McCarron Mary, Burke Eilish, Callion Philip Mc, Timmins Fiona
Trinity Centre for Ageing and Intellectual Disability, Trinity College, The University of Dublin, Dublin, Ireland.
The School of Nursing and Midwifery, Trinity College, Dublin, Ireland.
J Adv Nurs. 2025 Jul;81(7):3972-3986. doi: 10.1111/jan.16556. Epub 2024 Nov 6.
To explore healthcare workers' experiences of end of life care for people with an intellectual disability.
A descriptive qualitative study.
Semi-structured interviews were conducted with 28 healthcare workers who cared for older people with an intellectual disability at their end of life. Data were analysed using thematic analysis and reported according to the COREQ guidelines.
Three major themes emerged: not joining up the dots, living the life desired in one's last days and dealing with death and beyond.
Gaps emerged in the care of the person with intellectual disability. Pain assessment and pain management were particular challenges. End of life care was not always effectively planned, and earlier intervention, including end of life conversations, were needed. More needs to be done in terms of education for healthcare workers, and especially those in the acute care setting and palliative care services who may be unfamiliar with the needs of this cohort.
IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: There is little consensus or understanding about the palliative care needs of those with intellectual disability. There are often specific challenges around providing palliative care particularly in relation to healthcare staffs' knowledge and confidence in understanding palliative care needs of this group and indeed communicating and assessing particular needs. Staff require educational preparation and training in palliative care to address the particular needs of this cohort.
This study revealed that there are gaps emerging in the care of the person with intellectual disability at the end of life. Pain assessment and pain management are particular challenges that require urgent attention.
There was no patient or publication contribution in this specific study, although IDS-TILDA has a client representative and advisory committee that advise on all aspects of project design and management.
探讨医护人员为智障人士提供临终关怀的经历。
描述性定性研究。
对28名在智障老年人临终时提供护理的医护人员进行了半结构化访谈。采用主题分析法对数据进行分析，并根据COREQ指南进行报告。
出现了三个主要主题：未将各方面联系起来、在生命的最后日子里按自己期望的方式生活以及应对死亡及死后事宜。
智障人士的护理存在差距。疼痛评估和疼痛管理是特别的挑战。临终关怀并非总是得到有效规划，需要更早进行干预，包括临终谈话。在医护人员教育方面，尤其是急性护理环境和姑息治疗服务中可能不熟悉该群体需求的人员，还需要做更多工作。
对专业和/或患者护理的启示：对于智障人士的姑息治疗需求，几乎没有共识或理解。在提供姑息治疗方面往往存在特定挑战，特别是在医护人员对该群体姑息治疗需求的了解以及沟通和评估特定需求的知识和信心方面。工作人员需要接受姑息治疗方面的教育准备和培训，以满足该群体的特殊需求。
本研究表明，智障人士临终护理存在差距。疼痛评估和疼痛管理是需要紧急关注的特别挑战。
在这项具体研究中没有患者或公众的贡献，尽管爱尔兰痴呆症纵向研究（IDS-TILDA）有一个客户代表和咨询委员会，就项目设计和管理的各个方面提供建议。
