Title: How does choosing to fundraise in memory impact the bereavement journey? A qualitative study
Funder: Marie Curie

Abstract: Background Bereavement has a significant long-term emotional and social impact. One model of grief suggests it does not always decrease over time, but instead life around grief increases. This means that interactions following the loss of a loved one are a critical part of the bereavement process. Following a loss, many people choose to donate or fundraise. Legacy Foresight research found that ‘one third of adults have given money in memory over the past 12 months, and this giving totals over £2 billion a year’ . However, there is little research into the role of fundraising as part of the bereavement process. Existing studies focus on physical memorials or individual experiences. Charity staff may be unsure of how to speak to bereaved people, and whether fundraising is helpful in their bereavement journey or not. Aim: To understand if and how fundraising supports the bereavement experience, what fundraising activities deliver positive impact, and if there are activities or communications that are detrimental. Methods Design: Qualitative interview study, with PPI discussion group and bereavement counsellor consultation. Participants: 15-20 participants who have undertaken fundraising within 2 years of bereavement. Recruitment: Fundraising. Sample: Regionally/geographically stratified. Data Collection: Virtual semi-structured interviews. Questions exploring type of fundraising and social/emotional impacts. Analysis: Part 1: Interviews transcribed and anonymised. Thematic Analysis used in NVivo to develop initial themes. Part 2: Discussion and finalisation of key themes in collaboration with diverse PPI group and bereavement counsellor. Implications Findings will inform our understanding of fundraising following bereavement. Outputs: - Paper/report outlining the evidence base for the impact of fundraising on bereavement - Cascade impact opportunities to other organisations. Eg: Fundraising/bereavement conferences. Outcomes: - Tailored fundraising communications and options when someone has been bereaved - Stronger, more informed conversations when a bereaved person undertakes fundraising - Ultimately, a better experience for bereaved individuals who choose to fundraise

Lay abstract: For people facing the loss of a loved one due to a terminal condition, there may have been considerable contact with the charity sector during their illness. As a result, many choose to ‘give back’ or take part in fundraising activity during their bereavement journey. We know that bereavement is a long term, complex process that impacts individuals differently. What we do not know is the impact of fundraising in that experience and whether it offers a helpful point of focus, or if there are specific challenges that need to be better understood. Anecdotally, there are thousands of family members and friends who have undertaken significant fundraising activity in memory of a loved one and spoken positively about it; but we do not know the full emotional and social impact of this, when viewing it as part of their bereavement experience. It is important that we gain a deeper understanding of the impact fundraising has following bereavement. Findings from this study will help to inform both fundraising and service delivery professionals about the overarching role fundraising can play, but also about the differing impact of different types of fundraising. We want to understand both what provides a helpful mechanism for those who want to do fundraising, but also what doesn’t and what considerations need to be in place specifically for those who have been bereaved. Our study will interview around 20 people who have undertaken fundraising in various ways for Marie Curie following a bereavement, to better understand their experience. The findings will be discussed at a Patient and Public Involvement (PPI) meeting and analysed in consultation with a bereavement coordinator. The information from this study will help us to understand how best to support people living through bereavement when undertaking fundraising, ultimately leading to better experiences, driven by robust evidence.

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