EACD Mini-Symposium papers Amsterdam

Steps into the Future

Going down a bumpy road together – drafting a roadmap to enhance cooperation between parents, health care professionals and researchers.

Objectives

BOSK, Association of People with Physical Disabilities Netherlands, and ICPS International Cerebral Palsy Society acknowledge that most stakeholders who work with children with disabilities value partnership and co-production. However, many of them struggle to make this work in practice.

We wish to draw together a diverse audience of people with disabilities, parents and professionals to consider two subjects, chosen by the BOSK parents, which they find of great concern and affect their daily lives. Processes that enable stakeholders to improve the impact of their work through cooperation, exchanging experiences, ideas, and sharing solutions together will be discussed.

Session 1:

Involving people with disabilities and parents as meaningful partners in research. This session will discuss collaborating in identifying research questions, writing protocols, being actively involved in “translating” research evidence into plain language and implementing the practical results.

Parent involvement in research Why? How? - Karen van Meeteren

Experiential Knowledge: What does it Tell? Some reflections on Consumers’ Involvement in Research and Practice
-Sander Hilberink, PhD & Mieke Cardol, PhD


Smoothing out (some of) the bumpy road -Julia & Jane

Session 2: Encouraging and facilitating people with cerebral palsy to take part in sports.

Sport improves the well-being of all those who take. Whether you do sport for fun or are a top-class paralympian, you rely on your supporting team where each member contributes their own expertise to achieve optimal results. This session focuses on these different roles, including aptitude, nutrition, training, attitude and sleep.

- Mark Homan

No conflict of interest - Olaf Verschuren
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