Research Study Announcement (18+ Only)

Study on Sexual Wellbeing in Individuals with Spina Bifida

Trigger warning – The content may cause distress or upset for anyone who may have experienced infertility, baby loss, rape or sexual assault.

We’re sharing a research project exploring aspects of sexuality and lived experience of people living with spina bifida. The research is led by consultants and master's students at the University of Antwerp. This is a legitimate study which aims to create more personalised sexual education and counselling for people with spina bifida.

Sexual health in individuals with spina bifida remains under researched and under discussed. Sex and intimacy can be a meaningful part of adult life.

Content Warning: This material may be upsetting or triggering for some people. If you feel that reading about sexuality or explicit language could cause distress, please do not open or engage with this content.

• Participation is strictly for adults aged 18 and over
• Taking part is anonymous
• You can stop or withdraw at any time

Thank you for taking a moment to consider whether this research is right for you.

Questionnaire

The questionnaire is likely to take around 45 minutes, but you can save it and come back.

You can skip questions as needed.

The study offers follow up support to members - if you have any questions after this interview, or if you feel uncomfortable, you can contact the research team via email: studyspinabifida@gmail.com. The research team (Lena Ceulemans, Julie De Wachter, or Laure-Anne Durt) is always available to answer questions and, if needed, can refer you to professional support.

Professional support services

If you would like to talk to a professional, you may consider the following options:

• Your General Practitioner (GP): your first point of contact for medical or psychological concerns.
• You can self-refer to NHS talking therapies here - Talking therapies - NHS
• Samaritans: available 24/7, free and confidential. You can call 116 123 or visit www.samaritans.org.
• NHS Mental Health Helpline (England): you can call 111 (option 2) for urgent mental health support.
• HAVOCA: run by survivors for adult survivors of child abuse, visit www.havoca.org
• NAPAC: supporting recovery from childhood abuse, visit napac.org.uk.

If you have any questions you can contact the research team on studyspinabifida@gmail.com or Shine at health@shinecharity.org.uk

Timeframe for completing: 27th February 2026

If you would like to take part, you can access the questionnaire here:

Questionnaire