Assessing the quality of care and service trajectories in autism from families' perspective: Early intervention and interim services.

Researchers created a questionnaire called ETAP-2 to help understand how families feel about autism services after their child's diagnosis. They tested it with 197 parents and found it works well to measure service quality. The tool can help service providers understand what families think about early intervention and other supports, which could lead to better services for children with autism.

This study developed and validated ETAP-2, a parent-report instrument to assess quality of post-diagnostic autism services including early intervention and interim supports. Researchers recruited 197 parents of recently diagnosed children (average age 5.1 years) from Quebec, Canada. The instrument demonstrated a five-construct structure with excellent internal consistency and good convergent and discriminant validity when compared to satisfaction and family quality of life measures. ETAP-2 provides a brief, psychometrically sound tool for evaluating families' experiences with post-diagnostic services, offering valuable insights into service quality from the parent perspective.

ETAP-2 can be used by service providers and researchers to systematically evaluate post-diagnostic autism services from families' perspectives. This could inform quality improvement initiatives and help identify gaps in service delivery, particularly for early intervention and interim support services.

Study conducted in single province (Quebec) which may limit generalizability. Three items related to service trajectory continuity did not align with expected construct structure. No information provided about response rates or potential selection bias in recruitment.

Following the Evaluation of the Autism Trajectory for Parents - Diagnostic Services (ETAP-1), the ETAP-2 instrument was created to assess the quality of the post-diagnostic phase of the care and service trajectory of families of children with autism. The instrument, based on an integrated care perspective, was developed with the input of multiple stakeholders (parents, service providers, researchers). This study sought to evaluate the factor structure, reliability, and convergent and discriminant validity of ETAP-2. Parents (N = 197) of children recently diagnosed with autism (M = 5.1 years) were recruited from an assessment center and organizations providing early behavioral intervention and other supports for autism in the province of Québec, Canada.

They completed the ETAP-2 questionnaire along with measures of satisfaction and family quality of life. The instrument presented a five-construct structure generally consistent with previously identified dimensions of quality, except for three items previously associated with the continuity of the service trajectory. ETAP-2 had excellent internal consistency and demonstrated convergent and discriminant validity with other measures. ETAP-2 is a brief parent-report measure with good psychometric properties.

It can assist in gathering information on families' perception and experiences with early intervention and other post-diagnostic, interim services.