Tuffrey-Wijne I, Rose T
Faculty of Health, Social Care and Education, Kingston University & St George's, University of London, UK.
Kent Community Health NHS Foundation Trust, UK.
J Intellect Disabil Res. 2017 Aug;61(8):727-736. doi: 10.1111/jir.12375. Epub 2017 Apr 7.
Most staff working in intellectual disability services will be confronted with people with intellectual disabilities who need support around death, dying and bereavement. Previous studies suggest that intellectual disability staff tend to protect clients from knowing about death and avoid communication about death. The aims of this study were to gain further insight into the individual, organisational and contextual factors that affect the communication of death-related bad news to people with intellectual disabilities by intellectual disability staff and to develop guidelines for services to enable appropriate communication with clients about death and dying.
Semi-structured interviews were held with 20 social care staff working in intellectual disability residential or supported living services in London, who had supported a client affected by death-related bad news in the past 6 months.
Staff found supporting people with intellectual disabilities around death and dying extremely difficult and tended to avoid communication about death. The following factors had a particularly strong influence on staff practice around communicating death-related bad news: fear and distress around death; life and work experience; and organisational culture. Staff attitudes to death communication had a stronger influence than their client's level of cognitive or communicative abilities. Managers were important role models.
Service managers should ensure not only that all their staff receive training in death, loss and communication but also that staff are enabled to reflect on their practice, through emotional support, supervision and team discussions. Future work should focus on the development and testing of strategies to enable intellectual disability staff to support their clients in the areas of dying, death and bereavement.
大多数从事智力残疾服务工作的人员都会遇到需要在死亡、临终和丧亲方面获得支持的智力残疾人士。以往研究表明，智力残疾服务人员往往会保护服务对象，不让他们知晓死亡的消息，并避免谈论死亡。本研究的目的是进一步深入了解影响智力残疾服务人员向智力残疾人士传达与死亡相关坏消息的个人、组织和环境因素，并制定服务指南，以便与服务对象就死亡和临终进行适当沟通。
对20名在伦敦智力残疾寄宿或支持性居住服务机构工作的社会护理人员进行了半结构化访谈，这些人员在过去6个月内曾为一名受到与死亡相关坏消息影响的服务对象提供过支持。
工作人员发现，在死亡和临终问题上为智力残疾人士提供支持极其困难，并且往往会避免谈论死亡。以下因素对工作人员在传达与死亡相关坏消息方面的做法影响尤为强烈：对死亡的恐惧和痛苦；生活和工作经历；以及组织文化。工作人员对死亡沟通的态度比服务对象的认知或沟通能力水平影响更大。管理人员是重要的榜样。
服务管理人员不仅应确保其所有工作人员都接受关于死亡、丧失和沟通方面的培训，还应通过情感支持、监督和团队讨论，使工作人员能够反思自己的做法。未来的工作应侧重于制定和测试各种策略，以使智力残疾服务人员能够在临终、死亡和丧亲领域为其服务对象提供支持。
