Title: The long-term grief experiences and support needs of people bereaved during the Covid-19 pandemic: cohort survey 4th timepoint
Funder: Marie Curie

Abstract: Bereaved people have varying needs for support. In non-pandemic times it is estimated that around forty percent of adults will need formal bereavement or mental-health support, with emerging evidence that this proportion will increase as a result of the pandemic. Delayed grief and help-seeking behaviours have been observed during the pandemic, suggesting that there may be longer-term and more complex needs for support amongst people bereaved at this time. The landscape of bereavement support has also changed, with a proliferation of remote and online forms of provision. Building on these service innovations and finding the right balance of support-types to meet service-user demand and preferences is the challenge and opportunity of the late/post-pandemic period. Our current national longitudinal study, finishing in February 2022, has involved three survey-rounds with a cohort of people bereaved between March and December 2020. The third survey was completed c.13 months post-bereavement. We propose to conduct a fourth follow-up survey with this cohort approximately two years post-bereavement. We will use descriptive statistics to describe; the prevalence of Prolonged Grief Disorder (PGD) and resilience (measured by TGI and AAG grief scales), wellbeing (ONS wellbeing scale) and support needs (own scale); support use according to type and mode of support, and barriers to accessing support. We will also explore preferences for different types and modes of support (e.g. group v. individual, face-to-face, online, self-directed). Thematic analysis will be used to analyse free-text data on experiences, preferences and needs. The project will provide evidence on longer-term and potentially delayed grief reactions, support needs and help-seeking behaviours/barriers to accessing support. It will also provide evidence on preferences for different types and modes of provision. This has been requested by our partner-stakeholders and will inform the planning, design and delivery of relevant bereavement services in the late/transition stages of this pandemic.

Lay abstract: Bereaved people have varying needs for support. Before the Covid-19 pandemic it was thought that around four in ten bereaved adults would need support from bereavement or mental health services. This has increased as a result of the pandemic, with bereaved people also thought to be seeking help later and experiencing longer-term and more complex needs for support. The delivery of bereavement services has also changed during the pandemic with a reduction in traditional face-to-face models of support and increased provision of telephone and internet-based approaches. It is important to build on these changes by finding the right balance of support types based on the preferences and needs of bereaved people. Our current study, due to finish in February 2022, has involved three survey rounds with people bereaved during the first ten months of the pandemic (March-December 2020), with the third survey completed around 13 months after the death of their friend/relative. We would like to conduct a fourth follow-up survey with this group of people at around two years post-bereavement to see; • How their grief is affecting them and how they are coping; • What types of support they have been receiving or may still need; • Any difficulties they may have experienced getting the support that they need and • What types of support they prefer (e.g. group v individual, face-to-face, online, self-directed). We will collect this information by repeating some of the questions used in the previous surveys, and including additional new questions tailored to this survey. Numerical (quantitative) and text/written (qualitative) responses will be collected. Quantitative data will be analysed and presented as descriptive statistics (e.g. percentages, graphs) and qualitative data as themes with illustrative quotes from participants. The project will help inform the planning, design and delivery of relevant bereavement support services in the later stages of this pandemic.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS;7.2 END OF LIFE CARE
Health categories: GENERIC HEALTH RELEVANCE