Open AccessHow do adolescents with cerebral palsy participate? Learning from their personal experiences
Author(s) -
Wintels Sophie Catharina,
Smits DirkWouter,
Wesel Floryt,
Verheijden Johannes,
Ketelaar Marjolijn
Publication year - 2018
Publication title -
health expectations
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.314
H-Index - 74
eISSN - 1369-7625
pISSN - 1369-6513
DOI - 10.1111/hex.12796
Subject(s) - feeling , cerebral palsy , psychology , checklist , citizen journalism , qualitative research , grounded theory , participatory action research , international classification of functioning, disability and health , rehabilitation , developmental psychology , medical education , social psychology , medicine , social science , psychiatry , sociology , world wide web , computer science , economics , cognitive psychology , economic growth , neuroscience
Background Participation in society can be difficult for adolescents with cerebral palsy (CP). Information is often based on quantitative studies, and little is known about their personal participation experiences. Objective The aim of this study was to examine the participation experiences of adolescents (aged 12‐17 years) with CP. Methods A qualitative participatory research method was used. Twenty‐three semi‐structured open interviews were conducted with 13 male and 10 female adolescents (mean age 15 years) with CP. An interview checklist was developed jointly with adolescents with CP. This checklist ensured that the adolescents reflected on various participation areas, that is school, sports, health care and work. The analysis was based on principles of grounded theory. Findings From the adolescents’ experiences, 4 key categories were identified. One concerned participation, as such, expressed as “My participation experiences,” including experiences, thoughts and feelings while participating in daily life. Three other categories concerned factors that influence participation experiences, expressed as “My disability,” “Me as a person” and “My environment.” These 4 categories together formed a model showing the interactions and dynamics of participation according to adolescents with CP. Conclusion Adolescents with CP expressed their participation experiences, including various important influencing factors. This study conceptualized these experiences into a dynamic model. This experience‐based participation model may provide new, personalized perspectives for practice, for instance in rehabilitation, but also for schools and sports (or sports clubs) attended by adolescents. Focusing on personal and environmental factors might be the key to successful participation.