Preliminary evaluation of the reliability and validity of the Shame and Stigma Scale in head and neck cancer
Abstract
BACKGROUND: Facial disfigurement from head and neck cancer can lead to the development of shame and a perception of stigma. We sought to develop the Shame and Stigma Scale (SSS) to measure this. Items were administered to 104 patients with squamous cell carcinoma of the oral cavity, together with measures of quality of life and adaptation. Exploratory factor analysis and item response theory (IRT) models assessed its psychometric properties. RESULTS: A 20-item SSS had a Cronbach's alpha of 0.94 and 4 factors: shame with appearance, sense of stigma, regret, and speech/social concerns. These factors show satisfactory internal validity, convergent validity with the Functional Assessment of Cancer Therapy-General (FACT-G) and Functional Assessment of Cancer Therapy-Head and Neck (FACT-H&N), Demoralization Scale and Patient Health Questionnaire (PHQ) Depression, and divergent validity with the Social Desirability Scale. The items displayed desirable properties in factor-specific (IRT) models. CONCLUSION: Further validation studies are worthwhile to confirm this factor structure, reliability, and validity, and generalizability to all head and neck cancers.
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There was a positive relationship between demoralization and shame and stigma.
“shame and stigma”
From A systematic review of the demoralization syndrome in individuals with progressive disease and cancer: a decade of research (2015) · cites this paper as [43]
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- Authors
- Kissane, D. W., Patel, S. G., Baser, R. E., Bell, R., Farberov, M., Ostroff, J. S., Li, Y., Singh, B., Kraus, D. H., & Shah, J. P.
- Affiliations
- Memorial Sloan Kettering Cancer Center (US)
- Corresponding author
- Kissane, David W.
- ORCID
- Venue
- Head & Neck
- Publisher
- Wiley
- Published
- 2012-02-24
- Volume
- 35
- Issue
- 2
- Pages
- 172-183
- ISSN
- 1043-3074 (ISSN-L)
- 1097-0347
- OpenAlex
- W2153177161
- Cited by
- 110
- References
- 53
- Citations by year
- 2026: 6 · 2025: 12 · 2024: 9 · 2023: 8 · 2022: 13 · 2021: 14 · 2020: 11 · 2019: 4 · 2018: 6 · 2017: 6 · 2016: 6 · 2015: 5 · 2014: 6 · 2013: 3
- FWCI
- 2.21
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Head & Neck (publishedVersion)
- PubMed (publishedVersion)
- Topics
- Health Sciences › Medicine › Oncology › Cancer survivorship and care
- Health Sciences › Medicine › Otorhinolaryngology › Head and Neck Cancer Studies
- Social Sciences › Education › Health Education and Validation
- Keywords
- shame, stigma, head and neck cancer, oral squamous cell carcinoma, facial disfigurement, psychometric validation, scale development, quality of life, demoralization, depression, social problems
- MeSH terms
- Adaptation, Physiological, Adaptation, Psychological, Age Factors, Body Image, Carcinoma, Squamous Cell, Cross-Sectional Studies, Factor Analysis, Statistical, Female, Head and Neck Neoplasms, Humans, Male, Mouth Neoplasms, Quality of Life, Surveys and Questionnaires, Self Concept, Sex Factors, Shame, Reproducibility of Results, Sickness Impact Profile, Risk Assessment, Neck Dissection, Social Stigma
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