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

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@article{23a2ad34aee14c0799c58884faeaa3d6,
title = "Parents to chronically ill adolescents have ambivalent views on confidential youth consultations - a mixed methods study",
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.",
author = "Thomsen, {Ena L} and Khoury, {Lina R} and Tom M{\o}ller and Boisen, {Kirsten A}",
year = "2019",
month = "4",
day = "26",
doi = "10.1515/ijamh-2018-0226",
language = "English",
journal = "International Journal of Adolescent Medicine and Health",
issn = "0334-0139",
publisher = "Walterde Gruyter GmbH & Co. KG",

}

RIS

TY - JOUR

T1 - Parents to chronically ill adolescents have ambivalent views on confidential youth consultations - a mixed methods study

AU - Thomsen, Ena L

AU - Khoury, Lina R

AU - Møller, Tom

AU - Boisen, Kirsten A

PY - 2019/4/26

Y1 - 2019/4/26

N2 - 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.

AB - 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.

U2 - 10.1515/ijamh-2018-0226

DO - 10.1515/ijamh-2018-0226

M3 - Journal article

JO - International Journal of Adolescent Medicine and Health

JF - International Journal of Adolescent Medicine and Health

SN - 0334-0139

ER -

ID: 57059257