Testing an Advocacy Program to Improve Service Access Among Latino Families of Autistic Youth: A Randomized Controlled Trial.
Meghan M Burke, Saury Ramos-Torres, Gabriela Herrera Espinosa and 4 others
PMID 40542546WHAT IT FOUND
A 12-week Spanish-language advocacy course improved what Latino parents of autistic youth knew about adult services and how often they advocated; their children received about one more service by six months.
Unmet needs did not change, and only 30 of 48 parents were analysed.
Key findings
01Compared with the waiting-list group, parents who took ASISTIR knew more about adult disability services, reported more individual advocacy activities, greater advocacy skills and comfort, and greater community and political empowerment. There was no significant difference for family empowerment or for service-delivery-system empowerment.
02Six months after the programme began, parents in the programme group reported their youth were receiving on average one more service than the waiting-list group. The number of unmet service needs did not differ significantly between groups.
03Parents attended 67.5% of the 12 sessions on average, every parent who attended the first session attended the rest, and for each session more than 60% of respondents rated their satisfaction high.
STILL TO COME
How it was doneWhat they found
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What it does not show
Only 30 of the 48 randomised parents were included in the main analyses; 18 were lost to follow-up, and the authors state this left the study underpowered because their calculation called for 40 participants. The paper states that, because of the number of tests, a stricter cut-off of p < 0.01 was used for significance, but several of the improvements it calls significant are reported at p = 0.02 and p = 0.03, above that cut-off. All outcomes are parents' own reports of their knowledge, advocacy and their child's services, and parents knew which group they were in, so parents who took the programme may have answered more favourably. Families volunteered for an advocacy programme, and some may already have had help from the community agency before the study, so families with less time or fewer resources may not do as well. The service-access results rest on fewer parents again: 10 in the waiting-list group and 13 in the programme group.
Declared interests
The study was funded by the National Institute of Mental Health. The authors declare no conflicts of interest.
The easy way to misread this
Do not read the reported 0% attrition as meaning nobody dropped out. It counts only the parents who attended the first session and completed the programme, and the paper reports that 11 parents attended that first session out of the 24 randomised to the programme. Eighteen of the 48 randomised parents were lost to follow-up, and the main analyses included 30 of them.
Summarised by AI from the full paper, without a clinician reviewing it. Check it against the source before it changes what you do. Read it on PubMed →