Social Barriers and Stigma in Youth with Juvenile Idiopathic Arthritis: A Systematic Review

Objectives The objective of this study was to better understand the social experiences of youth with juvenile idiopathic arthritis (JIA). JIA may significantly impact the physical, social, and emotional well-being of affected youth, due to experiences such as school absences, restricted participation in activities, and social isolation.[1] In addition, youth with JIA may also face stigma, discrimination, and misunderstanding from peers, teachers, and even healthcare professionals.[1]

Methods Four scientific literature databases were searched for qualitative studies published in peer-reviewed journals from 2014 to 2024 that explored social or stigma experiences of youth with JIA (aged <25 years). A total of 1471 articles were retrieved from the search. After removing duplicates, 697 unique titles and abstracts were screened for eligibility, leading to 32 articles for full text review. and 18 studies were included for data extraction. Two reviewers conducted a meta-synthesis following the 3-stage method outlined by Thomas and Harden.[2]

Results Six key themes emerged: (1) Physical Barriers to Social Interaction (absences, limited participation, and pushing beyond limits); (2) Lack of Understanding from Others (lack of factual information, invisible disease, ability to relate, and over/under-estimated); (3) Enacted Stigma (not believes of accused of lying or exaggerating, trivialization, social isolation, verbal harassment or bullying, and discrimination), (4) Anticipated Stigma (anticipation of a negative reaction, anticipation of discrimination, and concealment); (5) Internalized Stigma (wanting to be normal or feeling different, personal identity, perceived burden to others, and social-emotional impact); and (6) Social Strengths and Supports (self-disclosure, supportive others, supportive accommodation, peers with JIA, social media, and positive outlook).

Conclusion The review findings suggest that increasing public awareness, fostering peer support, enhancing self-advocacy skills, and implementing stigma-reduction strategies better support the social functioning of youth with JIA. Future research should explore the long-term effects of stigma and evaluate targeted interventions to improve social experiences and quality of life for this population.

References [1.] Min M. JBI Evidence Synthesis 2022;20:60-120. [2.] Thomas J. BMC Medical Research Methodology 2008;8:45-54.