Supporting Rural Families with Toddlers on the Autism Spectrum: Understanding Family and Child Characteristics in an Effort to Develop Accessible and Effective Intervention

Background:

Access to quality early intervention services for toddlers with ASD in rural communities is rare across the country. Family Implemented TEACCH for Toddlers (FITT) was developed as a structured teaching intervention adapted to be developmentally appropriate for toddlers with ASD, and more responsive to needs of rural families in the state of North Carolina. Better understanding of the status and needs of rural families, as well as how intervention translates to these families, will allow researchers and interventionists to more adeptly form community partnerships in rural communities.

Objectives:

(1) Compare the sample of rural and non-rural families through descriptive analysis of demographic data and pre-test scores on a sample of measures; and (2) Compare feasibility and acceptability of FITT for rural versus non-rural families through the analysis of the following data: therapist fidelity, parent adherence, and social validity.

Methods:

Study of the efficacy of FITT on child and family outcomes is ongoing in a three-year randomized control trial which will enroll 60 toddlers with autism and their caregivers who will be randomly assigned to receive FITT or services as usual (SAU). Treatment consists of 24 sessions, 20 90-minute home sessions and four group parent sessions. Complete data is currently available for 23 toddlers and caregivers with an additional 15 anticipated prior to May 2014. In this early analysis of rural and non-rural families, participants include 18 rural families and toddlers with ASD (FITT=13, SAU=5) and 21 non-rural families (FITT=15, SAU=6).

Demographic data related to family variables (e.g., race, maternal age, maternal education, income, household size) were collected at study enrollment, as well as baseline data related to family and child functioning (e.g. Parenting Stress Index, Mullen Scales of Early Learning, ADOS severity score). T-tests and Chi-squared will be used to examine differences in mean scores across the rural and non-rural sample. 

Treatment fidelity and parent adherence data were collected at in-home sessions. In addition, parents completed a social validity rating form upon completion of the full intervention. For the FITT group, T-tests will be used to compare mean scores on each measure across the rural and non-rural sample.  

Results:

Rural versus non-rural differences with regard to toddler participants, family characteristics, intervention fidelity, and parental engagement will be presented. Early analysis for the full sample indicate that the intervention is feasible, as treatment fidelity ratings of project interventionists was strong, with average fidelity ratings of 88.3% (range: 58 – 100%) and acceptable, with average parent adherence ratings of 80.8% (range 30-100%). Preliminary analyses indicate significant differences are found in maternal age and maternal education, but not child’s age or race, family income, Mullen derived developmental quotient, parental stress, or ADOS Comparison Score. Further analyses will be included.

Conclusions:

Through early analysis of the demographic and pre-test variables of the rural sample, as well as an examination of the feasibility and acceptability of FITT, we aim to better understand the rural context and how FITT may support both access to and participation in early intervention services in rural communities.