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The psychosocial and economic impacts on female caregivers and families caring for children with a disability in Belu District, Indonesia

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  • Gregorius Abanit Asa
  • Nelsensius Klau Fauk
  • Paul Russell Ward
  • Lillian Mwanri

Abstract

The current study aimed to understand psychosocial and economic impacts of female caregivers and families caring for children with a disability in Belu district, Indonesia. A qualitative inquiry employing one-on-one in-depth interviews was used to collect data from participants (n = 22). Data analysis was guided by a framework analysis for qualitative research. Social implications framework and the economic consequence of disease and injury framework were used to guide the conceptualisation, analysis and discussion of the findings. Findings indicated that female caregivers of children with a disability experienced significant psychosocial challenges. These included feeling frustrated, sad, angry, worried, inferior and insecure due to rejection of their children by other kids with no disability. Poor physical conditions of and negative labelling given to their children and the fear of what the future held for their children with a disability added yet another layer of psychosocial challenges experienced by these women. Separation or divorce and reduced social interaction and engagement in the community were expressed social impact loaded to these women resulting from poor acceptability of the children by their fathers, increased time spent caring and discriminatory and stigmatising attitudes against their children with a disability. The participants also experienced economic impacts, such as increased health and transport expenses, loss of jobs and productivity, and lack of savings. The findings indicate the need for programs and interventions addressing the needs of mothers or female caregivers and families with disabled children. Further studies with large number of participants covering mothers, fathers and caregivers to understand broader experiences and the need of caring for children with a disability are recommended.

Suggested Citation

  • Gregorius Abanit Asa & Nelsensius Klau Fauk & Paul Russell Ward & Lillian Mwanri, 2020. "The psychosocial and economic impacts on female caregivers and families caring for children with a disability in Belu District, Indonesia," PLOS ONE, Public Library of Science, vol. 15(11), pages 1-16, November.
  • Handle: RePEc:plo:pone00:0240921
    DOI: 10.1371/journal.pone.0240921
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    References listed on IDEAS

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    1. Hope Corman & Robert Kaestner, 1992. "The effects of child health on marital status and family structure," Demography, Springer;Population Association of America (PAA), vol. 29(3), pages 389-408, August.
    2. Eve Wittenberg & Adrianna Saada & Lisa Prosser, 2013. "How Illness Affects Family Members: A Qualitative Interview Survey," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 6(4), pages 257-268, December.
    3. Elise J. Mark & Ina Conradie & Christine W.M. Dedding & Jacqueline E.W. Broerse, 2017. "How Poverty Shapes Caring for a Disabled Child: A Narrative Literature Review," Journal of International Development, John Wiley & Sons, Ltd., vol. 29(8), pages 1187-1206, November.
    4. Green, Sara E., 2003. ""What do you mean 'what's wrong with her?'": stigma and the lives of families of children with disabilities," Social Science & Medicine, Elsevier, vol. 57(8), pages 1361-1374, October.
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    1. Gregorius Abanit Asa & Nelsensius Klau Fauk & Lillian Mwanri & Paul Russell Ward, 2021. "Understanding Barriers to the Access to Healthcare and Rehabilitation Services: A Qualitative Study with Mothers or Female Caregivers of Children with a Disability in Indonesia," IJERPH, MDPI, vol. 18(21), pages 1-14, November.

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