Abstract

Hidradenitis suppurativa (HS) is a chronic inflammatory skin condition associated with significant physical and psychosocial burden. Despite increasing clinical recognition, patients frequently experience diagnostic delays, stigma, and inadequate communication with healthcare providers. The purpose of this study was to examine communication patterns surrounding HS and explore how these patterns relate to stigma, misinformation, and patient experiences. This study used a qualitative design incorporating a structured literature review and semi-structured interviews with 85 participants. The Narrative Paradigm guided analysis, focusing on how individuals construct meaning through their experiences and interactions. Thematic analysis identified key patterns in patient-provider communication, misinformation exposure, and emotional impact. Findings revealed that a majority of participants reported feeling dismissed by healthcare providers, contributing to delayed diagnosis. Many participants also reported encountering misinformation through social media, while others relied on self-education through scientific sources. A key finding was that many participants reported that providers did not physically examine affected areas during initial visits, further contributing to misdiagnosis and delayed diagnosis. Notably, all participants who reported dismissal identified as Black or African American, suggesting potential disparities in communication and care. These findings highlight that communication, clinical behavior, and misinformation operate together to shape patient experiences. Addressing these gaps through structured communication, improved clinical engagement, and targeted patient education may reduce stigma, improve diagnostic timelines, and enhance overall patient outcomes.

Publication Date

4-13-2026

Document Type

Master's Project

Student Type

Graduate

Degree Name

Health and Well-being Management (MS)

Department, Program, or Center

Wegmans School of Health and Nutrition

College

College of Health Sciences and Technology

Advisor

Tracy Worrell

Campus

RIT – Main Campus

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