Sample characteristics
A total of 22 patients were included in this study, 7 males and 15 females with a median age of 14 years (range 8–16). The individual patient characteristics are shown in Table 2.
Table 2
Sociodemographic characteristics of JIA patients
Age (years) | 14 (8–16) |
Disease duration (SD; range) | 8 years (1–11), |
Sex ratio | 0.46 |
Actual Pain intensity Median (years) | 20 (10-40) |
JIA subtype (n) | ERA | 11 |
Oligo articular | 7 |
Poly articular RF - | 2 |
Poly articular RF + | 1 |
Systemic JIA | 1 |
JIA: juvenile idiopathic arthritis ERA: Enthesitis-related arthritis |
Content analysis from the interviews
Social life: Friendships and family life
Seventy eight percent felt understood and supported by their family in dealing with the different aspects of JIA. Twenty-six per cent felt more spoiled than their other siblings, creating tension sometimes. Fifty two percent felt different and not accepted by their peers because of the JIA. Some children made comments about feeling different from others because of JIA and feeling criticized by peers, including comments referring to criticism they have received as a consequence of JIA.
There were also comments about not feeling believed and not feeling understood with regard to invisible symptoms such as pain or other symptoms.
Coping strategies were ignoring negative comments, maintaining activities with friends, despite feeling bad. When asked what they need to better manage their friendships, most of the participant expressed a need for their friends to be informed about the JIA diagnosis, its characteristics, course, impact, and consequences.
School and physical activity:
Eight percent of the children were in elementary school, and 21.7% in high school. Eighty seven per cent reported school absenteeism due to JIA (pain, being hospitalized) with a mean of 8 missed school days. Forty-three per cent failed in their schooling at some point. Thirty percent thought it was related to the consequences of their disease. Only 47.8% found the school staff to be helpful and supportive.
Only one (4.5%) participant was engaging in high level sports. 22.7% stated playing sports for more than 5 hours a week. Forty-five percent did engage in sport activity at school. Among which 27% engaged in all types of sports. 31.8% found their performance not affected by their disease. Some of the participant found their performance limited because of pain (18%), coxitis (9%), and functional limitations (18%). One patient had a heart condition limiting his physical activity as well. 45.5% found their symptoms worsen by playing sports, versus 9.1% who found it got better. Only 27.3% stated having medical counseling from their doctor regarding physical activity.
Online resources and social media
Ninety-seven of our participants confirmed that they’re using social media, for a mean of 3 hours per day. YouTube and Facebook came back as the first two preferred platforms: 82.6% and 69.6% respectively, followed by Instagram 30.4%, Tiktok 21.7, Snapchat 17.4% and WhatsApp 8.7%. Seventeen percent of children viewed these platforms as a positive and helpful in dealing with JIA, specially taking their mind of pain, dealing with the stress resulting from the lack of mobility and facilitating interactions with others. All of our participants were in favor of obtaining information about JIA, and interacting with others, including people with experience with the JIA (peers or health professionals) through an online resource. Interestingly, none of the participants considered online resources as a place to interact with health professionals or have access to information about JIA.