It has long been recognised that young people have unique needs which differ from those of children or adults. Yet within healthcare, they have spent years without being recognised as a speciality within their own right. Teenage and young adult cancer networks in the United Kingdom have however evolved over the past twenty years. Services have been shaped by national guidance, released in 2005, and with much input from the charitable sector. These services in England are structured around complex networks, with secondary and tertiary care delivered in either a specialist Principal Treatment Centre, or within an associated ‘designated’ or ‘shared care’ hospital.
The aim of this research was to look closely at these services, to specifically examine the culture of care for young people receiving cancer care in England. The current economic climate of the National Health Service (NHS) presents an ongoing challenge for specialist health services to demonstrate their value and cost-effectiveness: teenage and young adult cancer care being one of these specialist services. Evidence to underpin specialist health services is crucial to make a difference and sustain change.
Adopting a case study approach through a critical realist lens, this multiple-case study was conducted across four teenage and young adult cancer networks in England. A conceptual framework consisting of three core concepts of culture was used to guide study design, conduct and reporting. A qualitative, multi-method approach was used across 24 NHS hospitals, and included: semi-structured interviews with healthcare professionals (n=41), and young people (n=29); participant observation, walking tours and shadowing techniques. Thematic analysis was used to identify themes between, within and across the four cases; deconstructing and reconstructing the components of the culture of care that emerged thereby enabling synthesis and contextualisation of data.
The findings of this study are presented in three parts, framed around the three core concepts of culture: the dynamic contexts of the culture; the visible processes and less visible values which underpin the culture; and the way culture was learned and shared. In terms of the context of care, the impact of the physical environment on young people’s experiences of socialising and accessing peer support were highlighted. There were key features of the culture which were clear and visible. Underpinning these features were three values at the core of delivering young person-centred care: recognising individuality, empowering and promoting normality for young people. To develop a culture which embraces and promotes these core values, it was found to be particularly important to have effective communication and leadership, healthcare professionals with the right attitude, and a sufficient number of young people using a service.
Conclusion and recommendations
The importance of the core values that underpin care, and the need for education, effective leadership and multi-disciplinary team working, should all be recognised and prioritised when developing and evaluating interventions that contribute to the delivery of care to this unique patient group. Care delivered in an environment which promotes normality through facilitating socialisation with peers is optimal for the creation of a culture of care which is holistic and young person-centred. The findings of this study provide qualitative evidence of care delivery. This data will be further considered alongside the quantitative data generated in other workstreams of the BRIGHTLIGHT programme of research. However, taken alone, these findings provide evidence to assist all healthcare professionals and services to grow and nurture a culture of care that meets the unique needs of young people with cancer, and to improve their experiences of care; and further progress healthcare organisations towards a future where specialist, holistic care is accessible for all young people.