Many people with spina bifida experience incontinence, both bowel and bladder; in our experience, this is the aspect of the condition that distresses young people most. It has a significant impact on their quality of life and affects how they interact with others at school and when socialising. Lack of facilities and the need for assistance in the toilet can prevent them from participating in social activities such as sleepovers or trips away with schools and clubs.
Young people’s continence problems also affect their parents and other family members; very often, social activities and outings must be arranged around the need to ensure someone is available to assist the young person with continence care.
Reviewing the evidence on the use of telehealth to support young people, we set out to address many of the challenges raised by young people themselves, regarding sensitive and intimate healthcare provision at a distance, as elicited by Garrett et al (2011). We offered a small group of service users and their families an opportunity to explore whether remote access to a nurse specialist would help them to overcome some of the challenges they face. The objective was to have weekly telehealth sessions with each young person, from home, with a goal of enabling them to be sufficiently independent to attend a residential summer camp away from home.