title: Parent Perceptions of Care Received by Children With an Autism Spectrum Disorder.
abstract: Research in the post-genomic era has provided substantial contributions toward identification of medical, genetic and environmental heritability factors associated with autism spectrum disorder (ASD). A specific etiology related to the diagnosis remains unclear, although prevalence statistics continue to rise with profound impact on families and their primary care providers (PCPs). Support professionals encounter significant challenges delivering comprehensive management for this complex neurobehavioral and developmental disorder. Children with ASD experience significantly higher risk for unmet healthcare needs, and parents report less satisfaction with their care although current literature does not fully explain why this issue persists. This study sought parent insight for the missing answers needed to inform practice. Eleven parents of children with an ASD participated in the study. Parent perceptions of care were examined utilizing Interpretive Phenomenological Analysis (IPA) and the Measure of Process of Care (MPOC-20) to illuminate and describe their lived experiences raising children with ASD, and interactions with their PCPs. Most parents utilized their child's PCP for general health maintenance, and many felt their PCP was unable to manage issues specifically related to their child's ASD. Most did not have an expectation for support with behavioral management in the home and school setting or identification of community and mental health resources, although many struggled with unaddressed needs in both of these realms. Utilizing parent perceptions to highlight practice deficiencies can build a foundation for care models that are more comprehensive and family centered.
authors.affiliation: St. John Fisher College, School of Nursing, Rochester, NY. Electronic address: Srussell@rpcn.org.
authors.forename: Sarah
authors.initials: S
authors.lastname: Russell
authors.affiliation: St. John Fisher College, School of Nursing, Rochester, NY. Electronic address: Cmccloskey@sjfc.edu.
authors.forename: Cynthia Ricci
authors.initials: CR
authors.lastname: McCloskey
mesh_terms: D000328:Adult; D000067877:Autism Spectrum Disorder / Q000175:diagnosis / Q000523:psychology / Q000628:therapy*; D002648:Child; D002675:Child, Preschool; D002658:Developmental Disabilities / Q000175:diagnosis / Q000523:psychology / Q000628:therapy*; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment; D010287:Parent-Child Relations; D010290:Parents / Q000523:psychology*; D018802:Patient-Centered Care / Q000458:organization & administration*; D010465:Perception; D011320:Primary Health Care / Q000458:organization & administration; D011788:Quality of Life; D018570:Risk Assessment; D011795:Surveys and Questionnaires; D016896:Treatment Outcome; D014481:United States
keywords: ASD; Autism spectrum disorder; Children; Parent; Perceptions