Navigating the Burden: A Systematic Review of Children and Young People Caring for Family Members With Cancer

Abstract

Introduction: In 2025, one in two adults will be diagnosed with cancer. This is challenging for all people affected by cancer, including the children and young people within the family unit, and it can affect their physical, emotional and social well-being. However, little is known about the support and needs of children and young people who are caring for someone within the family with a cancer diagnosis.

Methods: Five databases (MEDLINE, CINAHL, Web of Science, PsycINFO and PubMed), assorted repositories, government reports and websites were searched from 1993 to 2025. All research studies in English, German and French were included and restricted to children and young people aged five to 25 years who care for a family member regularly. A team of independent reviewers made the inclusion and quality assessments using the MMAT standardised critical appraisal tool.

Results: Thirty-four papers were initially considered eligible, with fourteen being disregarded. The themes identified within the literature were (1) ‘Need for support’, (2) ‘Support available’ and (3) ‘Changing roles’.

Discussion and Recommendations: Although in some situations, the children and young people were able to cope with the heavy burden of being a carer, most studies reported a lack of support and several needs, for example, a lack of knowledge on how to care for their parent with cancer and need for support from their peers. In other situations where the cared-for person was dying, the addition of palliative care and end-of-life care was challenging. Although this experience led to not a good death, the young carer was left with a significant loss and no purpose for their own life.