Online Study: Online Information and Support Needs Of Young People with Cancer

Research team:

• Lorna Fern, Rachel Taylor, Sarah Lea, Ana Martins: University College London Hospitals NHS Foundation Trust
• Jamie Cargill: University Hospitals Bristol and Weston NHS Foundation Trust
• Sue Morgan: Leeds Teaching Hospitals NHS Foundation Trust

Funded by Teenage Cancer Trust

What were our aims?

The internet is integral to young people, providing round-the-clock access to information and support. Young people report searching online for information and support, and this varied across their cancer timeline. We sought to understand how healthcare professionals perceived online information and support for young people with cancer.

What did we do?

Semi-structured interviews with eight healthcare professionals across the UK informed the development of a survey, completed by 38 healthcare professionals. Framework analysis was used to identify key themes and the survey was analysed descriptively.

What did we find?

Seven themes emerged as integral to healthcare professional’s perceptions of online information and support, these included: views about young people’s use of online resources; how needs change along the cancer timeline; different platforms where healthcare professionals refer young people to online; whether young people’s online needs are currently met; recognition of the emotional relationship between young people and the internet; barriers and concerns when referring young people to online resources; and strategies used in practice.

Professionals play an important role in signposting young people to online resources, where they are confident about the accuracy and delivery of information. The biggest perceived barrier to facilitating online access was the cost to the NHS, and most concerning factor for healthcare professionals was keeping young people safe online. There is a need to develop online resources specific for young people on psychosocial topics beyond treatment to support young people and healthcare professionals through this period.

The findings of this study have been published in two separate papers: the findings related to young people’s online information and support needs (accessible via this link) and healthcare professional’s experiences of supporting young people with cancer when they use the internet and their perspectives of their online needs (accessible via this link).