Sanggar Belajar Alternatif (SALT), Atambua, Nusa Tenggara Timur, Indonesia.
College of Medicine and Public Health, Flinders University, Adelaide, South Australia, Australia.
PLoS One. 2021 May 6;16(5):e0251274. doi: 10.1371/journal.pone.0251274. eCollection 2021.
Caring for children with a disability can cause a range of psychological and socioeconomic challenges for parents and caregivers, such as anxiety, depression, inability to find affordable and appropriate childcare, loss of income and expenses related to disability specific treatment. As part of a study exploring the impacts of childhood disability on mothers or female caregivers and families, and the copy strategies they used, this paper describes strategies employed by mothers or female caregivers to cope with challenges associated with childhood disability within their family in Belu district, Indonesia. A qualitative approach using one-on-one in-depth interviews was used to collect data from participants (n = 22) who were recruited using a combination of purposive and snowball sampling techniques. Interviews were recorded, transcribed verbatim and imported to NVivo 12 for analysis. A qualitative framework analysis was used to guide data analysis. The conceptual framework of coping strategies guided the conceptualisation and discussion of the findings. The findings showed that active psychological coping strategies, including cognitive or acceptance strategies, knowledge of both health condition and socio-academic related development of children with a disability, and family relationship and support, were used by the participants to cope with psychological challenges facing them. Self-reliance and religious/spiritual coping strategies were also utilised. Sociocultural strategies, such as social withdrawal or disengagement, professional support and culture-based support, were used by the participants to cope with social impacts, stigma, and discrimination associated with childhood disability. Participants also reported using financial strategies such as selling of family assets to cope with the economic challenges. The findings indicate the need for programs and interventions that address the needs of mothers and female caregivers and their families, to assist with effectively managing the significant challenges they face when caring for a child with a disability. Further studies are needed, with a larger number of participants and the inclusion of fathers or male caregivers, in order to better understand the broader coping experience of childhood disability impacts within families.
照顾残疾儿童会给父母和照顾者带来一系列心理和社会经济方面的挑战,例如焦虑、抑郁、无法找到负担得起且合适的儿童保育、收入损失以及与残疾特定治疗相关的费用。作为一项探索儿童残疾对母亲或女性照顾者及其家庭的影响以及他们所采用的复制策略的研究的一部分,本文描述了母亲或女性照顾者在印度尼西亚贝卢地区的家庭中,为应对与儿童残疾相关的挑战而采用的策略。本研究采用了一种定性方法,使用一对一的深入访谈,从参与者(n=22)那里收集数据,参与者是通过目的抽样和滚雪球抽样技术相结合招募的。访谈进行了录音、逐字转录并导入 NVivo 12 进行分析。使用定性框架分析来指导数据分析。应对策略的概念框架指导了数据的概念化和讨论。研究结果表明,参与者采用了积极的心理应对策略,包括认知或接受策略、对残疾儿童健康状况和社会学术发展的了解,以及家庭关系和支持,以应对他们面临的心理挑战。自力更生和宗教/精神应对策略也被采用。参与者还采用了社会文化应对策略,例如社会回避或脱离、专业支持和基于文化的支持,以应对与儿童残疾相关的社会影响、污名和歧视。参与者还报告说,他们采用了财务策略,例如出售家庭资产,以应对经济挑战。研究结果表明,需要有针对母亲和女性照顾者及其家庭的需求的方案和干预措施,以帮助他们有效地应对照顾残疾儿童时面临的重大挑战。需要进行更多的研究,包括更多的参与者并纳入父亲或男性照顾者,以更好地了解家庭中儿童残疾影响的更广泛应对经验。