Continence Advice by Teleheath (Skype) for Young People with Spina Bifida

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.

Lessons Learned:

1. Our experience demonstrates that a nurse-led telehealth service to support young people with complex needs is an effective way to extend and enhance the quality and outcomes of nursing services.
2. Using technology and accessing a dedicated service from their own home were the main factors that enticed young people to take part in the project. However, adolescence is a challenging period when young people may find it hard to talk to health professionals and share issues concerning their body image and continence challenges.\

Read more about this study here.