Sanggar Belajar Alternatif (SALT), Atambua, Nusa Tenggara Timur, Indonesia.
College of Medicine and Public Health, Flinders University, Adelaide, South Australia, Australia.
PLoS One. 2020 Nov 4;15(11):e0240921. doi: 10.1371/journal.pone.0240921. eCollection 2020.
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.
本研究旨在了解印度尼西亚贝鲁地区照顾残疾儿童的女性照顾者及其家庭的心理社会和经济影响。采用一对一深入访谈的定性探究方法从参与者(n=22)处收集数据。数据分析遵循定性研究的框架分析。社会影响框架和疾病与伤害的经济后果框架用于指导研究结果的概念化、分析和讨论。研究结果表明,残疾儿童的女性照顾者经历了重大的心理社会挑战。这些挑战包括因其他无残疾儿童拒绝其子女而感到沮丧、悲伤、愤怒、担忧、自卑和不安全。子女身体状况不佳以及对其子女的负面标签,以及对残疾子女未来的恐惧,给这些女性带来了另一层心理社会挑战。由于父亲对子女的接受程度低、照顾时间增加、对残疾子女的歧视和污名化态度,这些女性还经历了社会影响,如离婚、社会交往和参与社区活动减少。参与者还经历了经济影响,如增加了医疗和交通支出、失业和生产力下降,以及缺乏储蓄。研究结果表明,需要制定针对残疾儿童的母亲或女性照顾者及其家庭的需求的方案和干预措施。建议进行更多研究,以了解更多关于母亲、父亲和照顾者的广泛经历以及照顾残疾儿童的需求。