Managing the Healthcare Needs of Adolescents with Autism Spectrum Disorder: The Parents\u27 Experience

The purpose of this phenomenological study was to describe the experiences of parents who manage the health needs of an adolescent with Autism Spectrum Disorder (ASD). Qualitative interviews were conducted with parents from 10 families of adolescents with ASD residing in Virginia. Data were analyzed using Clark Moustakas’ method of analysis of data in which the phenomenologist asks the following questions: What are the individual’s experiences, and in what context did they experience them? This study maximized credibility by using three strategies: prolonged engagement, peer debriefing, and member checking. “Parents needing help” emerged as the essence of the parents’ experiences. Four themes representing the essential challenging elements of the parents’ experiences included concern with medications, frustrations with healthcare services, recognizing secondary health issues, and the need for resources and services. Findings of the current study revealed key factors to be considered in the development and delivery of help in managing the adolescent with ASD healthcare needs. These included providing guidelines for primary care providers, increasing the healthcare provider’s awareness and understanding of ASD, and increasing the number of resources for parents of adolescents with ASD. The results of the study confirmed that managing the adolescent’s healthcare needs was frustrating and challenging and that parents had a need for help in managing these needs. Nurses can be integral in helping parents to overcome frustrations and challenges by becoming more aware of the ASD spectrum of neurobiological disorders, by creating and planning interventions for parents, by sharing information regarding resources and services, and by collaborating with others in the healthcare field to provide services for adolescents and their families. Additional research, both qualitative and quantitative is needed to understand how both parents and adolescents with ASD experience this transitional period