Date Presented 4/19/2018
This qualitative study examined parent perspectives about a program for families of children with sensory needs at a local museum. The study’s reiterative nature used an action research approach to promote ongoing program improvement and the value of occupational therapy in emerging practice.
Primary Author and Speaker: Andrea Tyszka
Additional Authors and Speakers: Fern Silverman
PURPOSE: Facilitating participation in natural settings is a defining aspect of occupational therapy. Families of children with autism and sensory processing issues face challenges that affect their participation in the community (Bagby et al., 2012). Given the established links between participation and well-being (Law, 2002), it is imperative to find ways to increase community participation for these families. This study aimed to develop and analyze sensory-friendly community-based programming at a local museum geared to the needs of these families and then determine its value.
METHOD: A qualitative research design with a descriptive framework was used. The use of an action research approach allowed the museum staff the opportunity to make ongoing programmatic improvements after each cohort of data collection. Using convenience sampling, 46 participants were recruited from six separate cohorts of parents at bimonthly Sensory Friendly Sunday (SFS) events held at the museum over a 1.5-yr period. SFS events are designed to support the inclusion of families with children with special needs by providing exclusive hours and sensory adaptations. Each participant attended an SFS event with a child or young adult aged 2–26 yr who had a sensory, behavioral, or cognitive disability. Participants were recruited by faculty researchers during the SFS event. Informed written consent was obtained.
All participants were contacted for a 30-min semistructured in-depth phone interview within 2 wk of their museum visit. During the interview, they answered a series of open-ended questions designed to elicit feedback regarding their SFS museum experience. Interviews were conducted by pairs of faculty and graduate student researchers trained in research methods, with one member of each team conducting the interview and the other transcribing. Open and axial coding were used to identify themes that emerged from the interview data. Faculty researchers coded data independently and compared their analyses to enhance trustworthiness of results. A brief survey with demographic data was also completed over the phone. Data were augmented with field notes and reflective memos kept by the researchers.
RESULTS: The primary theme identified was that participation in the SFS event led to an enhanced sense of well-being as evidenced by positive statements regarding the perceived success of their visit (Silverman & Tyszka, 2017). Subthemes that emerged were the value of pragmatic considerations (i.e., awareness and preparedness, financial access, and human help) and the value of adjusting the sensory environment.
The study exemplifies action research because data from each cohort were analyzed and shared with museum staff shortly after each event to allow staff to make changes to better meet the families’ needs. Parents voiced the need for adjustments to specific program features, such as better signage for the cool-down room and an expanded role for volunteers, and these changes were then operationalized.
CONCLUSION: As evidence-based practitioners, occupational therapy practitioners know the value of community participation and the challenges it poses for families of children with disabilities. By helping to develop this program, assess it, and provide this information to museum staff, we were able to enhance the well-being and successful participation of families, support the institution, and contribute to future theory and program development.
IMPACT STATEMENT: Community-based programs for groups or populations with disabilities coupled with evidence on program effectiveness can promote occupational justice, inclusion, and the role of occupational therapy in emerging practice settings.
References
Bagby, M. S., Dickie, V. A., & Baranek, G. T. (2012). How sensory experiences of children with and without autism affect family occupations. American Journal of Occupational Therapy, 66, 78–86. https://doi.org/10.5014/ajot.2012.000604
Law, M. (2002). Participation in the occupations of everyday life (Distinguished Scholar Lecture). American Journal of Occupational Therapy, 56, 640–649. https://doi.org/10.5014/ajot.56.6.640
Silverman, F., & Tyszka, A. C. (2017). Centennial Topics—Supporting participation for children with sensory processing needs and their families: Community-based action research. American Journal of Occupational Therapy, 71, 7104100010. https://doi.org/10.5014/ajot.2017.025544
