How Far Have We Come? An Updated Scoping Review of Young Carers in the U.S.

Abstract

Approximately 1.4 million young carers (aged 8–18) in the United States are providing multifaceted, extended care to adults with serious illness, in addition to their family, home, and/or school responsibilities. In 2015 an initial review of U.S. research on young carers highlighted the need for longitudinal research, interventions, and national policy. The aim of this review is to identify young carer research since the original review to assess progress in better serving young carers’ needs and to identify persistent gaps for future research. Using Arksey & O’Malley’s Scoping Review Framework to answer our research question of how many studies have been conducted since the initial review, we (1) identified relevant studies, (2) performed study selection, (3) charted the data, and (4) summarized and reported results. We also reviewed young carer research outside of the U.S. to compare transnational progress. The search yielded only four U.S. studies representing 507 CC; age range 8–25 years. Most often the young carers reported more responsibilities than the adult care recipient and a variety of factors contributing to their experience. A separate review yielded eight non-U.S. studies and similar findings. Mirroring the 2015 review, results detail a lack of consistency regarding the terminology and age range for young carers. Despite a previous call to action, there exists both a continued need for tailored interventions to prevent or mitigate potential negative outcomes related to the caregiving role, and a need for further research and global policy development.