'We are in control of this thing, and we know what to do now': Pilot and process evaluation of 'Diabetes Together', a couples-focused intervention to support self-management of Type 2 Diabetes in South Africa.

We piloted the delivery of a prototype couples-focused intervention, 'Diabetes Together' with 14 people living with diabetes (PLWD) and their partners, in Cape Town, South Africa in 2022. We aimed to: assess feasibility of recruiting couples in this setting; explore acceptability of intervention materials and changes needed; and investigate whether our prespecified logic model captured how the intervention may work. We used questionnaires, interviews and focus groups after each workshop and after couples completed counselling. We conducted a process evaluation to identify intervention modifications and used inductive thematic analysis to explore whether the data supported our logic model. Twelve of the 14 couples completed the second workshop and 2 couples completed two counselling sessions post-workshop. Feedback showed participants appreciated the intervention and limited improvements were made. Thematic analysis identified four main themes: (1) involving partners matters; (2) group work supports solidarity with other couples; (3) improving communication between partners is crucial; and (4) taking part helped couples to take control of diabetes. Data suggested the logic model should explicitly acknowledge the importance of group education and of equalising partners' knowledge. This pilot suggests that 'Diabetes Together' increased knowledge and skills within couples and could facilitate improved, collaborative self-management of diabetes.

Interdisciplinary perspectives on multimorbidity in Africa: Developing an expanded conceptual model.

Multimorbidity is an emerging challenge for health systems globally. It is commonly defined as the co-occurrence of two or more chronic conditions in one person, but its meaning remains a lively area of academic debate, and the utility of the concept beyond high-income settings is uncertain. This article presents the findings from an interdisciplinary research initiative that drew together 60 academic and applied partners working in 10 African countries to answer the questions: how useful is the concept of multimorbidity within Africa? Can the concept be adapted to context to optimise its transformative potentials? During a three-day concept-building workshop, we investigated how the definition of multimorbidity was understood across diverse disciplinary and regional perspectives, evaluated the utility and limitations of existing concepts and definitions, and considered how to build a more context-sensitive, cross-cutting description of multimorbidity. This iterative process was guided by the principles of grounded theory and involved focus- and whole-group discussions during the workshop, thematic coding of workshop discussions, and further post-workshop development and refinement. Three thematic domains emerged from workshop discussions: the current focus of multimorbidity on constituent diseases; the potential for revised concepts to centre the priorities, needs, and social context of people living with multimorbidity (PLWMM); and the need for revised concepts to respond to varied conceptual priorities amongst stakeholders. These themes fed into the development of an expanded conceptual model that centres the catastrophic impacts multimorbidity can have for PLWMM, families and support structures, service providers, and health systems.

Understanding the impacts of the COVID-19 response measures on Deaf adults in Cape Town.

Background: International literature has evidenced that Deaf people have been disadvantaged during the COVID-19 pandemic; however, there is currently little research published within the South African context. Objectives: This study investigated the ways in which the COVID-19 pandemic and its consequent response measures impacted Deaf adults in Cape Town. Method: Using a descriptive approach, semi-structured, qualitative interviews were held with 15 Deaf adults in Cape Town, South Africa. Participants were purposively selected through a local Deaf organisation. Data were analysed using thematic analysis. Results: Data revealed the challenges experienced when accessing information, the impact of communication barriers on daily life, and how the response measures impacted access to healthcare. Conclusion: The findings of this study demonstrate how the needs of the Deaf community were overlooked and their voices disregarded during the planning of the national pandemic response, ultimately having detrimental consequences. Therefore, the authors argue for greater inclusion of Deaf representatives to ensure equal access to information and resources, especially during a crisis. Contribution: This study contributes to the growing body of knowledge on the consequences of the COVID-19 pandemic in the field of disability and insights can inform both future research and interventions to promote equity and inclusion for Deaf people.

Ubuntu as a mediator in coping with multimorbidity treatment burden in a disadvantaged rural and urban setting in South Africa.

BACKGROUND: People living with multimorbidity in economically precarious circumstances in low- and middle-income countries (LMICs) experience a high workload trying to meet self-management demands. However, in countries such as South Africa, the availability of social networks and support structures may improve patient capacity, especially when networks are governed by cultural patterns linked to the Pan-African philosophy of Ubuntu, which promotes solidarity through humanness and human dignity. We explore the mediating role Ubuntu plays in people's ability to self-manage HIV/NCD multimorbidity in underprivileged settings in urban and rural South Africa. METHODS: We conducted semi-structured interviews with 30 patients living with HIV/NCD multimorbidity between February-April 2022. Patients attended public health clinics in Gugulethu, Cape Town and Bulungula, Eastern Cape. We analysed interviews using framework analysis, using the Cumulative Complexity Model (CuCoM) and Burden of Treatment Theory (BoTT) as frameworks through which to conceptualise the data. RESULTS: Despite facing economic hardship, people with multimorbidity in South Africa were able to cope with their workload. They actively used and mobilized family relations and external networks that supported them financially, practically, and emotionally, allowing them to better self-manage their chronic conditions. Embedded in their everyday life, patients, often unconsciously, embraced Ubuntu and its core values, including togetherness, solidarity, and receiving Imbeko (respect) from health workers. This enabled participants to share their treatment workload and increase self-management capacity. CONCLUSION: Ubuntu is an important mediator for people living with multimorbidity in South Africa, as it allows them to navigate their treatment workload and increase their social capital and structural resilience, which is key to self-management capacity. Incorporating Ubuntu and linked African support theories into current treatment burden models will enable better understandings of patients' collective support and can inform the development of context-specific social health interventions that fit the needs of people living with chronic conditions in African settings.

'I accept his manhood is on life-support': A qualitative understanding of the impact of diabetes on sexual relationships among men and women living with type 2 diabetes and their partners in South Africa.

AIMS: To explore the impact of diabetes on sexual relationships among men and women living with type 2 diabetes People living with type 2 diabetes (PLWD) and their partners in Cape Town, South Africa. METHODS: As part of a larger study developing an intervention to improve type 2 diabetes mellitus (T2DM) self management, we conducted in-depth individual interviews with 10 PLWD and their partners without diabetes about experiences living with T2DM, between July 2020 and January 2021. We used inductive thematic analysis. RESULTS: Both PLWD and partners felt that their sexual relationships and desires changed post-diagnosis, in ways beyond biomedical issues. Although couples' reports on the quality of their sexual relationships were concordant, most participants had not communicated their sexual desires and concerns with each other, causing unhappiness and fears of disappointing or losing their partner. Participants felt uninformed about sexual dysfunction but had not discussed this with their healthcare provider, leading to increased anxiety. CONCLUSION: PLWD and their partners need more informational support to increase their understanding of diabetes-associated sexual dysfunction and to decrease fears and anxiety. Strengthening communication within couples on sexual issues may empower them to find solutions to problems experienced. This may improve couples' relationships and quality of life, and indirectly result in better self management of T2DM.

Intervention development of 'Diabetes Together' using the person-based approach: a couples-focused intervention to support self-management of type 2 diabetes in South Africa.

OBJECTIVES: Type 2 diabetes (T2D) is a growing concern in South Africa, where many find self-management challenging. Behaviour-change health interventions are enhanced by involving partners of patients. We aimed to develop a couples-focused intervention to improve self-management of T2D among adults in South Africa. DESIGN: We used the person-based approach (PBA): synthesising evidence from existing interventions; background research; theory; and primary qualitative interviews with 10 couples to ascertain barriers and facilitators to self-management. This evidence was used to formulate guiding principles that directed the intervention design. We then prototyped the intervention workshop material, shared it with our public and patient involvement group and ran iterative co-discovery think-aloud sessions with nine couples. Feedback was rapidly analysed and changes formulated to improve the intervention, optimising its acceptability and maximising its potential efficacy. SETTING: We recruited couples using public-sector health services in the area of Cape Town, South Africa, during 2020-2021. PARTICIPANTS: The 38 participants were couples where one person had T2D. INTERVENTION: We developed the 'Diabetes Together' intervention to support self-management of T2D among couples in South Africa, focussing on: improved communication and shared appraisal of T2D; identifying opportunities for better self-management; and support from partners. Diabetes Together combined eight informational and two skills-building sections over two workshops. RESULTS: Our guiding principles included: providing equal information on T2D to partners; improving couples' communication; shared goal-setting; discussion of diabetes fears; discussing couples' roles in diabetes self-management; and supporting couples' autonomy to identify and prioritise diabetes self-management strategies.Participants viewing Diabetes Together valued the couples-focus of the intervention, especially communication. Feedback resulted in several improvements throughout the intervention, for example, addressing health concerns and tailoring to the setting. CONCLUSIONS: Using the PBA, our intervention was developed and tailored to our target audience. Our next step is to pilot the workshops' feasibility and acceptability.

The impact of persistent precarity on patients' capacity to manage their treatment burden: A comparative qualitative study between urban and rural patients with multimorbidity in South Africa.

Background: People living with multimorbidity in low-and middle-income countries (LMICs) experience a high workload trying to meet the demands of self-management. In an unequal society like South Africa, many people face continuous economic uncertainty, which can impact on their capacity to manage their illnesses and lead to poor health outcomes. Using precariousness - the real and perceived impact of uncertainty - as a lens, this paper aims to identify, characterise, and understand the workload and capacity associated with self-management amongst people with multimorbidity living in precarious circumstances in urban and rural South Africa. Methods: We conducted qualitative semi-structured interviews with 30 patients with HIV and co-morbidities between February and April 2021. Patients were attending public clinics in Cape Town (Western Cape) and Bulungula (Eastern Cape). Interviews were transcribed and data analysed using qualitative framework analysis. Burden of Treatment Theory (BoTT) and the Cumulative Complexity Model (CuCoM) were used as theoretical lenses through which to conceptualise the data. Results: People with multimorbidity in rural and urban South Africa experienced multi-faceted precariousness, including financial and housing insecurity, dangerous living circumstances and exposure to violence. Women felt unsafe in their communities and sometimes their homes, whilst men struggled with substance use and a lack of social support. Older patients relied on small income grants often shared with others, whilst younger patients struggled to find stable employment and combine self-management with family responsibilities. Precariousness impacted access to health services and information and peoples' ability to buy healthy foods and out-of-pocket medication, thus increasing their treatment burden and reducing their capacity. Conclusion: This study highlights that precariousness reduces the capacity and increases treatment burden for patients with multimorbidity in low-income settings in South Africa. Precariousness is both accumulative and cyclic, as financial insecurity impacts every aspect of peoples' daily lives. Findings emphasise that current models examining treatment burden need to be adapted to accommodate patients' experiences in low-income settings and address cumulative precariousness. Understanding treatment burden and capacity for patients in LMICs is a crucial first step to redesign health systems which aim to improve self-management and offer comprehensive person-centred care.

Using qualitative study designs to understand treatment burden and capacity for self-care among patients with HIV/NCD multimorbidity in South Africa: A methods paper.

Background: Low- and middle-income countries (LMICs), including South Africa, are currently experiencing multiple epidemics: HIV and the rising burden of non-communicable diseases (NCDs), leading to different patterns of multimorbidity (the occurrence of two or more chronic conditions) than experienced in high income settings. These adversely affect health outcomes, increase patients' perceived burden of treatment, and impact the workload of self-management. This paper outlines the methods used in a qualitative study exploring burden of treatment among people living with HIV/NCD multimorbidity in South Africa. Methods: We undertook a comparative qualitative study to examine the interaction between individuals' treatment burden (self-management workload) and their capacity to take on this workload, using the dual lenses of Burden of Treatment Theory (BoTT) and Cumulative Complexity Model (CuCoM) to aid conceptualisation of the data. We interviewed 30 people with multimorbidity and 16 carers in rural Eastern Cape and urban Cape Town between February-April 2021. Data was analysed through framework analysis. Findings: This paper discusses the methodological procedures considered when conducting qualitative research among people with multimorbidity in low-income settings in South Africa. We highlight the decisions made when developing the research design, recruiting participants, and selecting field-sites. We also explore data analysis processes and reflect on the positionality of the research project and researchers. Conclusion: This paper illustrates the decision-making processes conducting this qualitative research and may be helpful in informing future research aiming to qualitatively investigate treatment burden among patients in LMICs.

Using health information for community activism: A case study of the movement for change and social justice in South Africa.

The access to, use, and exchange of health information is crucial when strengthening public health services and improving access to care. However, many health system stakeholders, including community groups are perpetually excluded from accessing and using health information. This is problematic as community groups, themselves end-users of care, are well-positioned to keep the health system accountable, provide feedback on the quality of services, and identify emerging health concerns. Using qualitative, ethnographic methods, this paper investigates different strategies used by the Movement for Change and Social Justice (MCSJ)-a local health activism group-to collect, use and distribute health information to improve health care in Gugulethu, a low-income neighbourhood in Cape Town, South Africa. Through participant observation, shadowing, informal conversations and semi-structured interviews that were analysed using iterative thematic analysis, findings revealed that MCSJ effectively collected, used and exchanged health information to develop short-term health campaigns. To get access to the needed health information, they used innovative strategies, including cultivating allies in the health system, finding safe spaces, and using community brokers to effectively mobilise community members to keep the health system accountable. MCSJ's strategies highlight that stakeholders' engagement with health information is not only a technical exercise, but a complex social process that requires constant negotiation and relationship building. Therefore, to make meaningful improvements to health services and create adaptive and responsive health systems, we need to include community groups as active stakeholders in the health system, provide relevant, up-to-date and locally relevant health information, and facilitate opportunities to socially engage with health information and those who produce it.

Barriers and opportunities to using health information in policy implementation: The case of adolescent and youth friendly health services in the Western Cape.

BACKGROUND: The production, use and exchange of health information is an essential part of the health services, as it is used to inform daily decision-making and to develop new policies, guidelines and programmes. However, there is little insight into how health care workers (HCWs) get access to and use health information when implementing new health programmes. AIM: This study explored the multifaceted role of health information within policy implementation processes and aimed to understand the complexities experienced by HCWs who need to develop adolescent health profiles (AHPs), a criterion of implementing a larger Adolescent and Youth Friendly Services Programme (AYFSP). SETTING: This case study was undertaken in Gugulethu, a peri-urban, low-income neighbourhood in Cape Town, South Africa. METHODS: Data were collected through ethnographic qualitative methods, including participant observation, interviews and workshops, and 15 participants were enrolled for this purpose. RESULTS: Findings showed that HCWs experienced different barriers when accessing information to develop the AHPs, including a lack of access to databases, a lack of support and inadequate guidelines. Nevertheless, HCWs were resourceful in using informal information and building strategic relationships to navigate and gain access to the necessary data to develop AHPs. CONCLUSION: This case study provided insights into the practical difficulties and innovative strategies which arise when HCWs attempt to access and use health information within a real-life health programme. Findings highlighted the need for more training, support and guidance for HCWs to improve the meaningful use of health information during policy implementation processes and to strengthen health services in South African primary care clinics.

Mental health interventions for adolescents living with HIV or affected by HIV in low- and middle-income countries: systematic review.

BACKGROUND: Mental health difficulties and mental disorders are common in adolescents living with HIV or who are affected by HIV because of living in HIV-affected households in low- and middle-income (LMICs) countries, but little is known about the interventions that target these individuals and whether they are effective. AIMS: This systematic review aims to address these gaps by examining what has worked and what has not worked to support the mental health of adolescents living with HIV or affected by HIV in low- and middle-income contexts (PROSPERO Number: CRD42018103269). METHOD: A systematic literature review of online databases from the year 2000 to 2018, using Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines, included English-language publications of quantitative evaluations of psychosocial interventions aiming to improve mental health among adolescents living with HIV and adolescents from HIV-affected households (aged 10-24 years) in LMICs. RESULTS: Out of 2956 articles, 16 studies from 8 LMICs met the inclusion criteria. Thirteen studies focused on adolescents affected by HIV and only three studies on adolescents living with HIV. Only five studies included were from Sub-Saharan Africa. Interventions most often used a family-strengthening approach strengthening caregiver-adolescent relationships and communication and some problem-solving in groups or individually. Five studies reported statistically significant changes in adolescent and caregiver mental health or mental well-being, five among adolescents only and two among caregivers only. CONCLUSIONS: Research on what works to improve mental health in adolescents living with HIV in LMIC is in its nascent stages. Family-based interventions and economic strengthening show promise.