Cicely Saunders Institute of Palliative Care and Rehabilitation, King's College London, London, UK.
Faculty of Health and Medicine, Lancaster University, Lancaster, UK.
Palliat Med. 2020 Sep;34(8):1006-1018. doi: 10.1177/0269216320932774. Epub 2020 Jun 17.
There is evidence that people with intellectual disabilities experience healthcare inequalities, including access to specialist palliative care, but to date, there has not been a systematic review of empirical evidence.
To identify the palliative care needs of adults with intellectual disabilities and the barriers and facilitators they face in accessing palliative care.
Systematic review using a narrative synthesis approach (International prospective register of systematic reviews (PROSPERO) registration number: CRD42019138974).
Five databases were searched in June 2019 (MEDLINE, Embase, PsycINFO, the Cochrane library and CINAHL) along with hand searches and a search of the grey literature. All study designs were included.
A total of 52 studies were identified, all of which were conducted in high-income countries, the majority in the United Kingdom ( = 28). From a total of 2970 participants across all studies, only 1% were people with intellectual disabilities and 1.3% were family members; the majority (97%) were health/social care professionals. Identified needs included physical needs, psychosocial and spiritual needs, and information and communication needs. Barriers and facilitators were associated with education (e.g. staff knowledge, training and experience), communication (e.g. staff skill in assessing and addressing needs of people with communication difficulties), collaboration (e.g. importance of sustained multidisciplinary approach) and health and social care delivery (e.g. staffing levels, funding and management support).
This review highlights the specific problems in providing equitable palliative care for adults with intellectual disabilities, but there is a lack of research into strategies to improve practice. This should be prioritised using methods that include people with intellectual disabilities and families.
有证据表明，智障人士在获得医疗保健方面存在不平等现象，包括获得专科姑息治疗的机会，但迄今为止，尚未对实证证据进行系统审查。
确定智障成年人的姑息治疗需求以及他们在获得姑息治疗方面面临的障碍和促进因素。
采用叙述性综合方法进行系统评价（国际前瞻性系统评价注册中心（PROSPERO）注册号：CRD42019138974）。
2019 年 6 月在 MEDLINE、Embase、PsycINFO、Cochrane 图书馆和 CINAHL 等 5 个数据库进行了搜索，并进行了手工搜索和灰色文献搜索。所有研究设计均包括在内。
共确定了 52 项研究，这些研究均在高收入国家进行，其中大多数在英国（ = 28）。在所有研究中，共有 2970 名参与者，其中只有 1%是智障人士，1.3%是家庭成员；大多数（97%）是卫生/社会保健专业人员。确定的需求包括身体需求、心理社会和精神需求以及信息和沟通需求。障碍和促进因素与教育（例如，工作人员的知识、培训和经验）、沟通（例如，工作人员评估和满足有沟通困难的人的需求的技能）、协作（例如，持续多学科方法的重要性）以及卫生和社会保健服务（例如，人员配置水平、资金和管理支持）有关。
本综述强调了为智障成年人提供公平姑息治疗方面存在的具体问题，但缺乏改善实践的策略研究。应使用包括智障人士和家属在内的方法优先考虑这一点。
