Family-Centered Care: How Close Do We Get When Talking to Parents of Children Undergoing Diagnosis for Autism Spectrum Disorders?

Lynnea Myers, Sharon M. Karp, Mary S. Dietrich, Wendy S. Looman, Melanie Lutenbacher

Research output: Contribution to journalArticlepeer-review

Abstract

Autism spectrum disorder (ASD) affects 1:59 children, yet little is known about parents’ perceptions of family-centered care (FCC) during the diagnostic process leading up to diagnosis. This mixed-methods study explored key elements of FCC from 31 parents of children recently diagnosed with ASD using parallel qualitative and quantitative measures. Parents rated highly their receipt of FCC and discussed ways providers demonstrated FCC. However, the majority of parents indicated that the period when their child was undergoing diagnosis was stressful and reported symptoms of depression and anxiety. The study points to ways in which health care providers can enhance FCC provided to families when a child is undergoing ASD diagnosis.

Original languageEnglish (US)
JournalJournal of Autism and Developmental Disorders
DOIs
StateAccepted/In press - 2020

Bibliographical note

Funding Information:
Open access funding provided by Karolinska Institute.. The primary author received funding for this study from Sigma Theta Tau International Chi At-Large and Iota Chapters, CTSA Award No. UT1TR000445 from the National Center for Advancing Translational Sciences, the Vanderbilt University School of Nursing, and the Minnesota Chapter of the National Association of Pediatric Nurse Practitioners. This article was prepared from Lynnea Myers’ doctoral dissertation.

Keywords

  • Autism spectrum disorders
  • Communication
  • Diagnosis
  • Family-centered care
  • Parents

PubMed: MeSH publication types

  • Journal Article

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