Needs assessment in unmet healthcare and family support services: A survey of caregivers of children and youth with autism spectrum disorder in Delaware.
Sudha Srinivasan, Annalisa Ekbladh, Brian Freedman and 1 others
PMID 33876563WHAT IT FOUND
Caregivers of 263 children and youth with autism reported unmet needs for speech-language therapy, occupational therapy, social skills, and family support, especially provider shortages and access barriers.
Key findings
01Around 55% families reported unmet child healthcare service needs, and around 48% families reported unmet family support service needs.
02Caregivers most often reported unmet needs for social skills training and speech-language therapy across all ages; in younger children they also reported unmet needs for occupational therapy, summer camp, and behavioral intervention.
03Limitations in accessing child healthcare services, unmet family support needs, older child age, and more prior early services were positively related to greater unmet child healthcare service needs.
STILL TO COME
How it was doneWhat they foundWhat it means for OTsWhat it means for SLPs
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What it does not show
The survey was adapted from another state's survey and was not further validated. Only 277 of 1120 surveys were returned, and 263 were analyzed. The sample was predominantly Caucasian, and many families had college or graduate degrees, so findings may not generalize broadly. Caregivers reported diagnoses and needs, so diagnoses were not clinically confirmed and need appropriateness could not be checked. The data were cross-sectional, so they cannot show change over time or cause. The survey did not capture wait times, referral details, service intensity, or specific intervention types. The models explained only 20 to 35% of the variance in outcome measures. Other factors were not measured.
Declared interests
The survey was funded through a HRSA grant awarded to the state of Delaware. Authors have no financial conflicts of interest to declare.
The easy way to misread this
Do not read the high unmet needs for speech-language therapy and occupational therapy as proof that these services are ineffective. The survey recorded caregiver-reported needs and access barriers, not treatment outcomes, and its associations cannot show cause.