Living with vulval lichen sclerosus: a qualitative interview study.
Living with vulval lichen sclerosus: a qualitative interview study.
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DOI：
10.1111/bjd.21777
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发表时间：
2022-12
影响因子：
10.3
通讯作者：
Rees, Sophie
中科院分区：
文献类型：
--
作者：
Arnold, Susanne;Fernando, Sheryl;Rees, Sophie
外阴硬化性苔藓(VLS)是一种主要影响肛门生殖器皮肤的慢性炎症性疾病。症状可能会令人痛苦，并影响生活质量和日常活动。很少有研究从VLS患者的角度来探讨VLS的生活体验。了解个人的VLS经历及其对其生活的影响。对居住在英国的20名女性进行了半结构化远程(电话或视频)访谈，这些女性通过在线支持小组和社交媒体招募了VLS。数据收集和分析以社会建构主义扎根理论为指导，采用不断比较的方法。我们开发了三个主题来解释与VLS生活在一起的经历：错失了机会(参与者经历了延误的诊断、缺乏信息以及与医疗专业人员的无能为力的接触)；学习与长期疾病一起生活(学习如何自我管理疾病所涉及的工作量及其对日常生活的影响)；秘密生活(这种疾病的经历往往笼罩在秘密之中，而且有与外阴皮肤疾病相关的耻辱，导致他们感到孤立和孤独)。就诊时有外阴主诉的患者应该接受检查，LS应该被认为是诊断。医护人员对VLS的认识和知识需要提高，他们应该避免使用指责或最小化患者经历的语言。VLS是一种慢性疾病，患者需要在自我管理方面得到支持。支持小组可能是支持和信息的来源，但当听到其他人的困难经历时，也可能具有挑战性。需要开展更广泛的公共卫生教育活动，以改变社会对女性生殖器的态度，并解决有关外阴疾病的污名问题。外阴硬化性苔藓(VLS)可以对生活质量和自我认同产生深远的影响，但从患有这种疾病的人的角度来看，研究相对较少。关于这个话题，我们已经知道了什么？关于与VLS生活在一起的经历的深入发现，包括及时诊断的持续问题，学习与长期疾病一起生活，以及对这种疾病的保密和耻辱。医疗保健系统没有充分满足有VLS症状和诊断的妇女的需求。这项研究增加了什么？医疗保健专业人员应考虑解决包括VLS在内的外阴疾病的知识差距，以防止延误诊断，并避免使用某些可能会将患者的经验降至最低的术语。有外阴主诉的患者应进行检查，并应考虑LS作为诊断。定期跟进将反映其慢性性质，并可为患者提供自我管理的安心和信心。需要开展更广泛的公共卫生活动，以改变社会态度并解决有关外阴疾病的污名问题。这项 研究的临床意义是什么？外阴硬化性苔藓可以对生活质量和自我认同产生深远的影响，但从患有这种疾病的人的角度来看，研究相对较少。本研究采用定性研究方法，探讨外阴硬化性苔藓患者的患病经历及其对生活的影响。我们开发了三个主题来解释与外阴硬化性苔藓一起生活的经历：错失机会，学会长期生活，以及秘密的生活。链接评论：V.Sivalingam和K.TamberBR J皮肤科2022；187：840。网上提供通俗易懂的摘要
Vulval lichen sclerosus (VLS) is a chronic inflammatory condition predominantly affecting the anogenital skin. Symptoms can be distressing and affect quality of life and everyday activities. Very little research has been undertaken to explore the experience of living with VLS from the perspective of people with the condition. To understand individuals’ experiences of VLS and its impact on their lives. Semi‐structured remote (telephone or video) interviews were conducted with a purposive sample of 20 women living in the UK with VLS recruited via online support groups and social media. Data collection and analysis was informed by social constructionist grounded theory, using a constant comparison method. We developed three themes to interpret the experience of living with VLS: missed opportunities (participants experienced delayed diagnosis, lack of information and disempowering encounters with healthcare professionals); learning to live with a long‐term condition (the amount of work involved in learning how to self‐manage the disease and the impact on everyday life); a secret life (experiences of the condition were often shrouded in secrecy, and there was stigma associated with a vulval skin condition resulting in them feeling isolated and lonely). Patients attending healthcare appointments with vulval complaints should be examined and LS should be considered as a diagnosis. Healthcare professionals’ awareness and knowledge of VLS needs to be improved and they should avoid language which is blaming or minimizing of patients’ experiences. VLS is a chronic condition and patients need to be supported in self‐management. Support groups may be a source of support and information but can also be challenging when hearing others’ difficult experiences. Wider public health educational activities are needed to change societal attitudes towards female genitals and tackle the stigma around vulval conditions. Vulval lichen sclerosus (VLS) can have a profound impact on quality of life and self‐identity but is relatively underexplored from the perspective of those living with the condition. What is already known about this topic? In‐depth findings about the experiences of living with VLS including ongoing issues with timely diagnosis, learning to live with a long‐term condition and the secrecy and stigma about the condition. The needs of women with symptoms of and diagnoses of VLS are not being met sufficiently by the healthcare system. What does this study add? Healthcare professionals should consider addressing knowledge gaps in vulval conditions including VLS to prevent delayed diagnosis and avoid the use of certain terminology which can minimize patients’ experiences. Patients with vulval complaints should be examined and LS should be considered as a diagnosis. Regular follow‐up would reflect its chronic nature and could provide patients with reassurance and confidence in self‐management. Wider public health activities are needed to change societal attitudes and tackle stigma around vulval conditions. What are the clinical implications of this work? Vulval lichen sclerosus can have a profound impact on quality of life and self‐identity but is relatively under‐explored from the perspective of those living with the condition. Using qualitative methods, the aim of this study was to explore individuals’ experiences of vulval lichen sclerosus and its impact on their lives. We developed three themes to interpret the experience of living with vulval lichen sclerosus: missed opportunities, learning to live with a long‐term condition, and a secret life. Linked Comment: V. Sivalingam and K. Tamber. Br J Dermatol 2022; 187:840. Plain language summary available online
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