'TheyMadeMe Feel Like IWas at Home': Experiences of Psychosocial Care in the Australian Youth Cancer Service

Abstract

Objectives: Adolescents and young adults (AYAs) aged 15-25 years with cancer have complex and unique psychosocial care needs that are not fully addressed within traditional adult or paediatric oncology settings. The Australian Youth Cancer Services (YCSs) were established to address this gap by providing multidisciplinary, youth-responsive care across a network of >25 paediatric and adult hospitals. This study aimed to understand AYAs' experiences of care to identify areas for service improvement. Method: A cross-sectional survey was conducted between 2016 and 2022 with AYAs who had completed treatment at a YCSaffiliated hospital. The survey comprised 117 questions, evaluating participants' experiences from diagnosis through treatment completion. Results: A total of 184 AYAs from all Australian states and territories completed the survey (39% response rate). The mean age was 22 years, and 59% were female. The most common diagnoses were lymphoma (37%), sarcoma (20%), and germ-cell tumours (13%). Most participants (96%) reported being satisfied or very satisfied with the overall support provided by the YCS. A high proportion (>85%) reported: having a family member present at diagnosis; being informed about their diagnosis in a caring manner; having a healthcare professional (HCP) they could contact any time; undertaking a psychosocial assessment about their coping and support needs; receiving ongoing emotional support; being able to talk with an HCP on their own; and trusting HCPs with personal information. Areas identified for improvement (<70%) included enhancing access to entertainment/distraction resources and supporting continued engagement with education while in the hospital. Qualitative suggestions included expanding the YCS to additional sites, extending support after treatment, and providing more opportunities to meet other AYAs. Conclusion: AYAs reported high satisfaction with the psychosocial support they received, highlighting the value of multidisciplinary, youth-responsive care. Key areas for continuous service improvement were identified, and future service delivery should consider these insights when designing AYA care.