Supporting people bereaved during COVID-19: a mixed methods study of bereaved people's experiences and the bereavement services supporting them

2019冠状病毒病危机期间失去亲人的人们面临着重大挑战，这些挑战塑造了他们的悲伤经历。许多Covid-19死亡的突然性以及限制家人与患者接触的感染控制措施增加了死者家属的痛苦。无论死因是新型冠状病毒肺炎还是其他疾病/事件，社交距离措施意味着家庭成员独自悲伤，哀悼活动被中断。来自黑人和少数族裔群体（BAME）的人尤其受到新冠肺炎的影响，在获得丧亲服务方面也遇到了障碍。新型冠状病毒疫情亦为丧亲服务带来重大挑战。本研究旨在探讨疫情期间丧亲者的悲伤经历、支持需求和丧亲支持的使用情况，以及提供公平丧亲支持所涉及的适应、挑战和创新。我们将在三个工作包中使用定性和定量方法：工作包一涉及在三个时间点进行的英国范围内的调查：基线，7和13个月后死亡。招聘将通过社交媒体，代表BAME团体的组织和丧亲组织进行。问题将调查在新冠肺炎期间的临终和死后经历的影响，以及随后获得丧亲支持的机会、需求和经历。经验证的措施将评估悲伤和应对反应，社会支持，长期悲伤障碍（PGD）和生活质量（QoL）。第二套工作包括在每轮调查结束后，以半结构式电话访问部分受访者。访谈将探讨新冠肺炎期间的悲伤和丧亲经历，包括丧亲支持的使用和未满足的支持需求。在选择访谈参与者时，将优先考虑来自黑人、亚裔和少数族裔背景的人，以及调查答复显示需求未得到满足、脆弱性更大和结果更差的人，以便能够探讨大流行期间的具体挑战。第三套工作将包括对丧亲服务提供者进行在线调查。该调查将确定在大流行期间提供无障碍丧亲护理的服务调整、主要挑战和方法。调查结果将为通过电话访谈进行的有针对性的案例研究提供信息，以描述创新做法。这项研究是与公共捐助者共同开发的，将确定在大流行期间和之后提供临终关怀和丧亲支持的“实时”影响。它将使我们能够建议如何实现公平和有效的丧亲支持，丧亲支持工作者所需的流行病特定能力以及应在区域和国家层面优先考虑的特定类型的支持，同时始终努力确保迅速转化为实践。

People bereaved during the Covid-19 crisis face significant challenges that shape their experiences of grief. The sudden nature of many Covid-19 deaths and infection control measures that limit family contact with patients adds to the distress of the bereaved. Whether the cause of death is Covid-19 or another illness/event, social distancing measures mean that family members grieve alone and mourning practices are disrupted. People from Black and minority ethnic groups (BAME) are particularly affected by Covid-19 and also experience barriers to accessing bereavement services. Covid-19 has also brought significant challenges for bereavement services. Social distancing requirements make usual in-person individual and group bereavement support impossible, whilst responding to abnormal bereavement requires additional competencies among staff.This study aims to investigate the grief experiences, support needs and use of bereavement support by people bereaved during the pandemic, and the adaptations, challenges and innovation involved in delivering equitable bereavement support. We will use qualitative and quantitative methods in three work packages: Work Package One involves a UK wide survey administered at three time points: baseline, 7 and 13 months post-death. Recruitment will be via social media, organisations representing BAME groups, and bereavement organisations. Questions will investigate the impact of end-of-life and post-death experiences during Covid-19 and subsequent access to, needs for and experiences of bereavement support. Validated measures will assess grief and coping response, social support, prolonged grief disorder (PGD) and quality of life (QoL). Work Package Two involves semi-structured telephone interviews with a selection of survey respondents after each survey round. The interviews will explore experiences of grief and bereavement during Covid-19, including bereavement support use and unmet needs for support. When selecting interview participants, priority will be given to people from BAME backgrounds and those whose survey responses indicate unmet needs, greater vulnerability and poorer outcomes, to enable exploration of specific challenges during the pandemic. Work Package Three will include an online survey of bereavement service providers. The survey will identify service adaptations, key challenges and approaches to delivering accessible bereavement care during the pandemic. Survey findings will inform targeted case studies, developed via telephone interviews, to describe innovative practice. This study, developed with public contributors, will identify 'real-time' implications for the delivery of end-of-life care and bereavement support during and beyond the pandemic. It will enable us to recommend how to achieve equitable and effective bereavement support, pandemic-specific competencies needed by bereavement support workers and specific types of support that should be prioritised at regional and national levels, whilst working throughout to ensure prompt translation into practice.