Aims: To synthesize the qualitative evidence of the views and experiences of people living with dementia, family carers, and practitioners on practice related to nutrition and hydration of people living with dementia who are nearing end of life.
Design: Systematic review and narrative synthesis of qualitative studies.
Data sources: MEDLINE, Embase, PsycINFO, CINAHL.
Review methods: Databases were searched for qualitative studies from January 2000-February 2020. Quantitative studies, or studies reporting on biological mechanisms, assessments, scales or diagnostic tools were excluded. Results were synthesized using a narrative synthesis approach with thematic analysis.
Results: Twenty studies were included; 15 explored the views of practitioners working with people living with dementia in long-term care settings or in hospitals. Four themes were developed: challenges of supporting nutrition and hydration; balancing the views of all parties involved with 'the right thing to do'; national context and sociocultural influences; and strategies to support nutrition and hydration near the end of life in dementia.
Conclusion: The complexity of supporting nutrition and hydration near the end of life for someone living with dementia relates to national context, lack of knowledge, and limited planning while the person can communicate.
Impact: This review summarizes practitioners and families' experiences and highlights the need to include people living with dementia in studies to help understand their views and preferences about nutrition and hydration near the end of life; and those of their families supporting them in the community. The review findings are relevant to multidisciplinary teams who can learn from strategies to help with nutrition and hydration decisions and support.
目的: 综合痴呆患者、家庭护理员以及执业医师对与痴呆患者临终前的营养和水分补充相关实践的观点和经验的定性证据。 设计: 对定性研究进行系统评估和叙事综合。 数据来源: MEDLINE、Embase、PsycINFO和CINAHL。 评估方法: 对数据库自2000年1月至2020年2月期间的数据进行检索。不包括定量研究或生物机制的研究报告、评估、量表或诊断工具。使用叙事综合方法和主题分析,以综合汇总结果。 结果: 共纳入20项研究。其中,15项探讨了在长期护理环境或医院为痴呆患者服务的执业医师的观点。其中,4项主题探讨了:提供营养和水分补充所面临的挑战;平衡‘正确做法’涉及的各方观点;国家背景和社会文化影响;以及为痴呆患者在临终前提供营养和水分补充的策略。 结论: 为痴呆患者在临终前提供营养和水分补充的复杂性,与国家背景、知识匮乏和在患者可以交流时的有限规划有关。 影响: 本评估概述了执业医师和家庭的经验,强调了将痴呆患者纳入研究的必要性,以帮助理解他们在临终时的观点和对营养和水分补充的偏好;以及那些在社区中支持他们的家庭。评估研究结果与多个专业团队有关,其可从策略中进行学习,以帮助做出营养和水分补充的决定和支持。.
Keywords: artificial nutrition and hydration; carers; dementia; end of life; experiences; nurse; nutrition and hydration; practitioners; qualitative; systematic review.
© 2020 The Authors. Journal of Advanced Nursing published by John Wiley & Sons Ltd.