Abstract
BackgroundHealth 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.MethodsAn 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 (seven female), aged 17–29, Gross Motor Function Classification System (GMFCS) levels I–V, participated in three focus groups that were conceptualized and analysed using interpretive description methodology.ResultsThis 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.DiscussionBody 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, well‐being, 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.
Highlights
Health—formally defined by Huber et al as “the ability to adapt and self‐manage”—is a multidimensional concept integrating physical, emotional, social, and environmental aspects of people's lives (Huber et al, 2011; Kim & Fox, 2006; World Health Organization, 2002)
The only exclusion criteria for this qualitative study were non‐ English speakers, as the focus groups (FGs) were conducted in English, and the inability to participate in an FG and to answer open‐ended questions, as this was considered a serious impediment to participation
Four main themes emerged from the FGs: (1) health, (2) meaningful participation, (3) impact of the environment, and (4) identity for young people with cerebral palsy (CP)
Summary
Health—formally defined by Huber et al as “the ability to adapt and self‐manage”—is a multidimensional concept integrating physical, emotional, social, and environmental aspects of people's lives (Huber et al, 2011; Kim & Fox, 2006; World Health Organization, 2002). A systematic review by Lindsay (2016) described the qualitative literature available on the health implications of young adults (under age 25) with CP (Lindsay, 2016) It identified a need for further research to understand the health outcomes of young people with CP in terms of employment, (intimate) relationships, and identity formation (Lindsay, 2016). 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. This study confirms the need for improved care for adults with CP, including multidisciplinary adult health team(s) and community services
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