Talking about Death and Dying- online questionnaire to staff who work directly with people with learning disabilities, in registered care homes or supported living services

We are signing up to the TALKING ABOUT DYING survey

How often are [staff/support workers] confronted with dying, death and bereavement at work? It may be because one of the people with learning disabilities you support has just lost a parent. Perhaps their mother is terminally ill with cancer. Or it may be that someone within [our service] is coming to the end of their life – whether that is because of old age, dementia, cancer, or other life-limiting illness.

How do you cope? Do you talk about dying with the people you support? Or is it better not to talk about such distressing topics? How do you support people with severe communication problems, who may not understand what death is?

These are important questions for [our organisation]. That’s why we have linked up with a team of researchers at four universities in London, Cardiff, Glasgow and Ulster, to participate the a UK-wide Talking About Dying Survey of staff working in learning disability services. They will send an online questionnaire to staff who work directly with people with learning disabilities, in registered care homes or supported living services – and they need our help.

Dr Irene Tuffrey-Wijne, who worked at L’Arche before and is now based at Kingston University & St George’s, University of London (who leads the study) says:

“Our team has done a lot of research around learning disability, death and dying. We know this is a huge issue for services, as people are ageing and therefore more likely to develop life-limiting illnesses such as cancer. For example, there are growing numbers of older people with Down Syndrome who get dementia. In addition, people are more and more likely to experience the deaths of loved ones, including parents and housemates. We know this is one of the hardest things for staff to cope with. It’s hard enough for people who don’t have learning disabilities!

We have worked closely with people with learning disabilities, families and staff, to develop a questionnaire that will answer many of our questions. Exactly how often do staff in learning disabilities services have to cope with death, dying and bereavement at work? What are the most difficult issues? What is happening within services at the moment? How do staff currently support people with learning disabilities who are dying, or who are bereaved?

This is the first large scale study on this topic. We think it is really important, because it will help to develop the right kind of support and guidance for staff. The more staff members fill in the questionnaire, the better we can understand their problems, and the better we can address this issue – both within the organisations taking part in the survey, and on a national level.

The online survey is completely anonymous. We won’t even know which organisation the respondents work for. That means staff can feel free to be as honest as possible. And it doesn’t take too much time – about 20 minutes. We also want answers from staff who have had no recent experience of death, dying or bereavement at work – and for them, it will take only 5 minutes to complete the questionnaire.

If you would like more information or have any questions, please contact Claire Lam (Research Assistant)

Tel 020 8725 0116


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