Young Carers' Identification: Comparing Adolescents' and Parents' Perspectives.

Abstract

Background: Young carers are children or adolescents who provide significant care to another family member who has an illness or disability. This situation impacts their physical and mental health, and their social and school life. Nonetheless, this vulnerable population is often covert, which makes YCs' identification a major challenge. One of the methods in the literature to identify them consists of obtaining the adolescent's report of a relative's illness or disability, coupled with the standardized psychometric evaluation of their level of care. To date, no research had compared adolescents' and parents' perspectives using this method, while this would enable to gain insights on YCs' identification. The objective of this study was to compare parents' and adolescents' reports on the identification of an ill or disabled relative within the household, and adolescents' levels of caring activities.

Methods: Survey data were collected from 776 adolescents (mean age = 12.76 years; 55.50% of females) and one of their parents (mean age = 44.31 years; 83.76% of females). They completed questionnaires evaluating their sociodemographic characteristics, illnesses or disabilities within their household, and adolescents' levels of caring activities (MACA-YC 18). Cohen's κ for interrater agreement, Student's t-tests and chi-square tests of independence were performed for child-parent responses comparisons.

Results: Fewer adolescents reported that there was an ill or disabled relative within the household compared with their parents. Only 27.56% of the dyads agreed both on the person who was ill or disabled and the illness or disability. The dyads were more often in agreement when the ill or disabled relative had a serious somatic illness and was the mother. On the other hand, adolescents reported engaging in higher levels of caregiving activities than indicated by their parents' assessments.

Conclusion: This study highlights the difference of perception between parents and adolescents both on illness and disability reports, and on adolescents' levels of caring activities. These two points of view seem complementary, suggesting that combining adolescents' and parents' perspectives can aid in better identifying young carers.