Promoting Participation Among Latino Children With Autism Spectrum Disorder: A Pilot Feasibility Study

PURPOSE: To (1) assess the feasibility and acceptability of a family-centered experimental intervention designed to promote participation in everyday activities among preschool-age Latino children with autism spectrum disorder (ASD) and (2) compare outcomes for families who received the intervention from an “occupational therapist (OT) only” with families who received the intervention codelivered by an “OT plus community health worker (CHW)”

BACKGROUND: Latino children are among fastest growing populations diagnosed with ASD. These children and their families face significant challenges in getting services and finding resources. Latino preschool children, especially from immigrant backgrounds, have decreased home and community participation compared with non-Latino children. Thus, preschool-age children with ASD from immigrant Latino families are at high risk of disparities, and there is a need for family-centered interventions for this group.

DESIGN: Mixed methods randomized trial with two intervention groups: OT only and OT plus CHW

PARTICIPANTS: We recruited 10 Latino families with children with ASD between ages 3 and 6 yr. At this time, pre- and postintervention data are available for 8 families. Children (3 girls and 5 boys) had sensory processing problems in multiple areas based on the Short Sensory Profile. Parents (all mothers) were on average 33.6 yr old (standard deviation = 4.2) and first-generation immigrants. All rated their spoken English as poor or fair.

METHOD: Assessments were done at baseline, immediately postintervention, and at 3-mo follow-up. Outcome measures included Family Outcome Survey (FOS), Social Communication Questionnaire (SCQ), and Preschool Activity Card Sort (PACS). Process measures included OT and CSW case notes. Focus groups were also conducted with parents and CHWs.

ANALYSIS: Process data were examined by two independent reviewers using a fidelity checklist. Quantitative data were analyzed by computing change scores on outcome measures from baseline to postintervention. Distribution of change scores for the two groups was graphically plotted and compared using nonparametric Mann–Whitney/Wilcoxon tests. Qualitative data were subject to thematic analysis by multiple independent reviewers using grounded theory analytic strategies proceeding from descriptive to conceptual coding.

RESULTS: Three Latina CHWs, themselves mothers of children with ASD, were trained in a 5-hr workshop by two bilingual pediatric OTs. Intervention delivery was found to be adherent to the protocol with >95% interrater agreement. The randomized study design was acceptable to families. Mean scores for all families increased from baseline to postintervention for PACS satisfaction scores (mean change = 3.2) and for SCQ scores (mean change = 3.3). Change scores in the two groups did not differ on the PACS or SCQ but did differ on the FOS. Mean score on the FOS did not improve for the OT-only group and improved by 2.6 points for the OT-plus-CHW group. Qualitative data suggested high satisfaction with the intervention and a tendency to derive emotional support from the provider, whether OT or CHW.

DISCUSSION: This study provides proof of concept for our experimental intervention. Preliminary data indicate the intervention is efficacious and that the involvement of CHWs is important to improve family outcomes. These findings need to be confirmed through a larger experimental trial.

IMPACT STATEMENT: With growing diversity in the United States, there is an urgent need for innovative delivery of OT interventions to reach growing yet underserved population subgroups. Lessons we learned from this study can help practitioners, and the OT field, to work with diverse, underserved groups.