Conceptualizing age-appropriate care for teenagers and young adults with cancer: a qualitative mixed-methods study

Abstract

Purpose

Teenage and young adult cancer care in England is centralized around 13 principal treatment centers, 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 of this study was to develop an evidence-based, contextually relevant and operational model defining age-appropriate care for teenagers and young adults with cancer.

Materials and methods

A mixed-methods study was conducted comprising 1) semi-structured interview data from young people with cancer and health care professionals involved in their care; 2) an integrative literature review to identify the current understanding and use of the term age-appropriate care; 3) 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 was used to analyze and integrate data.

Results

Analysis and synthesis across data sources enabled identification of seven core components of age-appropriate care, which were presented as a conceptual model: best treatment; health care professional knowledge; communication, interactions and relationships; recognizing individuality; empowering young people; promoting normality; and the environment. Subthemes emerged which included healthcare professionals clinical and holistic expertise, and the environment comprising both physical and social elements.

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 for 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.

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Keywords:

• age-appropriate care
• teenagers
• adolescents
• young adults
• young people
• cancer
• health care delivery
• BRIGHTLIGHT

Supplementary materials

Table S1 Details of articles included in the review

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Acknowledgments

This article presents independent research funded by the National Institute for Health Research (NIHR) under its Programme Grants for Applied Research Programme (grant reference number: RP-PG-1209–10013). The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health. LAF was funded by Teenage Cancer Trust, and AM was funded by Sarcoma, UK. None of the funding bodies have been involved with study concept, design or decision to submit the manuscript.

Author contributions

All authors contributed to data analysis, drafting and revising the article, gave final approval of the version to be published, and agree to be accountable for all aspects of the work.

Disclosure

This manuscript has not been published or submitted to any other journals, but it has been presented orally at the joint BRIGHTLIGHT and Teenage and Young Adults with Cancer (TYAC) Conference in Leeds, UK, in July 2017 and as a poster presentation in the Adolescent and Young Adult Global Cancer Congress in Atlanta, USA, in December 2017. Neither of these presentations are publicly available. The authors report no other conflicts of interest in this work.