ParTNer-STEPs: Parents in Transition – a Nurseled Support and Transfer Education Program

​Development, test and evaluation of a transfer program targeting parents to chronically ill adolescents

A research project by Nurse, Cand.scient.san., PhD-student Ena Lindhart Thomsen

 The project’s aim is to improve chronically ill adolescents’ transition to adult care by preparing and supporting the parents through educational events, online support and joint consultations. The project consists of three sub-studies: 1) Development of the intervention via co-creation, 2) Effect evaluation - RCT study and 3) Process evaluation.

OBJECTIVE: To improve chronically ill adolescents’ transition to adult care by preparing and supporting the parents. The purpose of this PhD project is to develop, test and evaluate a nurse-led transfer intervention targeting parents of chronically ill adolescents (16-18 years) to improve transition readiness.

BACKGROUND: Transition from pediatric 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 transitions for both parties. 

METHOD: The study consists of three sub-studies based on guidelines for complex interventions: 1) Development of the intervention through active user involvement, 2) Effect evaluation – a randomized controlled trial (RCT) and 3) Process evaluation.

The intervention (including educational events for parents, a website and joint consultations with the pediatric and adult team) will be tested and evaluated in three pediatric outpatient clinics at Rigshospitalet: nephrology, hepatology and rheumatology. Primary outcome: Parents’ transition readiness (TR). Secondary outcomes: Adolescents’ TR, self-management skills, and quality of life. 

We hypothesize that the intervention will prepare and support parents in the process of gradually delegating self-care responsibility to the adolescent, which will improve the adolescent’s self-management skills and increase parents´ and adolescent’s transition readiness.

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