Beyond the Skin: Women’s Lived Experiences with Hidradenitis Suppurativa
Bibliographic record
Abstract
Hidradenitis Suppurativa (HS) is a chronic, recurrent inflammatory skin disease, categorized by inflamed regions in follicular areas (i.e., hair follicles) located in the body (Jemec, 2012). Common psychological comorbidities include elevated levels of anxiety, depression, and suicidality, as well as body image disturbances, poorer quality of life, and diminished self-esteem and self-worth as a result of symptom impacts (Chernyshov et al., 2021). Due to the increased incidence rate of HS in women, coupled with the societal and medical expectations surrounding women’s bodies, these comorbidities are even more prevalent for women (Sabat et al., 2020). The purpose of this qualitative study was to gain a deeper understanding of the lived experiences of women diagnosed with HS by amplifying a more integrative, strength-based understanding of the condition. A total of 25 HS-diagnosed Canadian women (age range 20 to 63 years old; M = 36.16, SD = 10.61) were interviewed about the challenges they faced with HS and how they overcame them through strategies of resilience and meaning-making. Reflexive thematic analysis techniques (Braun & Clarke, 2019), situated with a feminist social constructionist lens, were employed to explore these accounts. We generated four major themes relating to how women reflected on their experiences living with HS, including (1) Developing Agency in the Diagnosis Journey, (2) Cultivating Methods to Cope, (3) Harnessing One’s Voice for Advocacy and Change, and (4) Gaining Insight and Growth Through Life-Long Learning. The findings from this study have direct implications for future research about HS, including considerations for how to improve the well-being and quality of life of this population through more active and advantageous strategies that can inform more holistic treatment practices (e.g., resilience-focused training and support groups).
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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.005 | 0.008 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.013 | 0.015 |
| Scholarly communication | 0.007 | 0.006 |
| Open science | 0.002 | 0.008 |
| Research integrity | 0.002 | 0.004 |
| Insufficient payload (model declined to judge) | 0.003 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".