Faith Gibson: Great Ormond Street Hospital for Children NHS Foundation Trust
Sarah Lea, Rachel Taylor: University College London Hospitals NHS Foundation Trust
Funded by the NIHR (RP-PG-1209-10013)
What were our aims?
The aim of this research was to look closely at teenage and young adult cancer 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 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.
What did we do?
Adopting a case study approach through a critical realist lens, this multi-site case study was conducted across four teenage and young adult cancer networks in England. It used a qualitative, multi-method approach across 24 NHS hospitals, and included: semi-structured interviews with healthcare professionals (n=41), and young people (n=29); focussed ethnography, 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.
What were our findings?
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 the culture was learned and shared. The first part of the findings from this study to be published looked at the term ‘age-appropriate care’ and explored how it can be conceptualised. There were seven core components to age-appropriate care: treatment; healthcare professional knowledge; being able to recognise individuality; communication, interactions and relationships; empowering young people; promoting normality; and the physical and social environment. This was based on data but also drew on a narrative review of the literature.
An important aspect of developing a culture was the healthcare team’s holistic competence and how it was developed and shared. Developing holistic competence was facilitated by the environment, the experience continuum, enthusiasm and education.
Sarah’s full PhD thesis is available online.