Risk and Resilience Among Mothers and Fathers of Primary School Age Children With ASD in Malaysia: A Qualitative Constructive Grounded Theory Approach.

Kartini Ilias,Karen Jennifer Golden,Kim Cornish,Hasnah Toran,Miriam Sang-Ah Park

doi:10.3389/fpsyg.2018.02275

Abstract

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 – “initial reaction to child’s ASD symptoms and diagnosis,” “family life affected by a child with ASD,” “awareness about ASD in Malaysia,” and “coping strategies, wellbeing, and becoming resilient.” The first three themes revolved around stress and adversity, and, the adaptability and acceptance of the parents. These processes illustrated the risks experienced by the parents of children with ASD in Malaysia. The last theme especially highlighted the strengths and determination 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.

Highlights

There is ample evidence that raising a child with autism spectrum disorder (ASD) is challenging and complex (Gray, 2002a; Meirsschaut et al, 2010; Weiss et al, 2012; Hayes and Watson, 2013; Cridland et al, 2014; Ooi et al, 2016)
The study results were reported following the consolidated criteria for reporting qualitative research (COREQ) checklist (Tong et al, 2007; see Supplementary Table 1)
Analyses of the participants’ interviews, yielded four prominent themes— “initial reaction to child’s ASD symptoms and diagnosis,” “family life affected by a child with ASD,” “awareness about ASD in Malaysia,” and “coping strategies, wellbeing, and becoming resilient”—that interact to foster growth and empowerment when adapting to a child with ASD in the family system

Summary

Introduction

There is ample evidence that raising a child with autism spectrum disorder (ASD) is challenging and complex (Gray, 2002a; Meirsschaut et al, 2010; Weiss et al, 2012; Hayes and Watson, 2013; Cridland et al, 2014; Ooi et al, 2016). Findings from previous studies have shown that the presence of children with ASD in the family impacts various domains of parental and family life (Hayes and Watson, 2013), such as the marital relationship, sibling relationships, family socialization patterns and family routines, etc. ASD has been the subject of a large and growing area of research in Western countries (Herring et al, 2006; Firth and Dryer, 2013; McStay et al, 2014). There is scant research that explores these subject matters in non-Western countries, which includes Malaysia (Samadi and McConkey, 2011; Daley et al, 2013; Freeth et al, 2014; Neik et al, 2014; Ilias et al, 2018)

Methods

Results

Conclusion