The Checking Out project will explore attitudes towards death and dying in low-income communities, and look at the relevance of current public health approaches to meet the needs of people affected by poor health, and their carers, in later life.
When: Jan 2020 – Oct 2021
Where: Low-income areas within the UK
Why: In the UK the Department of Health adopted an End of Life Care Strategy in 2008 and there is a growing recognition of the need to address palliative care as a public health issue, encouraging early intervention to ‘reduce harms related to ignorance, fear, social distancing and isolation, stigma and prejudice’ (Kellehear 2013). At the same time research shows that people with a lower socio economic status are less likely to access palliative care services (Buck et al 2018), and that inequalities in access are actually increasing (Sleeman et al 2016).Given the UK’s ageing population, the crisis in health and social care and the recognition that inequalities accumulate across the life course, end-of-life care for people in lower socio-economic groups is a key issue.
The research aims to:
- explore the notion of ‘a good death’, and how people talk about and view death and dying, within low-income communities,
- explore possibilities for new ways of introducing and talking about death that are relevant to the needs and fears of people living on a low-income at different life stages
- understand how fear, stigma and trust impact on communication and access to care
- Working alongside local communities and using mixed qualitative methods
- Focusing on the views and experiences of those living on a low-income
- Two strands; less formal community activities, and more in-depth interviews and focus groups
- Informal visits to existing groups and community settings to start conversations about the research and find out which particular topics are important to people.
- If people are interested, involve them in creating the topic guides for focus groups and interviews, to make sure they are relevant and accessible.
- Use the ‘Departure Lounge’ pop-up installation to prompt conversations and discussion about death and dying in community settings e.g. community centres, community cafes, public spaces and events such Exeter Respect Festival and Pride. The Departure Lounge installation was created by the Academy for Medical Science, find more info here https://acmedsci.ac.uk/policy/policy-projects/the-departure-lounge
6-8 Focus groups: (4-6 participants in each one) within low-income communities, in local settings where people feel comfortable e.g. community centres. Focus groups will look at materials such as the ‘Dying Matters’ campaign leaflets and discuss feelings, thoughts and reactions to these materials and the issues they raise. Topics may include people’s fears in relation to end-of-life, their perceptions of a good death, and their feelings about talking about and/or preparing for death within their own life context, but no-one has to discuss anything that they do not want to.
10 Interviews: For people who would prefer to discuss their views and experiences in a one-to-one setting, or for focus group participants who would like to discuss their personal experiences in more depth. The interviews will be informal conversations and the participants can choose what they would like to discuss, but this may include experiences of end-of-life with family members or friends, feelings in relation to considering their own end of life and their views on the value of preparing for death, either for themselves or family members.
Practicalities: Focus groups and interviews will take place at a time and venue to suit the people taking part. Participants will receive £25 as a thankyou for their time, and travel and/or childcare expenses will be paid.
Impact: By increasing our understanding of the barriers to considering and preparing for end-of-life, the research will help inform service-providers (within and beyond healthcare) about effective ways to address current inequalities in access to care.
June 2020 – Update in relation to Covid-19
Obviously some of the research activities that were planned as part of the ‘Checking Out’ project have had to be suspended due to the current Covid-19 situation (e.g. community activities, focus groups). However I have ethical approval to carry out some online / telephone interviews which will take place over the next 4 months:
- 15 interviews with professionals involved in supporting individuals through end-of-life and bereavement in low-income communities. These may include, for example, funeral directors, funeral celebrants, policy officers at relevant charities supporting people in poverty, faith leaders working in communities that represent the most deprived quintile of the overall Index of Multiple Deprivation. I will explore their experiences of supporting individuals and families experiencing funeral poverty, both during and pre-pandemic.
- 15 individuals with people who have lived experience of funeral poverty, or of supporting someone through end-of-life whilst living on a low-income, within the last five years.
If you are interested in participating or would like to know more about this research please do get in touch firstname.lastname@example.org.
Contact: Please feel free to contact the researcher, Lorraine Hansford, with any queries, comments or suggestions. If you would like to suggest groups / contacts I could get in touch with to talk about the project I would love to hear from you.
Phone: 01392 722578