Study into cancer care for autistic children and/or those with a learning disability begins

The study, led by GOSH Consultant Nurse and Senior Research Fellow Dr Kate Oulton, will observe the journeys of 30 children with cancer – many of whom will also be autistic and/or have a learning disability.

Through observations in clinics, arts-based activities and discussions with the families, as well as surveys and in-depth interviews with clinical staff, the team will seek to understand whether children’s additional needs are catered to, as well as their medical needs.

Every year, around 1,800 families in the UK are told their child has cancer. In fact, some cancers are more common in children with learning disabilities than in children without. For example, children with Down’s syndrome – a condition which typically presents some level of learning disability - are found to be 10 to 30 times more likely to get leukaemia than children without the condition.

We also know that many autistic children and/or those with a learning disability can face unique challenges when undergoing care and treatment. For example, being in unfamiliar and over-stimulating environments, struggling to have their needs and wishes understood by others and being unable to understand complex information.

However, research into how these issues impact their cancer care, treatment and recovery is extremely limited.

Dr Oulton and her team hope their study will pave the way for increased awareness and understanding among clinical staff of children’s additional needs and lead to more appropriately designed facilities and frameworks that support their requirements.

This would not only improve the experience of being in hospital for these children and their families, but could lead to a reduction in adverse health outcomes and negative long-term emotional impact.

It's possible that these changes will also positively impact families’ interactions and engagement with any future healthcare teams.

If successful, the findings from this study could help shape infrastructure and services for autistic children and/or those with a learning disability at GOSH's Children’s Cancer Centre, a state-of-the-art facility for which GOSH Charity is raising money to help build over the next five years.

“Our study into equitable care for children with cancer and who are autistic and/or have a learning disability has the potential to significantly improve the experiences and outcome for these families both in terms of their emotional well-being and physical health,” Dr Oulton explains.

“Throughout my career as a nurse and researcher I have worked closely with seriously ill disabled children with complex ongoing needs, and these children often find the experience of being in hospital particularly challenging. There is also generally a lower understanding of families’ additional needs when compared to their medical needs.

“This will be the first observational qualitative study in which families with these experiences are asked to share their perspective, and, with the building of GOSH’s Children’s Cancer Centre on the horizon, it felt like the perfect opportunity to conduct this research and inform how elements of the facility could look physically, as well as how we manage care and treatment.”

It is hoped that this research project will help children like 11-year-old Gabriel.

Gabriel, who is autistic and has ADHD, was treated at GOSH between 2018 and 2022 for stage four acute lymphoblastic lymphoma.

“Gabriel’s autism and ADHD caused him a lot of anxiety while he waited for procedures, and some of the chemotherapy drugs heightened these symptoms,” Gabriel’s mum Seyrah explains.

“He hated waiting and often felt hungry and frustrated due to not being allowed to eat before surgery.

“After being put to sleep to perform his lumbar punctures, Gabriel would wake up very confused and upset due to the side effects of the medication. This was really difficult to watch, but I was relieved when clinical staff told us they would increase the medication dosage to help him sleep for longer after the procedure and reduce the negative side effects. Thankfully this worked.

“Because of Gabriel’s autism, he did not like sharing a room with other children as he felt uncomfortable hearing the loud noises and crying. We were lucky enough to be given a separate room while we waited for treatments to alleviate feelings of stress.

“Gabriel loves music and dancing so much, and at one point staff brought in someone with instruments for him. This made Gabriel so happy. Gabriel even rang the end of treatment bell and was fine with the noise. He was clapping as the staff cheered him on and loved every second!

“Today, Gabriel is doing really well and has made so much progress. He is not like other children his age, but he is happy and healthy. He always tells me how much he misses the hospital and the staff that took care of him. It was like a second home for him, he grew very attached to them.”

Dr Oulton’s research is one of ten pioneering projects which will this year benefit from a total £2.2 million investment awarded through GOSH Charity’s National Call.

The successful applicants, who are based at eight institutions across the UK, will investigate some of the rarest and most difficult to treat childhood diseases, with a view of unlocking breakthroughs in child medicine.

Chief Executive at GOSH Charity, Louise Parkes, says: “Having received close to 90 high-quality applications as part of our latest National Call, we’re delighted that GOSH Charity will be awarding more than £2.2million to ten paediatric research projects.

“With institutions across the country benefitting from the funding, the National Call is an excellent example of how money raised by GOSH Charity can have a profound impact on child healthcare not just at GOSH, but across the UK.”