Care-seeking during fatal childhood illness in rural South Africa: a qualitative study
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.
community child health, paediatrics, primary care, public health, qualitative research
Price, Jessica
29aaafcf-a96b-4c95-b230-e6129c46c844
Willcox, Merlin
dad5b622-9ac2-417d-9b2e-aad41b64ffea
Dlamini, Vuyiswa
f2da0128-9c0e-40bf-9917-16a47555588b
Khosa, Audrey
b64a45f5-0c45-4e2d-a65f-315a3c053521
Khanyile, Phindile
89a5eda9-c3fc-48b5-ae9e-62fd02a0c9d7
Seeley, Janet
d5de9ac7-b54d-4ea5-9098-0c4456974424
Harnden, Anthony
bbb10d37-b475-4c3c-b669-427d4d7ead8c
Kahn, Kathleen
e8f0af52-65ce-4744-b029-688db6e12dff
Hinton, Lisa
b260bc3f-3ecd-4202-b52a-6d606a6b3b92
29 April 2021
Price, Jessica
29aaafcf-a96b-4c95-b230-e6129c46c844
Willcox, Merlin
dad5b622-9ac2-417d-9b2e-aad41b64ffea
Dlamini, Vuyiswa
f2da0128-9c0e-40bf-9917-16a47555588b
Khosa, Audrey
b64a45f5-0c45-4e2d-a65f-315a3c053521
Khanyile, Phindile
89a5eda9-c3fc-48b5-ae9e-62fd02a0c9d7
Seeley, Janet
d5de9ac7-b54d-4ea5-9098-0c4456974424
Harnden, Anthony
bbb10d37-b475-4c3c-b669-427d4d7ead8c
Kahn, Kathleen
e8f0af52-65ce-4744-b029-688db6e12dff
Hinton, Lisa
b260bc3f-3ecd-4202-b52a-6d606a6b3b92
Price, Jessica, Willcox, Merlin, Dlamini, Vuyiswa, Khosa, Audrey, Khanyile, Phindile, Seeley, Janet, Harnden, Anthony, Kahn, Kathleen and Hinton, Lisa
(2021)
Care-seeking during fatal childhood illness in rural South Africa: a qualitative study.
BMJ Open, 11 (4), [e043652].
(doi:10.1136/bmjopen-2020-043652).
Abstract
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.
Text
e043652.full (1)
- Version of Record
More information
Accepted/In Press date: 12 April 2021
Published date: 29 April 2021
Additional Information:
Funding Information:
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).
Publisher Copyright:
© Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.
Copyright:
Copyright 2021 Elsevier B.V., All rights reserved.
Keywords:
community child health, paediatrics, primary care, public health, qualitative research
Identifiers
Local EPrints ID: 453276
URI: http://eprints.soton.ac.uk/id/eprint/453276
ISSN: 2044-6055
PURE UUID: e5088782-f6c9-4fd4-99b7-7eeaa9dc8e4b
Catalogue record
Date deposited: 11 Jan 2022 18:07
Last modified: 06 Jun 2024 01:58
Export record
Altmetrics
Contributors
Author:
Jessica Price
Author:
Vuyiswa Dlamini
Author:
Audrey Khosa
Author:
Phindile Khanyile
Author:
Janet Seeley
Author:
Anthony Harnden
Author:
Kathleen Kahn
Author:
Lisa Hinton
Download statistics
Downloads from ePrints over the past year. Other digital versions may also be available to download e.g. from the publisher's website.
View more statistics
