Coping and wellbeing in bereavement: two core outcomes for evaluating bereavement support in palliative care
Coping and wellbeing in bereavement: two core outcomes for evaluating bereavement support in palliative care
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DOI：
10.1186/s12904-020-0532-4
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发表时间：
2020-03-12
影响因子：
3.1
通讯作者：
Longo, Mirella
中科院分区：
文献类型：
--
作者：
Harrop, Emily;Scott, Hannah;Longo, Mirella
研究背景丧亲支持是姑息治疗的核心部分。然而，由于用于评估服务和支助模式的结果缺乏一致性，证据基础受到限制，这使得比较各种方法变得困难。核心结果集(COS)代表在研究特定条件或服务时应衡量的最低限度。这项研究的目的是使用利益相关者的视角来开发一种COS，用于评估成人姑息护理环境中成年人的丧亲支持。方法在对定量和定性文献进行系统回顾后，创建与丧亲支持相关的结果列表。在一次专家研讨会上，21个利益攸关方讨论了他们对最重要成果的看法，并将这些意见与审查形成的清单进行了比较和批评。这些清单和讨论促成了一项两轮国际德尔福调查(n=240)，旨在就COS中应包括哪些结果/结果维度达成共识。为了对调查中出现的项目进行优先排序和验证，参与者在随后的共识日对这些项目的相对重要性进行了排名(n=23)。对这些协商一致日的参与者进行了最后的反馈活动，以确认结果和维度的选择。结果“应对悲伤的能力”和“生活质量和心理健康”被选为两个核心结果。在评估这些结果时，还确定了21个不同的维度。与应对相关的维度被归类为：消极和压倒性的悲痛；沟通和联系；理解、接受和在悲痛中找到意义；在悲痛和未来的生活之间找到平衡；获得适当的支持。与生活质量和幸福感有关的问题被归类为：参与工作和/或常规活动；人际关系和社会功能；积极的精神健康和消极的精神和情绪状态。结论这份COS为丧亲研究人员和从业者勾勒出了一条更一致的前进道路，同时也面向公共卫生和基于复原力的丧亲护理方法。计划开展进一步的工作，以确定和制定针对这一核心成果集的措施，这些措施将有助于今后丧亲服务和干预措施的可比性。
Background Bereavement support is a core part of palliative care. However, the evidence base is limited by a lack of consistency in the outcomes used to evaluate services and models of support, which makes it difficult to compare approaches. Core Outcome Sets (COS) represent the minimum that should be measured in research into specific conditions or services. The aim of this study was to use a stakeholders' perspective to develop a COS for evaluating bereavement support for adults in adult palliative care settings. Methods A list of outcomes relevant to bereavement support was created following a systematic review of the quantitative and qualitative literature. At an expert workshop 21 stakeholders discussed their views on the most important outcomes and compared these to and critiqued the lists constructed from the review. These lists and discussions informed a two round international DELPHI survey (n = 240) designed to reach consensus on which outcomes/outcome dimensions should be included in the COS. To prioritise and validate the items emerging from the survey, participants at a subsequent consensus day ranked the relative importance of these items (n = 23). A final feedback exercise with these consensus day participants was conducted to confirm the selection of outcomes and dimensions. Results 'Ability to cope with grief' and 'Quality of life and mental wellbeing' were selected as two core outcomes. Twenty-one different dimensions to explore when assessing these outcomes were also identified. The coping related dimensions have been categorised as: Negative and overwhelming grief; Communication and connectedness; Understanding, accepting and finding meaning in grief; Finding balance between grief and life going forwards; Accessing appropriate support. Those relating to quality of life and wellbeing have been categorised as; Participation in work and/or regular activities; Relationships and social functioning; Positive mental wellbeing and Negative mental and emotional state. Conclusion This COS outlines a more consistent way forward for bereavement researchers and practitioners, whilst also orientating towards public health and resilience-based approaches to bereavement care. Further work is planned to identify and develop measures which are specific to this core outcome set, and which will facilitate the future comparability of bereavement services and interventions.