Acharya Sabitri, Sharma Kalpana
Chitwan Medical College, Affilated to Tribhuwan University, Chitwan, Bharatpur, Nepal.
Autism Res Treat. 2021 Nov 6;2021:6614490. doi: 10.1155/2021/6614490. eCollection 2021.
Autism is a neurodevelopmental problem that is increasing at an alarming rate worldwide. Rearing and caring for children with autism depends upon the perception of mothers and various factors associated with it. There is a gap in the literature regarding the detailed accounts of mother's experiences regarding autism in Nepal. Hence, this study was undertaken to explore lived experiences of mothers raising children with autism.
Qualitative phenomenological study design was used and nine mothers with autistic children were selected using purposive sampling technique. Data were collected using in-depth interview guidelines and analyzed using Colaizzi's steps.
Findings of the study revealed that mothers raising children with autism encountered numerous problems in their life. They felt physically exhausted due to the continuous supervision of their child. Emotional problems such as denial, upset/sadness, and worry were also common among them. In addition, all mothers faced social problems such as social blame, social isolation, and ignorance from their relatives and society due to the atypical behavior of their child. Furthermore, the economic problem was also acute among mothers due to job loss, costly medical treatment, and therapies. So, to deal with the stressors they faced, mothers adopted various coping strategies such as respite care, problem-focused strategies, religious coping, and positive coping in their everyday life.
In conclusion, to the authors' knowledge, this is the first study documenting the experiences of Nepalese mothers having autistic children. Hence, health care professionals need to pay more attention to address the problems of mothers while treating their autistic children. The Government of Nepal also needs to formulate a policy for the rehabilitation of autistic children in society.
自闭症是一种神经发育问题，在全球范围内正以惊人的速度增长。抚养和照顾自闭症儿童取决于母亲的认知以及与之相关的各种因素。关于尼泊尔母亲对自闭症经历的详细描述，文献中存在空白。因此，本研究旨在探索抚养自闭症儿童的母亲的生活经历。
采用定性现象学研究设计，通过目的抽样技术选取了九位患有自闭症孩子的母亲。使用深入访谈指南收集数据，并采用科莱齐的步骤进行分析。
研究结果显示，抚养自闭症儿童的母亲在生活中遇到了许多问题。由于对孩子的持续监管，她们感到身体疲惫。否认、心烦/悲伤和担忧等情绪问题在她们中也很常见。此外，由于孩子的非典型行为，所有母亲都面临社会问题，如社会指责、社会孤立以及来自亲属和社会的忽视。此外，由于失业、昂贵的医疗治疗和疗法，母亲们还面临严重的经济问题。因此，为了应对所面临的压力源，母亲们在日常生活中采取了各种应对策略，如临时护理、以问题为中心的策略、宗教应对和积极应对。
据作者所知，这是第一项记录尼泊尔自闭症儿童母亲经历的研究。因此医，护人员在治疗自闭症儿童时需要更加关注解决母亲们的问题。尼泊尔政府也需要制定一项自闭症儿童社会康复政策。
