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Experimental Paradigm for Measuring the Effects of Self-distancing in Young Children
Published on: March 1, 2019
Experiences of stigma in children with long COVID
Calliope Holingue1,2, Cindy Villatoro3, Lisa A Jacobson4,5
1Center for Autism Services, Science and Innovation, Kennedy Krieger Institute, Baltimore, MD, USA. choling1@jhu.edu.
Objective:
This study examined stigma experiences among children and adolescents with Long COVID, a chronic condition marked by persistent symptoms following SARS-CoV-2 infection. We sought to characterize the nature, prevalence, and impacts of stigma on affected youth using a mixed-methods approach.
Methods:
A cross-sectional survey was administered to 58 caregivers of children seen at a pediatric post-COVID clinic, including the PROMIS® Parent Proxy Global Health 7 + 2 measure and nine adapted items from the Internalized Stigma of Mental Illness Inventory. Additionally, 18 parents participated in qualitative interviews analyzed using inductive thematic analysis.
Results:
Stigma was widespread: over 65% of caregivers reported their child felt out of place, and nearly half reported feelings of inferiority or shame. Lower PROMIS Total T scores, reflecting worse caregiver-perceived child health, were significantly associated with experiences of alienation, discrimination, and stigma resistance. Qualitative findings identified three themes: healthcare discrimination, distrust and skepticism, and alienation and isolation, contributing to social withdrawal, emotional distress, and barriers to care.
Conclusions:
Stigma is pervasive among children with Long COVID, affecting many aspects of life including healthcare interactions and social relationships. Addressing both enacted and internalized stigma is essential to improving health and psychosocial outcomes in this population.
Impact:
This article shows that stigma is pervasive and multifaceted in pediatric Long COVID, shaping children's health, social participation, and emotional well-being. It adds the first mixed-methods evidence combining quantitative and qualitative data to describe stigma experiences in this population. The study identifies specific stigma domains (alienation, discrimination, social withdrawal) linked to poorer health and functioning, highlighting areas for targeted intervention. The impact is to guide future clinical, educational, and policy efforts aimed at reducing stigma and improving outcomes for affected youth.
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