St George's, University of London, Division of Mental Health, Cranmer Terrace, London SW17 0RE, UK.
Eur J Oncol Nurs. 2010 Jul;14(3):224-30. doi: 10.1016/j.ejon.2010.01.021. Epub 2010 Feb 23.
Growing numbers of people with intellectual disabilities are diagnosed with a life-limiting illness such as cancer. Little is known about disclosure of diagnosis and prognosis to this group. The study aim was to explore how much people with intellectual disabilities who have cancer understand about their diagnosis and prognosis, and to explore how much they are told about their cancer.
13 people with intellectual disabilities and cancer took part in a 3-year ethnographic study. Data collection consisted mostly of participant observation. Participants were visited regularly for a median of 7 months.
Eleven participants were told that they had cancer, but most were not helped to understand the implications of this diagnosis or their prognosis. Decisions around disclosure, as well as the task of truth-telling, rested mostly with relatives and paid carers. Those with severe/profound intellectual disabilities were most likely to be protected from the truth. Understanding was affected by cognitive ability, life experience and truth-telling. Lack of understanding affected the ability to take decisions about treatment and care.
Existing models for breaking bad news are inadequate for people with intellectual disabilities. The findings suggest that more open communication is needed, but further studies are needed to establish best practice in this area.
越来越多的智障人士被诊断出患有癌症等危及生命的疾病。但对于向这一群体透露诊断结果和预后的情况，我们知之甚少。本研究旨在探讨癌症患者对自身诊断和预后的了解程度，以及他们被告知的有关自身癌症的情况。
13 名患有智力残疾和癌症的患者参与了一项为期 3 年的民族志研究。数据收集主要包括参与式观察。参与者平均每 7 个月接受一次定期访问。
11 名参与者被告知患有癌症，但大多数人并未了解该诊断或其预后的含义。有关透露信息的决定，以及如实告知的任务，主要由亲属和付费照顾者承担。那些患有严重/重度智力残疾的人最有可能被隐瞒真相。认知能力、生活经历和如实告知的情况影响了理解能力。缺乏理解会影响对治疗和护理做出决策的能力。
现有的不良消息传递模式不适合智障人士。研究结果表明，需要进行更开放的沟通，但需要进一步研究以确定该领域的最佳实践。
