“I do lack peace, and I’ve run out of answers”: primary caregivers’ perspectives on social and behaviour problems in cerebral malaria survivors in Blantyre, Malawi
Abstract Background Despite recent advances in treatment and prevention, the prevalence of cerebral malaria (CM) remains high globally, especially in children under 5 years old. As treatment improves, more children will survive episodes of CM with lasting neurodisabilities, such as social and behavi...
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ftdoajarticles:oai:doaj.org/article:06229a5a05e14aaf8b64bf2a1665b8b6 2023-05-15T15:12:45+02:00 “I do lack peace, and I’ve run out of answers”: primary caregivers’ perspectives on social and behaviour problems in cerebral malaria survivors in Blantyre, Malawi Savannah Karmen-Tuohy Sebastian M. Mboma John T. Langfitt Rachel Brim Melissa Gladstone Terrie E. Taylor 2022-04-01T00:00:00Z https://doi.org/10.1186/s12936-022-04142-5 https://doaj.org/article/06229a5a05e14aaf8b64bf2a1665b8b6 EN eng BMC https://doi.org/10.1186/s12936-022-04142-5 https://doaj.org/toc/1475-2875 doi:10.1186/s12936-022-04142-5 1475-2875 https://doaj.org/article/06229a5a05e14aaf8b64bf2a1665b8b6 Malaria Journal, Vol 21, Iss 1, Pp 1-10 (2022) Cerebral malaria Neurodisability Caregiver perspectives Rehabilitation Malawi Arctic medicine. Tropical medicine RC955-962 Infectious and parasitic diseases RC109-216 article 2022 ftdoajarticles https://doi.org/10.1186/s12936-022-04142-5 2022-12-31T00:05:22Z Abstract Background Despite recent advances in treatment and prevention, the prevalence of cerebral malaria (CM) remains high globally, especially in children under 5 years old. As treatment improves, more children will survive episodes of CM with lasting neurodisabilities, such as social and behavioural issues. Behaviour problems in children who survive CM are poorly characterized, and the impact of caring for a child with post-CM behaviour issues has not been well-explored. Caregivers’ perceptions of and experiences with their child’s post-CM behaviour problems are reported here. Methods Semi-structured interviews were conducted with 29 primary caregivers of children who survived CM with reported behaviour issues in Blantyre, Malawi. Interviews were conducted in Chicheŵa, audio-recorded, transcribed, and translated into English. Data were coded manually, utilizing inductive and deductive approaches. Identified codes were thematically analysed. Results Post-CM behaviours reported include externalizing, aggressive behaviours and learning difficulties. Variable timescales for behaviour change onset were noted, and most caregivers reported some evolution of their child’s behaviour over time. Caregivers experienced a variety of emotions connected to their child’s behaviour and to reactions of family and community members. Caregivers who experienced discrimination were more likely to describe negative emotions tied to their child’s behaviour changes, compared to caregivers who experienced support. Conclusions Caregiver perceptions of behaviour changes in post-CM survivors are variable, and caregiver experience is strongly impacted by family and community member responses. Future educational, rehabilitation, and support-based programmes should focus on the specific types of behaviour problems identified and the difficulties faced by caregivers and their communities. Article in Journal/Newspaper Arctic Directory of Open Access Journals: DOAJ Articles Arctic Malaria Journal 21 1 |
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Directory of Open Access Journals: DOAJ Articles |
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Cerebral malaria Neurodisability Caregiver perspectives Rehabilitation Malawi Arctic medicine. Tropical medicine RC955-962 Infectious and parasitic diseases RC109-216 |
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Cerebral malaria Neurodisability Caregiver perspectives Rehabilitation Malawi Arctic medicine. Tropical medicine RC955-962 Infectious and parasitic diseases RC109-216 Savannah Karmen-Tuohy Sebastian M. Mboma John T. Langfitt Rachel Brim Melissa Gladstone Terrie E. Taylor “I do lack peace, and I’ve run out of answers”: primary caregivers’ perspectives on social and behaviour problems in cerebral malaria survivors in Blantyre, Malawi |
topic_facet |
Cerebral malaria Neurodisability Caregiver perspectives Rehabilitation Malawi Arctic medicine. Tropical medicine RC955-962 Infectious and parasitic diseases RC109-216 |
description |
Abstract Background Despite recent advances in treatment and prevention, the prevalence of cerebral malaria (CM) remains high globally, especially in children under 5 years old. As treatment improves, more children will survive episodes of CM with lasting neurodisabilities, such as social and behavioural issues. Behaviour problems in children who survive CM are poorly characterized, and the impact of caring for a child with post-CM behaviour issues has not been well-explored. Caregivers’ perceptions of and experiences with their child’s post-CM behaviour problems are reported here. Methods Semi-structured interviews were conducted with 29 primary caregivers of children who survived CM with reported behaviour issues in Blantyre, Malawi. Interviews were conducted in Chicheŵa, audio-recorded, transcribed, and translated into English. Data were coded manually, utilizing inductive and deductive approaches. Identified codes were thematically analysed. Results Post-CM behaviours reported include externalizing, aggressive behaviours and learning difficulties. Variable timescales for behaviour change onset were noted, and most caregivers reported some evolution of their child’s behaviour over time. Caregivers experienced a variety of emotions connected to their child’s behaviour and to reactions of family and community members. Caregivers who experienced discrimination were more likely to describe negative emotions tied to their child’s behaviour changes, compared to caregivers who experienced support. Conclusions Caregiver perceptions of behaviour changes in post-CM survivors are variable, and caregiver experience is strongly impacted by family and community member responses. Future educational, rehabilitation, and support-based programmes should focus on the specific types of behaviour problems identified and the difficulties faced by caregivers and their communities. |
format |
Article in Journal/Newspaper |
author |
Savannah Karmen-Tuohy Sebastian M. Mboma John T. Langfitt Rachel Brim Melissa Gladstone Terrie E. Taylor |
author_facet |
Savannah Karmen-Tuohy Sebastian M. Mboma John T. Langfitt Rachel Brim Melissa Gladstone Terrie E. Taylor |
author_sort |
Savannah Karmen-Tuohy |
title |
“I do lack peace, and I’ve run out of answers”: primary caregivers’ perspectives on social and behaviour problems in cerebral malaria survivors in Blantyre, Malawi |
title_short |
“I do lack peace, and I’ve run out of answers”: primary caregivers’ perspectives on social and behaviour problems in cerebral malaria survivors in Blantyre, Malawi |
title_full |
“I do lack peace, and I’ve run out of answers”: primary caregivers’ perspectives on social and behaviour problems in cerebral malaria survivors in Blantyre, Malawi |
title_fullStr |
“I do lack peace, and I’ve run out of answers”: primary caregivers’ perspectives on social and behaviour problems in cerebral malaria survivors in Blantyre, Malawi |
title_full_unstemmed |
“I do lack peace, and I’ve run out of answers”: primary caregivers’ perspectives on social and behaviour problems in cerebral malaria survivors in Blantyre, Malawi |
title_sort |
“i do lack peace, and i’ve run out of answers”: primary caregivers’ perspectives on social and behaviour problems in cerebral malaria survivors in blantyre, malawi |
publisher |
BMC |
publishDate |
2022 |
url |
https://doi.org/10.1186/s12936-022-04142-5 https://doaj.org/article/06229a5a05e14aaf8b64bf2a1665b8b6 |
geographic |
Arctic |
geographic_facet |
Arctic |
genre |
Arctic |
genre_facet |
Arctic |
op_source |
Malaria Journal, Vol 21, Iss 1, Pp 1-10 (2022) |
op_relation |
https://doi.org/10.1186/s12936-022-04142-5 https://doaj.org/toc/1475-2875 doi:10.1186/s12936-022-04142-5 1475-2875 https://doaj.org/article/06229a5a05e14aaf8b64bf2a1665b8b6 |
op_doi |
https://doi.org/10.1186/s12936-022-04142-5 |
container_title |
Malaria Journal |
container_volume |
21 |
container_issue |
1 |
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1766343395863691264 |