TY - JOUR
T1 - How do adolescents with cerebral palsy participate? Learning from their personal experiences
AU - Wintels, Sophie Catharina
AU - Smits, Dirk Wouter
AU - van Wesel, Floryt
AU - Verheijden, Johannes
AU - Ketelaar, Marjolijn
AU - van der Leest, Anna
AU - de Groot, Coosje
AU - Snel, Dion
AU - van de Water, Jesse
AU - Sluiter, Lauren
AU - de Bruijn, Nando
AU - Janssen, Nathan
AU - Makkreel, Nienke Heijne
AU - Kramer, Nikita
AU - Bouma, Piotr
AU - Vergeer, Sam
AU - den Boer, Thom
AU - Voorman, J. M.
AU - Dallmeijer, A. J.
AU - Roebroeck, M. E.
AU - Reinders-Messelink, H. A.
AU - Gorter, J. W.
PY - 2018/12/1
Y1 - 2018/12/1
N2 - 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.
AB - 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.
KW - adolescents
KW - cerebral palsy
KW - participation
KW - patient involvement
KW - personal experiences
UR - http://www.scopus.com/inward/record.url?scp=85057129807&partnerID=8YFLogxK
U2 - 10.1111/hex.12796
DO - 10.1111/hex.12796
M3 - Article
C2 - 29858544
AN - SCOPUS:85057129807
SN - 1369-6513
VL - 21
SP - 1024
EP - 1034
JO - Health Expectations
JF - Health Expectations
IS - 6
ER -