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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Publicado en:Journal of Developmental & Physical Disabilities Vol. 34; no. 3; pp. 471 - 491
Autores principales: 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
Formato: research tables/charts Journal Article
Publicado: Springer Nature Jun2022
Acceso en línea:Ver este registro en EBSCOhost
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      dt: Jun2022
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      pub: Springer Nature
      place: New York, New York
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        10.1007/s10882-021-09809-6
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        atl: Daily Life and Challenges Faced By Households With Permanent Childhood Developmental Disability in Rural Tanzania – A Qualitative Study.
      aug:
        au:
          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
        affil: Department of Health Services Research, Care and Public Health Research Institute (CAPHRI), Maastricht University, Maastricht, The Netherlands
      sug:
        subj:
          Child Development Disorders Psychosocial Factors
          Developmental Disabilities Psychosocial Factors
          Rural Areas Tanzania
          Life Experiences
          Poverty
          Caregiver Attitudes
          Human
          Tanzania
          Qualitative Studies
          Family
          Child
          Semi-Structured Interview
          Consent (Research)
          Autonomy
          Financial Stress
          Stress, Psychological
          Child: 6-12 years
      ab: 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.
      pubtype: Academic Journal
      doctype:
        research
        tables/charts
        Journal Article
      ougenre: Article
    language: English
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