Wehbe-Alamah Hiba, Kornblau Barbara L, Haderer JoAnn, Erickson Janetlynne
Department of Nursing, School of Health Professions and Studies, University of Michigan-Flint, Flint, Michigan 48502-1950, USA.
J Am Acad Nurse Pract. 2012 Aug;24(8):499-505. doi: 10.1111/j.1745-7599.2012.00715.x. Epub 2012 Apr 30.
Lichen Sclerosis (LS) is an often unrecognized and misdiagnosed chronic inflammatory skin condition of the anogenital area that affects quality of life, bringing severe discomfort and distress to affected men, women, and children. The purpose of this qualitative study is to explore the lived experiences of women with LS.
Content analysis was conducted of data obtained from three public online forums/blogs used by women with LS. A total of 527 postings/entries were analyzed for patterns and themes by four researchers.
Five core themes emerged as a result of this study, revealing feelings of frustration and despair stemming from healthcare providers' lack of knowledge in relation to Lichen Sclerosis, often leading to misdiagnosis, prolonged suffering, and an altered quality of life.
Knowledgeable healthcare providers and additional research into the cause, treatment, and cure of Lichen Sclerosis are needed. Advance-practice nurses stand to play an important role in the areas of education, research, policy making, and clinical practice to advocate for and empower women with LS.
硬化性苔藓（LS）是一种常未被识别和误诊的慢性炎症性肛周皮肤病，会影响生活质量，给受影响的男性、女性和儿童带来严重不适和痛苦。这项定性研究的目的是探索患有硬化性苔藓的女性的生活经历。
对从三个硬化性苔藓女性使用的公共在线论坛/博客获取的数据进行了内容分析。四位研究人员对总共527篇帖子/条目进行了模式和主题分析。
本研究得出了五个核心主题，揭示了由于医疗服务提供者对硬化性苔藓缺乏了解而产生的沮丧和绝望情绪，这往往导致误诊、长期痛苦和生活质量改变。
需要知识渊博的医疗服务提供者以及对硬化性苔藓的病因、治疗和治愈方法进行更多研究。高级实践护士在教育、研究、政策制定和临床实践领域可以发挥重要作用，以倡导并增强患有硬化性苔藓的女性的权能。
