Stakeholder Collaboration to Develop an Evaluation Tool to Assess the Accessibility of Cultural Institutions for Families With Children With Autism

PURPOSE: Engagement in public institutions can be challenging for children with autism spectrum disorder (ASD) due to core characteristics of ASD and sensory processing challenges. Families with children with ASD are three times less likely to participate in children’s museums and report significant barriers to participation. Child-specific barriers also increase barriers for their families to engage in public spaces and have positive social outings. To address inequities of public engagement for children with ASD, families and institutions are beginning to collaborate to increase access and meaningful participation for children with sensory differences. Using principles of universal design, public institutions can begin to evaluate and adapt their environments to facilitate participation and address barriers for everyone, including children with ASD and their families. The purpose of this research project was to use a collaborative stakeholder approach to develop evaluation tools to assess accessibility and inclusion of families with children with ASD in cultural institutions.

DESIGN: This study utilized a qualitative program evaluation design to develop and refine evaluation tools.

METHOD: The Person-Environment-Occupation-Participation model was used as a framework to identify potential barriers to participation in an institutional context and to develop evaluation priorities. A diverse team of research, community, and museum stakeholders conducted interviews, reviewed exhibits and visitor resources, and observed structured and unstructured programming. Initial evaluation tools were drafted based on evidence from the literature, diverse stakeholder input, and clinical perspectives from occupational therapists. The museum then conducted a self-program evaluation utilizing the tools in evolving forms. Tools were tested for usability and evaluated through narrative feedback in stakeholder focus groups and interviews. Data from the program evaluation was used to refine tool purpose and usability.

RESULTS: Six unique self-assessment tools (Public Institution Questionnaire, Staff Survey, Semi-structured Staff Interview, User-Friendly Website Review Form, Observation of Child Engagement Form, and Event Feedback Form ) and associated resources were developed for cultural institutions. The tools focus on institutional self-assessment to guide potential programmatic, marketing, and environmental modifications to improve access and inclusion for children with ASD.

CONCLUSION: The development of the Evaluation Toolkit to Increase Accessibility and Inclusion for Children with Autism Spectrum Disorders and Sensory Processing Challenges in Cultural Institutions is the first step to support meaningful engagement in cultural institutions. The toolkit will allow institutions to assess their unique strengths and areas of need when supporting families with children with ASD. Institutions can assess program development, staff training, and environmental modifications to specifically meet the need of their community and institutional goals. Implemented changes may not only increase attendance for families of children with ASD and/or sensory challenges, but also other disabilities and diverse family needs.

IMPACT STATEMENT: Occupational therapy practitioners can serve as important stakeholders in cultural institutions to facilitate institutional self-evaluation and guide changes to support meaningful engagement for families and children with ASD.

References

Antonetti, A., & Fletcher, T. (2016). Parent Perceptions of Museum Participation: A Comparison Between Parents of Children With and Without Autism Spectrum Disorders. Inclusion, 4(2), 109-119. https://doi.org/10.1352/2326-6988-4.2.109

Deng, L. (2017). Equity of Access to Cultural Heritage: Museum Experience as a Facilitator of Learning and Socialization in Children with Autism. Curator: The Museum Journal. https://doi.org/10.1111/cura.12219

Silverman, F., & Tyszka, A. C. (2017). Supporting participation for children with sensory processing needs and their families: Community-based action research. The American Journal of Occupational Therapy, 71(4), 7104100010. https://doi.org/10.5014/ajot.2017.025544

Rappolt-Schlichtmann, G., & Daley, S. (2013). Providing access to engagement in learning: The potential of universal design for learning in museum design. Curator: The Museum Journal, 56(3), 307-321. https://doi.org/10.1111/cura.12030