Care-seeking during fatal childhood illness in rural South Africa: a qualitative study

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

Care-seeking during fatal childhood illness in rural South Africa: a qualitative study

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

Profile: Agincourt health and socio-demographic surveillance system.

The Agincourt health and socio-demographic surveillance system (HDSS), located in rural northeast South Africa close to the Mozambique border, was established in 1992 to support district health systems development led by the post-apartheid ministry of health. The HDSS (90 000 people), based on an annual update of resident status and vital events, now supports multiple investigations into the causes and consequences of complex health, population and social transitions. Observational work includes cohorts focusing on different stages along the life course, evaluation of national policy at population, household and individual levels and examination of household responses to shocks and stresses and the resulting pathways influencing health and well-being. Trials target children and adolescents, including promoting psycho-social well-being, preventing HIV transmission and reducing metabolic disease risk. Efforts to enhance the research platform include using automated measurement techniques to estimate cause of death by verbal autopsy, full 'reconciliation' of in- and out-migrations, follow-up of migrants departing the study area, recording of extra-household social connections and linkage of individual HDSS records with those from sub-district clinics. Fostering effective collaborations (including INDEPTH multi-centre work in adult health and ageing and migration and urbanization), ensuring cross-site compatibility of common variables and optimizing public access to HDSS data are priorities

Care-seeking during fatal childhood illness in rural South Africa: a qualitative study

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

Care-seeking during fatal childhood illness in rural South Africa: a qualitative study.

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