Joanne Smithson, Head of Implementation & Learning, What Works Centre for Wellbeing explains more about the connection between loneliness and wellbeing and being diagnosed with a terminal illness. How can we support people with life-limiting illnesses to work while they are able to and want to?
How can we tackle loneliness in people living with terminal illness?
Our relationships and positive social connections are essential for us to thrive. If we feel lonely most or all of the time, it can have a serious impact on our wellbeing, and our ability to function in society. Being diagnosed with a terminal illness can be a lonely experience. The estimate is that around 100,000 people of working age are living with a terminal diagnosis, which is a significant number of individual lives at any one time.
In April and May 2021, the What Works Centre for Wellbeing brought together practitioners, academics and individuals to talk about what really matters to people with life-limiting or terminal illness. We also looked at how to develop support which puts their wellbeing, and that of their family and close relations, at its heart. The work identified six areas of research interest so that we can understand more fully what matters to people with terminal illness and how society can maximise their wellbeing for as long as possible.
The first piece of research we are undertaking, in partnership with Marie Curie, cuts across many of these areas of research interest: scoping the experience of terminal illness in working age people.
Work and wellbeing
We know that in the general population there is a strong link between employment and wellbeing, yet terminally ill people and those that care for them often find themselves giving up work and/becoming unemployed. The evidence on respecting and supporting grief at work is developing, driven in no small part by Marie Curie. In contrast, we have very little information on the experience of terminal illness in working-age people, and the employment policies and practices designed to support them.
Loss of income and the breakdown of relationships are two factors that can negatively affect the wellbeing of those living with a terminal illness, and employment can be important in helping to tackle this. We also found that feelings of autonomy, independence and the ‘what we do’ factor become crucial at this time. This is because employment affects so many of the drivers of wellbeing, specifically relationships, personal and family finances, and an individual’s skills.
Modern advances in palliative care are making it possible for many people diagnosed with a terminal illness to carry on working and therefore it’s right that employers are starting to expand their thinking about the culture and practice to support this group of people.
Supporting people to work while they are able, and to make appropriate decisions at a time of their choosing could be the key to this and we are trying to build up a picture of how this can be done best. To do this, we are asking organisations to share with us:
- Employers’ experiences of supporting employees with a terminal illness to continue in work. This can be submitted as a short written piece as a file (ie. PDF, Word, etc).
- Reports, case studies or other written materials that capture the experiences of employees who have received support to continue working with a terminal illness.
About the Dying Well work
Dying Well is a collaborative programme of work that began in partnership with Clair Fisher, a long-time collaborator of the Centre, who sadly passed away in January 2022.
The project explores:
- Making the case for putting wellbeing at the heart of palliative and end of life care and services, especially in Advance Care Planning conversations.
- Providing a space for practitioners to share their experience and insights of putting wellbeing the heart of hospice and palliative care.
- Showcasing research that can help policy makers and practitioners design better, wellbeing-focused services.
- Bringing together a collaborative network of interested practitioners, policy-makers and researchers to share learning and ideas.
If you are interested in finding out more about our Dying Well work you can visit our project page and read the blogs, practitioner conversations and listen to the podcast series. Keep up to date with our work by signing up to our mailing list.