BeCOVID

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

Summary

COVID-19 is impacting the grief experiences of people bereaved during the pandemic, whilst also affecting the bereavement services that support them. This mixed methods study investigates the experiences and needs of bereaved people and bereavement services in three work packages (WPs):

WP1: A UK survey at three time points: baseline, seven and 13 months post-death. Recruitment will be via social media, organisations representing minority ethnic 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).

WP2: Semi-structured telephone interviews with a sample of respondents after each survey round will explore experiences of grief and bereavement during COVID-19, including bereavement support and unmet needs.

WP3: An online survey of bereavement service providers 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. The study will identify ‘real-time’ implications for the delivery of end-of-life care and bereavement support
during and beyond the pandemic and ensure prompt translation into practice.

Aims

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.

Specific objectives include:

• 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.
• 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.
• Determine and explore the perceived helpfulness of the different types of support and any unmet needs.
• Determine factors associated with grief responses over time, including indications for prolonged grief disorder (PGD).
• Examine relationships between the timing and type of support accessed, economic impact, perceived helpfulness of the support and grief responses.
• Amongst bereavement service identify service adaptations, key challenges and approaches to delivering accessible bereavement care and explore innovative practice in depth.
• Identify and report real-time implications for improving end-of-life and bereavement care during the pandemic.

Progress

• The first-round survey went live at the end of August 2020 and closed at the end of December 2020, with 747 participants (pre-screened figures).
• 77% of first round respondents agreed to being sent a second-round survey (at seven month timepoint) and these began on 19 November 2020.
• First report of interim results published on the project website on 27th November 2020.

Ethics approval

Cardiff University School of Medicine Research Ethics Committee SMREC 20/59.

Research networks

Dissemination via bereavement networks and organisations including project partners: The National Bereavement Alliance, Marie Curie, CRUSE Bereavement Care, The Good Grief Trust.

Information