Date Presented 04/22/2023
Exploration of parental lived experiences of an adaptive water program for children with disabilities promotes OTs’ ability to facilitate inclusivity in community programming for caregivers and their children.
Primary Author and Speaker: Katie Jo Funk
Additional Authors and Speakers: Rylee Andresen, Madalyn Germann, Sarah Gielau, Paige Shanno, Isabelle Tyynismaa, Susan Hoey
BACKGROUD: Occupational therapists play an important role in lives of family and children with an emphasis on occupational engagement in play and leisure. Caregiver experience challenges with participation in rural communities.
PURPOSE: The purpose of this research study was to explore the perspective of caregivers of children with disabilities regarding adaptive programming within rural communities. This research also provided insight to the lived experience within their child’s participation in a local adaptive program for water safety that provides equipment, modifications, and techniques to accommodate and enable participation in play and leisure activities through engagement in the water. The program offers multiple sessions throughout the year in which trained college students including occupational therapy students provide intervention. Researchers sought to understand the perspectives and experience of caregivers of children with disabilities regarding resources within the Cedar Valley.
DESIGN: Through convenient randomized sampling five families were selected from the existing adaptive program through partnership with the organization. This descriptive phenomenological qualitative study utilized semi- structured interviews conducted with six caregivers representing five families who participated in adaptive water programming for one or more session, their child had received a formal diagnosis, their child was under the age of 18, and caregiver provided signed informed consent.
METHOD: The interview guide included ten open-ended questions. Interviews took place on zoom lasting 30-60 minutes. Interviews were recorded and transcribed for analysis. Phenomenological analysis and coding were completed to identify and establish themes.
RESULTS: Caregivers included in the study represented three of the six Cedar Valley counties. The caregiver’s children included diagnoses of attention-deficit/hyperactivity disorder, anxiety, autism spectrum disorder, epilepsy, hemiplegic cerebral palsy, spinal cord injury and receptive/expressive language disorder. The average number of adaptive inclusive water sessions participated in by families was 2.6 sessions. Five themes emerged related to caregivers’ desired characteristics and needs for adaptive programming. Findings included the need for community resources with inclusive benefits, the program’s ability to address multiple roles of caregivers, understanding of psychological effects of participating caregivers, importance of knowledgeable staff, and desired overall program characteristics. A sixth theme was identified specifically including caregiver perspectives on participation in PAWS a local, adaptive inclusive water program including sub themes of quality improvement and hope for what is to come regarding program expansion.
CONCLUSION: Findings from this study demonstrated the role for occupational therapy practitioners to facilitate change and growth within community programming for caregivers and children with disabilities. Findings indicated that caregivers desired characteristics within programs for themselves and their child(ren) to include inclusivity, support of caregivers’ multiple roles, an environment understanding of the caregiver’s psychological needs, safety within the environment, communication, strong program morals and knowledgeable staff.
IMPACT STATEMENT: Occupational therapists can collaborate and assist with development of programs as well as quality improvement for existing programs with implementation of caregivers’ shared insights. This study demonstrates the potential for future students within rural communities to address access and promote accessible programs for all individuals and aid in caregivers needs within programming.
References
Dattilo, J., Siperstein, G. N., McDowell, E. D., Schleien, S. J., Whitaker, E. B., Block, M. E., Spolidoro, M., Bari, J., & Hall, A. (2019). Perceptions of programming needs for inclusive leisure services. Journal of Park & Recreation Administration, 37(4), 70–91. https://doi-org.ezproxy.bethel.edu/10.18666/JPRA-2019-9514
Reynolds, S., Glennon, T. J., Ausderau, K., Bendixen, R. M., Kuhaneck, H. M., Pfeiffer, B., Watling, R., Wilkinson, K., & Bodison, S. C. (2017). The issue is—using a multifaceted approach to working with children who have differences in sensory processing and integration. American Journal of Occupational Therapy, 71, https://doi.org/10.5014/ajot.2017.019281
