The role of the social sciences and humanities in pandemic preparedness responses: insights gained from COVID-19, HIV and AIDS and related epidemics.

The COVID-19 pandemic, particularly from 2020 to mid-2022, debilitated the management of the HIV epidemic in Africa. The multiple effects included well-documented HIV service interruptions, curtailment of HIV prevention programmes, the associated marked increase in both the risk for HIV infection among key populations and vulnerability of sub-populations (e.g. adolescent girls and young women) who are the focus of these programmes and - as importantly but less well-documented - the diverse negative socio-economic effects that accentuate HIV risk and vulnerability generally (e.g. loss of earnings, gender-based violence, stigma, police harassment of people during "lockdowns"). The global biomedical response to COVID-19 was necessary and remarkable for mitigating the bio-physical impacts of the pandemic (e.g. wide-spread surveillance coupled with rapid updates on the epidemiology of infections, rapid development of vaccines and revisions of treatment). However, drawing upon the widespread criticisms of state responses to the socio-economic effects of the COVID-19 pandemic and of "lockdowns" themselves, this article elaborates a core argument within those criticisms, namely that key lessons learnt during the HIV and AIDS and other pandemics were ignored, at least during the early stages of COVID-19. Our critique is that better integration of the social sciences and humanities in responses to pandemics can counter the reflex tendency to uncritically adopt a biomedical paradigm and, more importantly, to enable consideration of the social determinants of health in pandemic responses. At root, we re-assert a key value of 'integrated' interventions, namely the accommodation of context-sensitive considerations in the formulation of strategies, policies, plans and programme designs.

Moving to a strong(er) community health system: analysing the role of community health volunteers in the new national community health strategy in Malawi.

Since the Alma Ata Declaration in 1978, community health volunteers (CHVs) have been at the forefront, providing health services, especially to underserved communities, in low-income countries. However, consolidation of CHVs position within formal health systems has proved to be complex and continues to challenge countries, as they devise strategies to strengthen primary healthcare. Malawi's community health strategy, launched in 2017, is a novel attempt to harmonise the multiple health service structures at the community level and strengthen service delivery through a team-based approach. The core community health team (CHT) consists of health surveillance assistants (HSAs), clinicians, environmental health officers and CHVs. This paper reviews Malawi's strategy, with particular focus on the interface between HSAs, volunteers in community-based programmes and the community health team. Our analysis identified key challenges that may impede the strategy's implementation: (1) inadequate training, imbalance of skill sets within CHTs and unclear job descriptions for CHVs; (2) proposed community-level interventions require expansion of pre-existing roles for most CHT members; and (3) district authorities may face challenges meeting financial obligations and filling community-level positions. For effective implementation, attention and further deliberation is needed on the appropriate forms of CHV support, CHT composition with possibilities of co-opting trained CHVs from existing volunteer programmes into CHTs, review of CHT competencies and workload, strengthening coordination and communication across all community actors, and financing mechanisms. Policy support through the development of an addendum to the strategy, outlining opportunities for task-shifting between CHT members, CHVs' expected duties and interactions with paid CHT personnel is recommended.

From end of life to chronic care: the provision of community home-based care for HIV and the adaptation to new health care demands in Zambia.

Aim We present the evolution of primary-level HIV and AIDS services, shifting from end of life to chronic care, and draw attention to the opportunities and threats for the future of Zambia's nascent chronic care system. BACKGROUND: Although African governments struggled to provide primary health care services in the context of a global economic crisis, civil society organisations (CSO) started mobilising settlement residents to respond to another crisis: the HIV and AIDS pandemic. These initiatives actively engaged patients, families and settlement residents to provide home-based care to HIV-infected patients. After 30 years, CHBC programmes continue to be appropriate in the context of changing health care needs in the population. METHODS: The study took place in 2011 and 2012 and was part of a multi-country study. It used a mixed method approach involving semi-structured interviews, focus group discussions, structured interviews, service observations and a questionnaire survey. Findings Our research revealed long-standing presence of extensive mutual support amongst residents in many settlements, the invocation of cultural values that emphasise social relationships and organisation of people by CSO in care and support programmes. This laid the foundation for a locally conceived model of chronic care capable of addressing the new care demands arising from the country's changing burden of disease. However, this capacity has come under threat as the reduction in donor funding to community home-based care programmes and donor and government interventions, which have changed the nature of these programmes in the country. Zambia's health system risks losing valuable capacity for fulfilling its vision 'to bring health care as close to the family as possible' if government strategies do not acknowledge the need for transformational approaches to community participation and continuation of the brokering role by CSO in primary health care.

Integration of community home based care programmes within national primary health care revitalisation strategies in Ethiopia, Malawi, South-Africa and Zambia: a comparative assessment.

BACKGROUND: In 2008, the WHO facilitated the primary health care (PHC) revitalisation agenda. The purpose was to strengthen African health systems in order to address communicable and non-communicable diseases. Our aim was to assess the position of civil society-led community home based care programmes (CHBC), which serve the needs of patients with HIV, within this agenda. We examined how their roles and place in health systems evolved, and the prospects for these programmes in national policies and strategies to revitalise PHC, as new health care demands arise. METHODS: The study was conducted in Ethiopia, Malawi, South Africa and Zambia and used an historical, comparative research design. We used purposive sampling in the selection of countries and case studies of CHBC programmes. Qualitative methods included semi-structured interviews, focus group discussions, service observation and community mapping exercises. Quantitative methods included questionnaire surveys. RESULTS: The capacity of PHC services increased rapidly in the mid-to-late 2000s via CHBC programme facilitation of community mobilisation and participation in primary care services and the exceptional investments for HIV/AIDS. CHBC programmes diversified their services in response to the changing health and social care needs of patients on lifelong anti-retroviral therapy and there is a general trend to extend service delivery beyond HIV-infected patients. We observed similarities in the way the governments of South Africa, Malawi and Zambia are integrating CHBC programmes into PHC by making PHC facilities the focal point for management and state-paid community health workers responsible for the supervision of community-based activities. Contextual differences were found between Ethiopia, South Africa, Malawi and Zambia, whereby the policy direction of the latter two countries is to have in place structures and mechanisms that actively connect health and social welfare interventions from governmental and non-governmental actors. CONCLUSIONS: Countries may differ in the means to integrate and co-ordinate government and civil society agencies but the net result is expanded PHC capacity. In a context of changing health care demands, CHBC programmes are a vital mechanism for the delivery of primary health and social welfare services.

Practicalities and challenges in re-orienting the health system in Zambia for treating chronic conditions.

BACKGROUND: The rapid evolution in disease burdens in low- and middle income countries is forcing policy makers to re-orient their health system towards a system which has the capability to simultaneously address infectious and non-communicable diseases. This paper draws on two different but overlapping studies which examined how actors in the Zambian health system are re-directing their policies, strategies and service structures to include the provision of health care for people with chronic conditions. METHODS: Study methods in both studies included semi-structured interviews with government health officials at national level, and governmental and non-governmental health practitioners operating from community-, primary health care to hospital facility level. Focus group discussions were conducted with staff, stakeholders and caregivers of programmes providing care and support at community- and household levels. Study settings included urban and rural sites. RESULTS: A series of adaptations transformed the HIV programme from an emergency response into the first large chronic care programme in the country. There are clear indications that the Zambian government is intending to expand this reach to patients with non-communicable diseases. Challenges to do this effectively include a lack of proper NCD prevalence data for planning, a concentration of technology and skills to detect and treat NCDs at secondary and tertiary levels in the health system and limited interest by donor agencies to support this transition. CONCLUSION: The reorientation of Zambia's health system is in full swing and uses the foundation of a decentralised health system and presence of local models for HIV chronic care which actively involve community partners, patients and their families. There are early warning signs which could cause this transition to stall, one of which is the financial capability to resource this process.

Children's psychosocial wellbeing in the context of HIV/AIDS and poverty: a comparative investigation of orphaned and non-orphaned children living in South Africa.

BACKGROUND: Recent studies have questioned whether orphanhood is primarily associated with key dimensions of psycho-social wellbeing in children living in circumstances of material deprivation and high prevalence of HIV and AIDS. METHODS: This study uses cross-sectional data from a longitudinal study conducted between 2004-2007 to examine the psychosocial well-being of orphans and non-orphans in the Amajuba District of KwaZulu-Natal, South Africa. Psychosocial wellbeing included an assessment of orphans' and non orphans' level of anxiety and depression, affability and resilience. Stratified cluster sampling, based on both school and age, was used to construct a cohort of recent orphans and non-orphans and their households, randomly selected from schools. RESULTS: Levels of anxiety and depression, affability and resilience did not differ significantly between orphans and non-orphans, nor did salient household, poverty and caregiver characteristics vary substantially amongst orphans and non-orphans. Multivariate analyses indicated that children's psychosocial outcomes, when controlling for orphan status and related demographic variables were more strongly influenced by household composition/size, living above or below the poverty threshold and factors associated with the caregiver-child relationship and caregiver health. CONCLUSIONS: The results muster additional evidence for moving beyond narrow definitions of vulnerability associated exclusively with orphanhood to consider the multitude of material, social and relational factors affecting the psycho-social well-being of children in general who are living in circumstances of poverty and HIV and AIDS.

Household dynamics and socioeconomic conditions in the context of incident adolescent orphaning in KwaZulu-Natal, South Africa.

We compared demographics, socioeconomic status, and food insecurity between households with and without recent orphans in a region of high HIV/AIDS mortality in South Africa. We recruited a cohort of 197 recent orphans and 528 non-orphans ages 9-15 and their households using stratified cluster sampling. Households were classified into three groups: orphan-only (N=50); non-orphan-only (N=377); and mixed (N=210). Between September 2004 and May 2007, households were interviewed three times regarding demographics, income and assets, and food insecurity. Baseline bivariate associations were assessed using chi-square- and t-tests. Longitudinal bivariate associations and multivariate models were tested using generalized estimating equations. At baseline, mixed households generally exhibited greater characteristics of vulnerability than orphan and non-orphan households. They were larger, had older, less educated household heads, and reported a much smaller annual per capita income. Orphan households were more likely to report a death in the previous year, and less likely to have an adult employed. These differences persisted over the study. Even non-orphan households exhibited characteristics of vulnerability, with 14% reporting a death one year before baseline, 45% of whom were prime-age adults. At baseline, a much smaller proportion of orphan households reported receiving the child support grant than the other household types, but notably, there were no differences among households in receipt of the grant by Round 3. Household food insecurity was highly prevalent: more than one in five orphan-only and mixed households reported being food insecure in the previous month. These findings suggest that the effects of HIV/AIDS only exacerbate existing high levels of poverty in the district, as virtually all households are vulnerable regardless of orphan status. Community-level programs must help families address a spectrum of needs, including food security, caregiving, and financial support, as well as better target social welfare grants and make them more accessible to vulnerable households.

Weighing up the burden of care on caregivers of orphan children: the Amajuba District Child Health and Wellbeing Project, South Africa.

This paper assesses the burden on orphan caregivers relative to non-orphan caregivers in the context of high HIV/AIDS mortality in South Africa. It presents findings from the third round of a study conducted in the Amajuba District of KwaZulu-Natal between 2003 and 2007. Significant differences were found between orphan and non-orphan caregivers; the former being more likely to care for more children, have poorer health, higher levels of chronic illness, less adult help and they appeared to have more daily responsibilities. Orphan caregivers were also more likely to indicate that children in their care needed help for mental or behavioural problems but overall results showed that only 3.4% of all households had contact with child welfare agencies. The findings question assumptions about the capacity and capability of the extended family to absorb shocks to individuals and families.

Playing the role of a 'boundary organisation': getting smarter with networking.

BACKGROUND: This paper discusses the practices of organisations that cross the boundary between research and politics, to promote evidence-based policies and programmes. METHODS: It uses the experience of a network of organisations in Africa to describe the methodology, challenges and successes of efforts to promote utilisation of research on the inter-connections between HIV/AIDS, food security and nutrition in South Africa. It emphasises that crossing the boundary between science and politics can be done systematically and is inevitable for any attempt that seeks influence policy making. RESULTS: The paper reveals the complexity of the research-policy making interface and identifies key lessons for the practice of networking and engaging policy and decision-makers. CONCLUSION: The concept of boundary organisation is a helpful means to understand the methodological underpinnings of efforts to get research into policy and practice and to understand the 'messy' process of doing so.

Exploring the Cinderella myth: intrahousehold differences in child wellbeing between orphans and non-orphans in Amajuba District, South Africa.

OBJECTIVE: To determine whether differences in wellbeing (defined by a variety of education and health outcomes) exist between recent school-aged orphans and non-orphans who live in the same household in a context of high HIV/AIDS mortality in KwaZulu Natal, South Africa. DESIGN: The data come from the first 2 years (2004-2006) of an ongoing 3-year longitudinal cohort study in a district in KwaZulu-Natal, the Amajuba Child Health and Well-being Research Project. Using stratified cluster sampling based on school and age, we constructed a cohort of 197 recent orphans and 528 non-orphans aged 9-16 years and their households and caregivers. Household heads, caregivers, and children were interviewed regarding five domains of child wellbeing: demographic, economic, educational, health/nutrition/lifestyle, and psychosocial status. METHODS: The analytical sample consists of 174 children (87 orphans and 87 comparable non-orphans who live together) at baseline and 124 children in round 2. We estimated a linear regression model using household fixed effects for continuous outcomes (grade adjusted for age, annual expenditure on schooling and body mass index) and a logit model using household fixed effects for categorical variables (malnutrition) to compare co-resident orphans and non-orphans. RESULTS: We found no statistically significant differences in most education, health and labour outcomes between orphans and the non-orphans with whom they live. Paternal orphans are more likely to be behind in school, and recent mobility has a positive effect on schooling outcomes.