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Parent and health care provider perspectives related to disclosure of autism spectrum disorder in pediatric emergency departments

TitleParent and health care provider perspectives related to disclosure of autism spectrum disorder in pediatric emergency departments
Publication TypeJournal Article
Year of Publication2016
AuthorsMuskat, B, Greenblatt, A, Nicholas, DB, Ratnapalan, S, Cohen-Silver, J, Newton, AS, Craig, WR, Kilmer, C, Zwaigenbaum, L

Lead Author
Barbara Muskat

Study Aims and Objectives
To gain a deeper understanding of family and provider perspectives regarding disclosure of a child’s autism spectrum disorder diagnosis in an emergency department setting.

Methods- Sample, Procedure, Study Measures, Analysis
28 parents and 16 healthcare providers were contacted after their emergency room visit and asked to provide information about their experience. Analysis of the data was carried out examining their experiences around disclosure of their child’s ASD diagnosis.

Results- Main Findings
Families deliberated about whether to disclose their child's ASD diagnosis to staff often to avoid misconceptions and negative judgements about their child’s behavior, their parenting, and the impact of ASD on behavior. Reasons for non-disclosure of the ASD by families included not wanting their child to hear discussion about the ASD and fear about staff's possible misconceptions about ASD in general. The families that decided to disclose did so hoping staff could take the ASD diagnosis and its presentation into account during medical assessment. Also, because the noise and chaos of waiting rooms could be challenging for their child, families hoped that wait time might be shorter if staff were informed of ASD diagnosis.

Conclusion- Summary Statement
Families had several suggestions about how to make the ASD disclosure process less stressful in an emergency department. One suggestion was that providers ask parents if their child has any special needs, thus avoiding the parent having to voluntarily bring up the issue. Healthcare providers agreed that disclosure was important to provide appropriate care. Thus, finding ways to improve family experience with ASD disclosure in medical situations is extremely important.

PubMed ID26851228