In South Africa, one in five people living with HIV dies within six months of leaving hospital, and these post-discharge deaths may account for nearly half of the country’s 50,000 annual HIV-related fatalities. This matters because existing interventions to improve survival after hospitalisation were developed in wealthy countries and have rarely been tested in South Africa or other low- and middle-income settings. The researchers also lack a clear picture of how to support the family members and friends who care for people with advanced HIV disease once they return home. Over three years, the team will follow 326 recently discharged patients and 123 of their carers across four South African hospitals. They will collect data on well-being, care needs, and mortality at four, twelve, and twenty-four weeks. Using a human-centred design process, they will then work with patients, carers, and healthcare providers to co-develop practical interventions—such as better discharge planning or home-based support—and test them in a small feasibility study. If successful, this work could produce a tested, context-appropriate package of care that reduces preventable deaths after hospitalisation in South Africa and similar settings.
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Background: Despite significant progress in HIV diagnosis and antiretroviral therapy (ART) coverage, over 600,000 people living with HIV (PLWH) die annually worldwide, primarily due to advanced HIV disease (AHD). Many of those who succumb to AHD-related causes have a history of hospitalisation, with about 20% dying within six months of hospital discharge, highlighting a crucial window for intervention. In South Africa, post-hospitalisation mortality may account for up to 45% of the 50,000 annual deaths among people with AHD. While multiple interventions to improve post-hospital outcomes have been studied in high-income settings, few have been evaluated in South Africa or other low and middle-income countries (LMICs). Furthermore, there is a limited understanding of how to empower carers to support PLWH effectively when they return home after hospitalisation. We propose to co-develop interventions with care recipients, carers, and healthcare providers to reduce mortality following hospital discharge for PLWH in South Africa. Methods: We will conduct a two-phase study over three years in four hospitals in South Africa. The hospitals represent urban-rural diversity and different levels of hospital care. Phase 1, spanning 24 months, involves enrolling and following a total of 326 PLWH (care recipients) admitted and discharged across the four hospitals. Care recipients will be followed for six months post-discharge at weeks 4, 12, and 24 to collect quantitative and qualitative data on well-being and post-hospitalisation experiences. Eligible care recipients will be aged 18 and above, have spent at least two nights in the hospital, and be willing to provide informed consent. Carers nominated by care recipients will also be enrolled, with a target of 123 carers, 18 years and above, who will be followed for six months at similar time points to care recipients to understand their supportive care needs and caregiving burden. Using data from the prospective cohort, we will employ a human-centred design process to involve care recipients, carers, and healthcare providers in developing intervention prototypes and creating program theories for each intervention. In Phase 2, lasting nine months, we will conduct a single-arm feasibility and acceptability study. The results will refine and enhance the intervention theory, components, and delivery for a future larger trial. Analysis: Quantitative data will be analysed using descriptive statistics to summarise population demographics, psychosocial survey findings, care engagement outcomes, and mortality outcomes. Time-to-event analysis (Cox proportional hazards) will be used to assess associations between participant characteristics and care engagement, and clinical outcomes. Linear mixed model analyses will assess changes in supportive care needs and associated factors. Qualitative data will be analysed using thematic analysis, applying deductive and inductive coding to generate themes regarding individual and contextual factors influencing post-hospitalisation outcomes and the acceptability and feasibility of pilot interventions. Dissemination: We will share our findings through peer-reviewed journals, conference presentations, policy briefs, and lay summaries at specified times during and after the study. The findings will drive advocacy efforts in the short term and inform improvements in service delivery in South Africa and similar settings in the long term.
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