Healthcare Professional and Service User Perspectives on Formal Educational Programmes for Children and Young People with Cancer in the UK

Abstract

AbstractCaring for children and young people with cancer requires specific knowledge, skills and experience to deliver the complex care regimes both within the hospital or community environment. This study explored the educational gaps in caring for children and young people with cancer. To address this, a mixed methodology approach was adopted in two phases. Phase one was a questionnaire circulated to healthcare professional members (n = 850) of the Children’s Cancer and Leukaemia Group and Managed Service Network, Scotland. Response rate (n = 121) (14%) was achieved. In phase two of the study, a focus groups (n = 4) was conducted with young people in Scotland through the Managed Service Network. This was to gain a critical understanding from service user perspective and what they deemed as important to their overall care delivery. Phase one: healthcare professional results reported that 76% (n = 93) were aware of education; 69% (n = 84) found that knowledge supported practice development, but only 45% (n = 55) finding current education provision useful. The top education topics identified to be lacking in educational availability were communication, psychological support, dealing with young people, supportive care, diagnosis and treatment and challenges to learning. Several participants 64% (n = 78) suggested that funding and time was a barrier, and that there was a lack of provision. Phase two: Findings from the focus group (n = 4) thematic analysis identified five key themes. Service users expected professionals to be knowledgeable and trained, but when talking about experiencing care, gave insights into the gaps in their care. Findings suggest that formal cancer education is required.