Adolescents' social needs living with juvenile idiopathic arthritis and their views about digital resources

Abstract

Background: Juvenile Idiopathic Arthritis (JIA) and its related symptoms (e.g. pain) have been associated with interference in the daily life of adolescents with JIA including their friendships. There is little research in that sense and in consequence, interventions designed to improve this area. The objectives of this study are 1) to gain knowledge about the needs of adolescents with JIA, particularly focused on their friendships; 2) to explore the potential of the Internet to help them, and 3) to determine what kind of online resource would be the best and what elements it should include. Methods: To achieve the proposed objectives we designed a qualitative study including two phases: the first one exploratory (semi-structured interviews) and the following, confirmatory (online focus group). Results: 14 adolescents were interviewed and 7 participated in the focus group. They reported some social challenges related to their illness: feeling different, criticized by peers, or not believed. Additionally, they specified some of the coping strategies they used, such as disclosing to others that they have JIA, using communication skills, maintaining activities with friends, trying to minimize pain, and ignoring negative comments. Adolescents considered an online resource useful and mentioned that they would like to find general information and to have the possibility to interact with others. They considered Instagram and WhatsApp as good platforms to implement the online resource. Conclusions: According to their perceptions, adolescents with JIA can benefit from an online resource which delivers information, strategies and facilitates interaction with others.