ELIAS

Context: Adolescents may face the illness/disability of a relative. Those who provide a significant support are called young carers (YC). If some research has been undertaken in France about children facing a parent or a sibling illness/disability, the support they may provide is ignored. Thus, YC are unknown and understudied in France. In the literature, cross-sectional studies showed many negative effects of youths’ caring on their health and academic performance, and low awareness of professionals at school about it. However, there is a need to explore the evolution of support among adolescents facing a relative’s illness/disability, its impact over time, and parents’ and school professionals’ experience. Objectives: 1) to investigate the associations between facing a relative’s illness/disability and care with adolescents’ quality of life and academic performance, 2) to examine the factors associated with a decrease in their quality of life and academic performance, 3) to describe families’ perceptions of the support provided from YC, 4) to explore school professionals’ awareness and practice with adolescents’ facing a relative’s illness/disability. Method: longitudinal mixed-method study of 3,000 adolescents from 7th to 9th grade, their parents (N=1,500) and school professionals (N=300). All participants will complete questionnaires at inclusion, one and two years later. For adolescents, measures will include sociodemographic and family characteristics, health issues within the family, caring situation and activities, quality of life, perception of school performance and climate, as well as career interests. Parents will complete comparable measures regarding their family, their child as well as their own health. School characteristics and information about adolescents’ academic performance and trajectories will be collected from schools. School professionals will complete a questionnaire measuring their knowledge, attitudes, practices and needs about adolescents currently facing a relative’s illness/disability. In addition, at Grade 8, a subsample of YC and their parents (about 15 families) will be interviewed and home observations carried out. Impacts: Currently, much has to be done in France for YC and more globally for youths facing the illness/disability of a relative. In other countries, it has been shown that increased knowledge thanks to research helps increase awareness about YC, but also practice policy and services. Therefore, the results of this study should help to recognise, identify and support YC and their families. The data derived from this study will provide key answers to questions regarding the early identification of adolescents at-risk regarding their quality of life but also their academic performance. It will benefit professionals change their practice and better support adolescents facing a relative’s illness/disability. Results could also help developing prevention campaigns in secondary schools among professionals, adolescents and their parents.