Oncology’s Silent Caregivers

Abstract

Background Cancer affects the whole family system causing reorganization of functioning and responsibilities where children may take on a caregiving role. In the United States, an estimated 204 000 to 475 000 caregiving youth provide multifaceted, extended care in oncology. This results in both positive and negative outcomes for youth—spanning multiple domains of health. Objective The aim of this study was to explore the caregiving experiences, outcomes, and unmet needs of caregiving youth (aged 12-24 years) in oncology. Methods An explanatory sequential mixed-methods study design was used. Fifty-two adults who lived with a parent with cancer as a child were recruited via social media and asked to complete an online survey. A subsample of 18 individuals reporting high to very high amounts of caregiving were subsequently interviewed. Results The mean reported caregiving youth age was 16.13 (±4.86) years. They provided care approximately 22.43 h/wk for approximately 3.04 years. Most (71.2%) reported high to very high amounts of caregiving activity. The highest reported categories of unmet needs were information, family, feelings, friends, and time out/recreation. Qualitative findings included 4 themes: stepping into the role, family communication, dealing with feelings, and a new separateness. Conclusions Identified needs included a desire for more information to aid in uncertainty, better communication within the family, needing someone to help them process their feelings, and peer-to-peer support. Implications for Practice It is important for nurses and researchers to be aware of and acknowledge the needs of families dealing with cancer and aid in the development and implementation of tailored interventions to support caregiving youth.