Daily Life and Challenges Faced By Households With Permanent Childhood Developmental Disability in Rural Tanzania – A Qualitative Study

• Published in: Journal of developmental and physical disabilities Vol. 34; no. 3; pp. 471 - 490
• Main Authors: Castellani, Joëlle, Kimbute, Omari, Makasi, Charles, Mrango, Zakayo E., Paulus, Aggie T. G., Evers, Silvia M. A. A., Hardy, Pip, Sumner, Tony, Keiya, Augusta, Mihaylova, Borislava, Faiz, Mohammad Abul, Gomes, Melba
• Format: Journal Article
• Language: English
• Published: New York Springer US 01.06.2022; Springer Nature B.V
• Subjects: Activities of daily living; Autonomy; Behavioral Science and Psychology; Caregivers; Child and School Psychology; Childhood; Children with disabilities; Developmental disabilities; Diagnostic Teaching; Disability; Earnings; Economic stress; Families & family life; Households; Interviews; Learning Problems; Occupational stress; Original Article; Pediatrics; Psychology; Public Health; Qualitative research; Relatives; Semi Structured Interviews; Severity; Social support; Tanzania; Poverty; Challenges; Developmental disability; Africa
• ISSN: 1056-263X; 1573-3580
• DOI: 10.1007/s10882-021-09809-6

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.