Title: Supporting people bereaved during COVID-19: a mixed methods study of bereaved people's experiences and the bereavement services supporting them
Funder: Economic and Social Research Council

Abstract: Aim: To investigate the grief experiences, support needs and use of bereavement support by people bereaved during the Covid-19 pandemic, and the provision of bereavement support during this time. Specific objectives are to: 1. Explore how pandemic-specific death and social issues such as lack of contact, disrupted mourning rituals, isolation and job-loss impact on the grief experiences of people bereaved during the pandemic, and variation across demographic groups 2. Identify the types of support the bereaved have received, how they have accessed this support and potential barriers to access, including variation across demographic groups 3. Determine and explore the perceived helpfulness of the different types of support and any unmet needs 4. Determine factors associated with grief responses over time, including indications for prolonged grief disorder (PGD) 5. Examine relationships between the timing and type of support accessed, economic impact, perceived helpfulness of the support and grief responses 6. Among bereavement service providers, identify service adaptations, key challenges and approaches to delivering accessible bereavement care, and explore innovative practice in-depth 7. Identify and report real-time implications for improving end-of-life and bereavement care during the pandemic.

Lay abstract: 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.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS;8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: GENERIC HEALTH RELEVANCE;INFECTION