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OP0173-PARE Youth-r-coach, a program for youth with a chronic disease
  1. L van Nieuwkoop1,2,
  2. L. van Geene1,
  3. R. Janssen1
  1. 1Stichting Chronisch Ziek en Werk, Eindhoven
  2. 2Stichting, Lisse, Netherlands


Background Youth-R-Coach is a project for youth (aged 15–25) with a chronic illness. It is a project set up by the Centre for Chronically Ill and Work (CCZW) in cooperation with, the Dutch organisation for youth with RMDs. Youth-R-Coach is based on CCZW’s program for the certification of ‘experience expertise’.

Objectives Youth-R-Coach focusses on the development of experts-by-experience, and making those experiences available for others to learn from. A distinctive element is the creative aspect: the development of writing talent.

Methods The participants reflect individually on personal experiences with their disease, as well as their personal competencies. This process is supported by a portfolio of assignments and a mentor who also has an RMD. The participants also incorporate their personal experience with the disease in a self-written book with support of a writing coach. Even though the process is an individual one, the program starts with a group of participants. There is a kick-off meeting, a weekend training and a final group meeting. In this way, the participants get to know each other and learn from each other’s personal experiences with the disease. They stay in contact during the program and help each other with the portfolio and writing of their book. During the meetings, workshops are provided to teach them new skills, such as ‘online coaching’ and ‘presenting’.

Results Youth-R-Coach worked with a group of 7 participants who followed the program in 2016, and a group of 7 participants who started in 2017. Both groups are currently busy finalising their portfolios and books, which will be ready in May 2018.

The books are intended to make personal experiences in dealing with an RMD available for peers, for whom the books can be a source of support in dealing with the disease. The books are also interesting for a wider audience, because they provide insights into living with a chronic illness as a young person. The books are all very different. Some wrote short columns, while others wrote an entire novel. What all the books have in common is that they are all based on personal experiences of living with a chronic illness.

Developing expertise-by-experience and writing about their experiences has helped the participants to better cope with their disease, and has made them ambassadors. Some of them have been, or are still, involved in activities for patient organisations since the start of the program. For example, some have volunteered as a mentor for an RMD youth holiday camp, or given presentations based on personal experience with an RMD. Some participants will continue coaching their peers after finishing the program, and some continue writing about their personal experiences in a blog. How participants will continue to use their new-found skills is down to personal interests and competencies, but whatever they do, the program has given them useful tools for coping with and teaching others about the disease.

Conclusions Fourteen participants (aged 18–27) developed their expertise-by-experience in dealing with an RMD and are now able to act as a coach for their peers. Their experiences in dealing with the disease will be published in self-written books and made available to a wide audience. All of the current participants had an RMD, but the project would also be useful for youths who have other chronic illnesses.

Acknowledgements Youth-R-Coach was made possible with the financial support of the FNO Foundation.

Disclosure of Interest None declared

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