National Survey of Bereaved People, 2011

The <I>National Survey of Bereaved People</I> (VOICES - Views of Informal Carers - Evaluation of Services) is an annual survey designed to measure the quality of end of life care. The VOICES survey particularly focuses on the last three months of life. Results are used to inform policy decisions and enable evaluation of the quality of end of life care by age group, sex, in different settings (home, hospital, care homes and hospices) and by different causes of death. Quality of end of life care is also included as an indicator in the NHS Outcomes Framework and the VOICES survey is used to monitor progress against this. <br>
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The Department of Health (DH) first commissioned the survey in 2011 to follow up on a commitment made in the End of Life Care Strategy. Previously, very little systematic information was available about the quality of care delivered to people approaching the end of life, despite reports from the Healthcare Commission and the Neuberger review highlighting deficiencies in care. The commissioning responsibility for the survey moved from DH to NHS England following the restructuring of the Health and Care systems in England in April 2013. <br>
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Each year a sample of approximately 49,000 adults who died in England is selected from the deaths registration database held by the Office for National Statistics (ONS). To ensure the sample represents the deaths in England for the given period and covers the key domains of interest, the sample is stratified according to the cause of death, place of death and geography. For the 2011 and 2012 surveys, geography was based on Primary Care Trust (PCT) clusters. For the 2013 survey onwards, this is based on NHS Area Teams (NHS Area Team 2013 has also been applied to the earlier datasets). <br>
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The VOICES questionnaire is sent by post to the person who registered the death of the deceased; this is usually a relative or friend of the deceased. Questionnaires are sent out between 4 and 11 months after the patient has died. As is standard in most postal surveys, if no response is received, this first questionnaire is then followed up with two reminders. Once fieldwork, data capture, cleaning and processing are complete, findings are disseminated at both the national and sub-national level.<br>
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Further information about the survey and links to related publications may be found on the ONS <a href="http://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/healthcaresystem/qmis/nationalbereavementsurveyvoicesqmi" title="National Bereavement Survey (VOICES) QMI">National Bereavement Survey (VOICES) QMI</a> webpage.<br>
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<b>End User Licence and Secure Access versions available</b><br>
The UK Data Service holds standard End User Licence (EUL) and Secure Access versions of the <I>National Survey of Bereaved People </I> data. EUL data are available to registered users but Secure Access data are only available to ONS Accredited Researchers (in addition, project approval and successful completion of a stringent training course are required before access can be granted). The Secure Access version contains finer detail variables (e.g. IMD deciles as opposed to quintiles in the EUL data, Strategic Clinical Network in addition to NHS Area Teams, and more detailed information on age, causes, dates and place of death). <b>Users are strongly advised to check whether the EUL data are sufficient for their research needs before making an application for the Secure Access version.</b><br>
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《全国丧亲者调查》（National Survey of Bereaved People，简称VOICES——非正式护理者视角·服务评估）是一项旨在评估临终关怀质量的年度调查。该调查特别聚焦于生命的最后三个月，其结果可用于为政策制定提供决策依据，并支持按年龄组、性别、不同照护场景（居家、医院、养老院、临终关怀院）以及不同死亡原因，对临终关怀质量进行评估。临终关怀质量同时也是英国国民保健制度（National Health Service，NHS）成果框架中的一项指标，VOICES调查可用于监测该项指标的推进进度。

英国卫生部（Department of Health，DH）于2011年首次委托开展此项调查，以落实《临终关怀战略》中的相关承诺。此前，尽管医疗保健委员会（Healthcare Commission）与纽伯格审查报告均指出了照护服务存在的不足，但针对临终人群所获得的照护质量，彼时几乎没有系统性的公开数据。2013年4月英格兰医疗与护理体系完成重组后，该调查的委托职责从卫生部转至英国国民保健制度英格兰分部（NHS England）。

每年，研究人员会从英国国家统计局（Office for National Statistics，ONS）所持有的死亡登记数据库中，抽取约4.9万名在英格兰境内死亡的成年死者作为研究样本。为确保样本能够代表对应时期内英格兰的死亡人群，并覆盖研究关注的核心领域，样本将按照死亡原因、死亡地点以及地理区域进行分层抽样。2011年与2012年的调查中，地理分层基于初级保健信托（Primary Care Trust，PCT）集群；2013年及之后的调查则基于国民保健制度区域团队（NHS Area Team），且该分层标准已回溯应用于早期数据集。

VOICES调查问卷将通过邮寄方式发送给死者的死亡登记人，通常为死者的亲属或好友。调查问卷会在患者死亡后4至11个月间寄出。与多数邮寄调查的标准流程一致，若未收到有效回复，首次寄出的问卷将跟进两次提醒。在实地调查、数据采集、清洗与处理工作全部完成后，调查结果会在全国及地方层面公开发布。

关于该调查的更多信息以及相关出版物链接，可查阅英国国家统计局官网的《全国丧亲者调查（VOICES）质量与方法信息》页面，链接为：http://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/healthcaresystem/qmis/nationalbereavementsurveyvoicesqmi。

**提供最终用户许可版（End User Licence，EUL）与安全访问版数据集**
英国数据服务中心（UK Data Service）持有《全国丧亲者调查》的EUL版与安全访问版数据集。EUL版数据面向已注册用户开放，而安全访问版数据仅对获得英国国家统计局认证的研究人员开放（此外，申请人还需通过项目审批并完成严格的培训课程，方可获得访问权限）。安全访问版数据集包含更精细的变量细节：例如，社会剥夺指数（Index of Multiple Deprivation，IMD）在EUL版数据中为五分位分组，而安全访问版则为十分位分组；除国民保健制度区域团队外，还包含战略临床网络信息，以及关于死者年龄、死亡原因、死亡日期与死亡地点的更详细信息。强烈建议用户在申请安全访问版数据集前，先确认EUL版数据是否能够满足自身的研究需求。