Health Supervision for Children With 22q11.2 Deletion Syndrome: Clinical Report.

PURPOSE: Culturally responsive, strengths-based parent education and training programs for Indigenous families of autistic children are needed to help optimize their health; however, few exist. Parents Taking Action, an evidence-based, parent education and training program delivered by community health workers (i.e., family advisors), was adapted for Diné (Navajo) families of autistic children ages 2 to 12 years (Diné PTA). We conducted a pilot study to examine the feasibility, fidelity, acceptability, and initial outcomes of Diné PTA.

METHODS

Using mixed methods, program feasibility was assessed from participant enrollment and lessons completed; program fidelity was captured using a structured checklist; and initial family and child outcomes were measured with a verbally administered survey at baseline, mid-way through the program, and following program completion. The program's social validity and other aspects of its acceptability were assessed after program completion through the final survey, a virtual focus group with participants, and family advisor feedback. Paired t-tests with quantitative survey data and content analysis with qualitative data were performed.

RESULTS

Of the 13 Diné parents enrolled in the study, 10 completed all (n = 9) or some (n = 1) of the program. The program was delivered with high fidelity and had high acceptability for both participants and their family advisors. Participants demonstrated statistically significant improvements on the Family Outcomes Survey (e.g., understanding the child's strengths, needs, and abilities) between baseline and program completion.

CONCLUSION

Results suggest Diné PTA holds promise as a culturally responsive, strengths-based autism education and training program for Indigenous families.