attending primary care in South Africa, focusing on the high prevalence symptoms of pain, breathlessness and fatigue.
Objectives 
Intervention development and modelling objectives:
i)	Identify the active components of the intervention (core and optional), distinct patient sub-groups using systematic review findings
ii)	Refine salient components of intervention delivery, receipt, implementation and outcomes with key stakeholders
iii)	Develop a logic model with contents, mechanism of action and outcomes for the self-management intervention
Acceptability and feasibility testing objectives:
iv)	Assess the acceptability and feasibility of intervention delivery focusing on process and implementation measures
v)	Understand experiences of intervention delivery and receipt, including barriers and facilitators, and utility to patients and professionals
vi)	Explore the impact on candidate outcomes for clinical (symptom burden, function, quality of life) and cost effectiveness
vii)	Synthesise data to inform the eligibility criteria, primary outcome, sample size and resource requirements for a definitive trial.