Chronic Illness clinical trials

Parents in Transition - a Nurse-led Support and Transfer Education Program

OBJECTIVE To improve chronically ill adolescents' transition to adult care by preparing and supporting the parents. The study aim is to improve parents' (of chronically ill adolescents, 16-18 years) transition readiness by offering them a brief transition program. HYPOTHESIS Young peoples´ self-management skills are mainly developed at home, guided by their parents, rather than in consultations with health professionals. The investigators hypothesize that a nurse-led transfer intervention focusing on parents' knowledge, skills and attitudes will: 1. improve the parents´ readiness for their child's transition to adult health care 2. support the parents' gradual handing over of treatment responsibility to the adolescent and, that an improvement in parental transition readiness will 3. strengthen the adolescent's self-management skills and increase his/her readiness for transition. BACKGROUND Transfer from paediatric to adult care for chronically ill adolescents is associated with no-shows and low treatment adherence, as well as anxiety and concerns among parents. Studies show that support for parents results in better transition for both parties. INTERVENTION ParTNer-STEPs is a transfer program consisting of three initiatives: 1. a website with information about the adult department and legal changes as well as advice from other parents and young people 2. online teaching events (web based seminars) for parents 3. transfer consultations across the paediatric and adult department METHOD The intervention will be evaluated in a randomized controlled trial (RCT) study over two years. The project will be carried out in four paediatric outpatient clinics at Rigshospitalet, Copenhagen University Hospital, Denmark: nephrology, hepatology, neurology and rheumatology. Based on a power calculation, the investigators aim to include parents of minimum 62 adolescents. Primary outcome: Parents' transition readiness (TR). Secondary outcomes: Adolescents' TR, self-management skills, and quality of life.