COCCOS study: Developing a transition program for adolescents with chronic conditions using Experience-Based Co-Design. A study protocol

Natwarin Janssens; Lisa Van Wilder; Ann Van Hecke; Kim Van Hoorenbeeck; Karsten Vanden Wyngaert; Delphine De Smedt; Eva Goossens

doi:10.1371/journal.pone.0298571

COCCOS study: Developing a transition program for adolescents with chronic conditions using Experience-Based Co-Design. A study protocol

PLoS One. 2024 Apr 5;19(4):e0298571. doi: 10.1371/journal.pone.0298571. eCollection 2024.

Authors

Natwarin Janssens^{1

2}, Lisa Van Wilder², Ann Van Hecke^{2

3}, Kim Van Hoorenbeeck^{4

5}, Karsten Vanden Wyngaert³, Delphine De Smedt², Eva Goossens^{1

6

7}

Affiliations

¹ Department of Nursing and Midwifery, University of Antwerp, Antwerp, Belgium.
² Department of Public Health and Primary Care, Ghent University, Ghent, Belgium.
³ Ghent University Hospital, Ghent, Belgium.
⁴ Department of Pediatrics, Antwerp University Hospital, Antwerp, Belgium.
⁵ Laboratory of Experimental Medicine and Pediatrics, University of Antwerp, Antwerp, Belgium.
⁶ Department of Public Health and Primary Care, KU Leuven, Leuven, Belgium.
⁷ Department of Patient Care, Antwerp University Hospital, Antwerp, Belgium.

Abstract

Background: During adolescence, adolescents and young adults (AYAs) are expected to transfer their care from the pediatric environment towards an adult-focused setting. To prevent an abrupt transfer of care, it is recommended to provide AYAs with chronic conditions an adequate transition program. The aim of this paper is to describe the study protocol for the development of a transition program for AYAs with common chronic conditions (COCCOS study), using the Experience-Based Co-Design (EBCD) methodology.

Methods and analysis: A qualitative, participatory study is conducted in Flanders (Belgium). Study participants are AYAs (n≥15, 14-25 years old, diagnosed with type 1 diabetes, asthma, or obesity), their families, and healthcare providers (n≥15). The study is composed of eight EBCD stages: clinical site observations, in-depth interviews, trigger film, healthcare providers' feedback event, AYAs' feedback event, joint event, co-design workshops, and a celebration event. Photovoice will take place as a starting point of EBCD. Data will be analyzed using thematic analysis.

Results: Data collection has started in January 2023 and is expected to be completed in May 2024. As of August 2023, over 15 clinical site observations have been conducted. A total of 18 AYAs, two parents, six healthcare providers have been enrolled and a total of 20 interviews have been conducted.

Conclusion: Advancing transitional care is essential for tackling negative health outcomes. Applying the innovative participatory EBCD methodology will reveal key elements of transitional care for AYAs with common chronic conditions in the development of a person-centered transition program.

Practice implications: Study findings will apply key elements of transitional care of AYAs with chronic conditions in the development of an adequate transition program.

Copyright: © 2024 Janssens et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

MeSH terms

Adolescent
Adult
Child
Chronic Disease
Data Collection
Diabetes Mellitus, Type 1*
Health Personnel
Humans
Qualitative Research
Young Adult

Grants and funding

The acquired funding was done by Profs Eva Goossens and Delphine De Smedt. This work was supported by the Research Foundation – Flanders [grant number G066622N, 2021]. The funders did not and will not have a role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.