Caring for Adolescents and Young Adults (AYA) with Cancer: A Scoping Review into Caregiver Burdens and Needs

Milou J.P. Reuvers*, Asiye Gedik, Kirsty M. Way, Sanne M. Elbersen-van de Stadt, Winette T.A. van der Graaf, Olga Husson

*Corresponding author for this work

Research output: Contribution to journalReview articleAcademicpeer-review

2 Citations (Scopus)
20 Downloads (Pure)


AYAs with cancer (aged 15 to 39 at primary diagnosis) form a specific group within oncology, and there is limited information on the impact on their informal caregivers. This scoping review aimed to gain insight into the burden on caregivers of AYAs with cancer and identify the unmet needs they might have. Eligible articles focused on impacts in one of the domains of caregiver burden (physical, psychological, social, on schedule, financial) or unmet needs. In all domains of caregiver burden, impact was reported by caregivers. Caregiving leads to physical problems (such as sleep problems) and psychological symptoms (e.g., depression, anxiety, and negative emotions). Loneliness is reported, and little peer-support. Many different tasks and roles must be undertaken, which is perceived as challenging. In addition, there is a financial impact and there are unmet needs to be met. Several domains of the lives of caregivers of AYA cancer patients are negatively affected by the disease. Some of these are age-specific, and tailored to a particular group of caregivers (parents, partners, or friends). AYA cancer patients represent a wide age range, resulting in the engagement of many different caregivers. Future research will need to take this into account in order to adequately provide support.

Original languageEnglish
Article number3263
Issue number12
Publication statusPublished - 20 Jun 2023

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Publisher Copyright: © 2023 by the authors.


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