Behind the scenes of parents nurturing a child with autism: A qualitative study in Malaysia

Abstract

Many parents have experienced difficulties in parenting children with autism. We, therefore, consider a more in-depth understanding that is necessary to explore the challenges facing parents and families to provide a better outcome for both. We interviewed 21 parents of 24 children with autism spectrum disorder (ASD) to qualitatively explore the challenges they experienced through a phenomenological framework. Four main aspects emerged as challenges to the parents: inadequate knowledge, psychological distress and stigma, lack of support, and barriers to services. These four themes reflect a lack of balance between the needs of caregivers and the services and resources or support available in the community to meet those needs. Our study contributes to an understanding of how parents perceive challenges, making it easier to take necessary action to meet their needs and ease their burden of stress. A concerted effort is needed to coordinate services across all disciplines to address these challenges.