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

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.

Psychological, sociocultural and economic coping strategies of mothers or female caregivers of children with a disability in Belu district, Indonesia

“…The five steps were: (i) familiarisation with the transcripts through reading data repeatedly, marking ideas, and giving comments to search for meanings, patterns, and ideas; (ii) identifying a thematic framework by making judgement and writing down key issues and concepts from participants; (iii) indexing all the data by making list of codes to look for similar or redundant codes and reduce them into smaller number as codes referring to the same theme were grouped together to reach a few overarching themes and sub-themes. The themes were both derived from the conceptual framework for coping strategies and generated from the data; (iv) creating a chart through arrangement thematic framework so that data could be compared within each interview and across the interviews; and (v) mapping and interpretation data as a whole [8,39,42,43]. This approach provides systematic structure to the management of qualitative data [42].…”

“…Belu district, the setting of the study, is located in the eastern part of Indonesia and shares the boarder with East Timor [ 8 , 37 ]. It covers the area of 1,284.97 km2, population of 204,541 people including 100,922 male and 103,619 female [ 37 , 38 ].…”

“…(Sekolah Luar Biasa Negeri, also known as SLBN) located in the district: elementary school (44 students), junior high school (14 students) and senior high school (13 students) level [8,34].…”

“…Childhood disability has psychological, social and economic impacts not only on a child with a disability but also the whole family, particularly parents and caregivers, such as mothers or female caregivers participating in this study and globally [5][6][7][8]. To respond to the impacts or challenges resulting from taking care of children with a disability, parents or caregivers are reported to use various coping strategies which include active processes and behaviours to manage continuing stressful situations [9][10][11][12][13].…”

“…The current findings contribute to the body of knowledge in public health domain and provide understanding on new childhood disability-related coping strategies which are still lacking in the existing literature [ 12 , 25 , 29 – 31 ]. The findings are presented separately from the impacts of childhood disability on mothers or female caregivers [ 8 ] as these are specifically about coping strategies used by mothers or female caregivers and need to be underpinned by existing literature on coping strategies. Understanding coping strategies of mothers or female caregivers is important to inform policy making and program development to address their needs and the needs of their families.…”