Abstract
Background
Health for people with cerebral palsy (CP) must extend beyond physical impairments to include social, environmental and psychological factors that are rarely captured by quantitative research alone. This qualitative study sought to explore the lived experience of young people with CP with their physical, mental and emotional health in the context of a larger longitudinal Canadian study focusing on brain function, physical and mental health, and well‐being.
Methods
An integrated research team (including people with CP or other impairments, clinicians and researchers) was formed to study participant‐identified research needs. A purposive sample of 16 people with CP (7 female), aged 17‐29, GMFCS levels I‐V participated in three focus groups that were conceptualized and analyzed using interpretive description methodology.
Results
This study reports the experiences of people with CP across GMFCS levels and identifies some consequences of growing up with the condition: physical and mental health issues, importance of meaningful participation, impact of the environment and identity formation. Participants shared challenges related to accessibility, healthcare, social/environmental supports, relationships, and sustainable employment.
Discussion
Body structure and function challenges impact participation in activities of daily living, threatening participants’ ability to form positive identities and live meaningful lives. People with CP desire to work, but may require additional training, accommodation and support to do so. Environmental conditions, including relationships, supportive people and accessibility shape participants’ health, wellbeing, and social/civic engagement. This study confirms the need for improved care for adults with CP, including multidisciplinary adult health team(s) and community services.