Being normal, not vulnerable: case study of a 2-day residential programme for young adults with cancer

OBJECTIVES: To identify and describe the outcomes and facilitating processes of participation at ‘Find Your Sense of Tumour’ (FYSOT), a 2-day residential programme/conference for young people with cancer, from the perspective of professionals attending and patient representatives. DESIGN: Case study. SETTING: Observation of the ‘Find Your Sense of Tumour’ over 18s residential programme and face-to-face interviews in hospital and phone interviews. PARTICIPANTS: Twenty-six participants — 19 professionals from hospitals across the UK who accompanied young people to FYSOT; 3 programme organisers; and 4 young people from the programme steering committee. METHODS: Participant observation and semistructured interviews. RESULTS: This process evaluation of an educational, social and peer-to-peer support residential weekend for young people with cancer identified key outcomes for young people — positive attitudes (increased sociability, confidence), belonging (feeling accepted, understood), recreation (trying new activities, having fun) and increased knowledge (balance between educational talks and interactions with other young people); and three overarching facilitating processes — being with other young people, the professionals accompanying young people to the event for support and guidance, and the conference/intentional programming. Being in a safe, relaxed and fun environment with other young people facilitates the development of peer support networks and increases young people’s confidence and knowledge. Although the focus of the residential programme is on young people, interviewees acknowledge the impact of attending on professionals’ motivation, learning and changes in practice. CONCLUSIONS: This study has extended our understanding of the role of residential programmes by identifying outcomes and facilitating mechanisms. We have shown that residential programmes have an important role in providing participants with social, emotional and informational support, as well as play an important role in redefining normality. Longitudinal quantitative and qualitative research is needed to optimise outcomes and design and implement quality programmes that support young people’s development.