National Survey of Bereaved People, 2011

<P>Abstract copyright UK Data Service and data collection copyright owner.</P>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>
<br><br><B>Main Topics</B>:<BR>Date, cause and place of death; quality and standards of medical, nursing, social and pastoral care in the last three months of life; support for relatives/carers; demographics of deceased person and respondent.

本摘要版权归英国数据服务中心（UK Data Service）及数据采集版权所有者所有。

《全国丧亲者调查》（VOICES——非正式照护者视角：服务评估，全称为Views of Informal Carers - Evaluation of Services）是一项年度调查，旨在评估临终关怀质量。该调查特别聚焦于逝者临终前三个月的情况，其调查结果可用于辅助政策制定，并支持按年龄组、性别、不同照护场景（家庭、医院、养老院及临终关怀机构）以及不同死亡原因，对临终关怀质量进行评估。临终关怀质量同时被纳入英国国家医疗服务体系（NHS）成果框架，VOICES调查也被用于监测该框架下的工作进展。

英国卫生部（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，尽管英国医疗保健委员会（Healthcare Commission）与纽贝格评审（Neuberger review）均指出了临终关怀存在的不足，但针对临终人群所获照护质量的系统性数据仍极为匮乏。2013年4月英格兰医疗与照护体系重组后，该调查的委托职责由英国卫生部转至英国国家医疗服务体系英格兰分部（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去世的成年人作为调查样本。为确保样本能够代表对应时期内英格兰境内的死亡人群，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年及之后的调查则改为基于NHS区域团队（NHS Area Team），且2013年的区域团队划分标准也已应用于早期数据集。

调查问卷将通过邮寄方式发送给逝者的死亡登记人，通常为逝者的亲友。问卷会在患者去世后4至11个月间寄出。与多数邮寄调查的标准流程一致，若未收到回函，研究人员将跟进发送两次提醒。在实地调查、数据采集、清洗与处理工作完成后，调查结果将在全国及地方层面发布。

更多关于该调查的信息及相关出版物链接，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》（National Bereavement Survey (VOICES) QMI）页面，链接为：http://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/healthcaresystem/qmis/nationalbereavementsurveyvoicesqmi。

【提供终端用户许可版与安全访问版数据】
英国数据服务中心持有《全国丧亲者调查》的标准终端用户许可（End User Licence, EUL）版与安全访问版数据。终端用户许可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，申请者还需通过项目审批并完成严格的培训课程后方可获得访问权限）。安全访问版数据包含更精细的变量细节（例如，终端用户许可版数据仅包含多重贫困指数（Index of Multiple Deprivation, IMD）五等分数据，而安全访问版可获得IMD十分位数数据；除NHS区域团队外，还包含战略临床网络信息，以及关于逝者年龄、死亡原因、日期及地点的更详细信息）。强烈建议用户在申请安全访问版数据前，先确认终端用户许可版数据是否能够满足自身研究需求。

【核心主题】：死亡日期、死亡原因与死亡地点；临终前三个月内的医疗、护理、社会及精神牧灵关怀质量与标准；亲友/照护者支持服务；逝者与受访者的人口统计学特征。