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

Author:

Reuvers Milou J. P.12,Gedik Asiye2ORCID,Way Kirsty M.3,Elbersen-van de Stadt Sanne M.4,van der Graaf Winette T. A.25ORCID,Husson Olga26ORCID

Affiliation:

1. Division of Psychosocial Research and Epidemiology, Netherlands Cancer Institute, 1006 BE Amsterdam, The Netherlands

2. Department of Medical Oncology, Erasmus MC Cancer Institute, Erasmus University Medical Center, 3015 GD Rotterdam, The Netherlands

3. School of Heath Sciences, University of Southampton, Southampton SO17 1BJ, UK

4. Independent Researcher, 1006 BE Amsterdam, The Netherlands

5. Department of Medical Oncology, Netherlands Cancer Institute—Antoni van Leeuwenhoek, 1006 BE Amsterdam, The Netherlands

6. Department of Surgical Oncology, Erasmus MC Cancer Institute, Erasmus University Medical Center, 3015 GD Rotterdam, The Netherlands

Abstract

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.

Publisher

MDPI AG

Subject

Cancer Research,Oncology

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