Barriers and facilitators to accessibility, continuity, validity, flexibility, and provider-family relationship along the diagnostic pathway in developmental disabilities.

Researchers interviewed 77 parents in Montreal whose children were recently diagnosed with developmental disabilities like autism. They looked at what made getting a diagnosis easier or harder. Parents talked about problems and helpful things in five areas: getting access to services, having consistent care, getting accurate information, having flexible options, and having good relationships with providers. Parents also mentioned their own personal strengths that helped them through the process.

This study examined the diagnostic journey experiences of 77 parents whose children were recently diagnosed with developmental disabilities (including autism and intellectual disability) in Montréal, Canada. Using qualitative content analysis, researchers explored barriers and facilitators across five dimensions of the ETAP (Evaluation of the Trajectory Autism for Parents) model: accessibility, continuity, validity, flexibility, and provider-family relationship. Results showed that parent-identified systemic barriers and facilitators aligned with the ETAP framework dimensions. Additionally, parents identified personal facilitators beyond systemic factors.

The study supports the ETAP framework's relevance for understanding family diagnostic experiences and its potential for organizing research and program evaluation.

The ETAP framework may be valuable for service providers and organizations to evaluate and improve diagnostic services. Understanding both systemic and personal factors can help providers better support families through the diagnostic process and identify areas for service improvement.

Sample limited to one metropolitan area (Montréal). Abstract does not specify methodological details, sample characteristics, or provide specific examples of barriers and facilitators identified. Study type and detailed methodology unclear from available information.

Parents of children with developmental disabilities must navigate a complex network to obtain a diagnosis and interventions for their child. However, their subjective experience of this journey has yet to be analyzed through the lens of a theorical framework that could support research, organizational program evaluation, and facilitate providers' reflection on how to enhance families' diagnostic services trajectory. This study sought to examine the diagnostic journey as experienced by 77 parents whose children were recently diagnosed with developmental disabilities (e.g., autism, intellectual disability) in the metropolitan area of Montréal, Québec (Canada). A mixed qualitative content analysis approach was used to describe their perspective on barriers and facilitators in reference to the five dimensions of the Evaluation of the Trajectory Autism for Parents (ETAP) model (Rivard et al., 2020): accessibility, continuity, validity, flexibility, and provider-family relationship.

The barriers and facilitators related to systemic factors identified by parents were consistent with the five dimensions outlined by the ETAP model. However, beyond these characteristics of the service delivery system, parents additionally identified their own, personal facilitators CONCLUSIONS AND IMPLICATIONS: This study supports the relevance of the ETAP framework to understanding the experience of families seeking a diagnosis. It also reinforces the potential contributions of this model to organize extant and future research as well as structure program evaluation and improvements.