Research study to help parents of children with cancer

A research study which aims to help parents at one of the most devastating times of their lives is currently underway thanks to funding from Nottingham Hospitals Charity.

A team from Nottingham University Hospitals (NUH) NHS Trust and the University of Nottingham is conducting the research, which aims to provide support for parents whose children have received a cancer diagnosis.

Researchers plan for the study to result in the development of new interactive resources to help parents understand and deal with the heart-breaking news.

Alison Smith, who is a co-researcher on the project, knows only too well how difficult it can be to come to terms with a childhood cancer diagnosis. Alison’s daughter, Rachel, was diagnosed with acute lymphoblastic leukaemia in 2005, just days before her fourth birthday.

She says: “It changes your life – everything suddenly changes. It’s the most shocking thing to be told your child might not survive, and then you have to live with that for the months and years to come.”

The research study aims to survey parents about what information would have helped them to understand and deal with their child’s cancer diagnosis, and use that information to create an online, interactive resource to help parents and carers in a similar situation in the future. The researchers hope that if parents and carers feel better informed, it will allow them and their children to cope better with what they are facing.

Alison says: “The ultimate goal is to provide support for parents and carers of children with cancer, because parents and carers want to be strong for their children. Young children often don’t worry about the future of a cancer diagnosis but as an adult you carry the emotional burden.

“As the parent of a child diagnosed with cancer it can have a huge psychological impact and it takes a massive toll on your mental wellbeing and your relationships. We want to put some support in place for those parents and carers.”

The study is being led by Dr Joseph Manning, a children’s nurse at NUH and researcher in the School of Health Sciences at the University of Nottingham.

Dr Manning said: “Parents and carers of children with cancer provide essential physical and emotional care, and advocacy in treatment decision-making. However, they have been found to be at risk of psychological distress.

“Particular areas of difficulty for carers include coming to terms with new medical information, sourcing information after treatment and coping with the psychosocial aspects of illness. Seeking information is a key coping strategy used by these carers to manage stressful aspects of caring. Increased carer knowledge facilitates involvement in their child’s care and improves psychological readiness and feelings of control.”

Nottingham Hospitals Charity, which supports patients and staff at NUH, gave £10,000 to kick-start the study. The Charity gives around £4m each year for enhanced facilities and services to benefit patients, including £250,000 a year to start up small research projects like this one.

Barbara Cathcart, Chief Executive of Nottingham Hospitals Charity, said: “We’re pleased to be able to support a variety of research projects at NUH. Thanks to our donors we’re able to contribute significant funds to kick start research projects like this, which would simply not happen without our charitable funding.

“The research we fund has the ultimate aim of benefiting patients from across the East Midlands, and it’s easy to see how this particular study could have a huge impact on young patients and their families at an extremely difficult point in their lives.”

Dr Manning and his team are now appealing for more parents and carers to take part in the study, which involves filling out questionnaires about their own experiences. Parents and carers who participate will also be invited to be involved in developing the online resources.

The study is open to parents / carers from the East Midlands, including Nottinghamshire, Derbyshire, Leicestershire, Lincolnshire and Northamptonshire, whose child is currently undergoing treatment or has recently completed treatment for any form of childhood cancer.

Dr Manning said: “I’d like to take this opportunity to thank Nottingham Hospitals Charity for providing funding for this project – without the charity this study would not have been possible. And I’d also like to urge more parents and carers to come forward to take part in the study, to help more families in the future.”

Anyone who is interested in taking part in the study can email info@mychildhascancer.co.uk for more information.

To make a donation to Nottingham Hospitals Charity to fund more research like this, please click here.

To find out more about Research and Innovation at NUH, including how you can get involved, please visit www.nuh.nhs.uk/research-innovation