Bunn Frances, Sworn Katie, Brayne Carol, Iliffe Steve, Robinson Louise, Goodman Claire
Centre for Research in Primary and Community Care, University of Hertfordshire, Hatfield, Hertfordshire, UK.
Social Policy Research Unit, University of York, York, UK.
Health Expect. 2015 Oct;18(5):740-53. doi: 10.1111/hex.12162. Epub 2013 Nov 28.
Involving service users in the systematic review process is seen as increasingly important. As systematic reviews often include studies from diverse settings and covering a time span of several decades, involving service users in consideration of applicability to specific populations or settings might make reviews more useful to practitioners and policymakers.
To test and contextualize the findings of a systematic review of qualitative studies looking at patient and carer experiences of diagnosis and treatment of dementia.
Results from the systematic review were discussed in focus groups and semi-structured interviews with patient, public and professional participants in the South East of England. Analysis was guided by coding frameworks developed from the results of the systematic review.
We recruited 27 participants, including three people with dementia, 12 carers, six service providers and five older people without dementia.
Findings from the focus groups and interviews were consistent with those from the systematic review and suggest that our review findings were applicable to the local setting. We found some evidence that access to information and diagnostic services had improved but, as in the systematic review, post-diagnosis support was still often experienced as inadequate.
Focus groups and interviews with service users and their representatives can provide useful contextual information. However, such strategies can require considerable investment of the part of the researcher in terms of time and resources, and more work is needed to refine strategies and establish the benefits for patients and the organization of services.
让服务使用者参与系统评价过程日益受到重视。由于系统评价通常纳入来自不同背景且涵盖数十年时间跨度的研究，让服务使用者参与考量对特定人群或背景的适用性，可能会使评价对从业者和政策制定者更具实用性。
对一项关于痴呆症患者及照料者诊断与治疗体验的定性研究系统评价的结果进行检验并结合具体情境分析。
在英格兰东南部，通过焦点小组以及与患者、公众和专业参与者进行的半结构化访谈，对系统评价的结果进行了讨论。分析以根据系统评价结果制定的编码框架为指导。
我们招募了27名参与者，包括3名痴呆症患者、12名照料者、6名服务提供者和5名无痴呆症的老年人。
焦点小组和访谈的结果与系统评价的结果一致，表明我们的评价结果适用于当地情况。我们发现一些证据表明信息获取和诊断服务有所改善，但与系统评价一样，诊断后的支持仍常常被认为不足。
与服务使用者及其代表进行焦点小组和访谈可以提供有用的情境信息。然而，此类策略可能需要研究者在时间和资源方面投入大量精力，还需要开展更多工作来完善策略，并确定对患者和服务机构的益处。
