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照顾中重度银屑病青少年:对家长观点的诠释性描述

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

作者信息

Rasmussen Gitte Susanne, Kragballe Knud, Maindal Helle Terkildsen, Lomborg Kirsten

机构信息

Department of Dermatology, Aarhus University Hospital, Aarhus, Denmark.

Department of Public Health, Aarhus University, Aarhus, Denmark.

出版信息

J Dermatolog Treat. 2020 May;31(3):227-234. doi: 10.1080/09546634.2019.1590523. Epub 2019 Mar 22.

Abstract

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 this study was to understand parents' perspectives on young people's daily life with psoriasis in order to improve adolescents' self-management. Adopting interpretive, description methodology (ID), 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. 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. 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.

摘要

银屑病常始于儿童期或青春期,此时父母对年轻人的自我管理、幸福和生活质量至关重要。本研究的目的是了解父母对青少年银屑病患者日常生活的看法,以改善青少年的自我管理。采用诠释性描述方法(ID),对八名青少年银屑病患者的父母进行了焦点小组讨论和访谈。分析采用归纳法和迭代比较法。确定了传达参与者看法的主要主题,以构建一个连贯的叙述,阐述父母对其子女在青春期患银屑病的转变的看法。父母最初主要将银屑病视为身体和治疗相关的负担,直到后来才意识到其社会情感影响。他们最终发现自己在因担心副作用而减少治疗与承认对子女生活质量的影响以及对有效治疗的渴望之间难以平衡。照顾患有银屑病的青少年是一个压力重重的过程,需要通过反复学习来理解和应对银屑病的复杂性及其对青少年情感和社交生活的影响。未来的研究应考虑将共同决策和自我管理支持干预措施纳入日常常规护理中作为重点。

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