MAP-care: Multimorbid Ageing Primary Palliative Care in Ghana, Malawi and Zimbabwe.

Lead Research Organisation: King's College London

Abstract

Palliative care is a neglected field of global health research, therefore our impact strategy aims to develop methods, generate evidence and build capacity.

For patients and families, we will work with them to move their role in health care from recipients to partners in care development. The PPI methods will facilitate their engagement in the conduct interpretation and dissemination of the research, with a focus on sustained palliative care PPI for benefit across the field.

For academics, we will advance PPI methods and publish our approach for wider LMIC adaptation and replication. The application of the MOREcare guidance will be the first use of this MRC-funded guidance on the development and testing of palliative care complex interventions in an LMIC setting, to stimulate an academic response to the current lack of intervention studies. The adapted costing tool will be made freely available to enable robust measurement of outcomes in future studies of patients and families living with serious comorbid illness. Given the paucity of evidence, the published protocol will offer a replicable study design for intervention development and piloting. For the research field in each partner country (Ghana, Malawi, Zimbabwe) the research capacity building for local investigators and research staff will advance capacity to undertake palliative care research. Each country will lead a component of the analysis, and research staff will co-develop a personal development plan with the local investigator, supported by resources at KCL. The pan-African palliative care research methods seminar, and the local methods seminar in each country, will advance palliative care research in Africa from hospice and acute settings to primary care.

For clinicians, we will train and support them to take an integrated person-centred approach with weekly clinical supervision. Staff will be supported to identify and utilise strategies to sustain change. The data on patient and family need will be disseminated through clinics to give greater understanding of patient and family symptoms and concerns.

For policy makers, the lobbying and advocacy activities of our partners we will use official relations with WHO and the United Nations alongside our responsibility to WHO to provide palliative care policy briefs, to ensure uptake of our outputs. Importantly the provision of the costing tool will enable policy makers to meet the new UHC goal fo palliative care. UHC which requires palliative care with end-user protection from financial hardship, and the freely available tool will enable measurement of costs to ensure that the UHC goal is achieved.

Technical Summary

PHASE 1 DEVELOPMENT (Months 0-12)
i) To establish an African patient and public involvement palliative care network to inform research procedures and dissemination throughout the programme.
ii) To determine primary care staff, patient and family views of costs, barriers, facilitators and necessary support to achieve primary person-centred palliative older care for multimorbid serious illness.
iii) To develop a logic model and novel model of care to integrate value-based care, patient-centred outcome measurement, a decision support tool and staff mentorship.
iv) To refine a cost tool to measure levels of catastrophic expenditure in the context of progressive multimorbidity, suitable for use in LMIC.
PHASE 2 FEASIBILITY (Months 13-18)
v) To assess stakeholders' views on acceptability of the novel model of care and ways to refine to the local context to enhance use.
vi) To appraise implementation and sustainability of the novel model of care.

Sequential mixed-methods cross-national study applying MRC guidelines for development and testing of complex interventions (Phase 1 development and Phase 2 early testing procedures). The MRC complex intervention process guidance will identify the "interdisciplinary mix" (professional and lay) of stakeholders in the health system to engage in the development of the logic model to define and implement the novel care model, and to test fidelity.
Phase 1 will apply Photobox methods for PPI development ,and qualitative in-depth interviews to gain staff (n=10-12 per country) patient/family dyads' views (up to n=15). The costing tool will be revised using the qualitative data and n=7-10 dyad cognitive interviews. Phase 2 will deliver the model of care at 1 rural primary care clinic in each country with before/after data questionnaire data collected from n=36 patients per site, and up to n=15 patient/family dyads in-depth interviews and focus group with n=10 staff.

Publications

10 25 50
 
Description Academic and Hospital Institutions in Ghana 
Organisation Korle Bu Teaching Hospital
Country Ghana 
Sector Hospitals 
PI Contribution We engaged Academic and hospital institutions in Ghana Department of Family Medicine/ Polyclinic at Korle Bu Teaching Hospital, Tetteh Quarshie Memorial Hospital and Kwame Nkrumah University of Science and Technology. We have provided King's affiliate accounts to the local PI and local study coordinator. We will also be providing affiliate accounts to research assistants once they have been recruited. We are working with these institutions to provide access to our short courses and training on Good clinical practice offered at King's college London including access to softwares such as NVivo, Endnote, SPSS and Stata.
Collaborator Contribution The academic institution, Kwame Nkrumah University is leading the conduct, management and analysis of qualitative data. They are also providing training to research assistants on qualitative methods and using NVivo software to manage qualitative data. The hospital facility sites will provide access to our research assistants to collect data.
Impact We are currently seeking ethical approval from study sites and local ethics review board to commence research activities.
Start Year 2020
 
Description Academic and Hospital Institutions in Ghana 
Organisation Kwame Nkrumah University of Science and Technology (KNUST)
Department School of Public Health
Country Ghana 
Sector Academic/University 
PI Contribution We engaged Academic and hospital institutions in Ghana Department of Family Medicine/ Polyclinic at Korle Bu Teaching Hospital, Tetteh Quarshie Memorial Hospital and Kwame Nkrumah University of Science and Technology. We have provided King's affiliate accounts to the local PI and local study coordinator. We will also be providing affiliate accounts to research assistants once they have been recruited. We are working with these institutions to provide access to our short courses and training on Good clinical practice offered at King's college London including access to softwares such as NVivo, Endnote, SPSS and Stata.
Collaborator Contribution The academic institution, Kwame Nkrumah University is leading the conduct, management and analysis of qualitative data. They are also providing training to research assistants on qualitative methods and using NVivo software to manage qualitative data. The hospital facility sites will provide access to our research assistants to collect data.
Impact We are currently seeking ethical approval from study sites and local ethics review board to commence research activities.
Start Year 2020
 
Description African Palliative Care Association (APCA) 
Organisation African Palliative Care Association
Country Uganda 
Sector Charity/Non Profit 
PI Contribution We engaged African Palliative Care Association (APCA) a pan-African Organisation which leads advocacy and policy in Africa. We are working with the Executive Director and Research manager. We have provided King's affiliate account to the Research manager. The executive director is a member of the steering group and research manager is a consultant on this project. Access to softwares (Endnote, NVivo, Stata, SPSS) short courses, training has been provided to the research manager including capacity building to identify students from Makerere University who can use data for MSc in palliative care.
Collaborator Contribution The executive manager is a member of the steering group and provides advise on the conduct and delivery of the project in line with the African context ensuring that the data captured should inform policy. Also engages policy (MOH) and local advocacy organisations to ensure that the is support in the execution of the project. The research manager was involved in preparing slides for power point presentation, revising study tools and training of research assistants in Zimbabwe.
Impact Training in Good clinical practice
Start Year 2020
 
Description College of Medicine, Mangochi District Hospital Malawi 
Organisation University of Malawi
Department College of Medicine
Country Malawi 
Sector Academic/University 
PI Contribution Our team engaged college of medicine, department of family medicine to work with us on this project in Malawi. King's College London has provided affiliate accounts to all members of the research team from Malawi. They are accessing short courses and training offered by King's College London such as 'Good Clinical Practice'. Our research team also provided training to College of medicine research staff on research methods. We have also provided access to softwares such as NVivo, SPSS and Stata for qualitative and quantitative data analysis. King's will also provide data for MSc students to use for secondary data analysis.
Collaborator Contribution College of Medicine has provided links to local health facilities/institutions where we are collecting data in Mangochi. They have a well trained medical doctor with Masters in Family mecidine who has provided access for our local researchers to collect data from participants. They have also engaged the services of a well qualified international researcher to coordinate research activities locally.
Impact 1. Knowledge and skills on conducting and managing qualitative data 2. Certificate in Good Clinical Practice.
Start Year 2020
 
Description University of Zimbabwe and Island hospice and healthcare 
Organisation University of Zimbabwe
Country Zimbabwe 
Sector Academic/University 
PI Contribution Our team engaged University of Zimbabwe Clinical Trials Research Centre (UZ-CTRC) and Island Hospice and Healthcare (IHH) to work with us on this project in Zimbabwe. King's College London has provided affiliate accounts to all members of the research team in Zimbabwe. They are accessing short courses and training offered by King's College London such as 'Good Clinical Practice'. Our research team also provided training to UZ-CTRC and IHH research staff on qualitative research methods. We have also provided access to softwares such as NVivo, SPSS and Stata for qualitative and quantitative data analysis and Endnote for managing references. King's will also provide data for MSc students to use for secondary data analysis.
Collaborator Contribution Our partners have provided us with links to study sites such as Chitungwiza and Parirenyatwa hospitals including Island Hospice and Healthcare which provides services to patients with chronic illnesses for all age groups. Our partners are seeking local ethics approval from the Zimbabwe Medical Research Council and administrative clearance from study sites. Furthermore, they have engaged clinical specialists working with elderly people with chronic illnesses such as chest physicians, lung specialists, oncologists to help with identification and recruitment of study participants. These clinicians also participate in our monthly project meetings.
Impact Training on Good Clinical Practice Training on qualitative research methods, data collection and management.
Start Year 2020
 
Description Patient and Public Involvement (PPI) 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Other audiences
Results and Impact Elderly patients with multi-morbidity who participated in the study and their caregivers (family members) were asked questions about how they want to be engaged in research. They were further asked questions about what PPI means to them, why should members of the public be involved in research and what needs to be done in order to ensure that PPI views and concerns are taken into consideration when planning research activities.

Participants initially did understand what PPI is and why they should be involved in research being an area where there are no established PPI structures. With probing and explanation, participants were able to explain that they want to be involved in recruitment of study participants, explaining the importance of research to colleagues, dissemination of study findings using local structures such as mosques/churches and using radios.
Year(s) Of Engagement Activity 2020,2021