<p>Validation of the Chinese Version of the Shame and Stigma Scale in Patients with Head and Neck Cancer</p>

Abstract

PurposeHead and neck cancer (HNC) patients suffer from perceived shame and stigma due to the illness diagnosis, as well as disfigurement following surgery. To measure HNC patients’ perception of shame and stigma, the Shame and Stigma Scale (SSS) was developed and preliminarily validated. In this study, we aimed to translate, adapt, and validate the SSS in Chinese.MethodsThis study consisted of a cross-sectional design with consecutive sampling and consisted of two stages: (1) translation of the SSS into Chinese by two bilingual professionals and (2) examination of the Chinese version of the SSS (C-SSS) for internal consistency, inter-rater reliability, test-retest reliability, construct validity, and concurrent validity. In total, 159 inpatients with HNC (mean age: 56.8 years, 95% males) were enrolled at a medical center in Southern Taiwan.ResultsThe Principal Component Analysis of the C-SSS revealed a five-factor structure: 4 of the 5 factors were replicated in the original SSS, including Shame with Appearance, Regret, Social/Speech Concern, and Sense of Stigma; only factor 4, Self-discrimination, was newly identified in the current study. C-SSS showed acceptable internal validity (Cronbach’s α =0.85), test-retest reliability, inter-rater reliability, and fair concurrent validity with the Taiwanese Depression Questionnaire (TDQ), Hamilton Depression Rating Scale (HAM-D), Hamilton Anxiety Rating Scale (HAM-A), and Explanatory Model Interview Catalogue (EMIC).ConclusionThe findings of this study indicate that C-SSS is a reliable and valid instrument for evaluating HNC patients’ perception of shame and stigma in the Taiwanese population.

Stigma in the face of cancer disfigurement: A systematic review and research agenda

“…In a study that reported on development of a scale to measure shame and stigma in HNC patients, greater perceived stigma as measured by items such as "people avoid me because of my cancer" and "I sense that others feel strained when around me," was associated with increased psychological difficulties including depression and demoralisation, and inversely related to quality of life (Kissane et al, 2013). These findings were replicated in a Taiwanese HNC sample that found greater stigma associated with depression and anxiety (Tseng et al, 2019).…”

“…Of the 16 studies included in the review, ten were qualitative investigations conducted by telephone or in-person interviews and all were moderate to high quality. The remaining six quantitative studies ranged from low to high quality; two described the development of a stigma scale (Kissane et al, 2013;Tseng et al, 2019), one investigated quality of life (QOL) in cancer patients with disfigurement (Arunachalam et al, 2011), one investigated perceived (felt) stigma in laryngectomy patients (Devins, Stam, & Koopmans, 1994), another investigated the effect of breast asymmetry following cancer treatment (Waljee et al, 2008) and the final study compared the psycho-social impact of stigma in lung to HNC cancer patients (Lebel et al, 2013). Most of the studies examined HNC cancers (n = 11) with the remainder investigating breast or a combination of various cancers.…”

A Hybrid Method for the Cross-Cultural Adaptation of Self-Report Measures

“…So far only three studies have been conducted on shame and stigma for head and neck cancer. The first study was conducted by Kissane et al authors developed the scale (Kissane et al 2013), the second study was conducted by Pirola et al in which authors translated the scale in Brazil language (Pirola et al 2017), and the third study was conducted by Tseng et al in which authors translated the scale into the Chinese language (Tseng et al 2019).…”

“…Traditional Translation Method Traditional translation was carried using modified guidelines defined in previous studies (Beaton et al 2000;Tseng et al 2019). The translation process was conducted into two phases:…”

“…Pirola et al translated the shame and stigma scale into Portuguese (Brazil) and evaluated its reliability and validity (Pirola et al 2017). Recently, Tseng et al translated and validated the shame and stigma scale into the Chinese language (Tseng et al 2019). In the present study, we intend to compare the validity of shame and stigma scale when translated in the Hindi language traditionally by language experts and when translated using online translator; and to develop a hybrid method which combines both online and traditional methods to carry out translation of a self-reported measure in a cost and time-effective manner.…”