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. 2019 Sep;45(5):613-622.
doi: 10.1111/cch.12705. Epub 2019 Jul 24.

Beyond stereotypes of cerebral palsy: Exploring the lived experiences of young Canadians

Julia E Hanes  1 , Oksana Hlyva  1 , Peter Rosenbaum  1 , Matthew Freeman  2 , Tram Nguyen  1 , Robert J Palisano  3 , Jan Willem Gorter  1
Affiliations

Beyond stereotypes of cerebral palsy: Exploring the lived experiences of young Canadians

Julia E Hanes et al. Child Care Health Dev. 2019 Sep.

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 (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.

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, 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.

Keywords: ICF; adult; cerebral palsy; healthcare experience; identity; lifecourse; paediatrics; patient reviewer; patient-oriented research; patients; rehabilitation medicine.

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