St Francis Hospice, Dublin, Ireland.
University College Dublin, School of Psychology, Dublin, Ireland.
Palliat Support Care. 2011 Jun;9(2):201-8. doi: 10.1017/S1478951511000137.
The general population has been involved in considerable debate about communication and awareness within the context of death and dying. However, there has been little research on how matters of communication on this topic are handled for people with life-limiting illness and intellectual disabilities. This qualitative study explored how staff managed communication about death and dying with people with intellectual disabilities in a Health Service Executive area in Ireland.
Ninety-one individuals took part in 16 focus groups. Interviews were analysed using framework analysis.
Participants infrequently discussed death and dying with people with intellectual disabilities. Participants operated most commonly in suspicious awareness environments with people with mild-to-moderate intellectual disabilities, and closed awareness environments with people with severe intellectual disabilities. The majority of participants did not hold absolute opinions that talking about illness, death, and dying with people with intellectual disabilities was "wrong." Rather, they were concerned that their lack of skill and experience in the area would cause harm if they engaged in open conversations. Relatives had an influential role on the process of communication. Participants were strongly motivated to provide quality care and were willing to consider alternative approaches to communication if this would benefit people with intellectual disabilities.
Although there has been a shift toward conditional open awareness of death and dying in Western society, people with intellectual disabilities have not been afforded the same opportunity to engage in open discussion of their mortality. This study points to the urgent need to engage in debate about this issue in order to ensure that people with intellectual disabilities receive high quality palliative care toward the end of life.
在死亡和临终的背景下，普通民众对沟通和意识问题展开了广泛的讨论。然而，对于生命有限的患者和智障人士在沟通这个话题上的问题，研究甚少。本定性研究探讨了爱尔兰卫生署区域内的工作人员如何与智障人士就死亡和临终问题进行沟通。
91 名参与者参加了 16 个焦点小组。使用框架分析对访谈进行分析。
参与者很少与智障人士讨论死亡和临终问题。参与者通常在与轻度至中度智障人士的可疑意识环境中，以及与重度智障人士的封闭意识环境中进行操作。大多数参与者并不认为与智障人士谈论疾病、死亡和临终是“错误的”，他们只是担心自己在这方面缺乏技能和经验，如果进行公开对话会造成伤害。亲属在沟通过程中起着重要作用。参与者强烈希望提供优质护理，如果这对智障人士有益，他们愿意考虑替代沟通方法。
尽管在西方社会中，对死亡和临终的认识已经转向有条件的开放，但智障人士并没有被给予同样的机会来参与对其死亡的公开讨论。本研究表明，迫切需要就这个问题展开辩论，以确保智障人士在生命的最后阶段获得高质量的姑息治疗。
