Daily life and challenges faced by households with permanent childhood developmental disability in rural Tanzania: a qualitative study

Severe developmental disability in children affects the life of the child and entire household. We conducted a qualitative study to understand how caregivers manage severe developmental disabilities in children in rural Africa. Families and six children (out of 15 children) who had serious permanent...

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Main Authors: Castellani, J, Kimbute, O, Makasi, C, Mrango, ZE, Paulus, ATG, Evers, SMAA, Hardy, P, Sumner, T, Keiya, A, Mihaylova, B, Faiz, MA, Gomes, M
Format: Journal article
Language:English
Published: Springer 2021
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author Castellani, J
Kimbute, O
Makasi, C
Mrango, ZE
Paulus, ATG
Evers, SMAA
Hardy, P
Sumner, T
Keiya, A
Mihaylova, B
Faiz, MA
Gomes, M
author_facet Castellani, J
Kimbute, O
Makasi, C
Mrango, ZE
Paulus, ATG
Evers, SMAA
Hardy, P
Sumner, T
Keiya, A
Mihaylova, B
Faiz, MA
Gomes, M
author_sort Castellani, J
collection OXFORD
description Severe developmental disability in children affects the life of the child and entire household. We conducted a qualitative study to understand how caregivers manage severe developmental disabilities in children in rural Africa. Families and six children (out of 15 children) who had serious permanent sequelae from a cerebral infection in Handeni, Tanzania, were contacted and invited to a workshop to recount their experience living with severe developmental disabilities. After consent, individual interviews were conducted first through recording of individual digital stories and then through individual semi-structured interviews. Pre-determined key categories were used to analyse the data. Our results showed that developmental disabilities required constant care and reduced the autonomy of the children. Schooling had not been attempted or was halted because of learning problems or inability to meet specialized school costs. Parents were under constant physical, emotional and financial stress. Their occupational earnings decreased. Some families sold their assets to survive. Others began to rely on relatives. Understanding the consequences of developmental disability helps to identify where social support should be focused and improved.
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spelling oxford-uuid:58535b7c-70f5-48a6-b5c7-3d59200b00642022-07-13T08:13:21ZDaily life and challenges faced by households with permanent childhood developmental disability in rural Tanzania: a qualitative studyJournal articlehttp://purl.org/coar/resource_type/c_dcae04bcuuid:58535b7c-70f5-48a6-b5c7-3d59200b0064EnglishSymplectic ElementsSpringer2021Castellani, JKimbute, OMakasi, CMrango, ZEPaulus, ATGEvers, SMAAHardy, PSumner, TKeiya, AMihaylova, BFaiz, MAGomes, MSevere developmental disability in children affects the life of the child and entire household. We conducted a qualitative study to understand how caregivers manage severe developmental disabilities in children in rural Africa. Families and six children (out of 15 children) who had serious permanent sequelae from a cerebral infection in Handeni, Tanzania, were contacted and invited to a workshop to recount their experience living with severe developmental disabilities. After consent, individual interviews were conducted first through recording of individual digital stories and then through individual semi-structured interviews. Pre-determined key categories were used to analyse the data. Our results showed that developmental disabilities required constant care and reduced the autonomy of the children. Schooling had not been attempted or was halted because of learning problems or inability to meet specialized school costs. Parents were under constant physical, emotional and financial stress. Their occupational earnings decreased. Some families sold their assets to survive. Others began to rely on relatives. Understanding the consequences of developmental disability helps to identify where social support should be focused and improved.
spellingShingle Castellani, J
Kimbute, O
Makasi, C
Mrango, ZE
Paulus, ATG
Evers, SMAA
Hardy, P
Sumner, T
Keiya, A
Mihaylova, B
Faiz, MA
Gomes, M
Daily life and challenges faced by households with permanent childhood developmental disability in rural Tanzania: a qualitative study
title Daily life and challenges faced by households with permanent childhood developmental disability in rural Tanzania: a qualitative study
title_full Daily life and challenges faced by households with permanent childhood developmental disability in rural Tanzania: a qualitative study
title_fullStr Daily life and challenges faced by households with permanent childhood developmental disability in rural Tanzania: a qualitative study
title_full_unstemmed Daily life and challenges faced by households with permanent childhood developmental disability in rural Tanzania: a qualitative study
title_short Daily life and challenges faced by households with permanent childhood developmental disability in rural Tanzania: a qualitative study
title_sort daily life and challenges faced by households with permanent childhood developmental disability in rural tanzania a qualitative study
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