Growing up with a Chronically Ill Family Member—The Impact on and Support Needs of Young Adult Carers: A Scoping Review

Abstract

This scoping review provides an overview of the impact of growing up with a chronically ill family member on young adults (18–25 years old), and their specific needs. Young adults represent an important life stage involving a transition to adulthood, during which individuals’ family situations can affect their future. We searched relevant studies following the guideline of Arskey and O’Mailley’s methodological framework and the PRISMA statement guidelines for scoping reviews in PubMed, PsychInfo and reference lists to identify articles for inclusion. Studies from 2005 to 2020 were included in this review. Of the 12 studies, six qualitative studies, five quantitative studies and one mixed method study were included. Eight studies discussed the impact, including consequences at a physical and mental level, at their personal development and future perspectives, but also positive effects, such as being capable of organizing their lives. Four studies discussed the needs of young adult carers, including emotional needs, support needs with regard to stimulating autonomy (arising from internal conflicts) and developing their own identity, and the concerned attitude of involved professionals. An unambiguous definition of the target group and further well-designed research are needed to improve clarity about the role of support, so that future professionals can adequately address the needs and wishes of young adults who grow up with an ill family member.

Study progress, recreational activities, and loneliness in young adult carers: a national student survey

“…A strength of the present study is the use of psychometrically sound outcome measures. Furthermore, the study focuses on a group of young adults where little previous research has been published [ 1 , 4 , 5 ].…”

“…The psychological benefits may include developing a close relationship with the cared-for individual, enhanced feelings of purpose, meaning, and pride, acquisition of competence and social skills, and a sense of maturity and personal growth [ 3 , 6 , 9 , 10 ]. However, for YACs also increased levels of mental and somatic health problems have been observed [ 4 , 6 , 9 , 11 – 14 ]. We have previously compared Norwegian students (N = 40 205) with and without care responsibility for family members or others with physical or mental illness, disabilities, or substance misuse.…”

“…Whereas previous studies have indicated that caregiving may restrict school engagement, educational aspirations, and choices, as well as the social life of young carers below 18 years [ 10 , 16 , 17 ], very few have examined the educational, recreational, and social consequences of caring for YACs [ 4 ]. This is unfortunate, as it has been suggested that caring may have different impact on education, employment, social life, and well-being of young carers below and above 18 years [ 18 ].…”

“…However, the generalizability of the findings is limited due to small sample sizes and frequent recruitment of responders from interest organizations (e.g., 6 , 10 , 18 , 24 , 25 ). Thus, a recent review of research studies concludes that well-designed research is highly needed, including larger, representative samples of young carers 18 to 25 years, as well as control groups [ 4 ].…”

Young Adult Carers during the Pandemic: The Effects of Parental Illness and Other Ill Family Members on COVID-19-Related and General Mental Health Outcomes

“…A substantial body of published international research provides evidence on the adverse psychosocial impacts on youth caring for a family member, particularly a parent, who has a serious mental or physical health condition [ 1 , 2 , 3 , 4 ]. Most studies in this field have investigated children and adolescents up to the age of 18 years (referred to as young carers), with markedly less research on young adult carers (18–24 years) [ 5 ]. Yet the young adult developmental phase (also referred to as emerging adulthood) involves critically important milestones such as increasing autonomy, identity formation, career development, and navigating intimate relationships [ 6 ].…”