Objectives This study aimed to better understand reasons why children in South Africa die at home, including caregivers’ care-seeking experiences, decision-making, choice of treatment provider and barriers to accessing care during a child’s final illness.
Design This qualitative study included semi-structured in-depth interviews and focus group discussions with caregivers of children who died below the age of 5 years. Data were thematically analysed, and key findings compared with the Pathways to Survival Framework—a model frequently used in the study of child mortality. An adapted model was developed.
Setting Two rural health and demographic surveillance system (HDSS) sites in South Africa—the Agincourt HDSS and the Africa Health Research Institute.
Participants Thirty-eight caregivers of deceased children (29 participated in in-depth interviews and 9 were participants in two focus group discussions). Caregivers were purposively sampled to ensure maximum variation across place of death, child age at death, household socioeconomic status, maternal migration status and maternal HIV status.
Findings Although caregivers faced barriers in providing care to children (including insufficient knowledge and poor transport), almost all did seek care from the formal health system. Negative experiences in health facilities did not deter care-seeking, but most respondents still received poor quality care and were not given adequate safety-netting advice. Traditional healers were only consulted as a last resort when other approaches had failed.
Conclusion Barriers to accessing healthcare disrupt the workings of previously accepted care-seeking models. The adapted model presented in this paper more realistically reflects care-seeking experiences and decision-making during severe childhood illness in rural South Africa and helps explain both the persistence of home deaths despite seeking healthcare, and the impact of a child’s death on care-seeking in future childhood illness. This model can be used as the basis for developing interventions to reduce under-5 mortality.
- community child health
- primary care
- public health
- qualitative research
Data availability statement
Data are available on reasonable request. To protect confidentiality of participants, anonymised transcripts will only be made available on request.
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Correction notice Following line has been added to the funding statement "LH based in The Healthcare Improvement Studies Institute (THIS Institute), University of Cambridge. THIS Institute is supported by the Health Foundation, an independent charity committed to bringing about better health and healthcare for people in the UK."
Contributors JP, LH, MW, KK and AH conceived and designed the study. VD, AK and PK conducted, transcribed and translated the interviews and FGDs. JP, MW and LH analysed the data with input from KK, JS, VD, AK and PK. JP and LH led the writing of the manuscript. All author contributed to, and critically revised it.
Funding This study was funded by the Grand Challenges Research Fund (0005119). JP was funded by the Rhodes Scholarship (no grant number available), and travel costs were covered by the Africa Oxford Travel Grant (AfiOx-19), and Green Templeton College (no grant number available). MW’s salary was funded by the National Institute of Health Research (NIHR), under grant CL-2016-26-005. The Africa Health Research Institute and the MRC/Wits-Agincourt Unit are both nodes of the South African Population Research Infrastructure Network (SAPRIN), funded by the National Department of Science and Innovation and hosted by the South African Medical Research Council (no grant number available). The Africa Health Research Institute’s Population Intervention Programme is also funded by the Wellcome Trust (201433/Z/16/Z). The MRC/Wits-Agincourt Unit has also been supported by the University of the Witwatersrand, the Medical Research Council, South Africa, the Wellcome Trust, UK (grants 058893/Z/99/A; 069683/Z/02/Z; 085477/Z/08/Z; 085477/B/08/Z). LH based in The Healthcare Improvement Studies Institute (THIS Institute), University of Cambridge. THIS Institute is supported by the Health Foundation, an independent charity committed to bringing about better health and healthcare for people in the UK.
Competing interests None declared.
Provenance and peer review Not commissioned; externally peer reviewed.
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