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Professor is Professor of Intellectual Disability and Palliative Care in the Centre for Health and Social Care Research at Kingston University, London. She holds the world's first Chair of Intellectual Disability & Palliative Care.

Her research has focused on the experiences of people with intellectual disabilities around dying, death and bereavement; communication and breaking bad news to people with intellectual disabilities; and the provision of palliative care, including end-of-life care planning. Irene chairs the Reference Group for Intellectual Disabilities of the European Association of Palliative Care EAPC. She won the 2017 EAPC Post-Doctoral Research Award and was named ‘Pioneering Nurse’ in the St Christopher's 2020 Palliative Nursing awards. Irene serves on the editorial boards of the Journal of Applied Research in Intellectual Disabilities and the British Journal of Learning Disabilities. She is founding trustee of the UK based (but international) Palliative Care of People with Learning Disabilities Network (PCPLD).

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Emily Adam (EA). What is your background and what led you into the field of palliative care, and more specifically into palliative care for people with intellectual disabilities?

Irene Tuffrey-Wijne (ITW) I trained as a nurse in the Netherlands in the 1980s. I remember seeing a video of St Christopher's Hospice in London and it looked really interesting. In those days palliative care didn't exist in the Netherlands. I came to England for what I thought was six months to learn English, but that was about 40 years ago now! I lived within a , alongside people with intellectual disabilities for the first 8 years. Following this, I worked as a palliative care nurse at Trinity Hospice, London. I was surprised that during a five-year period, I encountered only one person with an intellectual disability on my ward. I just thought, where are they? Having learnt how to do a literature review on a course, I decided to look into this, and I found nothing! There wasn't a single article in the entire world on the experience of people with intellectual disabilities dying. So I wrote a case study, which was published in the Nursing Times, and for years that was the only thing. I was an overnight international expert in this field because there wasn't anything else! Several years later there was a lottery grant given to St George's University in London to improve cancer services for people with intellectual disabilities, so they headhunted me. I later did my PhD and have always stuck to this topic. It was hard for decades to get funding as people with intellectual disabilities were never seen to be important enough. But that’s changing. The pandemic helped put it on the map, for all the wrong reasons. Suddenly people realise that we know things that people need to know. The key is to really be inclusive in this research. If we’re looking at how to improve palliative care services for people with intellectual disabilities, well, they're the people we've got to work with, and their families and carers.

EA: Inclusion of people with intellectual disabilities as study participants and as salaried co-researchers is a key part of your work. Tell us more about this?

ITW: It’s taken me decades to learn what their contribution is, how important they are and how we have to approach things differently to accommodate them. I've learned to be quite brave and creative, and throw out the rule book about how you should do research. Standard methods of qualitative data collection e.g. interviews, focus groups, questionnaires etc. are only really accessible for people with mild disabilities, and even then you have to adapt them. There’s very few methods that you can use to include people with more severe disabilities. Ethnography is one of them, and I used this in my first study, where I just spent time with people and tried to be alongside them. Focus groups with people with intellectual disabilities often involve games or creative approaches such as washing lines representing a timeline, voting boxes and pictures. If people are enjoying themselves, they contribute more. Including a co-researcher with an intellectual disability in the focus group also helps people to open up. We have had to cut so much red tape to employ people, so that's been a lot of work, but it's really worth it and I have learnt so much from them. We also employ a support researcher who works alongside the person with intellectual disabilities. Our office is open plan, it's got funny hats and games and we sit around a table together. We have fun! We won three awards last year for the work that we do with the team. We’re experimenting all the time because every individual with an intellectual disability is different, and it takes a while to figure out what their skills are.

EA: What barriers to accessing palliative care do people with intellectual disabilities face?

ITW: One of the main barriers is incorrect assumptions about their quality of life, and what they can or cannot cope with. Also, they really rely on others to access services for and with them. Staff in a supported living environment often don't know about palliative care. So not having connections between palliative care services and intellectual disability services is a big barrier. There's also the issue of palliative care needs not being recognised. People with intellectual disabilities have a number of long -term conditions and often don’t fit a predictable trajectory. To identify when they might benefit from palliative care is much harder. Even palliative care professionals, who are so good at inclusion, are still not comfortable with these patients. To include people you have to change the way you work, and that is difficult. It's not just people with intellectual disabilities, it's underserved communities as well.

EA: Your career to date is impressive and inspiring. What’s been your proudest achievement in your academic career?

ITW: I find working with a large team of people with and without intellectual disabilities and the way we work together inspirational. It’s a really inclusive team. Other people are inspired by it too, so I think that is an achievement.

EA: What are you working on currently?

ITW: We’re coming to the end of a 2-year national project looking at how to involve people with intellectual disabilities in end-of-life care planning. Alongside people with intellectual disabilities, their families and support staff, we’ve co-produced a toolkit to help ensure people with intellectual disabilities are involved in their own care and the decisions made about them. It’s mostly pictorial but there’s also guidance about how you can support people who are nonverbal or communicate very differently. This exciting new resource will be available from 20th of June on this website:

EA: What key piece of advice would you give to palliative health care professionals caring for a patient with intellectual disabilities? And where should they look for resources?

ITW: You don't need to do anything strange or different, just talk to people and include them. Be sure to include the family or carers and the people around them who know them best, as they are part of your team. But the key thing is that however somebody communicates, whether it's with words, sounds or touch, just put them central. If you can give good support to that person, who communicates so differently, then you can do anything. You can support all your patients. People will recognise that you want a relationship with them, and you can't really get that wrong. You can get the words wrong, it doesn't matter. But just the fact that you want to relate to them and find out what life is like for them, that’s all you need.

For resources, they can come to my website and the toolkit when it’s available. Books Beyond Words is another great resource . Also the PCPLD YouTube channel .

EA: Last word is yours- any final message you'd like to convey?

ITW: It may sound strange to say, but it's fun to work with people with intellectual disabilities because they really do break down barriers. They don't care if you’re a professor or a street sweeper. They really want to know you, and that is a privilege. My final message is try and get it right, try to be with these people, because then you can do anything. The things you will learn about communicating are priceless.