Preferences for end-of-life care: A nominal group study of people with dementia and their family carers
Preferences for end-of-life care: A nominal group study of people with dementia and their family carers
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DOI：
10.1177/0269216312464094
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发表时间：
2013-05-01
影响因子：
4.4
通讯作者：
Sampson, Elizabeth L.
中科院分区：
文献类型：
--
作者：
Dening, Karen H.;Jones, Louise;Sampson, Elizabeth L.
背景：痴呆症患者的愿望和偏好应该为未来护理的决策提供信息。然而，这样的决定往往留给家庭照顾者，可能无法反映痴呆症患者自己会做出的决定。我们对影响痴呆症患者和他们的照顾者之间意见一致的因素知之甚少。目的：探讨痴呆症患者及其护理人员是否能够产生并优先考虑临终关怀的偏好。我们研究了护理人员是否会影响痴呆症患者的选择。设计：标称成组技术。环境/参与者：痴呆症患者（n = 6），护理人员（n = 5）以及参加记忆评估服务的痴呆症患者和护理人员（n = 6）。方法：对三个改良的名义小组技术组进行了5个阶段的研究：(1)默想产生、(2)讨论、(3)进一步产生、(4)讨论和主题、(5)排序。使用NVIVO8记录、转录和分析讨论的主题内容。结果：护理质量、家庭联系、尊严和尊重被所有组列为重要主题。对记录的分析揭示了三个主题：护理质量、独立性和控制以及护理者负担。痴呆症患者很难考虑未来的自己。护理人员希望在生命结束时得到更多的控制，提出了辅助死亡和安乐死的问题。结论：痴呆症患者及其家庭护理人员的愿望和偏好可能有所不同。为了确保尊重痴呆症患者的意愿，应在他们考虑未来的能力受到损害之前，在疾病早期确定他们的意见。
Background: The wishes and preferences of people with dementia should inform decisions on future care. However, such decisions are often left to family carers and may not reflect those the person with dementia would have made for themselves. We know little about what influences agreement between people with dementia and their carers.Aim: To explore whether people with dementia and their carers were able to generate and prioritise preferences for end-of-life care. We examined whether carers influenced the choices made by the persons with dementia.Design: Nominal group technique.Setting/participants: People with dementia (n = 6), carers (n = 5) and dyads of people with dementia and carers (n = 6) attending memory assessment services.Methods: Three modified nominal group technique groups were conducted in five stages: ( I) silent generation of ideas, (2) discussion, (3) further generation of ideas, (4) discussion and themeing and (5) ranking. The discussions were recorded, transcribed and analysed for thematic content using NVIVO8.Results: Quality of care, family contact, dignity and respect were ranked as significant themes by all groups. The analysis of transcripts revealed three main themes: quality of care, independence and control and carer burden. People with dementia had difficulty considering their future selves. Carers wanted much control at the end of life, raising issues of assisted dying and euthanasia.Conclusions: Wishes and preferences of people with dementia and their family carers may differ. To ensure the wishes of people with dementia are respected, their views should be ascertained early in the disease before their ability to consider the future is compromised.