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

Joëlle Castellani,Augusta Keiya,Silvia M A A Evers,Mohammad Abul Faiz,Borislava Mihaylova,Tony Sumner,Pip Hardy,Omari Kimbute,Zakayo E Mrango,Aggie T G Paulus,Melba Gomes,Charles Makasi

doi:10.1007/s10882-021-09809-6

Abstract

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.

Highlights

Severe developmental disability in children alters a child’s life and that of the family but the consequences have rarely been detailed
Challenges faced by caregivers and coping strategies to overcome these barriers have been described but there are quite limited data on the burden of caring for children with developmental disabilities in rural Africa, and how this burden changes as the child develops (Gona et al, 2011; Hartley et al, 2005; McNally & Mannan, 2013)
We carrried out a qualitative study of adolescent children with serious permanent developmental sequelae ranging from major cognitive impairments to severe physical restrictions, or both to document the perceptions of caregivers on (1) their child’s development, (2) the treatment, (3) their emotional and physical burden, (4) their challenges and (5) their coping strategies over a 10-year period after the initial sequelae

Summary

Introduction

Severe developmental disability in children alters a child’s life and that of the family but the consequences have rarely been detailed. Challenges faced by caregivers and coping strategies to overcome these barriers have been described but there are quite limited data on the burden of caring for children with developmental disabilities in rural Africa, and how this burden changes as the child develops (Gona et al, 2011; Hartley et al, 2005; McNally & Mannan, 2013). We carrried out a qualitative study of adolescent children with serious permanent developmental sequelae ranging from major cognitive impairments to severe physical restrictions, or both to document the perceptions of caregivers on (1) their child’s development, (2) the treatment, (3) their emotional and physical burden, (4) their challenges and (5) their coping strategies over a 10-year period after the initial sequelae

Methods

Results

Conclusion