Supporting lay carers in end of life care: current gaps and future priorities
Supporting lay carers in end of life care: current gaps and future priorities
复制标题
DOI：
10.1177/0269216309104875
复制
发表时间：
2009-06-01
影响因子：
4.4
通讯作者：
Todd, C.
中科院分区：
文献类型：
--
作者：
Grande, G.;Stajduhar, K.;Todd, C.
非正式护理人员是实现临终关怀和在家中死亡的关键，也是实现使病人能够选择临终的政策目标的关键。他们为我们的经济做出了巨大的，但隐藏的贡献。这给照料者带来了相当大的个人费用，人们认识到，应当评估和满足他们的需求。然而，我们缺乏关于如何最好地做到这一点的良好研究证据。本立场文件概述了照料者研究的现状、差距和弱点，并概述了今后的优先事项。它借鉴了一个全面审查的照顾文学和共识会议的专家在该领域。照顾者的需要和照顾的负面影响已经得到了广泛的研究。相比之下，我们缺乏实证纵向研究和概念模型，以建立如何通过适当的支持，可以防止不利影响。反应性的“修复”方法占主导地位。对现有干预措施的评价提供的信息有限，原因是设计的严谨性有限，而且所评价的干预措施种类繁多。需要进一步研究照顾者作为客户和提供者的双重角色对干预措施设计带来的特殊挑战，这表明未来需要强调照顾和赋权的积极方面。我们需要更多的纵向研究和用户参与，以帮助干预措施的发展和更多的实验和准实验研究，以评估他们，更好地利用内部和国际差异提供的服务提供的自然实验。姑息医学（2009）;23：339-344
Informal carers are central to the achievement of end of life care and death at home and to policy aims of enabling patient choice towards end of life. They provide a substantial, yet hidden contribution to our economy. This entails considerable personal cost to carers, and it is recognised that their needs should be assessed and addressed. However, we lack good research evidence on how best to do this. The present position paper gives an overview of the current state of carer research, its gaps and weaknesses, and outlines future priorities. It draws on a comprehensive review of the carer literature and a consensus meeting by experts in the field. Carers' needs and adverse effects of caregiving have been extensively researched. In contrast, we lack both empirical longitudinal research and conceptual models to establish how adverse effects may be prevented through appropriate support. A reactive, "repair" approach predominates. Evaluations of existing interventions provide limited information, due to limited rigour in design and the wide variety in types of intervention evaluated. Further research is required into the particular challenges that the dual role of carers as both clients and providers pose for intervention design, suggesting a need for future emphasis on positive aspects of caregiving and empowerment. We require more longitudinal research and user involvement to aid development of interventions and more experimental and quasi-experimental research to evaluate them, with better utilisation of the natural experiments afforded by intra-and international differences in service provision. Palliative Medicine (2009);23:339-344