Social, Demographical, and Clinical Correlates of Stigma in Iranian Breast Cancer Women

Background: This study aimed to assess the severity of disease-related stigma felt by Iranian women with breast cancer as well as to determine the contextual correlates of stigmatization. Methods: This cross-sectional study included 223 breast cancer patients between October-2014 and May-2015, in Tehran, Iran. Eligible patients were asked to provide background data and to complete Stigma Scale for Chronic Illness 8-item (SSCI-8) questionnaire. Binomial logistic regression analysis was employed to identify stigmatized (SSCI-8 > 8) and heavily stigmatized (SSCI-8 >10) groups. Results: A total of 58.3% (n=130) stated that they were stigmatized at least “rarely.” In the multi-variable models in the total sample, living with spouse, Turkic ethnicity, family history of chronic diseases were the signicant associations of stigmatization, while no variable was found to be associated with heavily stigmatization. In the sub-sample having the data of spouse’s education (n=185), living with spouse, lower spouse’s education, and family history of chronic diseases were the signicant correlates of stigmatization; while, in terms of heavily stigmatization, only the lower spouse’s education was the signicant indicator. Conclusions: Stigmatization tails women with breast cancer especially those living with their poorly educated husbands which call for dyadic interventions. a weak yet signicant correlate of the latter group (OR = 1.07, 95% CI = [.99, 1.15]). In terms of heavily stigmatization in this subsample, only the lower education of the spouse surfaced as the signicant correlate (OR = 2.85, 95%CI = [1.39, 5.86]).

The Stigma Scale for Chronic Illnesses 8-item version (SSCI-8) [27] was used to assess the experienced stigmatization. This short-form instrument was essentially developed for patients with neurological conditions in USA as its population of interest. SSCI-8 encompasses two forms of enacted and internalized stigma within a unidimensional construct. The eight items on a ve-point Likert type scaling in the range of "never", "rarely", "sometimes", "often", and "always", yields a raw total stigma score of 8 to 40. The original scale includes three items for internalized stigma (e.g. "I felt embarrassed about my illness.") and the remaining ve addressing enacted stigma (e.g. "Because of my illness, some people seemed uncomfortable with me."). The scale showed acceptable reliability and validity among US neurological population with the Cronbach's alpha of 0.89 for the total scale. In the current dataset, the Cronbach's alpha for enacted stigma, internalized stigma, and total stigma was 0.837, 0.725, and 0.866, respectively, indicative of adequate internal consistency reliability. The scale has been validated in another publication on the same dataset [28]. To assess stigmatization experienced by breast cancer patients, two dichotomous variables were de ned based on the total score, in which the patients labeled with un-stigmatized if they reported all the eight items as "Never" i.e. SSCI-8's score = 8 versus stigmatized if they reported at least one experience i.e. SSCI-8's score ≥ 9, and fairly stigmatized if they related to up to three of the statements i.e. SSCI-8's score ≤ 10 versus heavily stigmatized if they reported three or more stigmatizing experience i.e. SSCI-8's score ≥ 11.

Data Analysis
Descriptive analysis was used to report the sample characteristics and stigmatization experiences. Univariate and multivariate binomial logistic regression, which estimates the probability that a characteristic is present, was employed to nd the stigma risk factors. To reach the best model, the variables with higher rates of missing data (i.e. cancer stage, income level, and time since diagnosis) were excluded from the logistic analysis modelling. Twenty missing data for BMI (0.09%) was imputed by the median of the non-stigmatized and stigmatized patients separately, using the single imputation method. The recommendations suggested for model-building were employed to determine the proper covariates composing the best model [29,30]. First, the univariate logistic regression including the nominal variables was carried out to identify the stigmatized group. The prospective correlates were included if they could identify the stigmatized group with P< 0.250. Then, three sets of models were further estimated: 1) univariate model concerning heavily stigmatized group, 2) multivariate model concerning stigmatized group, 3) multivariate model concerning heavily stigmatized group. In addition, there were 38 missing data corresponding to spouse's education, including 35 patients with single marital status and three with missing value; thus, the whole sample irrespective of the spouse's education (n=223) and the sole subsample with available data regarding the spouse's education (n = 185) were tested as two separate multivariate models. P-value < 0.10 was considered for signi cance level.
The rate of Stigmatization Figure 1 presents the statements of SSCI-8 with respect to the ratings of the patients, along with the descriptive statistics of enacted, internalized and total stigma experienced by patients. The mean of total stigma was 11.75±5.56, from the attainable score range of 8 to 40, which showed a very low rate of stigmatization in the sample. This was also true for both enacted and internalized stigma with mean scores of 6.99±3.44 and 4.77±2.63, respectively. Overall, this indicates that Iranian breast cancer women had experienced a very negligible amount of stigma in association with their condition.
As it is further illustrated in gure 1, about 41.7% (n=93) reported that neither they experienced any sort of enacted stigmatization nor did they internalize the stigma of their condition. However, 58.3% (n=130) of the sample reported that they experienced stigmatization from at least "rarely" up to a more frequent basis of "always" in their course of the disease. Of them, 12% (n=27) had experiences of being avoided by people, 10.7% (n=24) felt that they were abandoned by others, 11.2% (n=25) stated that some people turned their faces away from them, 21.6% (n=48) felt embarrassed by their illness, 14.9% (n=34) stated that there were some people who seemed to feel uncomfortable at the patients' problems, 21.5% (n=48) were in the shame of their physical limitations, 8% (n=18) were treated unkindly, and 17.9% (n=40) were treated by other people as if the fault of disease lied with the patients. Patients reported these experiences in a frequency range of sometimes to always, indicating that there were a considerable number of women who were still under in uence of stigmatization.

Correlates of Stigmatization
As the univariate models are summarized in Table 2 Table 3 reports the multi-variable models for the total sample and the subsample merely con ned to the patients whose data regarding their spouse's education was available.

Discussion
This study aimed to evaluate the demographic, social, and contextual factors indicating or contributing to the experience of stigmatization among Iranian breast cancer women. This sample of Iranian women mainly consisted of less educated patients from low-income families. Somewhat congruent with existing studies on cancer stigma, our study showed a polarized rate of stigmatization among Iranian breast cancer women, with 4 in 10 patients reporting no experiences of stigma, and 6 in 10 patients reporting a low to high levels of stigma experience. Using different instrument for assessment of stigma and not exclusively addressing breast-cancer stigma, over 30% of Korean cancer survivors were found holding stereotypical views of themselves [14] and about 18% of Turkic cancer patients felt socially excluded [31]. More than a quarter of Iranian cancer patients are reported to have negative attitude towards cancer [32] and 17.4% of general public have acknowledged their discomfort with being around cancer patients [23]. Although the majority of patients in our study were never or rarely subjected to stigma, a notable proportion of them reported to be stigmatized on a more frequent basis, ranging from sometimes to always.
Among the latter, there was a high rate of internalized stigma both in the forms of embarrassment of illness and physical limitations caused by either surgery or side effects of medical treatment such as weight gain [33]. Treatment of breast cancer entails salient physical alterations that negatively affects patients' self-esteem and psychosexual functioning. A considerable proportion of Polish breast cancer women were found to be embarrassed of being naked in the presence of their partners. Patients survive cancer at the expense of dis gured body, ensuing emotional strains and nally falling victim to stigmatization [34]. Triggered by their disturbed body image and with a threatened identity, they tend to resort to negative marital coping efforts such as self-blaming and avoidance [35]. Among statements related to enacted stigma, being blamed for disease by other people was the most popular one that our patients had agreed with.
In a conceptually similar study on Indian women, verbal abuse, social alienation, blaming attitudes and mistreatment by their husband, family and community at large comprised the most common manifestations of breast cancer stigma [19]. Unlike lung cancer with the widely known and avoidable risk factor of smoking that has made the a icted patients -sometimes erroneously-easy targets for blame, in the absence of explicit lifestyle-related cancer-risk behaviors, general public rarely makes such assumptions about breast cancer [13,22]. While women with breast cancer might be in part spared from this aspect of blame, they still have to handle the insecurity and discomfort of all their surrounding people when they are confronted with somewhat incurable disease and overwhelmed by their shattered view of a just-world [11,36].
As an alarming nding of current study, wives of poorly educated husbands as well as those living together with their husbands were evidently more vulnerable to stigmatization. Marital issues were always of utmost concern in lives of breast cancer patients [35,37]. Patients aside, their partners are also menaced by the diagnosis and experience great deal of emotional strain while trying to come to terms with what has befallen them and adapting to the burden of caregiving and added household responsibilities [38]. However, given the criticality of spousal relationships in providing patients with support and maintaining their overall wellbeing, unmet needs of these women, ensuing marital tensions or even worse being directly stigmatized by their partners would be the recipe for a full-blown psychological catastrophe [38,39]. Not unexpectedly, cancer patients receiving a poor-quality care from their caregivers are more prone to internalize the stigma [13]. Meanwhile, psychosocially advantaged partners seem to be more e cient in tackling the challenges [40], for instance, Iranian Turkman breast cancer patients with highly educated spouses were found to have improved medical adherence [41]. With the same rationale, poor educational background of husbands in GAZA has been frequently associated with misconceptions about breast cancer screening programs that would ultimately jeopardize their wives' health [42]. It is of an especial concern in societies where an overwhelming majority of men are ignorant of cancer symptoms and the importance of a timely diagnosis, and yet hold the key to the health -related decisions of their spouses [43]. Similarly lower education of spouse was proved to be a strong predictor of hopelessness among Turkic breast cancer women [44]. By the same token, poor education, low-income, belonging to ethnic minorities, spouse role obligations and previous experiences of prejudice all acted as constraints delaying the help-seeking behavior of American women with self-discovered cancer symptoms [45]. These studies are in complete accordance with our ndings where belonging to ethnic minorities (i.e. Turkic women) and living together with poorly educated husband were strong predictors of stigmatization.
Our study also revealed that a history of familial chronic diseases could increase the likelihood of stigmatization. It can be inferred that a positive family medical history adds an air of social vulnerability to the mix of marital tension with poorly educated spouse. Thus, partners of women with breast cancer need to be provided with tailored informational support which enables them to better cope with emerging issues and effectively support their family [46]. Higher BMI, albeit weekly, associated with the stigmatized group which might be attributable the additional disturbance of self-image and shame brought about by this side effect of medication [17,33].
A number of background and clinical features that despite not making the cut for the nal models, were found to be fairly correlated with stigma.
Disadvantageous educational and employment status of patient or their 1 st degree family member render these patients vulnerable to discriminatory treatment. Attending the exhaustive radiation therapy sessions on a regular basis as well as getting admitted to hospital not only demoralizes patients but also creates plenty of occasions to encounter prejudiced treatment in healthcare settings. It has been reported that Iranian breast cancer patients tend to rely heavily on supports from their own family and 95% of them receive support from siblings, children and friends [24]. In this sense, having more children -as a form of social support-may be protective against stigma, however, meeting their needs may also be overtaxing on their already improvised resources. Moreover, the diagnosis of cancer brings changes in dynamics of a household and the very nature of a mother-child relationship. In other words, the mere diagnosis of cancer might surpass the child's ability to assimilate, let alone unburdening his mother of her stress-riddled life. Similarly, patients who have underwent more than two major life events may lack the psychological resources essential for tackling another hurdle. All in all, whenever faced with a hurdle (i.e. cancer) that is likely to exceed the resources of a well-intentioned intimate partner, immediate family members, friends and even one's own self, help must be sought from professionals interested in public education.
Despite seemingly low rates of stigma experienced by breast cancer patients, its grave impact on various domains of patients is evident. In our study, poor educational background of father and husband, living together with husband and belonging to ethnic minorities were among the main contextual indicators of stigmatization. Collectively, the diagnostic and therapeutic advancements of medical practice should be augmented by psychosocial and individual interventions to effectively emend the misconceptions associated with breast cancer, promote sense of cooperation among patients and their partners as well as to enhance the support offered by caregivers of these patients to ultimately improve the overall quality of life of the patients and their families [47]. It seems that tailored educational interventions are needed to raise awareness of poorly educated spouses of the cancer patients and to provide them with support essential for a successful cope with the burden of complex situation they are faced with. It is worth mentioning that, the amount of social support breast cancer patients receive from family or friends affects the all-cause mortality risk of these patients [37]. Given the decisive role of knowledge and education of caregivers on the quality of their relationship with patients, the concepts of spouse-education and public-education need to receive due attention.
There are a number of limitations that should be taken into consideration for the interpretation of the results. This sample might not be a suited representative of Iranian breast cancer women and causal inferences are limited by its cross-sectional design. We suggest that future researches address the vulnerability of women to internalize the enacted stigma. For this purpose, speci c domains of stigmatism experienced by women need to be evaluated using more comprehensive instruments. Moreover, more research is needed to nd out the pathways through which social and contextual factors aggravate the negative aura of breast cancer both in society at large and in the lives of individuals. In addition, interventional and longitudinal studies are to be conducted with the purpose of con rming the substantial role of raising public awareness, improving public attitude towards cancer and especially educating the illiterate and low-educated spouses on health-related aspect of disease, as well as re ning the misperceptions of patients themselves in decreasing the rate of cancer-stigma.

Declarations
Ethics approval and consent to participate The study protocol was approved by ethics committee of Tehran University of Medical Sciences, Tehran, Iran. Verbal informed consent was obtained from the participant.

Consent for publication
Not Applicable.

Availability of data and materials
The datasets generated and/or analysed during the current study are not publicly available but are available from the corresponding author on reasonable request.

Competing interests
None.