title: Managing the health care needs of adolescents with autism spectrum disorder: the parents' experience.
abstract: Parents of adolescents with autism spectrum disorder (ASD) experience the challenges of navigating the health care system, locating information about ASD, lacking an understanding of prescribed medications, and experiencing minimal social support from health care providers. The purpose of this phenomenological study was to describe the experiences of parents who manage the health needs of an adolescent with ASD. Qualitative interviews were conducted at a university setting with 12 parents of 10 adolescents with ASD residing in Central Virginia. Data were analyzed using Moustakas' method 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 using 3 strategies: prolonged engagement, peer debriefing, and member checking. "Parents needing assistance" 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 health care 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 health care for adolescents with ASD. These include creating and planning interventions for parents, sharing information about resources and services, and collaborating with others in the health care field. Additional research, both qualitative and quantitative, is needed to understand how parents and adolescents with ASD experience this transitional period.
authors.affiliation: Department of Nursing, James Madison University.
authors.forename: Julie A
authors.initials: JA
authors.lastname: Strunk
authors.affiliation: Cincinnati Children's Hospital Medical Center.
authors.forename: Rita
authors.initials: R
authors.lastname: Pickler
authors.affiliation: School of Nursing, Virginia Commonwealth University.
authors.forename: Nancy L
authors.initials: NL
authors.lastname: McCain
authors.affiliation: School of Nursing, Virginia Commonwealth University.
authors.forename: Suzanne
authors.initials: S
authors.lastname: Ameringer
authors.affiliation: School of Psychology, Virginia Commonwealth University.
authors.forename: Barbara J
authors.initials: BJ
authors.lastname: Myers
mesh_terms: D000293:Adolescent; D002648:Child; D002659:Child Development Disorders, Pervasive / Q000150:complications* / Q000209:etiology / Q000628:therapy; D002668:Child Rearing / Q000523:psychology*; D005195:Family Relations; D005260:Female; D006801:Humans; D008297:Male; D010290:Parents / Q000523:psychology*; D012944:Social Support