University College London, London, UK.
Camden & Islington NHS Foundation Trust, London, UK.
Palliat Med. 2023 Sep;37(8):1047-1062. doi: 10.1177/02692163231175928. Epub 2023 Jun 9.
People with diagnoses of intellectual disability or serious mental illness have higher mortality rates due to physical comorbidities; better understanding is needed to guide best practice in provision of palliative care for these populations.
To identify multivoiced perspectives, drawn from lived experience of: what works, and what does not, in palliative care for people with intellectual disability or serious mental illness; challenges in, and opportunities to improve, palliative care.
A systematically constructed qualitative meta-ethnography. Protocol published (PROSPERO: CRD42021236616).
MEDLINE, PsychINFO, CINAHL PLUS and Embase used without date limitations. Papers published in English, containing qualitative data on palliative care provision for people with a diagnosis of intellectual disability or serious mental illness were included. Global five-point strength score applied for relevance/quality appraisal.
Familiarity (of location, people and/or things) is important for good palliative care. Assumptions and misunderstandings about the role of mental capacity assessment to appropriately involve the patient in decision-making are common. Adapting training for palliative care staff to address concerns and beliefs about mental illness is one of the methods that helps avoid diagnostic overshadowing. Proactive identification of service arrangements to meet needs of persons with personality, psychotic, delusional and bipolar affective disorders will help optimise care.
Evidence, including the voices of people with intellectual disability or serious mental illness is urgently needed to guide efforts to improve their access to and experience of palliative care. More evidence is especially needed to understand, develop and implement best practice for people with psychosis, bipolar affective disorder, mania and personality disorder.
患有智力障碍或严重精神疾病的人因身体合并症而死亡率较高；需要更好地了解，以指导为这些人群提供姑息治疗的最佳实践。
从智力障碍或严重精神疾病患者的生活经历中，确定多方面的观点：姑息治疗的有效方法和无效方法；姑息治疗的挑战和改进机会。
系统构建的定性元分析。方案已发表（PROSPERO：CRD42021236616）。
无时间限制地使用 MEDLINE、PsychINFO、CINAHL PLUS 和 Embase。纳入包含关于智力障碍或严重精神疾病患者姑息治疗提供的定性数据的英文发表论文。应用全球五分制强度评分进行相关性/质量评估。
熟悉（地点、人员和/或事物）对于姑息治疗很重要。人们对精神能力评估在适当让患者参与决策中的作用存在假设和误解。调整姑息治疗人员培训以解决对精神疾病的担忧和信念是避免诊断偏见的方法之一。主动识别满足具有人格、精神病、妄想和双相情感障碍的人士的服务安排将有助于优化护理。
迫切需要包括智力障碍或严重精神疾病患者的意见在内的证据来指导努力改善他们获得姑息治疗的机会和体验。特别需要更多的证据来理解、制定和实施针对精神病、双相情感障碍、躁狂和人格障碍患者的最佳实践。
