Experiences and perspectives regarding developmentally appropriate cancer services for adolescents and young adults with cancer: a mixed methods systematic review

Background: Providing developmentally appropriate cancer services for adolescents and young adults is a challenge for the health sector. Current service approaches are fragmented and diverse, with amalgamation of adolescents and young adults' perspectives lacking in the literature. Whilst there has been progress in delivering care focused on adolescents and young adults, contemporary evidence is warranted to understand their experience to establish sustainable developmentally focused cancer care. Objective: To examine the experiences and perspectives regarding developmentally appropriate cancer services for adolescents and young adults with cancer. Design: This systematic review was conducted in accordance with the Joanna Briggs Institute methodology for mixed methods systematic reviews using a convergent integrated approach. Studies focused on the care experiences of adolescents and young adults with a cancer diagnosis between the ages of 15 to 39 years were included in the review. A key word search of six relevant databases identified 2513 records and 57 full text records were screened for eligibility. Results: 16 qualitative studies, 12 quantitative studies and two mixed method studies were included in the analysis. Four synthesised findings were generated from 10 categories. Findings were conceptualised as: Developmentally appropriate information and communication, Decision-making process, Relationship, emotions and comfort, and Care environment. Findings highlighted information provided was inappropriate at the time of diagnosis and inadequate during treatment period and survivorship. They desired direct, open communication with healthcare providers and expected guidance in certain instances, however, also sought autonomy in decision-making. The support of family, peers and care-providers was considered invaluable to effectively cope with stressors. The need for cultivating an empathetic healthcare environment suitable for young people was also identified as a significant need. Conclusions: This review affirmed that although significant effort has been invested, further work is needed to improve the cancer care experiences of adolescents and young people. The findings emphasise many preferences regarding how cancer services should be delivered, suggesting that services should be evaluated against these preferences. Ensuring developmental appropriateness is critical for the delivery of supportive cancer care. Registration number: CRD42023413864 (PROSPERO).