Interviews
Self-reported effects of participants were: increased self-confidence, more disease-related knowledge, feeling capable of being more responsible and open towards others, and daring to stand up for yourself. According to participants, being a buddy or having one positively affected them. Self-efficacy of attendees and independence of buddies increased, while attendees' sense of social inclusion decreased (measured as domains of health-related quality of life). The buddy role was a pro-active combination of being supervisor, advisor, and leader.
Conclusions
Camp COOL allowed young people to support each other in adjusting to everyday life with ESRD. Participating in the camp positively influenced self-management in this group. Peer-to-peer support through buddies was much appreciated and support from young adults turned out to not only beneficial for adolescent attendees, but also for young adult buddies. Paediatric nephrologists are encouraged to refer patients to CC and to facilitate such initiatives. Together with nephrologists in adult care, they could take on a role in selecting buddies.
During this camp week, adolescents with an end-stage renal disease learn skills to deal independently with their condition, learning both from each other and together. The camp also aims to support adolescents in developing independence during the transition period from childhood to adulthood, both within and outside of healthcare.
Recommendations
- Employ a longitudinal study design with questionnaire research during Camp COOL 2012 (and future camps).
- Explicitly address the transition from children's care to adult care during Camp COOL. For example, use Q-care profiles for this purpose.
- Also direct activities during Camp COOL towards the adolescents' future and the possibilities they have concerning work and school.
- Establish clear criteria for selecting buddies.
- Take practical steps to organize Camp COOL for young people with other chronic diseases.
The main ingredient of an effective Camp COOL is the unique buddy-participant concept!
Poster
The researchers developed a poster about the project, which provides a quick view of the background, methods, results and conclusions. See the poster.