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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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Parents to chronically ill adolescents have ambivalent views on confidential youth consultations – a mixed methods study

Ena L. Thomsen
  • Center of Adolescent Medicine, Department of Pediatrics and Adolescent Medicine, Copenhagen University Hospital, Rigshospitalet, Copenhagen, Denmark
  • Other articles by this author:
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/ Lina R. Khoury
  • Department of Dermatology and Allergy, Herlev and Gentofte Hospital, University of Copenhagen, Copenhagen, Denmark
  • Other articles by this author:
  • De Gruyter OnlineGoogle Scholar
/ Tom Møller
  • University Hospitals Centre for Health Research (UCSF), Copenhagen University Hospital, Rigshospitalet, Copenhagen, Denmark
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  • De Gruyter OnlineGoogle Scholar
/ Kirsten A. Boisen
  • Corresponding author
  • Center of Adolescent Medicine, Department of Pediatrics and Adolescent Medicine, Copenhagen University Hospital, Rigshospitalet, Blegdamsvej 9, 2100 Copenhagen, Denmark
  • Email
  • Other articles by this author:
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Published Online: 2019-04-26 | DOI: https://doi.org/10.1515/ijamh-2018-0226

Abstract

Background

Confidential youth consultations aiming at enhancing adolescent autonomy are a cornerstone of transitional care. At the same time, parental support is essential. These conflicting considerations result in a clinical dilemma.

Objective

The aim of this study was to examine the attitudes of parents to chronically ill adolescents regarding confidential youth consultations and to explore the underlying reasons.

Methods

A sequential explanatory mixed methods design consisting of a cross-sectional questionnaire survey (n = 117) and three focus group interviews among parents (n = 12) to chronically ill adolescents (12–19 years) was used. Quantitative data were analyzed descriptively. Qualitative data were analyzed using King’s template method.

Results

The parents preferred independent youth consultations starting around the age of 14–15 years. Around 60% of the parents had one or more concerns regarding independent youth consultations. Although 64% of the parents supported conditional or full confidentiality during adolescence, 95% wanted information even though their child did not consent. In the qualitative analysis, the parents described caring for a child with chronic disease as a term of life perceiving themselves as an “octopus” with numerous roles related to daily care and treatment and at the same time with thoughts and worries regarding the future. We found four themes: ‘a life with chronic disease’, ‘responsibility’, ‘protection’ and ‘apprenticeship’. The parents’ attitudes were influenced by their roles and their perception of the adolescent’s competences as well as their experience with the healthcare system.

Conclusions

Our findings suggest that parents need transitional care too.

Keywords: adolescent; adolescent health service; chronic disease; confidentiality; parents

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About the article

Received: 2018-10-01

Accepted: 2018-12-20

Published Online: 2019-04-26


Citation Information: International Journal of Adolescent Medicine and Health, 20180226, ISSN (Online) 2191-0278, DOI: https://doi.org/10.1515/ijamh-2018-0226.

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