A New Tool to Assess Family Context Features That Promote the Early Development of Young Children at-Risk for ASD
Objectives: To adapt the Etxadi-Gangoiti Scale for use with families of young children with ASD and assess comprehension, clarity, and familiarity at the community level, as well as feasibility in an EIP.
Methods: We adapted the scale considering early ASD developmental features and in-home EIP delivery. Four experts in early development and ASD analyzed the scale content. We conducted two community focus groups: (1) 6 EIP providers (psychology, education, and nursery disciplines) serving urban and rural areas, and low-medium resource children with ASD. (2) 5 parents of children with ASD (4 mothers, 1 father; 3 African American, 2 Hispanic) living in urban areas. Forty percent reported living in somewhat unsafe neighborhoods. Both groups scored each item for the level of comprehension, clarity, and familiarity using a 6-point Likert scale (1=Very hard to understand, 6=Very easy to understand). Items receiving a score of 4 (somewhat easy to understand) or lower were discussed and edited as a group to obtain consensus. Lastly, edited items were scored a second time using the same metric. Providers scored the feasibility of the scale in an EIP.
Results: The adapted scale includes 62-items in two subscales: a) caregiver self-report (47 items); b) observational assessment for EIP providers (15 items). The scale measures family features associated with promoting early development, summarized by 8 indicators (see items’ distribution across indicators and subscales in Figure 1): 1) Home and physical environment; 2) Presence of toys to promote development; 3) Family routines, structure and habits; 4) Parent behaviors promoting socio-emotional, communication, play, and cognitive development; 5) Exposure to peers; 6) Family and social support 7) Level of family stress; 8) Caregiver’s knowledge and exposure to disability. Parents’ rated 14 items (30%) with a score of 4 or lower. After editing, they scored 5 or higher for all items. The Provider group edited 8 items (53%) based on initial scores, and after discussion, all items reached the highest comprehension score of 6. Regarding the tool’s feasibility in EIPs, 83% of providers scored “strongly agree.”
Conclusions: Existing home and family assessment scales are not appropriate for young children with ASD feasible for in-home EIPs. This scale may help us understand how to individualize ASD treatment and parent coaching strategies for unique family features and environments.