Gona Joseph K, Newton Charles R, Rimba Kenneth K, Mapenzi Rachel, Kihara Michael, Vijver Fonns V, Abubakar Amina
Centre for Geographic Research Medicine (Coast), Kenya Medical Research Institute, Kilifi, Kenya.
University of Oxford, Oxford, UK.
Rural Remote Health. 2016 Apr-Jun;16(2):3517. Epub 2016 Apr 20.
Research on the challenges of raising a child with autism is mostly conducted in Europe, North America and Australia, and has revealed that parents have to come to terms with living with a lifelong developmental disability. In addition, parents are faced with numerous concerns, such as caring burdens, poor prognosis, and negative public attitudes. Virtually no research has been conducted in Africa on this subject.
Thirty-seven interviews and eight focus group discussions were conducted with parents of children with autism and professionals in regular contact with these parents from rural and urban counties of the Kenyan coast. The study investigated challenges faced by parents and how they cope with those challenges. A purposive-convenience sampling procedure was used in selecting the study participants. A digital recorder was used to record all the interviews and focus group discussions. Transcriptions were done in Swahili, translated into English, and then imported to the NVivo software program for content analysis.
The results indicate that parents of children with autism on the Kenyan coast experience common challenges including stigma, lack of appropriate treatment, financial and caring burdens regardless of their religious and cultural backgrounds. Coping strategies applied by parents comprised problem-focused aspects that involve diet management and respite care, and emotion-focused aspects that consist of beliefs in supernatural powers, prayers and spiritual healing.
This qualitative study reveals a range of challenges that could have significant impact when caring for a child with autism. Coping strategies applied by parents target the physical health of the child and the psychological wellbeing of the parent. Consideration of these outcomes is vital as they could impact the initiation of a community-based rehabilitation service delivery in rural settings where parents play an active role.
关于抚养自闭症儿童所面临挑战的研究大多在欧洲、北美和澳大利亚进行，研究表明，父母不得不接受与终身发育障碍相伴的生活。此外，父母还面临诸多担忧，如照料负担、预后不佳以及公众的负面态度。在非洲，几乎没有关于这个主题的研究。
对肯尼亚沿海农村和城市县的自闭症儿童家长以及经常与这些家长接触的专业人员进行了37次访谈和8次焦点小组讨论。该研究调查了家长面临的挑战以及他们如何应对这些挑战。在选择研究参与者时采用了目的便利抽样程序。使用数字录音机记录所有访谈和焦点小组讨论。转录工作先用斯瓦希里语完成，然后翻译成英语，再导入NVivo软件程序进行内容分析。
结果表明，肯尼亚沿海地区自闭症儿童的家长，无论其宗教和文化背景如何，都面临着共同的挑战，包括耻辱感、缺乏适当治疗、经济和照料负担。家长采用的应对策略包括以问题为中心的方面，如饮食管理和临时照料，以及以情绪为中心的方面，包括对超自然力量的信仰、祈祷和精神治疗。
这项定性研究揭示了一系列在照料自闭症儿童时可能产生重大影响的挑战。家长采用的应对策略针对儿童的身体健康和家长的心理健康。考虑这些结果至关重要，因为它们可能会影响农村地区以社区为基础的康复服务的启动，而在农村地区，家长发挥着积极作用。
