Primary Care and Population Sciences and Medical Education, Faculty of Medicine, University of Southampton, UK.
Centre for Clinical and Community Applications of Health Psychology, Faculty of Environmental and Life Sciences, University of Southampton, UK.
Br J Health Psychol. 2021 Feb;26(1):214-231. doi: 10.1111/bjhp.12467. Epub 2020 Aug 26.
This study aimed to explore adolescents and young adults' experiences of symptoms related to their eczema in order to determine their psychosocial needs.
A secondary qualitative analysis of two data sources collected through semi-structured interviews for two different projects, SKINS project and Eczema Care Online project.
In total, there were 28 transcripts with adolescents and young adults with eczema having a mean age of 19.5 years available to analyse. Interview data were collected from face-to-face interviews that were recorded and transcribed. Inductive thematic analysis explored data about symptoms and organized according to psychosocial needs.
Adolescents and young adults with eczema experience both visible symptoms (such as flaky, dry, and inflamed skin) and invisible symptoms (such as itch, pain, exhaustion, and mental distress) that elicit different psychosocial needs. These psychosocial needs are to (i) be understood; (ii) be perceived as normal; and (iii) receive emotional support. Interviewees described a struggle between wanting their peers and family to understand but take their eczema seriously whilst not wanting to stand out and instead to be perceived as 'normal', which they would define as being perceived as other adolescents. This has implications on behaviours, such as seeking support, avoiding going out, hiding their skin, as well as emotional implications, such as social isolation and feeling anxious and low.
Having a better understanding of young people's experiences and psychosocial needs will provide a framework on how best to support adolescents and young adults when managing symptoms related to eczema. Statement of contribution What is already known on this subject? Eczema has a high impact on children and is considered a burden by children and adults with eczema. However, it is unclear what impact eczema has on adolescents and young adults. Adolescents and young adults with chronic conditions are known to be vulnerable to negative psychosocial outcomes but psychosocial needs and how to best support this age group with eczema are unknown What does this add? Three psychosocial needs were developed from evaluating the impact of visible and invisible symptoms of eczema: The need to feel understood (mostly reflective of invisible symptoms such as itch and pain and visible symptoms such as scratching). The need to be perceived as 'normal': visible symptoms such as flaky, inflamed skin make them stand out in comparison with their peers and a need emerged to blend in. The need for emotional support: adolescents and young adults searched for this from their health care providers, from shared experiences and from online resources. Adolescents and young adults with eczema appear to feel ambivalent about wishing the impact of the condition to be acknowledged whilst wishing the condition to be invisible to others. This ambivalence had further impact on feeling self-conscious, seeking support, and dealing with unsolicited advice.
本研究旨在探讨青少年和年轻人与湿疹相关症状的体验，以确定他们的心理社会需求。
通过对两个不同项目（SKINS 项目和 Eczema Care Online 项目）中收集的半结构化访谈的两个数据源进行二次定性分析。
共有 28 份与患有湿疹的青少年和年轻人的转录本可供分析，他们的平均年龄为 19.5 岁。访谈数据是从面对面的访谈中收集的，这些访谈被记录并转录。归纳主题分析探讨了与症状相关的数据，并根据心理社会需求进行了组织。
患有湿疹的青少年和年轻人既经历可见症状（如片状、干燥和发炎的皮肤），也经历不可见症状（如瘙痒、疼痛、疲惫和精神困扰），这些症状引发了不同的心理社会需求。这些心理社会需求是：（i）被理解；（ii）被视为正常；以及（iii）获得情感支持。受访者描述了一种挣扎，他们既希望同龄人及其家人理解他们的湿疹，但又希望他们认真对待湿疹，同时又不想引人注目，而是被视为“正常”，他们将其定义为被视为其他青少年。这对行为产生了影响，例如寻求支持、避免外出、隐藏皮肤，以及对社交孤立、焦虑和情绪低落等情感影响。
更好地了解年轻人的经历和心理社会需求将为如何在管理与湿疹相关的症状时最好地支持青少年和年轻人提供一个框架。
关于这个主题已经知道些什么？湿疹对儿童有很大的影响，被患有湿疹的儿童和成年人视为负担。然而，目前尚不清楚湿疹对青少年和年轻人有什么影响。患有慢性疾病的青少年和年轻人易受到负面心理社会结果的影响，但他们的心理社会需求以及如何最好地支持这一年龄组的湿疹尚不清楚。
这增加了什么？从评估湿疹的可见和不可见症状的影响中确定了三个心理社会需求：需要被理解（主要反映不可见症状，如瘙痒和疼痛，以及可见症状，如搔抓）。需要被视为“正常”：片状、发炎的皮肤等可见症状使他们与同龄人相比显得突出，因此出现了融入的需求。情感支持的需求：青少年和年轻人从他们的医疗保健提供者、共同的经历和在线资源中寻求这种支持。患有湿疹的青少年和年轻人似乎对希望病情得到承认和希望病情对他人不可见这两种情况感到矛盾。这种矛盾进一步影响了他们的自我意识、寻求支持和处理不请自来的建议。
