ERIC Number: EJ1431444
Record Type: Journal
Publication Date: 2022-Jun
Pages: 20
Abstractor: As Provided
ISBN: N/A
ISSN: ISSN-1056-263X
EISSN: EISSN-1573-3580
Available Date: N/A
Daily Life and Challenges Faced by Households with Permanent Childhood Developmental Disability in Rural Tanzania -- A Qualitative Study
Joëlle Castellani; Omari Kimbute; Charles Makasi; Zakayo E. Mrango; Aggie T. G. Paulus; Silvia M. A. A. Evers; Pip Hardy; Tony Sumner; Augusta Keiya; Borislava Mihaylova; Mohammad Abul Faiz; Melba Gomes
Journal of Developmental and Physical Disabilities, v34 n3 p471-490 2022
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.
Descriptors: Foreign Countries, Daily Living Skills, Accessibility (for Disabled), Rural Areas, Severe Disabilities, Developmental Disabilities, Family (Sociological Unit), Children, Parents, Intellectual Disability, Physical Disabilities, Family Attitudes, Family Role, Family Relationship, Educational Discrimination, Financial Problems, Emotional Response
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Publication Type: Journal Articles; Reports - Research
Education Level: N/A
Audience: N/A
Language: English
Sponsor: N/A
Authoring Institution: N/A
Identifiers - Location: Tanzania
Grant or Contract Numbers: N/A
Data File: URL: https://www.patientvoices.org.uk/savingbrains.htm
Author Affiliations: N/A