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

在2019冠状病毒病危机期间失去亲人的人面临着影响他们悲伤经历的重大挑战。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丧亲者的痛苦。无论死因是Covid-19还是其他疾病/事件，保持社交距离措施都意味着家庭成员独自悲伤，哀悼活动受到干扰。黑人和少数民族群体（BAME）受到Covid-19的影响尤其严重，他们在获得丧亲服务方面也面临障碍。Covid-19也给丧亲服务带来了重大挑战。保持社会距离的要求使通常的面对面个人和团体丧亲支持变得不可能，而应对异常丧亲需要工作人员具备额外的能力。本研究旨在调查大流行期间失去亲人的人的悲伤经历、支持需求和对丧亲支持的使用，以及在提供公平的丧亲支持方面所涉及的适应、挑战和创新。我们将在三个工作包中使用定性和定量方法：工作包一涉及在基线、死亡后7个月和13个月三个时间点进行的全英国调查。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2019冠状病毒病期间临终和死亡后经历的影响，以及随后获得、需要和经历的丧亲支持。有效的测量将评估悲伤和应对反应，社会支持，延长悲伤障碍（PGD）和生活质量（QoL）。工作包二包括在每一轮调查后与选定的调查对象进行半结构化电话访谈。访谈将探讨Covid-19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ame背景的人以及其调查答复表明需求未得到满足、脆弱性较大和结果较差的人，以便能够探索大流行期间的具体挑战。工作包三将包括丧亲服务提供者的在线调查。该调查将确定在大流行期间提供可获得的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开发的有针对性的案例研究提供信息，以描述创新实践。这项与公共捐助者共同开展的研究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。它将使我们能够就如何实现公平和有效的丧亲支助、丧亲支助工作人员所需的针对大流行病的能力以及在区域和国家一级应优先考虑的具体支助类型提出建议，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.