Family-Centered Care: How Close Do We Get When Talking to Parents of Children Undergoing Diagnosis for Autism Spectrum D
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ORIGINAL PAPER
Family‑Centered Care: How Close Do We Get When Talking to Parents of Children Undergoing Diagnosis for Autism Spectrum Disorders? Lynnea Myers1,5 · Sharon M. Karp2 · Mary S. Dietrich2,3 · Wendy S. Looman4 · Melanie Lutenbacher2,3 Accepted: 17 October 2020 © The Author(s) 2020
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. Keywords Parents · Autism spectrum disorders · Family-centered care · Communication · Diagnosis Numerous professional, national, and international organizations emphasize the importance of patient and familycentered care (FCC) to achieve quality healthcare outcomes (Committee on Hospital Care and Institute for Patient- and Family-Centered Care [IPFCC] 2012; Institute of Medicine 2001; Medical Home Initiatives for Children with Special Needs Project Advisory Committee 2002; Robert Wood Johnson Foundation, n.d.). Inherent in FCC is the development of a mutually beneficial partnership between families and health care providers (Committee on Hospital Care and Electronic supplementary material The online version of this article (https://doi.org/10.1007/s10803-020-04765-0) contains supplementary material, which is available to authorized users. * Lynnea Myers [email protected] 1
Present Address: Gustavus Adolphus College, 800 College Avenue West, Saint Peter, MN 56082, USA
2
Vanderbilt University School of Nursing, 461 21st Avenue South, Nashville, TN, USA
3
Vanderbilt University School of Medicine, 1161 21st Avenue South, Nashville, TN, USA
4
University of Minnesota School of Nursing, 308 SE Harvard Street, Minneapolis, MN, USA
5
Karolinska Institutet Center of Neurodevelopmental Disorders (KIND), Stockholm, Sweden
IPFCC 2012). Effective communication between parents and providers is critical to FCC and an expectation of quality pediatric health care (Levetown and AAP Committee on Bioethics 2008). Many parents and providers, however, continue to describe difficulties with their communication interactions, especially parents of children undergoing diagnosis for autism spectrum disorders (Brogan and Knussen 2003; Crane et al. 2016; Moh and Magiati 2012; Siklos and Kerns 2007). Several months or years may pass from the time when children are first identified with concerns related to their development until they receive a diagnosis of ASD (Zuckerman et al. 2015). This is a pe
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