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The Capital Region of Denmark - a part of Copenhagen University Hospital
E-pub ahead of print

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

Research output: Contribution to journalJournal articleResearchpeer-review

DOI

  1. Is HEADS in our heads? Health risk behavior is not routinely discussed with young people with chronic conditions

    Research output: Contribution to journalJournal articleResearchpeer-review

  2. Feasibility of a transition intervention aimed at adolescents with chronic illness

    Research output: Contribution to journalJournal articleResearchpeer-review

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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.

Original languageEnglish
JournalInternational Journal of Adolescent Medicine and Health
ISSN0334-0139
DOIs
Publication statusE-pub ahead of print - 26 Apr 2019

ID: 57059257