Does Diagnostic Certainty Matter?: Pain-Related Stigma in Adolescents with Juvenile Idiopathic Arthritis.

OBJECTIVES: Childhood chronic pain conditions are common and vulnerable to stigma. Adolescents with chronic primary pain experience diagnostic uncertainty and describe pain-related stigma experiences across multiple social contexts. Juvenile idiopathic arthritis (JIA) is a childhood autoimmune, inflammatory condition with associated chronic pain, but with well-defined diagnostic criteria. The current study examined pain-related stigma experiences in adolescents with JIA. METHODS: Four focus groups of 3-7 adolescents with JIA (N = 16), ages 12-17 (Mage = 15.42, SD = 1.82), and parents (N = 13) were conducted to examine experiences of, and reaction to, pain-related stigma. Patients were recruited from an outpatient pediatric rheumatology clinic. Focus group length ranged from 28 to 99 minutes long. Two coders used directed content analysis resulting in 82.17% inter-rater level of agreement. RESULTS: Adolescents with JIA described pain-related stigma experiences predominantly from school teachers and peers, and less from medical providers (e.g., school nurses), and family members after a diagnosis. The primary categories that emerged were (1) Felt Stigma, (2) Internalized Stigma, (3) Anticipatory Stigma/Concealment, and (4) Contributions to Pain-Related Stigma. A common experience of pain-related stigma was the perception by others that the adolescent was too young to have arthritis. CONCLUSIONS: In common with adolescents with unexplained chronic pain, our findings indicate that adolescents with JIA experience pain-related stigma in certain social contexts. Diagnostic certainty may contribute to greater support among medical providers and within families. Future research should investigate the impact of pain-related stigma across childhood pain conditions.

"There's Nothing Wrong With You": Pain-Related Stigma in Adolescents With Chronic Pain.

OBJECTIVE: Adolescents with chronic pain often experience symptom disbelief and social rejection by others secondary to "medically unexplained" symptoms. Although chronic pain is common in adolescents, limited research has conceptualized these social experiences as pain-related stigma in this population. The purpose of this study was to identify and describe pain-related stigma among adolescents with chronic pain and their parents using focus group methodology. METHODS: Five adolescent focus groups (N = 18; Age M = 15.33 years, SD = 1.28) and three parent focus groups (N = 9) were conducted. Directed content analysis was used to analyze focus group transcripts. Stigma categories were developed a priori (Felt Stigma, Anticipated Stigma, Internalized Stigma, Concealment, and Controllability) and new categories emerged during analysis. Two coders reached 87.16% agreement for all groups (adolescent group: 90.34%; Parent group: 79.55%) and consensus was achieved for discordant codes. RESULTS: Adolescents and their parents endorsed pain-related stigma across all social domains. Analyses revealed four main categories for both groups (a) Felt Stigma (subcategories: pain dismissal, faking or exaggerating, and mental health stigma), (b) Anticipated Stigma and Concealment, (c) Internalized Stigma, and (d) Sources of Pain-Related Stigma (subcategories: pain invisibility, lack of chronic pain knowledge, lack of understanding, and controllability). CONCLUSIONS: Adolescents with chronic pain experience pain-related stigma from medical providers, school personnel, family members, and peers, which may have negative social and health implications. More research is needed to evaluate the link between pain-related stigma and health outcomes for adolescents with chronic pain. Clinical approaches targeting pain-related stigma are discussed.

Predictors of social functioning and quality of life in schizophrenia and autism spectrum disorder.

Schizophrenia (SZ) and Autism Spectrum Disorder (ASD) show overlap in social cognitive and functioning impairments. Proposed predictors of social functioning (SF) and quality of life (QL) have been symptom severity, IQ and social cognition. Empathy has rarely been compared between ASD and SZ and its predictive power on functional outcomes is unclear. We investigated general, affective, and cognitive empathy in 46 SZ, 30 ASD and 51 healthy controls (HC) and examined their relationship to SF and QL in addition to IQ and symptoms. SZ and ASD shared deficits in general and cognitive empathy, and personal distress, but only SZ showed deficits in affective empathy. Both groups showed lower performance-based empathy scores and only ASD showed slower responses compared to HC. Negative symptoms predicted QL in both groups, the more negative symptoms the worse QL (ASD t=-3.22; SZ t= -3.43; p<0.01), and only in ASD, IQ predicted QL, the higher the IQ the higher QL (t = 2.1; p<0.05). In ASD only, negative symptoms predicted SF, the greater negative symptoms the worse SF (t=-3.45; p<0.01), and communication deficits predicted SF, the higher deficits, the higher SF (t = 2.9; p<0.01). Negative symptoms but not empathy were the shared predictors of functioning across ASD and SZ.