Background
Self-perceived discrimination, which is also called “perceived discrimination”, is a type of negative psychological status. Once a group member begins to experience a process in which one is treated differently (especially unequally or disparagingly) [
1], self-perceived discrimination, originating from the person’s subjective feelings, is likely to arise (either intermittently or continually). It can reflect the level of actual discrimination or systematic over- or under-estimation of actual discrimination [
2].
Discrimination exists in a variety of forms, for example, gender, race, income, social class, workplace, insurance, disease, etc. [
3]. Disease-related discrimination refers to how healthy people intentionally exclude individuals with certain diseases or disabilities, thereby leading to isolation, prejudice, and discrimination towards them. Most literatures on disease-related discrimination have focused on pathogen carriers and patients with specific chronic infectious diseases (e.g., tuberculosis, AIDS, leprosy) [
4‐
7], or on patients with mental disorders such as depressive disorder or schizophrenia [
8,
9]. Disease-related discrimination can come from both general population and medical professionals, so it is widespread and worthy of attention [
10].
Cancer has become a common chronic disease worldwide [
11,
12]. The prevalence of long-term psychological effects of cancer cannot be neglected [
13,
14], which attaches more importance to cancer-related self-perceived discrimination [
15]. Patients can perceive discrimination due to fear of death and side effects from cancer treatments [
16‐
19].
Previous literature showed that cancer discrimination might originate from workplace and insurance. Workplace discrimination mainly included hiring discrimination, refusal of workplace accommodations, limited career advancement opportunities, and so on [
20]. Genetic discrimination was another issue cancer patients are facing [
21]. Researches had revealed that there were relations between cancers and gene mutations. For instance, hereditary breast and ovarian cancer (HBOC) was associated with mutations in BRCA [
22]. In these patients, fears of health insurance discrimination and life insurance discrimination were well documented, which was the proof of the existance of genetic discrimination in insurance [
21].
However, there is no proper measure to assess cancer self-perceived discrimination since there has been only a very few scales specifically evaluating stigma and shame. Cataldo JK designed the Cataldo Lung Cancer Stigma Scale (CLCSS) with 31 items and four subscales (stigma and shame, social isolation, discrimination and smoking) based on the HIV Stigma Scale, and he paid more attention to the relationship between smoking status and lung cancer stigma [
23]. Kissane DW developed a 20-item Shame and Stigma Scale (SSS) for head and neck cancer which contained 4 subscales: shame with appearance, sense of stigma, regret, and speech/social concerns, and he focused on shame and stigma after alteration of body image and functions [
24]. These scales had excellent reliability and validity, but they only focused on stigma which was just a part of cancer-related discrimination and were limited to a single type of cancer.
The purpose of our study was to develop a comprehensive Cancer Self-Perceived Discrimination Scale (CSPDS) to assess the level of self-perceived discrimination among Chinese cancer patients.
Discussion
Our research showed that cancer-related self-perceived discrimination has three main subscales: social withdrawal, stigma, and self-deprecation, therefore the 14-item CSPDS was developed using the classical test theory. There was a high fit degree between the three factor structure and the initial conception (χ2/df = 1.216, GFI = 0.935, AGFI = 0.903), the I-CVIs and Pearson correlations of content validity were all at a satisfactory level, which confirmed that the CSPDS had a good instrument validity. It also has a good stability measured by Cronbach’s alpha (0.829), Spearman-Brown coefficient (0.827), and ICC (0.944). Its survey completion time and readability scores are at acceptable levels. Thus, it can be used to assess cancer-related discrimination in terms of social withdrawal, stigma, and self-deprecation.
The CSPDS is more comprehensive and more concise compared with CLCSS and SSS. Although the Cronbach’s alpha of the CSPDS may be lower than the 31-item CLCSS (Cronbach’s alpha = 0.96) and the 21-item SSS (Cronbach’s alpha = 0.94) [
23,
24], the CSPDS had excellent test-retest reliability and construct validity, and less items. While the social withdrawal/isolation and stigma subscales and items in the CSPDS are similar to the CLCSS and the SSS, we include the self-deprecation subscale. Most patients, when interviewed, expressed that self-deprecation was a major cause of self-perceived discrimination, therefore, its inclusion could be useful.
The CSPDS has a wider scope of application than the CLCSS and the SSS. The SSS focuses on the influence of the facial tissue defect in patients with head and neck cancer [
24]. The CLCSS was used primarily in lung cancer patients with a history of smoking, because researchers considered stigma was based on the belief that smoking is the major cause of one’s own cancer [
36]. But lung cancer patients in China may not consider smoking a stigma or a cause of discrimination. The prevalence of smoking is very high in China, therefore, not like in U.S. or in Europe, there is no nationwide strict anti-smoking laws. Even through No-smoking signs are eye-catching in public places, smokers will not obey. These two scales are both limited to a single kind of cancer, or a single cause of cancer. However, the CSPDS can be applied to assess all kinds of cancer and could be a more promising tool of primary screening of self-perceived discrimination.
Notably, the CSPDS shows obvious differences in patients with different self-rated health states and genders. The CSPDS scores of participants who reported poor or average self-rated health state were higher than those who reported good state. It may indicate that perceived discrimination of cancer patients is positively correlated with subjective severity of the disease [
36]. The result that women had higher scores than men could be linked to feminine psychological characteristics, social status, family status, and even sexual discrimination, however, we believe cancer is a catalyst for the discrimination against them. Women’s family and social status in poor rural areas is far below the national average level in China [
37]. Consequently, when women in poor Southwest China suffer from cancer, the discrimination against them would get worse or be newly genarated. Factors such as feudal thoughts or male chauvinism could lead to the beliefs that ill women are useless and a burden to the family, therefore they become victims of cancer-related discrimination.
Previous studies about cancer-related discrimination focused on workplace and insurance. However, in our semi-structured interviews with the 11 patients, no one described obvious workplace discriminatory behaviors in any form, so we did not include items of workplace discrimination in the preliminary version of the CSPDS. When comparing the participants’ characteristics, results of occupational classification showed negative. This may be connected with Chinese health retirement policy, fair employment policy, and older age sample selection.
In this study, we find no obvious basic medical insurance discrimination. In our semi-structured interviews, 3 interviewees complained that they had experienced insurance discrimination following cancer, so we did set the item “Cancer patients are vulnerable to be treated unfairly by insurance” in the preliminary version, but it was deleted after the item analysis. Our study showed 176 participants used basic health insurance (2 didn’t use medical service were excluded). Chinese basic health insurance schemes have achieved full coverage. It means that more than 1.17 billion people have access to basic health insurance schemes. Chinese basic health insurance system is divided into the Urban and Rural Resident Medical Insurance (URRMI) and the Urban Employee Medical Insurance (UEMI). Chinese government is trying to help ordinary people to pay for their medical costs. In general, Chinese people have an easy access to median low-level medical facilities, and an easy access general hospitals or specialized hospitals [
38]. Patients with extreme real-life difficulties can enjoy extra medical subsidies from the government. The Chinese government has also established a Medical insurance for major diseases, to reimburse the high medical expenses of major diseases such as malignant tumors for urban and rural residents. These measures have been further easing the phenomenon that some patients are back to poverty because of those major diseases. Some charities and pharmaceutical companies have also launched charitable assistance programs against high-priced cancer drugs, further increasing access to high-priced cancer drugs for patients with financial difficulties.
In clinical treatment, some cancer patients suffer from social discrimination, which can have a negative impact on their health. The CSPDS would be helpful in discovering this problem in a timely manner. We envisage this measure being properly administered in terminal cancer patients and long-term cancer survivors. The stigma, rejection and isolation cancer patients suffering could come from the public’s fear of death [
16]. Terminal cancer patients are always in poor physical condition, and confronted with the threat of death. Our results suggest that the patients reporting poor self-rated health suffered more discrimination than those reporting good health or average health. So terminal cancer patients may experience more perceived discrimination. Besides, perceived discrimination is a negative psychological factor. Long-term cancer survivors could perceive more negative impacts of cancer. These perceptions appear to influence, or are potentially influenced by, physical and mental health-related quality of life [
39]. Therefore we think that long-term cancer survivors also may experience more perceived discrimination.
Having taken those into consideration, the CSPDS may be more appropriate for preliminary screening of perceived discrimination. Furthermore, the CSPDS may help to develop targeted patient education, psychological diagnosis, psychological counseling or treatment, and social interventions, so as to improve patients’ quality of life and social functioning as well as to prolong survival time among cancer patients.
As an exploratory study, this study has relatively few inpatients from a single center. The samples come mainly from South-western China, where is underdeveloped, so this result represents only patients in Southwest China. Future studies should cover multiple areas and centers with larger samples, comparing the self-perceived discrimination levels in different types of cancer, and evaluating the correlations between self-perceived discrimination and other negative psychological states (e.g. anxiety, depression, disease uncertainty, post-traumatic stress disorder, etc), so as to provide more abundant evidence for cancer-related discrimination. Furthermore, as there is no authoritative or widely agreed standard measure in this field, we did not assess the criterion-related validity of the CSPDS. Moreover, if any researcher need to use this measure, we allow him/her to translate it into other languages and further verify the reliability and validity, or revise it.
Further studies will be required to identify the precise relationship between gender and cancer-related discrimination. In view of possible workplace and insurance discrimination, young cancer patients and long-term survivors should be studied to determine whether workplace discrimination is in existence, and how it would influence the patient. More varieties of commercial insurance discrimination, such as health insurance, life insurance and endowment insurance, will also be considered in later stuies.