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儿童银屑病对青少年过渡期儿童和家长的影响:诠释现象学分析。

Impact of childhood psoriasis on children and parents during transition to adolescence: An interpretative phenomenological analysis.

机构信息

Department of Psychology, The University of Sheffield, Sheffield, UK.

School of Health Sciences, University of Canterbury, Christchurch, New Zealand.

出版信息

Br J Health Psychol. 2025 Feb;30(1):e12763. doi: 10.1111/bjhp.12763. Epub 2024 Oct 29.

Abstract

OBJECTIVES

Psoriasis is a chronic skin condition that can develop at any age. Childhood psoriasis can lead to stigmatization and reduced quality of life in children and parents. This study aimed to gather a detailed family-level understanding of the experience of childhood psoriasis during the time of transition to adolescence.

DESIGN

A multi-perspectival interpretative phenomenological analysis (IPA) was used.

METHODS

Sixteen semi-structured interviews with eight parent-child dyads were conducted and analysed in accordance with IPA principles.

RESULTS

Three superordinate themes and three sub-themes were identified: 1. 'Transition and transaction' including: 1.1 'Shifting responsibilities and self-efficacy'; 2. 'Stigma and social impact'; and 3. 'The treatment journey' including: 3.1 'Finding an effective treatment', 3.2 'Coping with on-going management'. Uncertainties surrounding treatment options were an initial focus of difficulty for families. In adolescence, the difficulty shifted to be more identity focussed as the responsibility for disease management and the increased awareness on body image posed added challenges. Both parents and children described visibility and stigma as the most distressing aspects of living with psoriasis and experienced negative emotions that resurfaced during adolescence.

CONCLUSIONS

This study suggests that childhood psoriasis can have a significant impact on children, particularly as they begin to transition to adolescence. Findings also highlight the burden of psoriasis for parents. As such, psychological interventions (such as adapted forms of mindfulness-based Cognitive-Behavioural-Therapy) are needed to target and reduce stress. Such interventions are likely to require a systemic focus and support validation of the real impact and fear of stigmatization.

摘要

目的

银屑病是一种可在任何年龄发病的慢性皮肤病。儿童银屑病可导致患儿及其家长遭受污名化并降低生活质量。本研究旨在详细了解儿童银屑病在向青春期过渡期间的家庭体验。

设计

采用多视角阐释现象学分析(IPA)方法。

方法

对 8 对父母-子女进行了 16 次半结构化访谈,并根据 IPA 原则进行分析。

结果

确定了 3 个上位主题和 3 个下位主题:1. “过渡与转变”,包括:1.1“责任转移和自我效能感”;2. “污名化和社会影响”;3. “治疗历程”,包括:3.1“寻找有效治疗”,3.2“应对持续管理”。家庭最初关注的是治疗方案的不确定性。进入青春期后,困难的焦点转移到了身份认同上,因为疾病管理的责任以及对身体形象的日益认识增加了挑战。父母和子女都描述了可见性和污名化是银屑病患者最痛苦的方面,经历了在青春期再次浮现的负面情绪。

结论

本研究表明,儿童银屑病可能对儿童产生重大影响,尤其是当他们开始向青春期过渡时。研究结果还强调了银屑病对父母的负担。因此,需要进行心理干预(如适应形式的正念认知行为疗法),以减轻压力。此类干预措施可能需要系统关注,并支持验证污名化的真实影响和恐惧。

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