Caring for young people with moderate to severe psoriasis: An interpretive description of parental perspectives

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Caring for young people with moderate to severe psoriasis : An interpretive description of parental perspectives. / Rasmussen, Gitte Susanne; Kragballe, Knud; Maindal, Helle Terkildsen; Lomborg, Kirsten.

I: Journal of Dermatological Treatment, Bind 31, Nr. 3, 2020, s. 227-234.

Publikation: Bidrag til tidsskrift/Konferencebidrag i tidsskrift /Bidrag til avisTidsskriftartikelForskningpeer review

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@article{749f3c47688741a681bf2bc7cb288baa,
title = "Caring for young people with moderate to severe psoriasis: An interpretive description of parental perspectives",
abstract = "INTRODUCTION: Psoriasis often sets on during childhood or adolescence, when parents have great importance for the young people's self-management, well-being and quality of life. The aim of the study was to understand parents' perspectives on young people's daily life with psoriasis in order to improve adolescents' self-management.METHOD: Adopting Interpretive Description methodology, focus group discussion and interviews were conducted with eight parents of adolescents with psoriasis. The analysis was inductive with an iterative comparative approach. Main themes conveying participants' perceptions were identified for constructing a coherent narrative of parents' perspectives on their young people's transition with psoriasis through adolescence.RESULTS: Parents initially perceived psoriasis mainly a physical and treatment-related burden and not until late realized its socio-emotional impact. They eventually found themselves balancing between declining treatment due to fear of side effects and acknowledging the impact on their young people's quality of life and their desire for effective treatment.CONCLUSION: Caring for young people with psoriasis is a stressful process involving experimental learning to understand and manage the complexity of psoriasis and its impact on adolescents' emotional and social life. Future research should consider integration of shared decision-making and self-management support interventions in routine daily care as focus points.",
keywords = "Psoriasis, parents, qualitative, self-management, young people",
author = "Rasmussen, {Gitte Susanne} and Knud Kragballe and Maindal, {Helle Terkildsen} and Kirsten Lomborg",
year = "2020",
doi = "10.1080/09546634.2019.1590523",
language = "English",
volume = "31",
pages = "227--234",
journal = "Journal of Dermatological Treatment",
issn = "0954-6634",
publisher = "Taylor & Francis ",
number = "3",

}

RIS

TY - JOUR

T1 - Caring for young people with moderate to severe psoriasis

T2 - An interpretive description of parental perspectives

AU - Rasmussen, Gitte Susanne

AU - Kragballe, Knud

AU - Maindal, Helle Terkildsen

AU - Lomborg, Kirsten

PY - 2020

Y1 - 2020

N2 - INTRODUCTION: Psoriasis often sets on during childhood or adolescence, when parents have great importance for the young people's self-management, well-being and quality of life. The aim of the study was to understand parents' perspectives on young people's daily life with psoriasis in order to improve adolescents' self-management.METHOD: Adopting Interpretive Description methodology, focus group discussion and interviews were conducted with eight parents of adolescents with psoriasis. The analysis was inductive with an iterative comparative approach. Main themes conveying participants' perceptions were identified for constructing a coherent narrative of parents' perspectives on their young people's transition with psoriasis through adolescence.RESULTS: Parents initially perceived psoriasis mainly a physical and treatment-related burden and not until late realized its socio-emotional impact. They eventually found themselves balancing between declining treatment due to fear of side effects and acknowledging the impact on their young people's quality of life and their desire for effective treatment.CONCLUSION: Caring for young people with psoriasis is a stressful process involving experimental learning to understand and manage the complexity of psoriasis and its impact on adolescents' emotional and social life. Future research should consider integration of shared decision-making and self-management support interventions in routine daily care as focus points.

AB - INTRODUCTION: Psoriasis often sets on during childhood or adolescence, when parents have great importance for the young people's self-management, well-being and quality of life. The aim of the study was to understand parents' perspectives on young people's daily life with psoriasis in order to improve adolescents' self-management.METHOD: Adopting Interpretive Description methodology, focus group discussion and interviews were conducted with eight parents of adolescents with psoriasis. The analysis was inductive with an iterative comparative approach. Main themes conveying participants' perceptions were identified for constructing a coherent narrative of parents' perspectives on their young people's transition with psoriasis through adolescence.RESULTS: Parents initially perceived psoriasis mainly a physical and treatment-related burden and not until late realized its socio-emotional impact. They eventually found themselves balancing between declining treatment due to fear of side effects and acknowledging the impact on their young people's quality of life and their desire for effective treatment.CONCLUSION: Caring for young people with psoriasis is a stressful process involving experimental learning to understand and manage the complexity of psoriasis and its impact on adolescents' emotional and social life. Future research should consider integration of shared decision-making and self-management support interventions in routine daily care as focus points.

KW - Psoriasis

KW - parents

KW - qualitative

KW - self-management

KW - young people

U2 - 10.1080/09546634.2019.1590523

DO - 10.1080/09546634.2019.1590523

M3 - Journal article

C2 - 30835580

VL - 31

SP - 227

EP - 234

JO - Journal of Dermatological Treatment

JF - Journal of Dermatological Treatment

SN - 0954-6634

IS - 3

ER -