MAP-care: Multimorbid Ageing Primary Palliative Care in Ghana, Malawi and Zimbabwe.
Lead Research Organisation:
King's College London
Department Name: Palliative Care and Rehabilitation
Abstract
What is the problem?
People around the world are ageing, especially low and middle income countries. This presents a new challenge- how can we provide care that is focused on the person rather than the multiple illnesses that they are likely to live with? Long term illnesses are becoming more common as people age, and living with these multiple illnesses can present many symptoms, psychosocial and spiritual concerns. Survival can be unpredictable, and cure cannot be achieved for many conditions associated with ageing.
What might be a solution?
We are a group of researchers, doctors and nurses working in palliative care. Palliative care helps to reduce the burden of symptoms and concerns faced by people whose disease cannot be cured, and which will worsen leading to death. Palliative care focuses on the patient, their family rather than their disease. Because of this, palliative care has been recommended for people who are living within multiple illnesses. Most contact with health staff, especially in rural areas, is with primary care. Primary care offers a strong potential to improve the care of older patients and families who are facing serious multiple illnesses by delivering palliative care.
What do we plan to do?
We will work with patients, families, health staff and Ministry of Health to design a new way to deliver palliative care from within primary care for older patients with multiple serious illnesses. We will then try delivering this now way to deliver care within primary care, and find out if it is delivered in the way we expected and what patients, families and staff think of the new way of working. This will happen in Ghana, Malawi and Zimbabwe.
We will do this in a number of steps. First, we will work with patients and families to find the best way for them to be able to give their thoughts and views on this study. Then we will talk to a range of patients, families and staff to get their views on how the new way of delivering care night look and how it could work. We then hold a meeting for all those people who are relevant to this goal (patients, families, clinical staff, clinical managers, Ministry of Health) to work together to build the new way of caring for patients> The research team will also use the information from patients, families and staff to work on a measure of care costs to ensure it is relevant for older people with multiples serious illness.
Once these steps are complete we can then try delivering this model of care at a rural district hospital primary care service. Using questionnaires we will ask patients about their health and wellbeing and the quality of care they receive both before delivery. We will also have in-depth discussions with patients, families and staff to ask their views and experiences of the care, and to try and discover whether it worked in the way we planned.
What do we hope will be achieved?
We know that palliative care improves patient and family wellbeing and can also be cheaper than care usually received. In Africa, palliative care has not focused on the common diseases of older people. In our three partners countries we will move forward our understanding of how to expand the benefits of palliative care into primary care for older people with multiple serious illnesses. We will deliver a series of new advances: how to work with patients and families to inform work in this field; report the palliative care needs of older patients with multiple serious illnesses and staff views on how to meet them within existing settings; clear understanding and detailed description of how to achieve the care delivery from the views of all needed to engage for success; adapted questionnaire that will allow us to measure the costs of care for patients, families and the health system; views from those delivering and receive the care on what helps it to improve wellbeing and what makes it difficult; a revised "manual" on how to deliver for wider testing and rollout.
People around the world are ageing, especially low and middle income countries. This presents a new challenge- how can we provide care that is focused on the person rather than the multiple illnesses that they are likely to live with? Long term illnesses are becoming more common as people age, and living with these multiple illnesses can present many symptoms, psychosocial and spiritual concerns. Survival can be unpredictable, and cure cannot be achieved for many conditions associated with ageing.
What might be a solution?
We are a group of researchers, doctors and nurses working in palliative care. Palliative care helps to reduce the burden of symptoms and concerns faced by people whose disease cannot be cured, and which will worsen leading to death. Palliative care focuses on the patient, their family rather than their disease. Because of this, palliative care has been recommended for people who are living within multiple illnesses. Most contact with health staff, especially in rural areas, is with primary care. Primary care offers a strong potential to improve the care of older patients and families who are facing serious multiple illnesses by delivering palliative care.
What do we plan to do?
We will work with patients, families, health staff and Ministry of Health to design a new way to deliver palliative care from within primary care for older patients with multiple serious illnesses. We will then try delivering this now way to deliver care within primary care, and find out if it is delivered in the way we expected and what patients, families and staff think of the new way of working. This will happen in Ghana, Malawi and Zimbabwe.
We will do this in a number of steps. First, we will work with patients and families to find the best way for them to be able to give their thoughts and views on this study. Then we will talk to a range of patients, families and staff to get their views on how the new way of delivering care night look and how it could work. We then hold a meeting for all those people who are relevant to this goal (patients, families, clinical staff, clinical managers, Ministry of Health) to work together to build the new way of caring for patients> The research team will also use the information from patients, families and staff to work on a measure of care costs to ensure it is relevant for older people with multiples serious illness.
Once these steps are complete we can then try delivering this model of care at a rural district hospital primary care service. Using questionnaires we will ask patients about their health and wellbeing and the quality of care they receive both before delivery. We will also have in-depth discussions with patients, families and staff to ask their views and experiences of the care, and to try and discover whether it worked in the way we planned.
What do we hope will be achieved?
We know that palliative care improves patient and family wellbeing and can also be cheaper than care usually received. In Africa, palliative care has not focused on the common diseases of older people. In our three partners countries we will move forward our understanding of how to expand the benefits of palliative care into primary care for older people with multiple serious illnesses. We will deliver a series of new advances: how to work with patients and families to inform work in this field; report the palliative care needs of older patients with multiple serious illnesses and staff views on how to meet them within existing settings; clear understanding and detailed description of how to achieve the care delivery from the views of all needed to engage for success; adapted questionnaire that will allow us to measure the costs of care for patients, families and the health system; views from those delivering and receive the care on what helps it to improve wellbeing and what makes it difficult; a revised "manual" on how to deliver for wider testing and rollout.
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.
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.
Planned Impact
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.
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.
Organisations
| Description | Co-designing and disseminating a palliative are pathway : |
| Geographic Reach | National |
| Policy Influence Type | Participation in a guidance/advisory committee |
| URL | https://strokesupportmalawi.org/news/https-strokesupportmalawi-org-news-sso-malawi-participates-in-i... |
| Title | MAPcare intervention for elderly people |
| Description | We developed the MAPcare intervention using data from in-depth qualitative interviews, literature review and theory of change workshop. The intervention consisted of three components: 1) We developed a training package for health professionals working in primary care. 2) mentorship and support provided to health professionals and 3) process map with pathway to impact. The training content was developed by the researchers across the three countries. The training was also delivered by local researchers face-to-face. We created a poster 'The ASK ASK TELL ASK PLAN' which mentees are using to handle difficult conversations with patients and families. Mentorship and support was provided by local researchers either face-to-face or online depending on availability of resources. |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2023 |
| Provided To Others? | No |
| Impact | We have published the poster and it has been pasted across the primary care clinics in all the three countries. Mentees are using it to communicate or share information with patients and families especially in terms of managing difficult conversation. |
| Title | Patient and Carer Cost measure |
| Description | We refined the Pa-tient and Carer Cancer CosT (PaCCCt) tool adapted in Malawi from the WHO TB patient cost survey to advanced cancer in Malawi (co-applicant Dr Jane Bates). We ensured that the refined PaCCCT (a) yields information of clinical relevance to patients and families with serious multimorbid illness, (b) covers those domains considered to be important to this population, and (c) that we achieve a consensus among specialists that (a) and (b) have been met. Initially we conducted in-depth qualitative interviews with patients and caregivers (n=15 dyads) in each country and asked questions about formal and informal costs. Their responses informed refinement of the PaCCCt measure. We then conducted cognitive interviews with patients and caregivers: -Sampling for cognitive interviews n=7 purposively sampled dyads in each country, sampled by age, diagnosis, gender. -Data collection determined tool comprehension, retrieval, decision and response with both think aloud and verbal probing. -Analysis: Thematic and content analysis. We mapped their responses to each item in terms of their thoughts about each item (i.e whether the question was clear, made sense or not, how we could reword or rephrase the question etc). These comments were reviewed and agreed by all country partners through a consensus meeting. The PaCCCt was then refined and we now call it 'the Palliative Care Cost Tool. |
| Type Of Material | Physiological assessment or outcome measure |
| Year Produced | 2022 |
| Provided To Others? | No |
| Impact | We used the total in our feasibility testing study. Data analysis currently underway. |
| Title | Feasibility testing |
| Description | We collected data from n=36 patients and n=36 family caregivers in each country. In total we collected data from n=108 patients and n=108 family caregivers. For patients we used: 1) the adapted PaCCCT cost tool for formal and informal service use and costs 2) Integrated African Palliative Outcome Scale for symptoms and concerns, 3) Centre for Epidemiological studies-Depression (CES-D) for depressive symptoms, 4) World Health Organisation-Quality of Life (WHO-QOL-bref) for quality of life, 5) Patient Experience Questionnaire (PEQ) for patient experience about care; 6) Consultation And Relational Empathy (CARE), and 7) The Australia-modified Karnofsky Performance Scale (AKPS) to measure performance and function. Data was collected at baseline (T0) and month 4 (T1). At follow-up we retained n=30 patients and n=26 caregivers in Malawi, n=32 patients and n=26 caregivers in Ghana and n=30 patients and n=24 caregivers in Zimbabwe. -Data analysis: we have calculated recruitment rate, attrition rate, and data completeness, time to complete (relevant to older people with multimorbid illness) and change using non-parametric within-subject methods (Wilcoxon). |
| Type Of Material | Data analysis technique |
| Year Produced | 2023 |
| Provided To Others? | No |
| Impact | We have been able to establish feasibility of recruiting and retaining older people and their family caregivers to a study for a period of four months. This provides a basis for a full trial across three countries. |
| Title | Intervention development |
| Description | We conducted in-depth qualitative interviews with N=12 patients and n=12 family caregivers in Ghana, n=15 patients and n=15 family caregivers in Malawi, n=15 patients and n=15 family caregivers in Zimbabwe to elicit their views about a model of care for the elderly people attending palliative care in primary care. We also conducted in-depth focus group discussions with staff at two sites working in primary palliative care facilities. We recruited n=12 participants in Ghana n=12 participants in Malawi, n=10 participants in Zimbabwe. -Data collection tools for patients and family caregivers: Topic guides addressed expectations, barriers and facilitators to health care; communication, information sharing and decision making; preferred roles in consultations and self-management, views of person-centred care and multidimensional needs; medical and non-medical treatment and care costs plus productivity losses (out of pocket and health provider payments; informal care activities, opportunity costs of informal care). -Data collection tools and content for staff: definition of current standard practice and identify multidimensional needs, costs, barriers and facilitators, system changes and training needed to achieve goals of person-centred care within existing resources and formal/informal health care provision. The topic guide drew on theories of Values Based Care and patient-centred care. -Data analysis: Verbatim transcripts were translated into English where necessary, and were imported to NVIVO for framework analysis. Charting into common coding frame, providing comparison between sets (i.e. patients, families or staff), common themes and divergent cases. The frame enables comparison on potential variability between countries/diagnostic groups. We used deductive analysis to identify the appropriate elements of primary palliative care. We also used inductive analysis building on our previous work on person-centred care theoretical development using data from patients with serious illness in sub-Saharan Africa and the Middle East. |
| Type Of Material | Data analysis technique |
| Year Produced | 2022 |
| Provided To Others? | No |
| Impact | We used this dataset to develop a framework and a model of care for elderly people which informed the components of the person-centred intervention. The intervention was tested in each country at one primary care facility. |
| Title | Intervention evaluation |
| Description | We conducted in-depth qualitative interviews with n=13 patients and family caregiver dyads in Malawi, n=14 patients and family caregiver dyads in Ghana and n=15 patients and family caregiver dyads in Zimbabwe, who accessed care from clinicians who were trained to provide new model of care. We aimed to elicit their perspectives and experiences regarding the intervention delivered at the primary care facility. -Data collection tools and content: We developed topic guides for patients and family caregiver dyads. We explored patient and caregiver experience and acceptability of primary care management of older people and multi-morbidity illness, perceived impact and attribution of effects, management perspectives on implementation and sustainability, any changes they observed with the way clinicians were delivering care, what they liked or did not like about the new model of care. We also conducted in-depth focus group discussions with n=6 health professionals in Ghana n=8 health professionals in Malawi and n=12 health professionals in Zimbabwe who received training and participated in mentorship and support programme as part of the intervention. Data aimed to capture their experiences implementing the new model of care in primary care. -Topic guides explored clinicians' perspectives on programme benefits, access to recommended pain and symptom controlling drugs, challenges of the new approach, proposed adaptations, challenges to delivering and maintaining the model, what they liked or did not like about the new model of care. These data is currently being transcribed and will be analysed thematically using framework approach. |
| Type Of Material | Data analysis technique |
| Year Produced | 2023 |
| Provided To Others? | No |
| Impact | Data on participants perspectives shows that feasibility, acceptability and appropriateness of the intervention has been established. |
| 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. Our researchers have downloaded NVivo software which they are able to use to analyse data. We have provided training in qualitative data analysis and the team will soon learn how to code transcripts. Towards the end of last year, we introduced research seminar series where we invite academics to present on a research topic to members of the research team from Malawi. We developed a time sheet for these seminars which take place every two months (last Thursday for that month). So far we have had three seminars: 1) Health outcomes measurements which was presented by Dr Jane Bates who is a country lead in Malawi, 2) Theory of Change which was presented by two external academics: Professor Crick Lund from King's College London and Dr Lindsay Farrant from University of Cape Town, 3) Intervention Development which was presented by Professor Richard Harding. Other topics to be presented are 4) Qualitative data analysis 5) Process evaluation and 6) Clinical trials in palliative care. So far feedback from all the participants has been positive. Researchers are also completing training logs after training highlighting what they have learned from the seminar and how they will use the knowledge in their work. |
| 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. The local team is collecting the data: qualitative interviews with patients and family caregivers dyads n=15 across two sites and conducted one focus group at each site. The team transcribed and translated (where applicable) interviews and shared the data using SharePoint. Since the team will be trained in using NVivo for data management and analysis, including developing a coding frame and coding the interviews. The local team has gathered data on how members of the public can be involved in research, why they think research is important, in what way they should be involved in research. These discussions have helped to bring value to the public in terms being recognised as important stakeholders in research. |
| Impact | We are currently seeking ethical approval from study sites and local ethics review board to commence research activities. Ethics approval took several months but was finally granted in July 2020 from Korle Bu teaching hospital and Ghana Health Sciences Ethics Review Committee. 1. Knowledge and skills in transcribing qualitative interviews 2. Knowledge and skills in analysing qualitative data such as coding using Nvivo software. 3. Sharing of information and ideas through research seminar series. |
| 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. Our researchers have downloaded NVivo software which they are able to use to analyse data. We have provided training in qualitative data analysis and the team will soon learn how to code transcripts. Towards the end of last year, we introduced research seminar series where we invite academics to present on a research topic to members of the research team from Malawi. We developed a time sheet for these seminars which take place every two months (last Thursday for that month). So far we have had three seminars: 1) Health outcomes measurements which was presented by Dr Jane Bates who is a country lead in Malawi, 2) Theory of Change which was presented by two external academics: Professor Crick Lund from King's College London and Dr Lindsay Farrant from University of Cape Town, 3) Intervention Development which was presented by Professor Richard Harding. Other topics to be presented are 4) Qualitative data analysis 5) Process evaluation and 6) Clinical trials in palliative care. So far feedback from all the participants has been positive. Researchers are also completing training logs after training highlighting what they have learned from the seminar and how they will use the knowledge in their work. |
| 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. The local team is collecting the data: qualitative interviews with patients and family caregivers dyads n=15 across two sites and conducted one focus group at each site. The team transcribed and translated (where applicable) interviews and shared the data using SharePoint. Since the team will be trained in using NVivo for data management and analysis, including developing a coding frame and coding the interviews. The local team has gathered data on how members of the public can be involved in research, why they think research is important, in what way they should be involved in research. These discussions have helped to bring value to the public in terms being recognised as important stakeholders in research. |
| Impact | We are currently seeking ethical approval from study sites and local ethics review board to commence research activities. Ethics approval took several months but was finally granted in July 2020 from Korle Bu teaching hospital and Ghana Health Sciences Ethics Review Committee. 1. Knowledge and skills in transcribing qualitative interviews 2. Knowledge and skills in analysing qualitative data such as coding using Nvivo software. 3. Sharing of information and ideas through research seminar series. |
| 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 director 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. The research manager is also involved in organising research seminars, identifying presenters and topics, chairing meetings, collating evaluation forms and supporting local researchers with training logs. We are also working with APCA on PPI methods in the execution of palliative care research in the elderly population with multi-morbidity. |
| Impact | 1.Training in Good clinical practice 2. Knowledge and skills in transcribing qualitative interviews 3. Knowledge and skills in analysing qualitative data such as coding using Nvivo software. 4. Sharing of information and ideas through research seminar series. |
| 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. Our researchers have downloaded NVivo version 12 pro software which they are able to use to analyse data. We have provided training in qualitative data analysis and the team has been trained on how to code transcripts. Three researchers in Malawi coded the transcripts with Kennedy Nkhoma, this has been a very good experience for all researchers. Towards the end of last year, we introduced research seminar series where we invite academics to present on a research topic to members of the research team from Malawi. We developed a time sheet for these seminars which take place every two months (last Thursday for that month). So far we have had three seminars: 1) Health outcomes measurements which was presented by Dr Jane Bates who is a country lead in Malawi, 2) Theory of Change which was presented by two external academics: Professor Crick Lund from King's College London and Dr Lindsay Farrant from University of Cape Town, 3) Intervention Development which was presented by Professor Richard Harding. Other topics to be presented are 4) Qualitative data analysis 5) Process evaluation and 6) Clinical trials in palliative care. So far feedback from all the participants has been positive. Researchers are also completing training logs after training highlighting what they have learned from the seminar and how they will use the knowledge in their work. |
| 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. The local team collected the data: qualitative interviews with patients and family caregivers dyads n=15 across two sites and conducted one focus group at each site. The team transcribed and translated (where applicable) interviews and shared the data using SharePoint. Since the team has been trained in using NVivo for data management and analysis, they were involved in developing a coding frame and coding the interviews. Our research includes PPI methods in the elderly population. The local team has gathered data on how members of the public can be involved in research, why they think research is important, in what way they should be involved in research. These discussions have helped to bring value to the public in terms being recognised as important stakeholders in research. |
| Impact | 1. Knowledge and skills on conducting and managing qualitative data 2. Certificate in Good Clinical Practice. 3. Knowledge and skills in transcribing qualitative interviews 4. Knowledge and skills in analysing qualitative data such as coding using Nvivo software. 5. Sharing of information and ideas through research seminar series. |
| 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. Our researchers have downloaded NVivo software which they are able to use to analyse data. We have provided training in qualitative data analysis and the team will soon learn how to code transcripts. Towards the end of last year, we introduced research seminar series where we invite academics to present on a research topic to members of the research team from Malawi. We developed a time sheet for these seminars which take place every two months (last Thursday for that month). So far we have had three seminars: 1) Health outcomes measurements which was presented by Dr Jane Bates who is a country lead in Malawi, 2) Theory of Change which was presented by two external academics: Professor Crick Lund from King's College London and Dr Lindsay Farrant from University of Cape Town, 3) Intervention Development which was presented by Professor Richard Harding. Other topics to be presented are 4) Qualitative data analysis 5) Process evaluation and 6) Clinical trials in palliative care. So far feedback from all the participants has been positive. Researchers are also completing training logs after training highlighting what they have learned from the seminar and how they will use the knowledge in their work. |
| 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. The local team is collecting the data: qualitative interviews with patients and family caregivers dyads n=15 across two sites and conducted one focus group at each site. The team transcribed and translated (where applicable) interviews and shared the data using SharePoint. Since the team will be trained in using NVivo for data management and analysis, including developing a coding frame and coding the interviews. The local team has gathered data on how members of the public can be involved in research, why they think research is important, in what way they should be involved in research. These discussions have helped to bring value to the public in terms being recognised as important stakeholders in research. |
| Impact | 1.Training on Good Clinical Practice 2. Training on qualitative research methods, data collection and management. 3. Knowledge and skills in transcribing qualitative interviews 4. Knowledge and skills in analysing qualitative data such as coding using Nvivo software. 5. Sharing of information and ideas through research seminar series. |
| Start Year | 2020 |
| Description | Clinical trials in palliative care |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Professor Matt Maddocks delivered a talk on the design and delivery of complex clinical trials in palliative care. This talk was attended by 12 people from across five countries. It sparked debate among participants who didn't know that you can deliver a trial of a non-pharmacological intervention. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Feasibility studies |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | We organised a research seminar on feasibility studies. The talk was delivered by Dr Kennedy Nkhoma (co-applicant's ) and Dr Oladayo Afolabi. This was done tp prepare colleagues working on MAPCare project to have an understanding about feasibility studies. 18 participants attended from across five countries (Malawi, Ghana, Uganda, Zimbabwe and the UK). Participants were excited and this informed their preparations for Phase 2 of the project. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Intervention Development |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | This was our third research seminar presentation and was delivered by Professor Richard Harding. The presented was on Intervention development. Richard outlined the process on developing complex interventions in palliative care using the MRC framework and shared experiences on how he has used this framework to develop a complex palliative care intervention (Treatment Outcomes in palliative care for patients with HIV in Kenya) including active ingredients and mechanism of action. Richard also outlined the revised version of the MRC framework. This meeting attracted audience from King's College London n=2, Ghana n=4, Malawi n=4 , Uganda N=6 and Zimbabwe n=10. Participants stated that they found the talk very informative, for instance some of them stated that even though they know or have heard about MRC framework and complex interventions, they do not have experience on how to use it. This was an important lesson to participants since part of this project involves developing an intervention for the elderly people with multi-morbidity. |
| Year(s) Of Engagement Activity | 2022 |
| 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 |
| Description | Person-centred and value-based care |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | We organised a talk on person-centred and value-based care which was delivered by Dr Sridhar Venkatapuram. The talk centred on the need to focus on both personal and professional values when delivering care to patients. A total number of 18 people attended the talk online from Ghana, Malawi, Zimbabwe. Uganda and the UK. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Qualitative data analysis |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | We organised a session on qualitative data analysis methods. This was delivered online by our co-applicant Professor Catherine Evans and local collaborator in Ghana Dr Adwoa Bemah Boaman Mensah. Several researchers attended (n=16) from Malawi, Ghana, Zimbabwe, Uganda, UK. The talk provoked thoughts on reflectivity and thematic data analysis. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Research Seminar series: Health Outcome Measurements |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | The project lead in Malawi, Dr Jane Bates presented on 'Health Outcome Measurements'. This is part of the research seminar series which we introduced in 2021. This was the first event and was held on Thursday 28th October 2021. King's college London hosted the event virtually using Zoom platform. We had participants from Zimbabwe/Island hospices and healthcare n=12, Uganda/African Palliative Care Association n=6, Ghana/College of Physicians and Kwame Nkrumah University of Science and Technology n=8, Malawi/College of Medicine n=3 and King's College London n=2. The objectives of this session were: Define health outcomes according to WHO Why use outcomes in research Examples of patient reported outcomes and patient reported experience measures in palliative care Challenges of using outcome measures in palliative care This session was thought provoking and the audience shared experiences using outcome measures in research and clinical practice. Most participants reported using the African Palliative Care Outcome Scales (APOS) and the Quality of Life (EQ5D) measure. There was a debate on choice of using the APOS (validated in Africa), scored on a Likert scale 0-5 or the Integrated palliative care outcome measure (validated in the UK), scored on a Likert scale 0-4. Jane Bates shared her experiences using the UK version because the African version was not easy to administer in Malawi, participants could only chose either 0 or 5 option (they could not chose any score between 0 and 5). This was interesting because the audience from Africa thought it would have been appropriate to use the African version. There was also a discussion about the African Integrated measure which is currently undergoing validation using datasets from Sudan and Zimbabwe. The team will use the lessons learnt to develop a measure for calculating costs of palliative care services, which is the next phase of this project. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Theory of Change |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Professor Click Lund and Dr Lindsay Farrant (who are our collaborators in another project on health systems strengthening in sub-Saharan Africa) presented on Theory of Change (ToC). The main aim of this session was to share knowledge and experiences on how to design a ToC workshop. Click covered what ToC is, it's elements and the process of preparing and delivering a ToC workshop. Lindsay presented on practical example of ToC which she delivered for her project in South Africa (facilitation, venue, delegates, process map and ToC map). The meeting was held virtually using Zoom platform on 25th November 2021. This was the second research seminar for this project. We had n=3 from King's College London, n=6 from Uganda, n=3 from Malawi, n=3 from Ghana and n=12 from Zimbabwe. It was a thought proving meeting, the experiences shared by Crick and Lindsay have informed the planning to our ToC workshops to be delivered in Malawi, Ghana and Zimbabwe (which are some expected outputs from this project). We are planning the first ToC workshop in Malawi from 28-30th March 2022. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Theory of change workshop |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | "Theory of Change" workshops were held in Malawi (29th March 2022), in Ghana (26th May 2022), and Zimbabwe (24th June 2022). We followed the MRC guidance on Process Evaluation of Complex Intervention and 'Theory of Change' workshop format. We had the following stakeholders who attended patients, family caregivers, clinical and advocacy partners, palliative care specialists, Ministry of health representatives. Stakeholders were divided into groups and were asked to discuss challenges faced by the elderly people in primary care and pathway to impact. These components formed a plausible country-specific model of contextual barriers and facilitators (environment, skills policy), intended population, components, intended mechanisms of action, and outcomes. We developed a logic model for each country and manualised the intervention with clearly defined set of components and implementation strategy. In each country 25 stakeholders attended the meeting. |
| Year(s) Of Engagement Activity | 2022 |