The Seen and Be Heard Study is a three phase mixed methods research study that aims to understand the barriers and facilitators to equitable cancer care for all children and young people (ages 0-16) and their families. In particular, it takes an interest in the care of children and young people with cancer who have learning disabilities and/or who are autistic.
As part of this study, this survey is designed to explore the perspectives of all staff involved in providing care to children and young people with cancer and their families. We would like to understand staff perspectives relating to their knowledge, skills and confidence to deliver safe, holistic and individualised cancer care to children and young people with or without learning disabilities/autism. The survey is an initial exploration of this topic and later more targeted research is planned within the study. The survey (and larger research study) is being conducted in collaboration with the CCLG and their quality improvement work in this area.
We acknowledge that many individuals with lived experience of autism and their family members prefer terminology that refers to an “autistic person”. We also acknowledge that autism is not always associated with a learning disability. However, we ask about learning disability and autism together throughout this survey for easier readability and to enable you to complete the survey in around ten minutes. We have applied a filtering approach, however there may be some sections where not all the questions are relevant to your role - please select the response 'not applicable' as required. We have provided free text boxes at the end to collate more detailed feedback, including further exploration of potential differences in care across the groups.
We are interested in perspectives of care provided to children and young people with cancer. However, to reduce words in questions, we will refer to 'children and young people' as 'children' throughout.
The survey is anonymised and confidential, meaning no one will be able to connect you with your responses. We will report findings as a whole and if quotes are used they will anonymised.
Completing the survey will take around 10 minutes.
Thank you for supporting the Seen and Be Heard Study by completing this survey.