Department of Social Work and Social Administration, University of Hong Kong, Pok Fu Lam, Hong Kong.
Sau Po Centre on Ageing, University of Hong Kong, Pok Fu Lam, Hong Kong.
J Intellect Disabil Res. 2017 Dec;61(12):1130-1139. doi: 10.1111/jir.12431. Epub 2017 Oct 18.
Individuals with ID are often withheld information about the death of their loved ones as it has often been thought that they do not understand death or cannot grieve. This grief exacerbates the stress of individuals with ID as they often encounter secondary losses such as transitioning to a care facility. The aim of this study is to investigate men and women with ID understanding death concepts and to what extent.
Adopting a stratified random sampling method, 156 Chinese people with ID were invited to join the study. One hundred and ten participants were interviewed using simple death related vignettes expanding upon and replicating a published study carried out in Ireland. The understanding of the five death concepts: causality, irreversibility, nonfunctionality, universality and inevitability was examined. The correlates of demographics, bereavement experiences and comprehension were explored.
The majority of the participants did understand concepts such as death is irreversible and that the deceased no longer function. One third of the participants understood causality and the universality of death. One fifth understood the inevitability of death. Previous bereavement experiences were correlated with higher understanding. Communication and community skills were correlated with all concepts of death except universality.
The results indicate that individuals with ID do have a partial to full understanding of the concepts of death. The culture of Hong Kong is one that considers death to be a taboo or unlucky subject. Therefore, the results mirror the the lack of understanding of universality and inevitability concepts as it is forbidden to speak of these concepts. An open and honest environment is encouraged to educate individuals with ID about death and bereavement.
由于人们常常认为 ID 患者无法理解死亡或无法悲伤，因此常常对他们隐瞒亲人去世的消息。这种悲伤加剧了 ID 患者的压力，因为他们经常会遇到继发性丧失，例如转移到护理机构。本研究旨在调查 ID 患者对死亡概念的理解程度。
采用分层随机抽样方法，邀请 156 名中国 ID 患者参加研究。采用简单的与死亡相关的情景片段对 110 名参与者进行访谈，这些片段扩展和复制了在爱尔兰进行的一项已发表的研究。检查了对五个死亡概念的理解：因果关系、不可逆性、非功能性、普遍性和必然性。探讨了人口统计学、丧亲经历和理解程度的相关性。
大多数参与者确实理解了死亡是不可逆转的，死者不再有功能等概念。三分之一的参与者理解因果关系和死亡的普遍性。五分之一的参与者理解死亡的必然性。以前的丧亲经历与更高的理解度相关。沟通和社区技能与死亡的所有概念都相关，除了普遍性。
结果表明，ID 患者对死亡概念有部分到完全的理解。香港文化认为死亡是一个禁忌或不吉利的话题。因此，结果反映了对普遍性和必然性概念的理解不足，因为禁止谈论这些概念。鼓励营造开放和诚实的环境，向 ID 患者传授有关死亡和丧亲的知识。
