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

Autor: Jan Willem Gorter, Tram Nguyen, Robert J. Palisano, Oksana Hlyva, Peter Rosenbaum, Julia E. Hanes, Matthew Freeman
Jazyk: angličtina
Rok vydání: 2019
Předmět:
Adult
Male
Canada
Activities of daily living
Adolescent
Psychometrics
Context (language use)
patients
Developmental psychology
paediatrics
03 medical and health sciences
Young Adult
0302 clinical medicine
healthcare experience
030225 pediatrics
Health care
Activities of Daily Living
Developmental and Educational Psychology
Civic engagement
Humans
0501 psychology and cognitive sciences
Interpersonal Relations
Research Articles
identity
Qualitative Research
patient‐oriented research
Family Health
cerebral palsy
business.industry
05 social sciences
Public Health
Environmental and Occupational Health
ICF
rehabilitation medicine
Gross Motor Function Classification System
Focus Groups
Focus group
Mental health
patient reviewer
Mental Health
Pediatrics
Perinatology and Child Health
Quality of Life
lifecourse
Female
business
Psychology
050104 developmental & child psychology
Qualitative research
Research Article
Zdroj: Child
ISSN: 1365-2214
0305-1862
Popis: 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.
Databáze: OpenAIRE
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