Regnard C, Reynolds Joanna, Watson Bill, Matthews Dorothy, Gibson Lynn, Clarke Charlotte
St Oswald's Hospice, Newcastle City Hospitals NHS Trust and Northgate and Prudhoe NHS Trust, Newcastle Upon Tyne, UK.
J Intellect Disabil Res. 2007 Apr;51(Pt 4):277-92. doi: 10.1111/j.1365-2788.2006.00875.x.
Meaningful communication with people with profound communication difficulties depends on the ability of carers to recognize and translate many different verbal cues. Carers appear to be intuitively skilled at identifying distress cues, but have little confidence in their observations. To help in this process, a number of pain tools have been developed, but this sits uncomfortably with the lack of evidence that pain has any specific signs or behaviours. A palliative care team working with people with intellectual disabilities developed the Disability Distress Assessment Tool (DisDAT) to document a wide range of signs and behaviours of distress and when an individual is content.
The tool was piloted with 16 carers and 8 patients. It was then assessed using quantitative and qualitative methods, employing 56 carers in routine clinical situations with 25 patients, most with severe communication difficulties. Carers of 10 patients participated in semi-structured interviews exploring the signs and behaviours demonstrated by patients when distressed and when content. These same 10 patients were observed for distress cues during different activities.
It became clear that distress did not have a common meaning among carers, but there was a clear understanding that distress did not just cover physical pain. The range of distress cues was wide, with no evidence that any cues were specific to particular causes. Although some distress cues were common between patients, each patient had a distinct pattern of distress cues. In addition, different carers identified a different range of distress cues, while the length of the relationship did not influence the number of cues identified. Most distress cues were a change from the norm, but some patients demonstrated distress as an absence of content cues. Carers found the DisDAT simple to use and useful, and several felt that DisDAT would have helped advocate for the patients in previous conflicts with clinical teams.
There was no evidence that pain has any specific signs or behaviours. The preliminary and assessment phases showed that distress was a useful clinical construct in providing care. The DisDAT reflected patients' distress communication identified by a range of carers, and provided carers with evidence for their intuitive observations of distress.
与存在严重沟通障碍的人进行有意义的交流，取决于护理人员识别和解读多种不同言语线索的能力。护理人员似乎凭直觉就能熟练识别痛苦线索，但对自己的观察结果信心不足。为协助这一过程，已开发出多种疼痛评估工具，但令人不安的是，目前缺乏证据表明疼痛有任何特定的体征或行为表现。一个为智障人士提供服务的姑息治疗团队开发了残疾痛苦评估工具（DisDAT），以记录一系列痛苦的体征和行为表现，以及个体何时处于舒适状态。
该工具在16名护理人员和8名患者中进行了试用。随后，采用定量和定性方法进行评估，让56名护理人员在日常临床环境中对25名患者进行观察，这些患者大多存在严重的沟通障碍。10名患者的护理人员参与了半结构化访谈，探讨患者在痛苦和舒适时表现出的体征和行为。对这10名患者在不同活动期间的痛苦线索进行了观察。
很明显，痛苦在护理人员之间没有共同的含义，但大家清楚地认识到，痛苦不仅仅包括身体疼痛。痛苦线索的范围很广，没有证据表明任何线索特定于特定原因。虽然有些痛苦线索在患者之间是常见的，但每个患者都有独特的痛苦线索模式。此外，不同的护理人员识别出的痛苦线索范围不同，而关系持续的时间并不影响所识别线索的数量。大多数痛苦线索是与正常情况的变化，但有些患者表现出痛苦是因为缺乏舒适线索。护理人员发现DisDAT易于使用且有用，一些人认为DisDAT在之前与临床团队的冲突中会有助于为患者争取权益。
没有证据表明疼痛有任何特定的体征或行为。初步和评估阶段表明，痛苦是提供护理时一个有用的临床概念。DisDAT反映了一系列护理人员所识别的患者痛苦交流情况，并为护理人员对痛苦的直观观察提供了依据。
