Date Presented 03/26/20
The purpose of this study was to explore caregivers’ experiences and current practices while transporting children with ASD. Statistically significant findings suggest a correlation between caregivers limiting travel distance or participation in activities when transporting a child with ASD who displays behavioral safety concerns. This suggests that caregivers of children with ASD are more likely to experience decreased occupational participation.
Primary Author and Speaker: Missy Bryan
Additional Authors and Speakers: Katherine Dullaghan, Abigail Harris, Michaela Isenberg, Jacqueline Marquez, Autumn Triggs
Contributing Authors: Teresa Plummer, Lacy Roling
PURPOSE: Approximately 1.7% of children have been identified with autism spectrum disorder (ASD) (Center for Disease Control (CDC), 2018). There is a dearth of literature exploring how caregivers of children with ASD perceive their personal, child, and/or other passenger safety during vehicular transportation. The purpose of this study was to explore caregivers’ experiences and current practice while transporting children with ASD.
DESIGN: A concurrent nested mixed method design was utilized to gain insight into prevalence and caregiver experiences (Corcoran, 2017, p. 495). A convenience sample was obtained from multiple online platforms. Informed consent was collected from all caregivers prior to survey participation. A Qualtrics survey (online) was used to gather qualitative and quantitative data based on common themes identified from the literature including decreased child passenger safety (CPS) knowledge, decreased access and awareness of CPS literature and child safety, motor vehicle accidents, and proper car seats, caregiver anxiety, and ASD-specific behaviors. Data was collected from 12/2018 - 2/2019. Forty-one respondents fully completed the survey. Respondents who identified their relationship included: 41 mothers, 6 fathers, 2 siblings, and 6 caregivers.
METHODS: The qualitative and quantitative survey questions were composed by both a formative committee and a summative committee that included CPS technicians with knowledge of transportation of children with healthcare needs. The survey responses were compiled and entered into one digital format, data was individually coded and examined through thematic analysis by comparing similar questions across surveys. Qualitative data was analyzed and coded until saturation was reached and common themes emerged. Researchers used a binary method of identification of the problem and thematic exploration of the meaning of the response. Cross-tabular summaries of the reports of behaviors (aggression, elopement, distracting sensory behaviors, and self-injurious behaviors) and limiting distance travel to and/or participation in activities outside of the home were generated. Cramer’s V and Chi-Square statistics were used to assess the strength and direction of the associations of the behaviors with limitations participation. An alpha of .05 (p=.05) was used to determine statistical significance.
RESULTS: Themes that arose included behaviors displayed by children with ASD during transportation, education related to CPS, and participation in daily and community activities. Multiple respondents indicated that their child displayed distracting sensory modulation behaviors, they limit the distance they travel with their child, and that they have not received information regarding car seats. Statistically significant findings suggest a correlation between caregivers (n=39) being less likely to participate in activities away from home (yes or sometimes) if the child had attempted to elope (p=.013), displayed aggressive behaviors (p=.005), or expressed self- injurious behaviors (p=.001).
CONCLUSIONS: The findings suggest a correlation between caregivers limiting the distance traveled during vehicular transportation and/or participation in activities when transporting a child with ASD who displays behavioral safety concerns. This indicates that caregivers of children with ASD are more likely to experience decreased occupational participation. The authors assert that future research should explore what occupational therapy programs are implementing in education and the competency level of current clinicians. Without this, best practice interventions cannot be consistently implemented to promote safety and occupational well-being of caregivers and their children with ASD.
References
Center for Disease Control and Prevention (CDC). (2018). Data & statistics. Retrieved from https://www.cdc.gov/ncbddd/autism/data.html
Corcoran, M.A. (2017). Using mixed-methods designs to study therapy and its outcomes. In R. Taylor (Ed.) Kielhofner’s research in occupational therapy: Methods for inquiry for enhancing practice (2nd ed.), pp. 488-497. Philadelphia: F.A. Davis.
Falkmer, T., Anund, A., Sorensen, G., & Falkmer, M. (2004). The transport mobility situation for children with autism spectrum disorders. Scandinavian Journal of Occupational Therapy, 11, pp. 90–100. doi: http://dx.doi.org/10.1080/11038120410020575
O’Neil, J., Yonkman, J., Talty, J., & Bull, M. (2009). Transporting children with special healthcare needs: Comparing recommendations and practice. Pediatrics, 124(2): 596-603. doi:10.1542/peds.2008-1124
