Exploring treatment burden and capacity for self care among patients with HIV/NCD multimorbidity in South Africa to inform interventions (EXTRA)

South Africa (SA) and other sub-Saharan African countries are experiencing a double burden of chronic disease epidemics: one of infectious disease, most notably HIV, and the other, a rapidly evolving epidemic of non- communicable diseases (NCDs) such as diabetes and cardiovascular disease. This is resulting in different patterns of multi-morbidities (two or more simultaneously occurring long term diseases or conditions) to those commonly seen in high income countries.
Concerningly, these chronic diseases are being increasingly seen in younger people, which has implications for their families, economic productivity and healthcare costs.

Currently, chronic healthcare for patients with multimorbidity in SA is fragmented and uncoordinated and does not take into account the increased challenges the patient faces in trying to manage their conditions. The primary aim of this Seed Funding Application is to identify and understand the illness 'workload' experienced by patients with HIV/NCD multimorbidity, as well as their caregivers. This information will be used to ensure that the patient perspective is fully considered in the healthcare reform initiatives that are currently underway in SA, which aim to improve chronic care services. A further aim is to explore the relevance and applicability of existing models that explain the workload involved in NCD treatment and patients' capacity to deal with it. Existing models have been developed in high income countries and we are interested to adapt them to our setting so that they can inform future research and interventions in South Africa and potentially in other low-and middle- income countries.

We will use interviews and discussion groups for this study. We will interview a range of patients and their care givers to explore how they experience self-management workload and their capacity to deal with it. This will be in both an urban and rural setting in the Western Cape province as for example, peoples' access to services may differ. We will then recruit healthcare managers, doctors, nurses and community health workers from the same settings into 'task groups' to discuss these findings and consider what they mean for the redesign of local services and interventions that might reduce patient burden and increase their capacity. We will also hold further meetings to present our findings to policy and health managers at a provincial and national level to influence reforms in the health system.

This project will help us develop a culturally and contextually appropriate model of HIV/NCD workload and capacity for a low -to- middle income setting such as SA. This work will contribute to development of interventions that can then be tested across different settings.

In Sub-Saharan Africa the rising burden of non-communicable diseases (NCDs) against a background of chronic infectious disease epidemics, most notably HIV, is giving rise to patterns of multimorbidy that are occurring in people of working age, with implications for productivity and social stability.

Chronic care for patients with multimorbidity in South Africa (SA) is fragmented, uncoordinated and does not account for increased complexity of the demands on patients. We aim to systematically identify, characterize and understand the workload experienced by patients with HIV/NCD multimorbidity, and their caregivers in SA. This is to ensure that the patient perspective is fully considered in current healthcare reform initiatives to improve primary level chronic care and outcomes. We further aim to explore the relevance and applicability of existing theoretical models of NCD treatment workload-capacity from high income countries and adapt them to inform future research and interventions in the LMIC context of SA.
We will use qualitative research methods to: conduct semi-structured interviews with purposively selected samples of patient and carer dyads in urban and rural settings; convene task groups with healthcare decision makers, doctors, nurses and community health workers from the same settings to discuss the findings and consider their implications for local service redesign and interventions to reduce burden and increase capacity; engage policy and decision makers provincially and nationally in stakeholder meetings to influence health reforms.

This project will help us better understand treatment and capacity issues in a LMIC context. Our theory-informed qualitative analyses will develop a culturally and contextually appropriate theoretical model of HIV/NCD workload and capacity. This work will contribute to development of individual, peer group and service level interventions that can be validated in a large scale, complex intervention trial.

This body of work will have broad clinical, societal and academic impacts. Given that multimorbidity is increasing and affecting a wide range of ages; a greater understanding of treatment burden and capacity issues that influence self- management and health outcomes is essential to inform clinical care, health service delivery and resource allocation. The intended impact of the findings of this work is improved health and wellbeing of people living with HIV/ NCD multimorbidity in LMIC contexts by influencing clinical practice and health care policy while at the same time highlighting points for intervention.

International policy makers and public health advocates who are striving to improve care and outcome for the growing numbers of people with multimorbidity globally will benefit because they will have access to a theoretical model of HIV/NCD workload-capacity adapted to low-and-middle income settings as well as a revised modification of the WHO Innovative Care for Chronic Conditions (ICCC) Framework.

National and provincial policymakers and health service managers will benefit because they are currently grappling with how to re-organise policies and services to improve chronic care and associated outcomes for multimorbidity. Having a better understanding of patient treatment burden and the state of patient capacity through their involvement in the research process and stakeholder meetings will enable them to formulate more realistic and patient-centred care strategies.

Healthcare providers, through participation in the research process, will gain insight and understanding of patient and caregivers' experiences of workload. In addition, our dissemination efforts will ensure increased awareness of the issues of treatment burden and capacity issues for those with HIV/ NCD multimorbidity and its implications for policy and practice. Thus, the findings are likely to inform and influence practitioners' attitudes and advance a more patient-centred approach in their provision of care.

Patients and care givers will benefit from being provided with the opportunity to reflect on and discuss their experiences of treatment burden in a sympathetic setting. This is likely to assist in opening communication with each other and their health providers. Our dissemination efforts to policy makers and practitioners may also influence the care provided to this patient population in the longer term.

Local researchers will benefit from skills transfer from UK theorists and clinicians on the issue of patient workload-capacity. The UK researchers will benefit from an enhanced understanding of how the constructs in these models can be applied to a LMIC setting. Health system researchers will benefit from an improved understanding of this issue for the development and testing of measures and interventions for patients with multimorbidity.

Society: Ultimately such research will contribute to improving the health status and quality of life of the growing number of people living with multimorbidity.