Are there young carers in oncology? A systematic review

Abstract

Objective This systematic review aims to investigate the support children provide in the case of a relative's cancer. Methods Searches were performed on four electronic databases (Embase, PsycINFO, PubMed and ScienceDirect) to identify studies that report on the support provided by children to a relative diagnosed with cancer. Two researchers independently evaluated the eligibility of the studies and cross‐checked them for accuracy. The Crowe Critical Appraisal Tool (CCAT) was used to assess the quality of the studies included. Results Out of the 10948 articles screened, 30 were included in this review. Results highlighted that cancer provokes changes in families, such as shifts in roles and increased responsibilities for the youth. Children often provided significant support to their sick relative and family members, including practical, emotional, and medical support such as household duties, medical assistance, companionship, and distraction. However, they were designated as young carers in only one study. The support provided was associated with negative effects such as stress and fatigue, and with positive effects such as increased empathy and independence. Children wished to support their family but also named several needs, such as time for themselves and the opportunity to enjoy their childhood. Conclusion The results of this systematic review highlight the importance of taking into account the support provided by young people facing the cancer of a relative and designating them as young carers. Much remains to be accomplished to officially recognize their role and to support them properly.

Encountering young caregivers: Attitudes and practices of healthcare professionals caring for cancer patients

“…These results are in line with previous findings. Some studies have shown that YCs can provide care naturally, such that they may not perceive it as negatively affecting them, because of which they do not recognize their caregiving as part of a specific role 7,32–34 . Second, Marote et al 32 .…”

“…They may even coordinate with healthcare professionals 7–9 . However, unlike adult caregivers, YCs are not recognized as caregivers, but only as young persons facing a family member's illness 7 . However, YCs' work affects them on a personal level 10 .…”

“…However, YCs' work affects them on a personal level 10 . Studies show that caring for a family member, particularly ones with cancer, has many effects on the caregiver's physical and mental health 7,8,11 . Negative effects on health are more prominent in YCs than in those who face the disease without actively supporting their family member 10 …”

Illness unpredictability and psychosocial adjustment of adolescent and young adults impacted by parental cancer: the mediating role of unmet needs

“…Other variables not assessed in this study might be also associated with offspring unmet needs. In fact, because parental cancer modifies family dynamics, decreasing the ability of the ill parent to fulfill familiar roles and responsibilities and increasing demands on other family members [28-30, 42, 45], AYAs might take on more caregiving responsibilities resulting in less time for social and activities and more unmet needs [46]. The quality of the relationship between family members might also affect the assumptions of caregiving responsibilities within the family and be associated as well with offspring unmet needs [29,45].…”

Factors Influencing Aspects of Quality of Life (QoL) in Young Carers: A Translational Review of Literature Giving Specific Consideration to Young Cancer Caregivers and Education

“…Mental health issues vary vastly and include diagnosed conditions such as depression, anxiety and phobias, an example being agoraphobia (Manwell et al, 2015). Many of these are often experienced by young carers as well as young carers of cancer patients, who may be involved in practical, emotional and medical support, often for significant periods of time (Justin et al, 2021).…”