Parental perspectives on the lived experience of having a child with autism spectrum disorder in Sri Lanka

Abstract

INTRODUCTION: Autism spectrum disorder (ASD) is thought of as a childhood developmental disorder. However, significant costs resulting from the loss of productivity of families have long-lasting consequences. There is a lack of published research on parental perspectives of the living experience with ASD in Sri Lanka. OBJECTIVES: To identify parental perspectives on the challenges and experiences of raising a child with ASD in the Sri Lankan context. METHOD: A qualitative descriptive study was conducted in the outpatient services of the Provincial General Hospital in Ratnapura, Sri Lanka. Thirty purposefully selected parents of children having ASD participated and one-third were fathers. The sample had parents from urban, semi-urban and rural areas. Professionals, semi-skilled and skilled workers were also selected. Participants represented different ethnic and religious backgrounds. Written informed consent was taken from all and ethical clearance was obtained from the Ethics Review Committees of the Faculty of Medicine, University of Kelaniya and Provincial General Hospital Ratnapura. The focused semi-structured interviews were conducted by a trainee speech and language therapist. Recorded interviews were transcribed verbatim into Microsoft Word and analysed thematically. RESULTS: The 30 participants were aged from 35-46 years. The thematic analysis revealed several prominent themes about the parental experience. These themes were emotional stress and impact on the marital relationship, coping strategies and positives related to parenting a child with autism, dealing with challenging behaviours, perceived stigma and worries about future functioning, limited access to health and educational services, financial and caregiving burden. CONCLUSIONS: Most parents expressed negative perspectives on emotional stress, impact on the marital relationship, dealing with challenging behaviours, perceived stigma, limited access to health and educational services, financial burden, caregiving burden and worries about future functioning of their children. However, having a child with autism has allowed a few parents to develop coping strategies and positives related to their family relationships.