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Brief Report: The Experiences of Families of Children with an Autism Spectrum Disorder When Seeking Patient-and Family-Centered Care

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Abstract

Patient-and family-centered care (PFCC) is a partnership among healthcare professionals, patients, and families that is grounded in mutual respect and is an approach that impacts delivery of care, decision-making, and information sharing. PFCC should be implemented for all, including individuals with Autism Spectrum Disorders (ASD), who experience adverse medical encounters despite increased prevalence and healthcare utilization. Insights into the experiences of families during medical experiences can inform clinical practice by increasing healthcare professionals’ understanding of the population. Using a mixed-methods approach, the perspectives of 40 families were analyzed. The themes include barriers and opportunities to improve upon the delivery of PFCC, which help to advance healthcare interactions and inform solution-based initiatives to facilitate medical visits that may benefit all patients.

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Authors and Affiliations

  1. The Institute for Innovation in Development, Engagement, and Learning Systems (IDEALS), Johns Hopkins University School of Education, 2800 North Charles Street, Baltimore, MD, 21218, USA

    Jennifer L. Kouo & Jillian Gallogly

  2. Department of Pediatrics, Johns Hopkins University School of Medicine, Baltimore, MD, 21287, USA

    Theodore S. Kouo

Authors
  1. Jennifer L. Kouo
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  2. Theodore S. Kouo
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  3. Jillian Gallogly
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Contributions

JLK conceptualized and designed the study, drafted the initial manuscript, supported the analyses, reviewed and revised the manuscript, and approved the submission of the final manuscript. TSK contributed to the design of the study, analysis of data, and reviewed and revised the manuscript. JG supported the analysis of data, drafting of the manuscript, and approving the submission of the final manuscript.

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Correspondence to Jennifer L. Kouo.

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Kouo, J.L., Kouo, T.S. & Gallogly, J. Brief Report: The Experiences of Families of Children with an Autism Spectrum Disorder When Seeking Patient-and Family-Centered Care. J Autism Dev Disord 52, 4172–4180 (2022). https://doi.org/10.1007/s10803-021-05272-6

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