161909Curtin University, Australia.
J Intellect Disabil. 2020 Dec;24(4):543-558. doi: 10.1177/1744629518823887. Epub 2019 Feb 6.
People with intellectual disabilities at the end of life are at risk of receiving inadequate and inequitable end-of-life care. This study explores their unmet needs, opportunities for person-centred care and experiences of health service use.
Qualitative interviews with 26 experienced health professionals and carers were used to explore their patients' and residents' unmet needs and end-of-life care options and to outline strategies to support them.
A range of challenges and unmet needs experienced by people with intellectual disabilities are presented in themes: (1) accommodation setting at the end of life: dying 'at home'; (2) personal factors and networks: a circle of support; (3) end-of-life medical care and decision-making. Strategies to facilitate good end-of-life care and a model of care are presented.
Well-prepared and collaborative disability and health service workforces are needed, together with flexible and adequate end-of-life funding to ensure compassionate and person-centred care.
生命末期的智障人士有接受不足和不平等的临终关怀的风险。本研究探讨了他们未满足的需求、以患者为中心的护理机会以及对卫生服务的使用体验。
采用定性访谈的方法，对 26 名经验丰富的卫生专业人员和护理人员进行了访谈，以探讨他们的患者和居民的未满足的需求和临终关怀选择，并概述了支持他们的策略。
呈现了智障人士在临终关怀方面存在的一系列挑战和未满足的需求，包括：（1）临终时的住宿环境：“在家中”去世；（2）个人因素和社交网络：支持圈；（3）临终医疗护理和决策。还提出了促进良好临终关怀的策略和护理模式。
需要有准备充分、协作的残疾和卫生服务人员，以及灵活和充足的临终关怀资金，以确保富有同情心和以患者为中心的护理。
