Beyond stereotypes of cerebral palsy: Exploring the lived experiences of young Canadians.
ICF
adult
cerebral palsy
healthcare experience
identity
lifecourse
paediatrics
patient reviewer
patient-oriented research
patients
rehabilitation medicine
Journal
Child: care, health and development
ISSN: 1365-2214
Titre abrégé: Child Care Health Dev
Pays: England
ID NLM: 7602632
Informations de publication
Date de publication:
09 2019
09 2019
Historique:
received:
03
05
2019
accepted:
23
06
2019
pubmed:
13
7
2019
medline:
7
8
2020
entrez:
13
7
2019
Statut:
ppublish
Résumé
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. 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. 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. 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.
Sections du résumé
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.
Identifiants
pubmed: 31297831
doi: 10.1111/cch.12705
pmc: PMC6851573
doi:
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
613-622Informations de copyright
© 2019 The Authors. Child: Care, Health and Development Published by John Wiley & Sons Ltd.
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