Radford S, Carr M, Hehir M, Davis B, Robertson L, Cockshott Z, Tipler S, Hewlett S
Clinical Psychology Department, University of Plymouth, UK.
Musculoskeletal Care. 2008 Sep;6(3):155-67. doi: 10.1002/msc.132.
The diagnosis of rheumatoid arthritis (RA) brings rapid pharmacological and multidisciplinary team interventions to address inflammatory processes and symptom management. However, people may also need support on the journey to self-management. The aim of this study was to explore what professional support patients feel they receive upon diagnosis, and what support they feel would be most helpful.
Two focus groups comprised patients with at least five years'; disease duration (n = 7), and patients more recently diagnosed (5-18 months, n = 5). The latter had attended at least two appointments in a rheumatology nurse specialist clinic during the previous year, aimed at providing support upon diagnosis. Transcripts were subjected to thematic analysis to identify common issues regarding support needs, which were then grouped into themes. Interviewing and analysis was performed by researchers not involved in clinical care.
Four overarching themes emerged. 'Information' was needed about the symptoms of RA, its management and personal outcome, while 'Support' related to emotional needs ('It's quite hard to grasp the enormity of it'). Information and Support overlapped, in that patients wanted someone to talk to, and to be listened to. These two themes were underpinned by issues of service delivery: 'Choice' (patient or professional to talk to, groups, one-to-one) and 'Involvement' (holistic care, partnership), which overlapped in terms of the opportunity to decide when and which interventions to access.
People with RA report not only informational, but also emotional support needs at diagnosis. The potential for delivering emotional support to patients around the time of diagnosis warrants further exploration.
类风湿关节炎（RA）的诊断促使迅速采取药物治疗和多学科团队干预措施，以应对炎症过程和症状管理。然而，患者在自我管理过程中可能也需要支持。本研究的目的是探讨患者在诊断时认为自己得到了哪些专业支持，以及他们认为最有帮助的支持是什么。
两个焦点小组，一组为病程至少五年的患者（n = 7），另一组为近期确诊的患者（5 - 18个月，n = 5）。后者在前一年至少参加了两次风湿科护士专家门诊预约，目的是在诊断时提供支持。对访谈记录进行主题分析，以确定关于支持需求的常见问题，然后将其归纳为主题。访谈和分析由未参与临床护理的研究人员进行。
出现了四个总体主题。需要关于RA症状、其管理和个人预后的“信息”，而“支持”与情感需求相关（“很难理解其严重性”）。信息和支持相互重叠，因为患者希望有人可以交谈并倾听他们。这两个主题的基础是服务提供问题：“选择”（与患者或专业人员交谈、小组、一对一）和“参与”（整体护理、伙伴关系），在决定何时以及接受何种干预措施的机会方面两者相互重叠。
RA患者在诊断时不仅报告了信息支持需求，还报告了情感支持需求。在诊断前后为患者提供情感支持的潜力值得进一步探索。
