Adolescent and Young Adult (AYA) oncology is an internationally recognized established subspecialty in cancer care. Dedicated programs tailored to local environments endeavor to address unique medical, psychological, cognitive, and social needs that historically, health services have been challenged to meet. In recent years there has been a growing appreciation of the challenges facing AYA with incurable cancer and their parent caregivers. While health care professionals recognize the importance of parents' involvement in the care trajectory, there is less understanding of the services needed for support. This scoping review set out to identify and describe evidence available to better understand the services and approaches required from hospital teams to address the needs of parent caregivers and to identify gaps in knowledge to inform areas for further research. The question guiding this review is: What are the service needs of parent carers of AYA with incurable cancer. Using the Arksey and O'Malley scoping review framework, 1009 studies were identified from a broad search of relevant online databases, gray literature, and reference lists of published studies. After removing duplicates and ineligible studies, 492 abstracts were screened. Of these, 421 were ineligible, and 71 articles underwent full-text review. Eight studies were included in the final review. No single study was focused exclusively on parent caregivers of AYA with incurable cancer, demonstrating a paucity of quantitative and qualitative evidence to inform practice and a need for further research in the field.
Keywords: adolescents and young adults; incurable cancer; parent caregivers; scoping review; service needs.