Parents' burdens of service for children with ASD – implications for service providers

Abstract

PurposeThe purpose of this investigation is to gain insight into parents' perceptions of benefits vs burdens (value) of educational and healthcare service received for their child with ASD. Parents are the main integrators of long-term educational and healthcare service for their child with ASD.Design/methodology/approachDesign/methodology/approach included (1) a sentiment analysis of discussion forum posts from an autism message board using a rule-based sentiment analysis tool that is specifically attuned to sentiments expressed in social media and (2) a qualitative content analysis of one-on-one interviews with parents of children diagnosed with ASD, complemented with interviews with experienced educators and clinicians.FindingsFindings reveal the link between customized service integration and long-term benefits. Both parents and service providers emphasize the need to integrate healthcare and educational service to create holistic long-term care for a child with ASD. Parents highlight the benefits of varied services, but availability or cost are burdens if the service is not publicly provided, or covered by insurance. Service providers' lack of experience with ASD and people's ignorance of the challenges of ASD are burdens.Practical implicationsEnsuring health outcomes for a child with ASD requires an integrated service system and long-term, customer-centric service process because the scope of service covers the child's entire childhood. Customized educational and healthcare service must be allocated and budgeted early in order to reach the goal of a satisfactory service output for each child.Originality/valueThis is the first service research to focus on parents' challenges with obtaining services for their child with ASD. This paper provides service researchers and managers insight into parents' perceptions of educational and healthcare service value (i.e. benefits vs. burdens) received for their child with ASD. These insights into customer-centric perceptions of value may be useful to research and may help service providers to innovate and provide integrated service directly to parents, or indirectly to service providers, who serve children with ASD.