School of Health Sciences and Social Care, Brunel University, Uxbridge, Middlesex, UK.
J Clin Nurs. 2009 Jun;18(12):1793-802. doi: 10.1111/j.1365-2702.2008.02692.x. Epub 2009 Feb 5.
To describe patients' experiences of living with Dupuytren's disease.
Dupuytren's disease is a chronic, progressive deformity of the hand which limits active extension of the fingers due to advancing and irreversible flexion deformity. It is estimated that two million people are affected by the condition in the UK. Nurses may frequently encounter patients with this condition in a wide range of settings. However, the disease is neglected in the nursing literature and little is known about patients' experience of living with the condition.
A phenomenological approach, using Coliazzi's method, was employed.
Semi-structured interviews were conducted with six men and one woman diagnosed with Dupuytren's disease.
Four interlinking themes emerged. Theme 1: Awareness of Dupuytren's disease describes participants' experiences of recognising and acknowledging the disease, which often did not occur until functional ability was restricted. Theme 2: Living with Dupuytren's disease describes how patients coped with the disease and adapted their activities to maintain independence. Theme 3: Deciding on treatment illuminates how patients decided on treatment and highlights a lack of information and support from health professionals. Theme 4: Receiving treatment articulates participants' experience of surgical treatment and post surgical rehabilitation.
The findings revealed that people living with Dupuytren's disease receive little information about their condition and possible treatment from health professionals yet high quality and accurate information is required for patients to understand their condition and the treatment options available.
People with Dupuytren's disease do not always recognise their condition until it has significantly progressed. Following diagnosis they need accurate and up-to-date information about their condition and treatment options. Nurses have an important role to play in raising awareness of the disease, educating patients about its features and progression and enabling them to become active partners in decisions about treatment.
描述患有杜普伊特伦挛缩症患者的生活体验。
杜普伊特伦挛缩症是一种手部的慢性、进行性畸形疾病，由于进行性和不可逆的弯曲畸形，导致手指主动伸展受限。据估计，英国有 200 万人受到该病的影响。护士可能会在各种环境中经常遇到患有这种疾病的患者。然而，该病在护理文献中被忽视，对于患者患有这种疾病的生活体验知之甚少。
采用现象学方法，使用科利兹的方法。
对 6 名男性和 1 名女性被诊断患有杜普伊特伦挛缩症的患者进行半结构化访谈。
出现了四个相互关联的主题。主题 1：对杜普伊特伦挛缩症的认识描述了参与者认识和承认该病的经历，直到功能能力受到限制时才会发生。主题 2：患有杜普伊特伦挛缩症的生活描述了患者如何应对疾病并调整活动以保持独立性。主题 3：决定治疗方案阐明了患者决定治疗方案的过程，并强调了缺乏来自卫生专业人员的信息和支持。主题 4：接受治疗表达了患者对手术治疗和术后康复的体验。
研究结果表明，患有杜普伊特伦挛缩症的患者从卫生专业人员那里获得的有关其病情和可能的治疗方案的信息很少，但患者需要高质量和准确的信息来了解自己的病情和可用的治疗方案。
患有杜普伊特伦挛缩症的人直到病情明显进展才会意识到自己的病情。诊断后，他们需要关于病情和治疗选择的准确和最新信息。护士在提高对该病的认识、教育患者了解其特征和进展以及使他们能够成为治疗决策的积极参与者方面发挥着重要作用。
