Family-Centered Care: How Close Do We Get When Talking to Parents of Children Undergoing Diagnosis for Autism Spectrum Disorders?
Lynnea Myers, Sharon M Karp, Mary S Dietrich and 2 others
PMID 33140145WHAT IT FOUND
Parents of children diagnosed with ASD often found the diagnostic process stressful, even when providers listened, respected them, and gave information.
SLPs should expect parental stress and check whether families received clear next steps.
Key findings
01Most parents reported that providers usually or always listened, respected family values, gave needed information, treated them as partners, and spent enough time.
02The diagnostic process was quite or very stressful for 71% of parents, and the median anxiety/depression score was 5.6, which the paper classifies as moderate symptoms.
03Parents who reported receiving fewer family-centered care elements also reported more stress.
STILL TO COME
How it was doneWhat they foundWhat it means for SLPs
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What it does not show
The sample was small, with 31 parents, and parents volunteered to enroll. The sample was mostly white, female, and highly educated, so it may not represent all families. Parents reported their own experiences after the fact, which can be affected by memory and social desirability. The study used only parent reports, not provider reports. Parents interacted with 2-6 provider types, so the study cannot identify which provider type or visit stage caused the experiences.
Declared interests
The paper lists funding from Sigma Theta Tau International, the National Center for Advancing Translational Sciences, Vanderbilt University School of Nursing, the National Association of Pediatric Nurse Practitioners, and Karolinska Institute. The supplied text does not include a competing-interests statement.
The easy way to misread this
Do not conclude that family-centered care reduces parental stress. The study reports an association in 31 parents, not a tested intervention, and the reported link with anxiety/depression scores was -.17, p = 0.364.