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Development of a complex intervention to support parents of adolescents with chronic illness transferring from pediatrics to adult care (ParTNerSTEPs)

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Background: Transition from pediatric to adult care for adolescents with chronic illness is associated with outpatient non-attendance and low treatment adherence in adolescents, and with anxiety and concerns among parents. Recent studies have shown that parent involvement results in better transitions. The aim of this paper was to describe the development, through participatory design, of a comprehensive transfer program targeted to parents of adolescents with chronic illness. Methods: The study was based on the UK Medical Research Council’s (MRC) framework on developing and testing complex interventions. To increase the program’s feasibility and relevance, participatory design was chosen as the overall method. A collaboration group of parents, young people and health care professionals (HCP) were actively involved in the development of the program. The program was developed in three development stages, in accordance with the MRC framework: 1) identifying the evidence base, 2) identifying theory, and 3) modelling process and outcomes. Results: Together with the collaboration group, we developed a comprehensive transfer program targeting parents, by undertaking an iterative process, involving a literature review, individual interviews, workshops and online brainstorms. The program, called ParTNerSTEPs (Parents in Transition – a Nurse-led Support and Transfer Educational Program) comprised three components: 1) an informative website, 2) online educational events for parents, and 3) transfer consultations with providers from both pediatrics and adult care. Conclusions: The MRC framework was successfully applied to develop a comprehensive transfer program targeting parents of adolescents with chronic ilness. By incorporating the principles of participatory design in the development phase, we ensured that both parents’ and adolescents’ needs were represented and addressed in the program. Trial registration: ClinicalTrials.gov ID NCT04969328.

OriginalsprogEngelsk
Artikelnummer485
TidsskriftBMC Health Services Research
Vol/bind22
Udgave nummer1
ISSN1472-6963
DOI
StatusUdgivet - dec. 2022

Bibliografisk note

Funding Information:
This project is funded by the Novo Nordisk Foundation in the call “PhD Scholarships in Nursing Research 2019” (grant reference number is NNF19OC0058145) and Dagmar Marshalls Fond. Neither awarding body has had any role in the design of the study.

Funding Information:
We would like to give a special thanks to Cecilie Bruun, Mette Aas Jacobsen, Olivia Braad Honoré, Heidi Grabow, Christian Honoré, Nina Olsen, Susanne Thing Christensen, Christian Darabos, Marianne Hørby Jørgensen, Marianne Gudme Gammeltoft, Gitte Madsen, Birthe Jepsen and Sussani Reinholdt, who participated in the development of the intervention. We would also like to thank the cooperative outpatient clinics for their involvement in the development of the transfer consultations. The authors would like to acknowledge the advisory board members (Joan Carles Suris, Janet Mcdonagh, Grete Katrine Teilmann and Jens Jakob Herrche Petersen), psychologist Dorthe Meinike and nurse Pernille Hertz.

Publisher Copyright:
© 2022, The Author(s).

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