United Lincolnshire Hospitals NHS Trust, United Kingdom.
Int J Nurs Stud. 2010 Dec;47(12):1500-9. doi: 10.1016/j.ijnurstu.2010.05.008. Epub 2010 Jun 19.
Inflammatory Bowel Disease is a collective term for two distinct long term conditions: Ulcerative Colitis and Crohn's disease. There is increasing emphasis on patients taking greater personal control and self-management of this condition, reflecting earlier research into the management of chronic illness. Nurses play a pivotal role in this process, yet how optimal personal control is self-assessed and self-managed in Inflammatory Bowel Disease is poorly understood.
This study set out to explore beliefs about personal control and self-management of Inflammatory Bowel Disease. It focused on the role of physical, psychological and socio-economic factors within the individual's life experience.
A qualitative approach was used comprising 24, one-to-one, semi-structured interviews with participants aged 30-40 years. Participants with a histological diagnosis of Inflammatory Bowel Disease for at least 12 months were eligible and recruited by gastrointestinal specialist staff from outpatient clinics at a large National Health Service Trust in the United Kingdom. Interviews were transcribed verbatim. Data analysis was informed by existing theories of personal control and used the 'systematic framework analysis' approach.
In addition to existing theories of personal control, self-discrepancy theory helped to explain how people viewed the control and self-management of Inflammatory Bowel Disease. One main theme emerged from the findings: 'Reconciliation of the self in IBD', this was supported by three sub-themes and eight basic themes. Some participants found that being unable to control and predict the course of their condition was distressing, however for others this limited control was not viewed as a negative outcome. Being able to share control of IBD with specialist health care staff was beneficial, and participants stated that other priorities in life were as equally important to manage and control. A key barrier to ensuring greater personal control and self-management was a lack of knowledge and awareness by non-specialist health care staff, employers and the wider society.
Nurses involved in the care of individuals with Inflammatory Bowel Disease should support and prepare patients for the discrepancies and uncertainties of living with the condition. Greater training about Inflammatory Bowel Disease is recommended, specifically for non-specialist health care staff and employers.
炎症性肠病是两种不同的长期疾病的统称：溃疡性结肠炎和克罗恩病。越来越强调患者对这种疾病进行更多的个人控制和自我管理，这反映了早期对慢性疾病管理的研究。护士在这个过程中起着关键作用，但在炎症性肠病中，个人对最佳控制的自我评估和自我管理方式知之甚少。
本研究旨在探讨人们对炎症性肠病的个人控制和自我管理的信念。它侧重于个体生活经历中身体、心理和社会经济因素的作用。
采用定性方法，对 24 名年龄在 30-40 岁之间的参与者进行了一对一的半结构化访谈。参与者的组织学诊断为炎症性肠病至少 12 个月，并由英国一家大型国民保健服务信托的胃肠专科工作人员从门诊诊所招募。访谈内容逐字记录。数据分析受到现有个人控制理论的启发，并使用了“系统框架分析”方法。
除了现有的个人控制理论外，自我差异理论有助于解释人们如何看待炎症性肠病的控制和自我管理。研究结果提出了一个主要主题：“在 IBD 中调和自我”，这得到了三个子主题和八个基本主题的支持。一些参与者发现无法控制和预测疾病的进程令人痛苦，但对其他人来说，这种有限的控制并不被视为负面结果。能够与专科医疗保健人员共同控制炎症性肠病是有益的，参与者表示，生活中的其他优先事项同样需要管理和控制。确保更大程度的个人控制和自我管理的一个关键障碍是，非专科医疗保健人员、雇主和更广泛的社会对该疾病缺乏了解和认识。
参与炎症性肠病患者护理的护士应支持和为患者做好应对该疾病的差异和不确定性的准备。建议对炎症性肠病进行更多的培训，特别是针对非专科医疗保健人员和雇主。
