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

Emily O Wakefield; Vaishali Belamkar; Mark D Litt; Rebecca M Puhl; William T Zempsky

doi:10.1093/jpepsy/jsab122

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

J Pediatr Psychol. 2022 Apr 8;47(4):456-468. doi: 10.1093/jpepsy/jsab122.

Authors

Emily O Wakefield^{1

2}, Vaishali Belamkar³, Mark D Litt⁴, Rebecca M Puhl^{5

6}, William T Zempsky^{2

7}

Affiliations

¹ Divisions of Pain and Palliative Medicine and Pediatric Psychology, Connecticut Children's Medical Center, Hartford, CT, USA.
² Department of Pediatrics, University of Connecticut School of Medicine, Farmington, CT, USA.
³ Department of Research, Connecticut Children's Medical Center, Hartford, CT, USA.
⁴ Division of Behavioral Science and Community Health, University of Connecticut Health Center, Farmington, CT, USA.
⁵ Rudd Center for Food Policy & Obesity, University of Connecticut, Hartford, CT, USA.
⁶ Department of Human Development and Family Sciences, University of Connecticut, Storrs, CT, USA.
⁷ Division of Pain and Palliative Medicine, Connecticut Children's Medical Center, Hartford, CT, USA.

Abstract

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.

Keywords: adolescents; chronic and recurrent pain; health disparity and inequities; parents; qualitative methods.

Publication types

Research Support, N.I.H., Extramural
Research Support, Non-U.S. Gov't

MeSH terms

Adolescent
Chronic Pain*
Family
Focus Groups
Humans
Parents / psychology
Social Stigma

Grants and funding

K23 AR073934/AR/NIAMS NIH HHS/United States