Training Parents of Youth with Autism Spectrum Disorder to Advocate for Adult Disability Services: Results from a Pilot Randomized Controlled Trial.
Julie Lounds Taylor, Robert M Hodapp, Meghan M Burke and 2 others
PMID 28070786WHAT IT FOUND
Parents who completed this 12-week advocacy training knew more about adult disability services and felt more empowered than wait-list controls.
In-person group attendance was linked to higher confidence and empowerment, while knowledge gains occurred regardless of whether parents attended live or watched recordings.
Key findings
01Parents in the intervention group knew more about the adult service system, felt more comfortable advocating, and felt more empowered than controls after controlling for baseline scores.
02Among intervention participants, attending more sessions in-person was correlated with higher advocacy skills-comfort and empowerment, but not with knowledge gains.
03The study used an 'as-treated' analysis, excluding the four families who dropped out, rather than an intention-to-treat approach.
STILL TO COME
How it was doneWhat they foundWhat it means for OTs
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What it does not show
The study was a pilot with a small sample size (41 analyzed), limiting generalizability. An 'as-treated' analysis was used instead of 'intention-to-treat', which may overestimate the intervention's effect by excluding dropouts. Outcomes were based solely on parent self-report and measured only immediately after the 12-week intervention, with no long-term follow-up data on whether these gains persisted or led to actual service access. The curriculum was specific to one state's disability service systems, so knowledge gains may not transfer to other jurisdictions. Attrition was higher among minority and lower-income families, and all dropouts were from distance sites, suggesting the program may not be equally accessible or acceptable to all populations.
Declared interests
No specific funding source or conflict of interest declaration is provided in the text.
The easy way to misread this
Do not assume the program improves actual service access for the youth; the study only measured parents' perceived knowledge and confidence immediately after training, not whether they successfully obtained services later. Additionally, the in-person advantage for confidence was an exploratory finding from a small sample, so remote delivery should not be dismissed without considering local resources.