Life after childhood leukaemia: ‘It makes it easier that the research is so personal’

Research Lives: Avril Deegan PhD researcher at Dublin City University School of Psychology is looking at end-of-treatment experiences of childhood leukaemia survivors

You study cancer survivorship in children, adolescents and young adults. What inspired you to work in this area?

It’s from personal experience. Around 20 years ago I was diagnosed with acute lymphoblastic leukaemia, or known as ALL. I was so young, I was only five, I don’t really remember much about the treatment.

But I do remember nicer things like the fish tank and jerseys on the wall in the hospital in Crumlin, and spending time at Barretstown. I put the cancer behind me, and then later when I was studying psychology at Dublin City University I thought I’d like to give something back in this area, so I decided to do a PhD on survivorship.

What’s your PhD about?

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I’m looking at the end-of-treatment experiences of childhood leukaemia survivors and their parents, with a specific focus on social support, resilience and quality of life. Thanks to clinical research, most children who develop leukaemia now will survive it, more than 80 per cent, and that’s brilliant.

But when the child and the family leave the hospital behind it can be a time when things really hit them, and there can be anxiety about the impacts of the treatments and that disease might return. So I’m looking at that survivorship period from a psychological standpoint. There really hasn’t been much research done in this area.

What does the research involve?

I carry out my research primarily through Children’s Health Ireland (CHI) at Crumlin where I meet children under the age of 18 who have successfully completed treatment for leukaemia within the past five years, and their parents.

Children and their parents complete questionnaire-based surveys assessing their perceptions of social support, resilience and quality of life, as well as optional follow-up interviews to further explore their end-of-treatment experiences.

I work on it with my supervisors in DCU Dr Simon Dunne, Prof Pamela Gallagher and Prof Veronica Lambert, as well Prof Owen Smith and Dr Chiara Besani in CHI at Crumlin. It’s a big team effort and it’s great to have such positive support from the hospital, and of course, the families who take part.

And what keeps you going in the PhD?

It makes it easier that the research is so personal and what keeps me going is meeting families every week and knowing you could make even a slight difference. I’m also really grateful for all the support I get from my supervisors – Owen Smith was my consultant haematologist when I was sick, and it’s a privilege to work with him now on this – and to Breakthrough Cancer Research and the Irish Research Council for funding the project.

You are a highly successful athlete, tell us about that part of your life.

I’m on a sports scholarship in DCU and recently won student-athlete of the year. I have run internationally for Ireland and I run with Dublin city Harriers. I run cross-country and middle distance on the track. I find that running offers a great balance to the academic work, you can get out and active and clear the head. It helps keep the mind focused and the body fit.

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Claire O'Connell

Claire O'Connell

Claire O'Connell is a contributor to The Irish Times who writes about health, science and innovation