AimTo explore healthcare workers' experiences of end of life care for people with an intellectual disability.DesignA descriptive qualitative study.MethodSemi‐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.ResultsThree major themes emerged: not joining up the dots, living the life desired in one's last days and dealing with death and beyond.ConclusionGaps 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 CareThere 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.ImpactThis 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.Patient or Public ContributionThere 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.

中文翻译：

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医护人员对智障人士临终关怀经历的定性探索


目的探讨医护人员为智障人士提供临终关怀的经验。设计描述性定性研究。方法对 28 名照顾临终智障老年人的医护人员进行了半结构化访谈。使用主题分析对数据进行分析，并根据 COREQ 指南进行报告。结果出现了三个主要主题：不把点点滴滴连接起来，在最后的日子里过上理想的生活，以及应对死亡和超越。结论在智障人士的护理方面存在差距。疼痛评估和疼痛管理是特别的挑战。临终关怀并不总是得到有效的规划，需要早期干预，包括临终对话。在医护人员的教育方面需要做更多的工作，尤其是那些可能不熟悉这一群体需求的急症护理机构和姑息治疗服务人员。对专业和/或患者护理的影响关于智障人士的姑息治疗需求几乎没有共识或理解。提供姑息治疗通常存在特定的挑战，特别是与医护人员在了解这一群体的姑息治疗需求以及沟通和评估特定需求方面的知识和信心有关。工作人员需要姑息治疗方面的教育准备和培训，以满足这一群体的特殊需求。影响这项研究揭示了在生命末期对智障人士的护理方面出现了差距。疼痛评估和疼痛管理是需要紧急关注的特殊挑战。患者或公众贡献尽管 IDS-TILDA 有一个客户代表和咨询委员会，可以就项目设计和管理的各个方面提供建议，但在这项特定研究中没有患者或出版物的贡献。