| Summary: | <p><b>Background</b></p>
<p>Half of under-5 deaths in South Africa occur at home. However, the reasons remain poorly described and data is limited on the circumstances of death and access to healthcare during the final illness of children who die outside of health facilities. My thesis aimed to understand why children under five years die at home in rural South Africa, and to recommend interventions to reduce home deaths.</p>
<p><b>Methods</b></p>
<p>Four studies were conducted for this thesis. First, I reviewed the available evidence on place of death and care-seeking across sub-Saharan Africa, presented as a systematic review and meta-analysis. Second, I used population-based longitudinal data from two health and demographic surveillance system (HDSS) sites in rural South Africa to determine the trends in place of death and care-seeking during fatal child illness from 2000-2015. I assessed whether there was an association between place of death and specific causes of death, using cause of death data from verbal autopsies. I performed bivariate and multivariate logistic regression to identify sociodemographic factors associated with increased odds of a child under-5 dying at home despite having sought healthcare compared to children who died in health facilities. Third, I used primary data collected from a social autopsy study at each HDSS site to characterise the processes of seeking and receiving healthcare during fatal childhood illness. Finally, I conducted qualitative research to explore caregivers’ experiences of care-seeking, barriers encountered in accessing healthcare and how this influenced their decision-making when their child was ill. By integrating findings from across all studies in this thesis, I proposed interventions to reduce under-5 mortality particularly outside of formal health services. </p>
<p><b>Results</b></p>
<p>The proportion of under-5 deaths that occur at home has remained constant at approximately 50% from 2000-2015, despite a decline in the under-5 mortality rate. Over 80% of the children who died at home were taken for formal healthcare during their final illness. Modifiable factors contributing to home deaths in children under-5 were identified within and outside the home. Within the home, a lack of caregiver knowledge contributed to failure to appreciate the severity of the illness. Outside the home, modifiable factors included delays in accessing transport, caregivers’ negative experiences of seeking healthcare, a lack of safety-netting and follow-up advice from healthcare providers and low referral rates from primary care providers to secondary level facilities. HIV-related deaths were less likely to occur at home than in health facilities after 2012, partly reflecting the social capital earned by HIV-positive caregivers through repeated contact with facilities and a familiarity with the health system. Finally, consulting traditional healers and use of traditional medicines was relatively uncommon. When this did occur, caregivers’ decisions seemed driven by a desperate need to help the child rather than a strongly held traditional belief about the underlying cause of the disease. </p>
<p><b>Conclusions and recommendations</b></p>
<p>Child deaths at home continue to account for almost half of all under-5 deaths in rural South Africa. My doctoral work has helped to better understand this phenomenon, highlighting that home deaths are not purely a function of a failure of caregivers to seek healthcare. Modifiable factors within and outside the home must be addressed to reduce under-5 deaths at home. Therefore, I recommend 1) all pregnant and recently delivered women should receive routine home visits by community health workers during the antenatal and postnatal period to improve caregivers’ knowledge and recognition of severe childhood illness; 2) establish community-based participatory action groups to increase caregivers’ knowledge of childhood illness and their confidence to engage healthcare services more assertively; 3) improve data sharing on identified child deaths between HDSS sites and health facilities so that home deaths can also be included in facility-based mortality reviews especially if the child was taken to a healthcare provider during the final illness; 4) implement clear guidelines for safety-netting and follow-up so that caregivers know to monitor their children for signs of deterioration and when to re-seek care; and 5) conduct participatory learning workshops with healthcare workers to identify reasons for negative staff attitudes and attempt to address them. </p>
<p>Further research should be conducted to evaluate the quality of care provided to children who died at home after seeking healthcare, identify barriers health workers face in referring patients to higher facilities and assess which aspects of the current HIV care package confer protection on HIV positive children reducing their odds of dying at home, and whether similar services should be made available to all children under-5. Engaging traditional healers, community members and health practitioners to further understand the role of traditional medicines and healers in fatal child illness offers opportunities to maximise the benefits of medical pluralism and reduce the harms.</p>
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