Grant: Operating Grant

Based on the experiences of late adolescents aged 15 to 19 affected by Neurofibromatosis Type 1 (NF1), this research project has as purpose to expand knowledge on their needs and concerns given the impact of this illness on their health, private life (sexuality, love, reproduction) and social life (school, work, society). NF1 is one of the most widespread autosomal dominant diseases in the world. Its physical manifestations can severely deform the body and induce cognitive problems. Those who are affected not only have to deal with the social stigma associated with the disease, but also with predisposition to anxiety and depression. Adolescence is a particularly sensitive period when one is affected with NF1. Hormonal changes and periods of rapid growth could exacerbate physical deformities at an age when appearance, peer acceptance and social integration are of paramount importance. We must also consider that late adolescents are only beginning their learning of love and sexuality at this point of their lives, consequently, the fear of change in appearance, the risk of a pregnancy aggravating their illness, or the risk of giving birth to an affected child will complicate the situation even more. In this context, our specific objectives, by way of a pan-Canadian qualitative research project using an online text-based interview, are: 1) To determine what late adolescents know, would like to know or need to know in relation to the medical aspects of NF1; 2) To identify the concerns of late adolescents regarding the impact of NF1 on their social life and private life, and their sources of anxiety; 3) To assess the pertinence of intergenerational dialogue. The outcomes will be used to create a toolkit allowing for a better understanding of late adolescents' needs, such as: a) medical, genetic and reproductive information, b) clinical interventions and care-giving, c) academic and psychological support, d) inter-generational dialogue.