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Conversations With Health Care Providers and Parents Before Autism Diagnosis: A Qualitative Study. J Pediatr Health Care 2020;34(5):453-461



Pubmed ID




Scopus ID

2-s2.0-85087761961 (requires institutional sign-in at Scopus site)   2 Citations


INTRODUCTION: The purpose of this study was to explore communication with health care providers from the perceptions of parents before their child's diagnosis of autism spectrum disorder and provide some examples of how communication may contribute to the autism diagnosis.

METHOD: This study used a qualitative descriptive design with multiple individual structured in-person interviews.

RESULTS: Three themes captured parents' (n = 8) descriptions of the phases of communication during their children's diagnoses including, (1) anguished questioning, (2) urgently seeking help, and (3) expecting a diagnosis. In addition, three themes characterized the communication style that parents needed, although not always received, in each of the periods of diagnosis including (1) compassionate curiosity, (2) acknowledgment and affirmation, and (3) engagement with parents.

DISCUSSION: Results point to opportunities for pediatric providers to use a more empathic and engaging communication style during the diagnostic process with better identification of education and support needed by parents and families.

Author List

Johnson NL, Krueger W, Jilek E, Haglund K


Norah Johnson PhD Assistant Professor in the College ofnursing department at Marquette University

MESH terms used to index this publication - Major topics in bold

Autism Spectrum Disorder
Autistic Disorder
Health Personnel
Physician-Patient Relations
Qualitative Research