Ilias Kartini, Cornish Kim, Park Miriam Sang-Ah, Toran Hasnah, Golden Karen Jennifer
Jeffrey Cheah School of Medicine and Health Sciences, Global Asia in the 21st Century Research Platform (GA21), Monash University Malaysia, Subang Jaya, Malaysia.
Department of Basic Sciences, Faculty of Health Sciences, Universiti Teknologi MARA, Puncak Alam, Malaysia.
Front Psychol. 2019 Jan 8;9:2275. doi: 10.3389/fpsyg.2018.02275. eCollection 2018.
Little is known about the coping and resilience experiences of parents of children with autism spectrum disorder (ASD) in the Malaysian cultural context. This study utilized a qualitative methodological approach adopting constructive grounded theory. The study sought to address the lack of research to date exploring the risk and protective experiences that contribute to parental stress and resilience for parents of primary school age children with ASD in the Malaysian setting. Twenty-two parents of children with ASD (13 mothers and 9 fathers) participated in semi-structured interviews. A strength of the study was the inclusion of both mother and father participant perspectives. The interviews lasted 50-80 min (mean: 67.5 min). The 22 parents had a total of 16 children (12 males; 4 females) formally diagnosed with ASD. Child age ranged between 5 and 12 years (mean age: 8.44). Overall, analysis of the 22 interviews revealed four prominent themes - and " The first three themes revolved around , and, the of the parents. These processes illustrated the risks experienced by the parents of children with ASD in Malaysia. The last theme especially highlighted the of the parents and illustrated the protective experiences and processes that helped parents to develop and enhance resilience. Overall, the findings revealed that resilience develops synergistically and dynamically from both risk and protective experiences across different levels - individual, family, community, society and government. The findings motivated the development of our theoretical model of resilience that can help health and education professionals tailor assessment and interventions for parents of children with ASD in the Malaysian context. Clinical, policy, and research suggestions were discussed.
在马来西亚文化背景下,对于自闭症谱系障碍(ASD)儿童家长的应对方式和适应力体验知之甚少。本研究采用建构性扎根理论的定性研究方法。该研究旨在解决迄今为止在马来西亚背景下,缺乏对有助于小学适龄ASD儿童家长压力和适应力的风险及保护体验的研究。22名ASD儿童的家长(13名母亲和9名父亲)参与了半结构化访谈。该研究的一个优势是纳入了母亲和父亲参与者双方的观点。访谈持续了50 - 80分钟(平均:67.5分钟)。这22名家长共有16名被正式诊断为ASD的孩子(12名男性;4名女性)。孩子年龄在5至12岁之间(平均年龄:8.44岁)。总体而言,对这22次访谈的分析揭示了四个突出主题——前三个主题围绕家长的……、……和……。这些过程说明了马来西亚ASD儿童家长所经历的风险。最后一个主题特别强调了家长的……,并阐述了有助于家长培养和增强适应力的保护体验及过程。总体而言,研究结果表明适应力是从个体、家庭、社区、社会和政府等不同层面的风险和保护体验中协同且动态地发展起来的。这些研究结果推动了我们适应力理论模型的发展,该模型可帮助健康和教育专业人员为马来西亚背景下ASD儿童的家长量身定制评估和干预措施。文中还讨论了临床、政策和研究方面的建议。