Joanne O’Brien-Kelly, David Moore, Ian O’Leary, T. O’Connor, Zena Moore, D. Patton, L. Nugent
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引用次数: 0
摘要
开发一种支持纤维肌痛患者的电子保健资源,并探索其可用性及其对患者自我管理和自我效能的影响。纤维肌痛是一种复杂的非进行性慢性疾病,其特点是患者需要自我管理的症状令人困惑。国际指南建议患者在确诊后接受针对具体疾病的信息,以促进自我管理并改善与健康相关的生活质量。采用三阶段混合方法探索性顺序设计。定性访谈探讨了在都柏林一家大型三甲医院就诊的纤维肌痛患者对信息和自我管理的需求。在设计和开发电子健康资源的过程中,利用了所确定的主题以及对纤维肌痛患者证明有效的干预措施文献的广泛回顾。利用干预前和干预后的结果测量,对该资源的可用性和影响进行了测试。对患者的访谈显示,他们缺乏易于获取的有据可查的信息来支持自我管理,这意味着迫切需要通过开发量身定制的电子健康资源来找到切实可行的解决方案。该网站包含六个主题:疾病知识、主要症状、治疗方案、自我管理策略、实际支持和可靠资源。45 名患者对网站的可用性和影响进行了测试,结果表明,在使用网站 4 周后,患者的自我效能感有了显著提高,且效果中等。干预前纤维肌痛影响评分最严重的患者在 4 周后的改善幅度最大。患者对该资源的系统可用性评分为 A 级,并强烈推荐给其他被诊断为纤维肌痛的患者。这项研究表明,开发新型电子健康资源如何对纤维肌痛患者应对这种衰弱病症的自我效能产生积极影响。这项研究表明,获取电子健康资源可对患者的自我效能产生积极影响,并有可能成为其他慢性病电子健康资源开发的模板,为从事慢性病管理的高级执业护士提供支持。
Development and impact of a tailored eHealth resource on fibromyalgia patient’s self-management and self-efficacy: A mixed methods approach
To develop an eHealth resource to support fibromyalgia patients and explore it for usability and impact on their self-management and self-efficacy. Fibromyalgia is a complex, non-progressive chronic condition characterised by a bewildering array of symptoms for patients to self-manage. International guidelines recommend patients receive illness-specific information once diagnosed to promote self-management and improve health-related quality of life. A 3-phase mixed methods exploratory sequential design. Qualitative interviews explored the information and self-management needs of fibromyalgia patients attending a large tertiary hospital in Dublin. Identified themes together with an extensive review of the literature of interventions proven to be impactful by patients with fibromyalgia were utilised in the design and development of the eHealth resource. The resource was tested for usability and impact using pre and post-intervention outcomes measures. Patient interviews highlighted a lack of easy accessible evidenced information to support self-management implicating the urgent need for a practical solution through development of a tailored eHealth resource. Six themes emerged for inclusion; illness knowledge, primary symptoms, treatment options, self-management strategies, practical support and reliable resources. Forty-five patients who tested the site for usability and impact demonstrated a statistically significant improvement in self-efficacy after 4 weeks access with a medium positive effect size. Patients with the most severe fibromyalgia impact scores pre-intervention demonstrated the most improvement after 4 weeks. Patients gave the resource a System Usability Score A rating, highly recommending it for fellow patients diagnosed with fibromyalgia. The study demonstrated how the development of a novel eHealth resource positively impacted fibromyalgia patients’ self-efficacy to cope with this debilitating condition. This study suggests that access to eHealth can positively impact patients self-efficacy, has the potential to be a template for eHealth development in other chronic conditions, supporting advanced nurse practitioners working in chronic disease management.
期刊介绍:
British Journal of Pain is a peer-reviewed quarterly British journal with an international multidisciplinary Editorial Board. The journal publishes original research and reviews on all major aspects of pain and pain management. Reviews reflect the body of evidence of the topic and are suitable for a multidisciplinary readership. Where empirical evidence is lacking, the reviews reflect the generally held opinions of experts in the field. The Journal has broadened its scope and has become a forum for publishing primary research together with brief reports related to pain and pain interventions. Submissions from all over the world have been published and are welcome. Official journal of the British Pain Society.