How do adolescents with cerebral palsy participate? Learning from their personal experiences
| Autor: | Dirk-Wouter Smits, Marjolijn Ketelaar, Sophie Catharina Wintels, Floryt van Wesel, Johannes Verheijden |
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| Rok vydání: | 2018 |
| Předmět: |
Male
Adolescent media_common.quotation_subject medicine.medical_treatment Participatory action research Environment Grounded theory Developmental psychology Cerebral palsy Interviews as Topic 03 medical and health sciences 0302 clinical medicine 030225 pediatrics Health care medicine participation Humans Disabled Persons adolescents media_common patient involvement cerebral palsy Rehabilitation business.industry Environmental and Occupational Health Public Health Environmental and Occupational Health personal experiences Social Participation medicine.disease Checklist Original Research Paper Feeling Grounded Theory Female Public Health Personal experience Patient Participation business Psychology Original Research Papers 030217 neurology & neurosurgery |
| Zdroj: | Health Expectations : An International Journal of Public Participation in Health Care and Health Policy Health Expectations, 21(6), 1024. Wiley-Blackwell |
| ISSN: | 1369-6513 |
| DOI: | 10.1111/hex.12796 |
| Popis: | 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. |
| Databáze: | OpenAIRE |
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