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

• Published in: Journal of autism and developmental disorders 2021-09, Vol.51 (9), p.3073-3084
• Main Authors: Myers, Lynnea, Karp, Sharon M., Dietrich, Mary S., Looman, Wendy S., Lutenbacher, Melanie
• Format: Article
• Language: English
• Subjects: Anxiety; Anxiety Disorders; Autism; Autism Spectrum Disorder - diagnosis; Autistic children; Behavioral Science and Psychology; Beliefs, opinions and attitudes; Care and treatment; Child; Child and School Psychology; Children; Clinical Diagnosis; Depression (Psychology); Diagnosis; Families & family life; Family; Family centered care; Family Programs; Health care; Humans; Medical diagnosis; Medical personnel; Mixed methods research; Neurosciences; Original Paper; Parent Attitudes; Parents; Parents & parenting; Patient-Centered Care; Pediatrics; Pervasive Developmental Disorders; Psychology; Public Health; Stress Variables; Symptoms (Individual Disorders); Talking
• ISSN: 0162-3257; 1573-3432; 1573-3432
• DOI: 10.1007/s10803-020-04765-0

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.