Affiliation:
1. The Renal Patient Support Group (RPSG), UK
Abstract
Most young people coping with Chronic Kidney Disease (CKD) know that over time this disease can affect their physical health, lifestyle and psychological wellbeing. Transition services and experiences differ; some young people also have better coping strategies than others. This article explores 1) whether there is a need for a transition reorganization to maintain best practice for young people with CKD and 2) what would make more effective coping and transition research for the future. Three coordinated meetings took place inviting young people to contribute their insights on transition and coping questions. 1) Twelve (12) young people from the Renal Patient Support Group (RPSG) online invited (mean age = 15 years), 2) Nine (9) young people attended a Medicines for Children Research Network (MCRN) Young Person's Advisory Group (YPAG) at the Birmingham Children's Hospital, UK (mean age = 14 years) and 3) Nine (9) from the MCRN YPAG meeting at Great Ormond Street Hospital, London UK (mean age = 15 years). Young people's contribution can be summarized: 1) The ‘rounded experiences' before, during and after transition of young people with CKD are still required, 2) It is important to see if there is an association between positive coping and smoother transition, 3) Need to appreciate care needs to be better integrated for young people ahead of their transition to achieve best practice and 4) Supporting young people with CKD to build aptitudes is important so they become independent and cope with their health. An overall transition guideline and reorganization that factors in coping strategies should be prompted in future research for teams supporting the care for young people to maintain best practice.