Nancy Bagatell, Ph.D., OTR/L., Dara Chan, Sc.D., CRC., Kimberly Karrat Rauch, D.O., Deborah Thorpe, Ph.D., PT.
Disability and Health Journal, January 2017,
The transition to adulthood, the gradual change in roles and responsibilities, is identified as a challenging time for adolescents and young adults with physical disabilities, including those with cerebral palsy. Health care, education, employment, independent living, and community engagement have been identified as areas of concern. However, relatively little research has been done to understand the experiences, perceptions, and needs of individuals with cerebral palsy as they transition toward adulthood.
The objective of this study was to explore the transition experiences, perceptions, and needs of young adults with cerebral palsy living in one state in the southeastern United States.
Focus groups with nine young adults with cerebral palsy (19–34 years) were conducted. The focus group interview explored the preparation for transition and experiences navigating adulthood. The audio-recorded groups were transcribed and analyzed using thematic analysis.
Young adults with cerebral palsy identified numerous challenges associated with navigating adulthood. The main themes were: 1) being thrust into adulthood; 2) navigating systems and services; 3) understanding and managing my body; and 4) dealing with stereotypes and prejudice.
The findings highlight the need for a holistic approach to transition with a focus on building capacity and empowerment. To navigate complex systems of care, “navigators” or “facilitators” are needed. Additionally, practitioners and service providers in adult systems need further education about cerebral palsy.