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

Summary

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.

Conditions

• Chronic Illness

Interventions

OTHER

ParTNer-STEPs

The intervention is a transfer program (ParTNer-STEPs), offered to the parents 1½ - ½ year before their child´s transfer to adult care. ParTNer-STEPs consist of 1. an informative website available for parents from recruitment until follow-up. 2. online educational events for parents. The teaching events are offered twice a year as a web based seminar with short presentations on different topics. The seminars will not be available for parents after their child has transferred to adult care. 3. transfer consultations across the paediatric and adult department. The transition consultations consist of: * a preparatory consultation (3-6 months before transfer) with the paediatric nurse. * a farewell consultation with the paediatric nurse (0-3 months before transfer). * a joint consultation (at transfer) where both the pediatrician and the adult physician will be present. * a welcoming consultation with the nurse from the adult care (0-3 months after transfer).

Sponsors & Collaborators

• Rigshospitalet, Denmark

  collaborator OTHER

• Glostrup University Hospital, Copenhagen

  lead OTHER

Principal Investigators

• Bente A Esbensen, Professor · Center of Rheumatology and Spine Disorders, Copenhagen University Hospital, Rigshospitalet, Denmark

Study Design

Allocation

RANDOMIZED

Purpose

SUPPORTIVE_CARE

Masking

NONE

Model

PARALLEL

Eligibility

Min Age

198 Months

Max Age

210 Months

Sex

ALL

Healthy Volunteers

No

Timeline & Regulatory

Start

2021-07-01

Primary Completion

2024-12-31

Completion

2024-12-31

Countries

• Denmark

Study Locations