Perceived health-related stigma among patients with breast cancer

Qin-Xin Wng ,Yn Bi,Guo-Fng Lu,Ci-Yun Zhng

Department of Nursing,The First Hospital of Lanzhou University,Lanzhou,Gansu 730000,China

1.Introduction

Generally,breast cancer patients will be treated with surgery,chemotherapy,radiotherapy,or a combined treatment.2Nearly all patients who are diagnosed with breast cancer undergo surgical resection as an indispensable part of their cancer therapy.

Breast cancer patients can bene fit from these treatments,but at the same time,they can also experience many deleterious effects.Many studies have shown that breast cancer diagnosis and treatment have considerable negative effects on the physical,psychological,and social health of patients and can reduce their quality of life.3-5Many patients with breast cancer suffer from physical and cognitive impairments,changes in body image and sexuality,fear of recurrences,economic stress,poor social support,role functioning constraints and family crisis throughout the entire disease process.6Disease-related stigma is common among patients with breast cancer.Whether patients receive mastectomy or breast conserving treatment,they feel stigmatized similarly.4The stigma of many diseases and disorders prevalent in the world has attracted increasing public health concern.Studies of breast cancer stigma found that stigma extensively exists in patients with breast cancer because of their physical and psychosocial stress.4,6-13

2.Perceived health-related stigma

The modern understanding of disease-related stigma owes much to sociologist Goffman,14who defined stigma as an attribute that links an individual to an undesirable stereotype.Goffman argued that the stigmatized person is reduced in other people's minds from a whole and ordinary person to a disgraced or discounted one.Stigma regarding disease can take on many different forms,which include discriminatory behavior from others,15,16delays in diagnosis or treatment,16,17reduced availability of healthcare services and limited research funding.18

Because stigma is a rather broad topic,it is important to acknowledge the distinctive features of perceived health-related stigma(PHS)and the social burden of illness.The current research focuses on PHS,which was defined as a social process or personal experience characterized by the perception of exclusion,rejection,blame or devaluation that results from experience or anticipation of an adverse social judgment about a group or person.19This judgment is based on an enduring characteristic of identity conferred by a particular health problem or health-related condition.20Stigmatization includes negative emotions and attitudes(e.g.,irritation,depression)as well as social avoidance of affected individuals.21PHS,which contributes to physical,psychological and social morbidity,has been identi fied as a barrier to health promotion.22

PHS has been extensively studied in illnesses that were poorly understood or defined,lacked effective treatment,and readily invoked fear within a population,such as mental illness,HIV/AIDS,epilepsy and physical disability.16In recent years,cancer-related stigma has attracted increasingly more attention of researchers because public perceptions of cancer are often appraised more negatively than other serious diseases.Cancer and its treatment may leave visible physical marks,such as alopecia or scars,and may simultaneously generate invisible marks,such as PHS.12,23Researchers have suggested that cancer stigma may be driven by fear of the illness itself and fear of death.21

3.PHS among patients with breast cancer

Compared with studies of stigma of other diseases,the studies of PHS of breast cancer started comparatively late.Although the quantity of relevant studies is limited,there is a rising trend in the number of studies year by year.The PHS of breast cancer is receiving increasingly more concern.This is as a result of the enormous negative impact PHS usually has on the patients and their families,and this impact could be felt at home,in the community and at the workplace.Breast cancer survivors face many challenges(particularly changes in body image)on their road to restoring physical and psychosocial health following diagnosis.According to studies of breast cancer stigma,PHS is common among patients with breast cancer and is associated with adverse emotions,attitudes and behaviors(such as depressive emotion,negative attitude and decreased healthcare seeking behavior).4,6-13

4.Measures of PHS of breast cancer

4.1.Social Impact Scale(SIS)

To measure the PHS of patients with HIV/AIDS or cancer,File and Wright developed the SIS in 2000.24This 24-item scale includes four dimensions of PHS:social rejection(9 items,e.g.,“I feel others avoid me because of my illness”),financial insecurity(3 items,e.g.,“My job security has been affected by my illness”),internalized shame(5 items,e.g.,“I feel I need to keep my illness a secret”),and social isolation(7 items,e.g.,“I feel set apart from others who are well”).The total scale demonstrates good internal consistency reliability(Cronbach'sα=0.95),as do the subscales(Cronbach's α≥0.81).The SIS has been extensively used in studies of PHS of patients with HIV/AIDS or cancer.Whether this scale is suitable for the measurement of PHS of breast cancer patients depends on further examination.

4.2.Cancer Stigma Scale(CASS)

Marlow and Wardle provided the Cancer Stigma Scale(CASS),which can be used in the general population.25The CASS is a 25-item scale and made up of six subscales,which are Awkwardness(5 items),Severity(5 items),Avoidance(5 items),Policy Opposition(4 items),Personal Responsibility(4 items)and Financial Discrimination(3 items).Multiple aspects of cancer stigma can be assessed by this multidimensional scale.All attitude items are based on a 6-point scale(‘disagree strongly’to ‘agree strongly’or ‘de finitely not’to ‘yes de finitely’)and reversely scored as needed.All subscales have good construct validity,internal and test-retest reliability,and fit well with the stigma-related literatures.This scale can be used in studies that assess PHS among patients with different types of cancer,including breast cancer.In another area of Marlow's research,which used the CASS to explore PHS between six different cancer types(lung,breast,colorectal,skin and cervical),this scale also showed good reliability and validity.26

没等毕业，阿东便开始找工作。半年内，他尝试过无数行当。他去推销过保险，又到房地产公司做了一阵宣传，甚至还去中学代了一阵课。但每一次，都因各种原因，没能做长。有时是他不想做了，有时是公司萧条了。

4.3.Body Image after Breast Cancer Questionnaire(BIBCQ)-body stigma subscale

The BIBCQ is a multidimensional assessment of the long-term speci fic impact of breast cancer on body image.27It is a selfreport scale comprising 53 items,regardless of surgery type.Higher scores re flect greater body image disturbance.The BIBCQ is made up of six subscales(Vulnerability,Body Stigma,Limitations,Body Concerns,Transparency and Arm Concerns)for which good reliability was found(ranging from 0.77 to 0.87).The Body Stigma subscale comprises items associated with body shame and avoidant behaviors(e.g.,“I try to hide my body”).The diagnosis and treatment of breast cancer have a profound impact on body image,and many patients have intense feelings of body stigma.For breast cancer patients,the intensity of the feeling of being ashamed of body image can be assessed by means of the Body Stigma subscale of BIBCQ.28

5.Predictors for PHS

Marlow and Wardle found that PHS of cancer patients was in fluenced by certain socio-demographic factors.25Being male was found to be a predictor for more intense PHS,as was younger age.White British patients who were from an ethnic group had stronger PHS.Patients who were more educated were more inclined to experience higher PHS,while those who had at some time been around a person with cancer(whose family member or close friend has had cancer)or scored higher on social desirability(caring more strongly about what others think of them)were more likely to report lower PHS.Younger age predicted greater PHS,a similar finding confirmed by a multi-center study conducted in women who carried a BRCA1 or BRCA2-mutation.9Lebel and Devins showed that personal behavior that increases cancer risk induces PHS.29That is,‘lifestyle’causes could in fluence PHS.

According to the related research findings,clinical factors are also predictors for PHS of cancer patients.Side effects of treatment are associated with PHS of cancer patients.For most breast cancer patients who had experienced chemotherapy,PHS was driven partly by chemotherapy-induced alopecia12That is,breast cancer patients who experienced chemotherapy and relevant alopecia had stronger PHS than those without chemotherapy or alopecia.Vodermaier et al9reported that some female carriers of a BRCA1/2-mutation might experience PHS as a consequence of body dis figurement.More speci fically,BRCA1/2-mutation carriers who have undergone prophylactic mastectomy experience stronger PHS in relation to women without this surgery,because prophylactic mastectomy has negative impacts on body image and sexuality.

6.Effects of PHS on patients with breast cancer

In other stigmatized diseases,such as mental illness and human immunode ficiency virus/acquired immunode ficiency syndrome(HIV/AIDS),PHS has been shown to negatively affect patients and their health outcomes.Several studies about PHS of cancer suggest similar effects on patients with breast cancer.Stigma-related sentiments are commonly expressed by breast cancer survivors,for example,how their body ‘failed them’or how they feel‘broken’or‘dis figured’.

Treatments,their associated side effects,and the traumatic nature of the breast cancer experience frequently elicit intense PHS and the resulting considerable disruptions in sexual functioning.30Boquiren et al.'s study28indicated that body stigma had significant correlations with sexual functioning(the ‘sexually engaged’group reported significantly less body stigma than the‘not sexually engaged’group).Breast cancer survivors who reported significant body image concerns post-treatment may represent a vulnerable subgroup developing sexual dysfunction.

A substantial body of evidence has suggested that the PHS has a deleterious impact on breast cancer patients'attitudes,behaviors,psychosocial and quality of life outcomes.Almost all of the breast cancer patients suffered from strong adverse effects from the treatments administered.The visible changes most patients encountered from long-term treatment occurred alongside feelings of sickness,interference with sleeping patterns,and changed lifestyles,which reduced their quality of life.6A qualitative study conducted in women with breast cancer showed that the PHS not only delays women from engaging in care early but also hinders women from remaining engaged with care through to treatment completion.7Cho et al,31who conducted a study examining the association between PHS and depression among cancer survivors,claimed that cancer patients who had or experienced PHS were 2.5 times more inclined to have depression than those with positive attitudes.Similarly,in women carrying a BRCA1/2-mutation,Vodermaier et al9found that BRCA1/2-mutation carriers high in feelings of PHS experienced more cancer-speci fic distress.Moreover,they also drew the conclusion that the PHS was associated with more intrusive and avoidant thoughts in female BRCA1/2-mutation carriers.9In summary,for breast cancer patients,with increasing sense of PHS there might be more depression,poorer sleep quality,a decreased tendency to seek healthcare,and a decrease in quality of life.

7.Interventions of PHS

Efforts to alleviate the PHS have focused on helping individuals acknowledge and adjust to life with treatable but incurable diseases,and development of social and health policies for minimizing the PHS must be taken into consideration,because the PHS extensively exists in and has deleterious effects on the patients.Interventions may focus on support for affected individuals,changing prejudice and behavior of people who stigmatize in the general population,and eliminating or controlling the stigmatized condition.20Interventions for the general public try to rectify the misapprehensions and unfounded fears about the risks of people with stigmatized conditions.Interventions also aim to enhance empathy with affected people by emphasizing the fact that health status is not the only feature of the identity of an individual with a stigmatized condition.Weiss et al19clearly noted that health and social policies for minimizing PHS include access to care,health financing,and research support.

Interventions targeting PHS of breast cancer patients could be found through several related studies.Mutebi and Edge declared that breast cancer awareness that aims to encourage women to be more aware of their breasts could contribute towards reducing the PHS of the diagnosis and increasing earlier presentation.8Ginsburg et al32showed a bene ficial phenomenon that community healthcare workers shared testimonials of the successfully treated patients with the general public,which helped to decrease the PHS of breast cancer.Najmabadi et al33opined that self-disclosure of breast cancer diagnosis is very necessary for patients because talking about cancer diagnosis helps people to re-evaluate their perceptions and make sense of their experiences.In a manner of speaking,self-disclosure appears to play an important role in patients'health outcomes.Meanwhile,they also found that after women self-disclosed freely to family,friends and colleagues,the PHS of breast cancer was far less than it once was.33Meacham et al7noted that key factors to overcoming the PHS and engaging in care included acceptance of disease diagnosis,strong social support and relevant knowledge of breast cancer.Thus,encouraging patients to accept the diagnosis of breast cancer,providing patients with powerful social support and helping them to acquire more knowledge of breast cancer may be effective measures to overcome the PHS.Meacham et al also concluded that interventions aimed at reducing fear of breast cancer could help to reduce the PHS and promote cancer care engagement.7

8.Discussion

PHS refers to the attachment of negative connotations to some types of disease diagnoses.16The PHS negatively impacts the health and well-being of patients,the ability and willingness of patients to access health care,the patient-provider relationship and the supply of care.The PHS has been extensively studied in many disorders and diseases,and PHS of cancer prevalent in the world today has drawn increasing public health concern.Cancer is no longer simply a part of their lives;for cancer patients,it becomes the main element of their everyday lives and identities.Patients describe their experiences of cancer in terms of “depression”, “psychic distress”and “emotional instability”.This feeling is mainly related to the cancer treatment,and in particular to chemotherapy,which is seen as being extremely invasive,attacking the body more than healing it.12

Almost all of breast cancer patients had to face asymmetrical breasts,which surgery left the patients with,and endure various adverse effects resulting from their treatment,including nausea,vomiting,fatigue,hair loss,and lack of appetite.So they may experience mistrust in their body and changes in their perception of themselves,and even feel different,isolated or alienated from others due to all these changes and effects.The changes in body appearance and the adverse effects have great impacts on the daily activities and the life quality of breast cancer patients.The adverse effects of the treatment also lessen patients'capacity for being independent and interfere with their normal lifestyles.Most breast cancer patients feel ashamed by the changes in their body image and seek to find ways to conceal their imperfect bodies,because breasts are seen as a symbol of gender identity and femininity of women.6

Studies conducted in different countries have indicated that breast cancer patients experience different levels of PHS after receiving various types of treatments,i.e.,people living with breast cancer continue to endure PHS and discrimination in the context of health care.4,6-13PHS is common among patients with breast cancer and is associated with negative attitudes and passive avoidance behaviors such as decreased healthcare seeking behavior.SIS and CASS have been applied to measure the PHS of cancer patients,including breast cancer patients.Whether the validity and reliability of the above scales are desired when they are used to assess the PHS of breast cancer,more studies for further veri fication are needed.Although the Body Stigma subscale of BIBCQ is used to examine the body stigma of breast cancer patients,developing more instruments that are specialized for measuring PHS of breast cancer patients is necessary.Based on a large number of research results,PHS regarding cancer is in fluenced by many socio-demographic,clinical and psychological factors.Future studies should continue to examine the relationship between PHS and these predictors,explore whether there are other predictors,and discuss effective interventions of PHS on the basis of the predictors.

According to previous studies,the PHS has debilitating effects on breast cancer patients and their health outcomes,including sexual dysfunction,depression,poor sleep quality,decreased tendency to seek healthcare and decrease in quality of life.Many interventions have been found effective for mitigating or eliminating the PHS of patients with speci fic diseases such as mental illness,HIV/AIDS and cancer,but more interventions that are valid,particularly for patients with breast cancer,are still needed.

9.Conclusions

In conclusion,previous studies have shown that breast cancer is a highly stigmatized disease,with almost all breast cancer survivors experiencing different levels of PHS,and the PHS may lead to adverse health behaviors.Healthcare providers need to be aware of PHS and its potential impact on patients'interaction with the medical system and should consider speci fically addressing PHS when discussing the disease and treatment course.All the relevant findings might also re flect a bias against breast cancer among the general public,which could prevent breast cancer patients from seeking social support and make it difficult to conduct research among such patients.To improve the status,developing more effective interventions aimed at preventing negative effects of PHS in this population has become an emergent and significant task.

Conflicts of interest

All contributing authors declare no Conflicts of interest.

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