Elevating the voices of Black youth with painful disorders of gut brain interaction: A qualitative study of stigma and resilience

Tolulope Adetayo; Corinne T Evans; Emily O Wakefield; Kaylee B Crockett; Reed A Dimmitt; Felicitas Huber; Demario S Overstreet; Burel R Goodin

doi:10.1016/j.jpain.2026.106305

Elevating the voices of Black youth with painful disorders of gut brain interaction: A qualitative study of stigma and resilience

J Pain. 2026 May 3:45:106305. doi: 10.1016/j.jpain.2026.106305. Online ahead of print.

Authors

Tolulope Adetayo¹, Corinne T Evans², Emily O Wakefield³, Kaylee B Crockett⁴, Reed A Dimmitt⁵, Felicitas Huber⁶, Demario S Overstreet⁷, Burel R Goodin⁶

Affiliations

¹ Department of Psychology, University of Alabama at Birmingham, Birmingham, AL, USA. Electronic address: tadetay1@uab.edu.
² Department of Psychology, University of Alabama at Birmingham, Birmingham, AL, USA.
³ Division of Pain and Palliative Medicine, Connecticut Children's Medical Center, Hartford, CT, USA; Department of Pediatrics, University of Connecticut School of Medicine, Farmington, CT, USA.
⁴ Department of Family and Community Medicine, University of Alabama at Birmingham, Birmingham, AL, USA.
⁵ Pediatric Gastroenterology, Dothan Pediatric Subspeciality Clinic, Dothan, AL, USA.
⁶ Department of Anesthesiology, Washington University School of Medicine in St. Louis, St. Louis, MO, USA.
⁷ Division of Gastrointestinal Surgery, Department of Surgery, University of Alabama at Birmingham, Birmingham, AL, USA.

PMID: 42086097
DOI: 10.1016/j.jpain.2026.106305

Abstract

Children with painful disorders of gut brain interaction (DGBIs) report stigmatization from medical providers, school personnel, family members, and peers. The consequences of pain-related stigma include concealment of symptoms, lower mood, and poorer functioning. Stigma from other identities (e.g., race, gender) can intersect with pain-related stigma. Unfortunately, intersectional stigma remains understudied in the pediatric pain literature. Furthermore, chronic pain research tends to focus on deficits, rather than strengths. Thus, the current study aimed to understand the experiences of stigma and means of resilience in a sample of Black youth with painful DGBIs. Twenty Black youth between 8 and 18 years old completed semi-structured qualitative interviews. Thematic analysis was conducted via a combined deductive (a priori codes based on theory) and inductive (codes emerging from the data) approach. Codes were grouped into 4 major themes including 1) Experiences of Stigma, 2) Responses from Social Spheres of Influence, 3) Coping Strategies, and 4) Patient-centered Approaches to Treatment, and 8 subthemes. Overall, participants reported stigma from providers, teachers and nurses, family, and peers, while also relying on these groups for support. They were most sensitive to support from caregivers. Others' lack of knowledge about DGBIs appeared to be the largest risk factor for stigma, indicating a potential role for providers in mitigating stigma. Some youth also described the ways that intersecting identities (i.e., race, age, and gender) influenced how others viewed and interacted with their pain. Considerations for reducing stigma and facilitating coping are discussed. PERSPECTIVE: This article presents qualitative data on the experiences of Black youth with painful disorders of gut brain interaction. This study contributes to efforts to diversify pain research. Findings may aid in developing patient-centered interventions for chronic pain.

Keywords: Black youth; DGBIs; Intersectionality; Qualitative; Stigma.