“I’m in pain, and I’m not faking it”: A qualitative exploration of the reactions of youth with juvenile idiopathic arthritis and their caregivers to pain-related stigma

Abstract

Juvenile idiopathic arthritis (JIA) is a chronic inflammatory condition often marked by pain in childhood. JIA pain has a variable course and often lacks any visible signs. As such, youth with JIA can experience negative judgement from others in response to their pain (i.e., pain-related stigma). Theoretical models indicate that pain-related stigma experiences contribute to affective, behavioural, and cognitive reactions from youth in the moment (i.e., situational) and over time (i.e., enduring) that ultimately influence their health. Caregivers also play a crucial role in supporting their children’s health. While caregivers may protect their children from the potential negative impacts of pain-related stigma, caregivers can also be affected by their children’s stigma experiences. Thus, this qualitative study aimed to explore both the situational and enduring reactions of youth with JIA and their caregivers to pain-related stigma. It also examined similarities and differences in their reactions to identify potentially protective reactions and areas where additional support may be needed. Ten youth aged 15–19 years with JIA and 12 caregivers participated. Youth and caregivers completed separate semi-structured interviews. During interviews, participants were asked about the youth’s experiences of pain-related stigma and how these experiences affected their situational and enduring cognitive, affective, and behavioural reactions. Interview transcripts were analyzed using reflexive thematic analysis. Themes generated between groups were triangulated to assess for convergence and divergence. A matrix analysis was subsequently used to develop meta-themes capturing overlapping concepts. Separate themes for each group were developed. The matrix analysis resulted in five meta-themes that capture the overlapping situational and enduring reactions of youth and caregivers to pain-related stigma: (1) addressing stigma and increasing perceived credibility; (2) responding to individual needs; (3) fear and avoidance due to anticipatory stigma; (4) long-term impacts on mental health and well-being; and (5) education and advocacy. Pain-related stigma can impact youth with JIA and their caregivers in various ways, with some reactions being protective of their health and well-being. Strategies to support youth with JIA and their caregivers with navigating pain-related stigma experiences are necessary to promote positive health outcomes.