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International Journal of Adolescent Medicine and Health

Editor-in-Chief: Merrick, Joav

Editorial Board: Birch, Diana ML / Blum, Robert W. / Greydanus, MD, Dr. HC (Athens), Donald E. / Hardoff, Daniel / Kerr, Mike / Levy, Howard B / Morad, Mohammed / Omar, Hatim A. / de Paul, Joaquin / Rydelius, Per-Anders / Shek, Daniel T.L. / Sher, Leo / Silber, Tomas J. / Towns, Susan / Urkin, Jacob / Verhofstadt-Deneve, Leni / Zeltzer, Lonnie / Tenenbaum, Ariel


CiteScore 2018: 0.79

SCImago Journal Rank (SJR) 2018: 0.350
Source Normalized Impact per Paper (SNIP) 2018: 0.476

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2191-0278
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Traversing the liminal: what can Fontan adults’ transition experiences and perspectives teach us about optimizing healthcare?

Karin du PlessisORCID iD: http://orcid.org/0000-0003-0574-7878 / Rebecca Peters
  • Murdoch Children’s Research Institute, Melbourne, Victoria, Australia
  • Transition Support Service, The Royal Children’s Hospital, Melbourne, Victoria, Australia
  • Other articles by this author:
  • De Gruyter OnlineGoogle Scholar
/ Evelyn Culnane / Yves d’Udekem
  • Corresponding author
  • Murdoch Children’s Research Institute, Melbourne, Victoria, Australia
  • Department of Paediatrics, Faculty of Medicine, The University of Melbourne, Melbourne, Victoria, Australia
  • Department of Cardiac Surgery, The Royal Children’s Hospital Melbourne, 3 West Clinical Offices, 50 Flemington Road, Parkville, Victoria, 3052, Australia, Phone: +613 93455200
  • Email
  • Other articles by this author:
  • De Gruyter OnlineGoogle Scholar
Published Online: 2018-09-26 | DOI: https://doi.org/10.1515/ijamh-2018-0020

Abstract

Background

Successfully transitioning to adult care is important for congenital heart disease (CHD) patients, particularly those at the worst end of the spectrum with a Fontan circulation, as their ongoing health engagement affects their health outcomes. Yet, there is a lack of literature exploring patient perspectives about their transition experiences, and what helps or hinders successful transition to adult care.

Methods

Young adults with a Fontan circulation (n = 18) from the Australian and New Zealand Fontan Registry participated in in-depth phone interviews. Thematic analyses were used to analyze the qualitative interview data.

Results

We identified six key themes which stood out from patient experiences, including differences between pediatric and adult congenital cardiac care, the need for preparation through formal transition programs, and the important role of support systems.

Conclusion

To become active managers of their healthcare and remain engaged with the healthcare system, young people would benefit from coordinated efforts between pediatric and adult care to formally prepare them for transition to adult care. This should include involvement from their support network and ongoing education about their health condition. The study highlights the importance of studying patient perspectives through qualitative research to better inform health service provision in the CHD space.

Keywords: adult congenital heart disease; qualitative research; transition

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About the article

aAuthors takes responsibility for all aspects of the reliability and freedom from bias of the data presented and their discussed interpretation.


Received: 2018-01-19

Accepted: 2018-04-13

Published Online: 2018-09-26


Funding Source: National Health and Medical Research Council

Award identifier / Grant number: 1076849

Funding Source: National Health and Medical Research Council

Award identifier / Grant number: 1082186

This work was supported by a National Health and Medical Research Council (NHMRC), Funder Id: 10.13039/501100000925, Partnership grant (1076849). Prof. Yves d’Udekem is a Clinician Practitioner Fellow of the NHMRC, Funder Id: 10.13039/501100000925 (1082186). Murdoch Children’s Research Institute is supported by the Victorian Government’s Operational Infrastructure Support Program.


Disclosures: Prof Yves d’Udekem is a consultant for the companies MSD and Actelion. The remaining authors report no relationships that could be construed as a conflict of interest.


Citation Information: International Journal of Adolescent Medicine and Health, 20180020, ISSN (Online) 2191-0278, DOI: https://doi.org/10.1515/ijamh-2018-0020.

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