Abstract
Teenage and young adult cancer care in England is centralised around 13 principal treatment centres, alongside linked ‘designated’ hospitals, following recommendations that this population should have access to ‘age-appropriate care’. The term ‘age-appropriate care’ has not yet been defined: it is however the explicit term used when communicating the nature of specialist care. The aim in this study was to develop an evidence-based, contextually relevant and operational model defining ‘age-appropriate care’ for teenagers and young adults with cancer.
Patients and methods:A mixed methods study was conducted comprising (i) semi-structured interview data from young people with cancer and healthcare professionals involved in their care (ii) an integrative literature review to identify current understanding and use of the term ‘age-appropriate care’ (iii) synthesis of both sets of data to form a conceptual model of age-appropriate care. A combination of qualitative content, thematic and framework analysis techniques were used to analyse and integrate data.
Results:Analysis and synthesis across data sources enabled identification of seven core components of age-appropriate care, which are presented as a conceptual model: best treatment; healthcare professional knowledge; communication, interactions and relationships; recognising individuality; empowering young people; promoting normality; and the environment. Sub-themes of healthcare professional clinical and holistic expertise and the environment comprising of both physical and social elements also emerged.
Conclusion:The proposed model, necessarily constructed from multiple components, presents an evidence-based, comprehensive structure for understanding the nature of ‘age-appropriate care’. It will be useful to clinicians, health service managers and researchers who are designing, implementing and evaluating interventions that might contribute to the provision of age-appropriate care. While the individual elements of age-appropriate care can exist independently or in part, age-appropriate care is optimal when all seven elements are present, and could be applied to the care of young people with long-term conditions other than cancer.