Report IF EU Workshop in Ghent

5 November 2019

On 25-26 October 2019, IF organised the second European Workshop of the year in Ghent, with the support of the Flemish Spina Bifida and Hydrocephalus Association (VSH). The main topics were the cognitive challenges of persons with spina bifida and/or hydrocephalus (SBH) in daily life and in education. 

IF opened the workshop with a presentation of its #TheFullPicture campaign for the 8th edition of the World Spina Bifida and Hydrocephalus Day (WSBHD) and IF’s 40th anniversary, showing the members photos and videos shared by the SBH community. Do not forget to check the WSBHD website for more updates!

On Friday 25 October, the session started with an overview of the last updates since the European Workshop in Belgrade. During the rest of the day, we had the opportunity to listen to 3 presentations on cognitive issues. 

The first presentation was conducted by Education and Training Manager Sean O’Doherty from our member organisation Spina Bifida Hydrocephalus Ireland. After some discussions and exchange of ideas, IF members agreed that the main issue is “to accept the disability, to face it and love yourself as you are and try to live with it in the best way possible”. Persons with disabilities are more than their disability. The second session on cognitive issues in daily life was presented by Occupational Therapist Marie Peny-Dahlstrand and Psychologist Barbro Lindquist. They discussed the results of their study on cognitive characteristics in children, youth, and adults, and the consequences for development, learning and process skills in daily life. They concluded by presenting methods to support person with SBH in everyday life such as Goal Management Training and the CO-OP approach.

The first day of the workshop ended with a testimony from Helena Corens, member of the VSH, on how she has been experiencing growing up with SBH, going to school, university, and how she dealt with challenges, such as multiple hospitalisations, bullying, and derogatory remarks. Receiving love and support from her family and having a few good friends helped her a lot. 

On Saturday 26 October, IF held its General Assembly, you can check the outcomes in this article. In the afternoon, we held a world café session where the members were divided into 4 groups to discuss and exchange ideas on the following topics: the work of the Working Group on Ageing, IF’s Multidisciplinary Care for SBH study, our Sexuality and Body awareness project and the Working Group Spina Bifida within the European Reference Network ITHACA.

IF would like to thank all the participants and speakers for their full engagement throughout the workshop’s sessions and meetings. It was a pleasure to work with you and we highly value that you took the time to join us!