SUNDAY 6 OCTOBER 2019
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The Netherlands shine a light on life as an teenager with CP

BOSK Association of people with a physical disability undertook a research project exploring the life experiences of adolescents with cerebral palsy (CP). This information has been used to build a knowledge bank and to inform participation strategies in healthcare, sports and schooling.

 

For this project, BOSK has been awarded a World Cerebral Palsy Day 2018 Merit Award.

The teenage years are a formidable time of development for most; but how can anyone really understand the everyday life challenges of being an adolescent with CP?

In 2015, in collaboration with The Centre of Excellence for Rehabilitation Medicine Utrecht, BOSK Association of people with a physical disability set out to answer this question by initiating a unique research project designed to better understand the participation experiences of adolescents with CP.

The specific goals of the project were to have adolescents with CP:

  • Contribute experiential expertise by sharing their experiences of school, sports and healthcare
  • Contribute to the development of models for participation
  • Formulate realistic recommendations for solutions and products that can promote participation, especially in schools and sports, and optimise developmental oriented care.

It was also intended that the recommendations of adolescents with CP would be used to inform the development of tools and guides for adolescents, schools, sports associations, rehabilitation services and caregivers.

The project was funded through the ‘Care and Perspective’ program of Fonds NutsOhra.

Engaging the experts

To get participants for the project, the research team accessed an existing pool of research subjects.

In the year 2000, a research project was conducted by the PERRIN (PEdiatric Rehabilitation Research in the Netherlands) consortium, involving 400 children and adolescents with CP, aged 0-25 years.

To gather information for the participation project, BOSK engaged the 200 youngest original participants of the PERRIN research, now aged 12-17 years.

From this group of teenagers with CP, 12 ambassadors were selected to help engage, represent and be decision makers on behalf of the whole cohort. The researchers found working with the ambassadors added a new dimension to the project.

“What we did notice was that the speed and the direction of the project as well as the outcome of the products had a different dynamic and was surprising due/thanks to the strong cooperation with the ambassadors,” explains Johannes Verheijden, from the BOSK research team.

Awesome outcomes

While some outcomes from the project were static and defined by scientific standards, such as the journal articles, others were more creative and allowed the team to explore concepts of participation truly from the adolescents’ point of view.

The majority of the research was qualitative, undertaken in the form of interviews using standardised questionnaires. It was the results of these interviews with adolescents with CP that lead to an experiential knowledge bank and informed the bulk of the outcomes.

Key outcomes from the project include:

  • a website about being an adolescent with CP (www.wijencp.nl) which was initiated and designed by the ambassadors who continue to develop and maintain it
  • two infographics printed on 250 posters distributed to a variety of schools and colleges, as well as on social media:
    • one with tips for schools on how to support a student with CP
    • one for adolescents with CP on how to find employment
  • 2 published scientific articles showcasing the study’s findings
  • a presentation by the ambassadors and research team on patient and parent participation in research during the conference of the European Academy of Childhood Disability (EACD)
  • a presentation at the EACD conference by the main researcher
  • a number of official interviews involving researchers, ambassadors and medical experts
  • a thesis from a sports science student
  • a chapter in a book about adolescent participation in sport
  • a wrist band with the slogan #IkhebCP (#IhaveCP) to act as a conversation starter
  • 4 YouTube videos featuring the ambassadors talking about CP, school and sport which will be marketed using an external public relations agency.

Of course, one of the most important outcomes from the project was the conclusion culminating from the research – a dynamic experienced-based participation model for adolescents with CP.

From the adolescents’ experiences, 4 key categories were identified.

1 concerned participation, expressed as “My participation experiences,” including experiences, thoughts and feelings while participating in daily life.

3 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. (1)

An invaluable contribution

The ambassadors clearly played a key role in this project, being actively involved through all stages. Their feedback also indicates they viewed the process as highly beneficial, for them as individuals, as well as for all adolescents with CP.

“It has a clear added value to any project when you involve experiential experts.”

“I have learned a lot during this project. Not only have I met peers, but I have the distinct impression that our contribution was valuable.”

“It became just as much our project and I am very proud of the products we have created.”

While this project has come to an end, it will be interesting to see the ongoing implications of the research findings and the impact it has on future participation strategies for adolescents with CP.

REFERENCE

  1. Wintels SC, Smits D-W, van Wesel F, Verheijden J, Ketelaar M, on behalf of the PERRIN PiP Study Group. How do adolescents with cerebral palsy participate? Learning from their personal experiences. Health Expect. 2018;00:1–11. https://doi.org/10.1111/hex.12796