Seen and Be Heard Study: Ensuring fair cancer care for all children
Research type
Research Study
Full title
The Seen and Be Heard Study: Identifying the barriers and facilitators to ensuring equitable cancer care for children with and without a Learning Disability and/or Autism Spectrum Condition.
IRAS ID
335623
Contact name
Kate Oulton
Contact email
Sponsor organisation
Great Ormond Street Hospital for Children NHS Foundation Trust
Duration of Study in the UK
1 years, 8 months, 29 days
Research summary
Every year, like other children, children with Learning Disabilities and/or who are autistic receive a cancer diagnosis and start a cancer care journey. Some children with Learning Disabilities, such as those with Down Syndrome, are more likely to get certain cancers, including leukaemia. We know that children with Learning Disabilities and autistic children can find hospitals particularly challenging, being with unfamiliar people in unfamiliar surroundings. Undergoing procedures and investigations can make them very anxious, potentially causing them to self-harm and harm others. They may not be able to communicate their needs and may have limited ability to understand complex information. However, there has been no research to understand how such complexities impact aspects of cancer care including receiving a cancer diagnosis, undergoing chemotherapy or radiotherapy, understanding and managing symptoms, and receiving palliative care.
We are seeking ethical approval for work package two, which forms the main part of a larger project. During this phase we will observe and explore the cancer journey of children with/without Learning Disabilities and/or who are autistic with their families to understand their needs and experiences. This will include informal creative and inclusive interviews involving children and more formal 1-1 parent and staff interviews. Findings will be discussed and applied through co-designed outputs, within workshops in the third work package.
In the first work package, we will distribute an anonymous national survey through the Children’s Cancer and Leukaemia Group network (not via NHS sites). The survey will explore staff and organisational views of service provision for children with Learning Disability (LD) and or who are autistic in cancer treatment centres in England. We will also perform a service audit review of medical records to compare symptoms and outcomes between children with/without Learning Disabilities and/or who are autistic. For this first phase we are not seeking ethical approval, but details are included in the study protocol.
Our findings will inform how cancer care is provided to children with/without Learning Disabilities and/or who autistic, ensuring resources are allocated fairly and appropriately to those who need it, when they need it, to reduce unmet needs.REC name
London - Camden & Kings Cross Research Ethics Committee
REC reference
24/LO/0410
Date of REC Opinion
7 Jun 2024
REC opinion
Favourable Opinion