The dual burden of stigma: a scoping review of its impact on colorectal cancer patients and screening participants

Abstract

Background

The stigma caused by colorectal cancer (CRC) and CRC screening affects CRC prevention and treatment. Based on the Health Stigma and Discrimination Framework (HSDF), this review analyzed the influencing factors and mechanism of stigma in CRC.

Methods

We conducted a scoping review in accordance with the PRISMA-ScR guidelines and searched PubMed, Web of Science, Scopus, and CNKI. The RoBANS tool was used for quantitative studies, and the Joanna Briggs Institute Critical Appraisal Checklist for Qualitative Research tool was used for qualitative studies. Data were integrated on the basis of the HSDF.

Results

Among the 15 included studies, 10 focused on CRC patients, and 5 focused on screening participants. These studies covered driving factors (14 studies), facilitating factors (11 studies), stigma “marking” (13 studies), individual experiences (12 studies), and social practices (13 studies). Additionally, a total of 3150 participants were included in the studies, comprising 2876 patients and 274 screening participants. Studies have shown that the factors influencing CRC-related stigma differ across different groups. CRC patients experience disease-related stigma and survival-related stigma, such as ostomy discrimination and employment discrimination. The screening of participants involves invasive examinations and asymptomatic population screening. The above stigmatization may lead to negative consequences such as deterioration in quality of life, decreased treatment compliance, delayed screening, and psychological distress (anxiety, depression). This study revealed that CRC-related stigma may be influenced by age, gender, religion, culture and the economy. Through improving social support and health policy, the negative effects of stigmatization can be gradually eliminated.

Conclusion

CRC-related stigma has measurable impacts on patient well-being and care-seeking. Although some studies suggest potential strategies to reduce stigma, further research is needed to evaluate effective interventions and their role in promoting screening participation.

Supplementary Information

The online version contains supplementary material available at 10.1186/s12889-025-24782-x.

Introduction

Colorectal cancer (CRC) is one of the most prevalent malignant tumors worldwide and poses a significant challenge to public health systems globally because of its increasing burden [1]. According to data from the International Agency for Research on Cancer (IARC), in 2020, approximately 1.93 million new cases of CRC were diagnosed globally, resulting in approximately 935,200 deaths, making it the third most common cancer, with incidence rates following lung cancer and breast cancer [2]. The development of CRC is closely associated with various risk factors, including poor dietary habits, lack of physical activity, smoking, alcohol use, obesity, and genetic factors [3]. Moreover, the incidence and mortality rates of CRC vary significantly across different regions, which may be related to factors such as economic development, dietary habits, and lifestyle [4]. Gender differences are also noteworthy, with men generally having a greater risk of dying from CRC than women, possibly due to gender-specific physiological characteristics, environmental factors and social behaviors [5].

The core concept of stigma originates from the “social labeling process” proposed by Goffman [6], which describes a phenomenon where individuals are labeled as “abnormal” due to CRC or related screening behaviors, resulting in impaired social identity and experiences of exclusion. In previous studies, stigma has typically been categorized into three types: internalized stigma [7], anticipated stigma [8], and structural stigma [9]. Their main manifestations include: individuals internalizing socially negative labels into self-perception, avoiding screening due to the anticipation of discrimination, and implicit discrimination embedded in social systems. However, Stangl et al. [10] divided stigma into three core domains in the Health Stigma and Discrimination Framework (HSDF): drivers & facilitators (e.g., social prejudices), stigma “marking” (stigmatizing characteristics associated with the disease or screening), and stigma manifestations (stigmatizing outcomes in individual experiences and social practices). These multilevel dimensions of stigma interact with each other and have become a key psychosocial barrier affecting health outcomes and screening participation [11].

CRC stigma exhibits significant specificity. In the screening context, procedures such as bowel preparation and body exposure during colonoscopy easily induce a sense of shame related to “privacy exposure,” which directly reduces screening compliance [12]. Among patient populations, changes in body image caused by treatments such as ostomy are regarded as “visible markers of disease”, making patients vulnerable to social exclusion [13, 14]. Compared with other cancers, such as lung cancer [15] and cervical cancer [16], CRC stigma is directly associated with the private parts of the digestive tract. Its “markers” not only involve physical appearance changes like ostomy but are also closely associated with social taboos (cultural attitudes and beliefs) [17]. This particularity makes the intuitiveness and emotional impact of CRC stigma more pronounced.

There remain several gaps in current research. First, the analysis of CRC-related stigma lacks a unified theoretical framework. In the study by Li J et al. [18], the focus was placed on the external manifestations of stigma and the effects of intervention measures without introducing any theoretical framework to dissect the formation mechanism and action path of stigma, resulting in an obvious deficiency in theoretical exploration. Second, there is a lack of integrated research on stigma among both CRC patients and screening participants. In the study by Huang Z et al. [19] only the correlates of cancer stigma were focused on, without an in-depth analysis of the underlying mechanisms of related stigma, which to some extent reflects the inadequacy of this research area. Therefore, this study aims to systematically integrate research on stigma among CRC patients and screening participants through a scoping review to identify its driving factors, manifestations, and potential mitigation strategies. These findings may inform the development of future interventions and public health approaches.

Methods

Theoretical framework

In this scoping review, the HSDF proposed by Stangl et al. [10] provides a systematic perspective for this study. The framework describes that stigma comprises three interrelated domains: drivers and facilitators of stigma, stigma “marking” and stigma manifestations. These components interact with each other and collectively influence CRC patients and the entire process of CRC screening (Figure 1). First, from the perspective of driving and facilitating factors, the development of stigma is closely associated with various negative and positive external factors. Negative factors, such as fear, cultural biases and discrimination, often drive patients to avoid screening, thereby intensifying their sense of stigma [20, 21]. On the other hand, positive factors such as social recognition and acceptance can alleviate this negative feeling and encourage patients to actively participate in screening and treatment [22, 23]. Second, stigma “marking” (i.e., which people or conditions are more susceptible to stigma) is a key component of stigma, and their occurrence is based on a specific health condition (e.g., CRC) or other perceived differences (e.g., gender, race) [24]. The marking not only marginalizes patients in society but also may lead to a series of negative social evaluations, further deepening their stigma. Finally, the stigma manifestations are reflected in the real-life challenges faced by patients, including actual stigma such as employment discrimination and social exclusion [25, 26] as well as perceived stigma caused by prejudice and stereotype. These experiences and practices not only harm the mental health and social relationships of patients but also indirectly worsen the condition and prognosis of CRC patients [27]. Understanding how stigma affects both CRC and CRC screening is crucial for implementing effective communication and prevention strategies.

Fig. 1.

Application of HSDF in colorectal cancer and colorectal cancer screening

Study design

This scoping review aims to synthesize evidence on stigma related to CRC and its screening, following the methodological framework proposed by Arksey and O’Malley (2005) [28]. The framework includes the following steps: (1) identifying the research questions to be addressed; (2) identifying relevant studies related to the research questions; (3) selecting studies to be included in the review; (4) collecting data and information from the included studies; and (5) organizing, summarizing, and reporting the results of the scope review. The review was conducted and reported in strict accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR).

Identifying the research question

Based on the Health Stigma and Discrimination Framework and the research objectives, the following key questions were derived:

1. What are the driving and facilitating factors, stigma marking, and stigma manifestations that have been identified in relation to colorectal cancer?

2. What are the driving and facilitating factors, stigma marking, and stigma manifestations that have been identified in relation to colorectal cancer screening?

Identifying relevant studies

Prior to initiating the review, an initial search using key terms (i.e., colorectal cancer, colon cancer, rectal cancer, stigma and stigmatization, review) was conducted to confirm the existence of similar reviews addressing this research question. It was determined that no registered or published reviews on this specific research question currently exist. Following consultation with the research team, four electronic databases—PubMed, Web of Science, Scopus, and CNKI—were searched. The strategy combined controlled vocabularies (such as MeSH terms) and common keywords across databases, with adjustments to terminology and syntax based on each database’s requirements. Keywords included “colorectal cancer”, “colon cancer”, “rectal cancer”, “CRC”, “stigma”, “stigmatization”, “social stigma”, “self-stigma”, “mass screening”, “screening”, and “early detection”. The searches were independently performed by two authors (Wenjie Zhao and Mengmeng Chen) and cross-checked. To ensure the systematicity, transparency, and reproducibility of literature screening, the retrieved results were evaluated based on the PCC framework (Population-Concept-Context)—a widely used guideline for defining eligibility criteria in scoping reviews. The specific inclusion and exclusion criteria aligned with each dimension of the PCC framework are as follows:

Inclusion criteria:

1. Population: The study population consists of patients diagnosed with CRC or individuals eligible for CRC screening；

2. Concept: Explicitly exploring stigma, including direct assessment of stigma experiences or analysis of the impact of stigma on healthcare-seeking behavior, the screening participation rate, or quality of life;

3. Context: Publications are limited to peer-reviewed journal articles in the English language, published between January 2013 and August 2024.

Exclusion criteria:

1. Population: Study populations involving patients with other types of cancer;

2. Concept: Studies unrelated to CRC or stigma;

3. Context: Duplicate articles retrieved from different databases and literature with unavailable full texts (e.g., abstracts only, conference proceedings, news reports).

Study selection

A comprehensive search was conducted across four electronic databases in this study. The study selection process consisted of three stages: (1) Deduplication: Initial search results were automatically deduplicated using EndNote 21 software, followed by manual verification by two researchers (Wenjie Zhao and Mengmeng Chen) to further exclude duplicate records; (2) Title and abstract screening: Two researchers strictly adhered to the eligibility criteria defined by the PCC framework above, and independently screened the titles and abstracts of remaining records to exclude studies that clearly failed to meet the criteria; (3) Full-text screening: The studies that passed title and abstract screening underwent further full-text review to confirm full compliance with all eligibility criteria. Any discrepancies were resolved through discussion, with arbitration by the third author (Bin Li). The final included studies were determined by consensus.

Charting the data

Data extraction was independently performed by two authors (Liwen Wang and Jianyue Dai) using a predesigned extraction form. Disagreements were resolved through discussion or arbitration by a third author (Wenjie Zhao). The extracted information includes the following basic characteristics of the studies: source database, journal, country of publication, authors, year, title, design and analytical methods; participant characteristics: demographic information (age, gender), sample size, sampling methods (e.g., convenience sampling, hospital sampling) and data collection methods (e.g., questionnaire survey, interview, mixed methods); and content related to the HSDF: Drivers & Facilitators, Stigma “marking”, and manifestations (experiences and practices).

Collating, summarizing, and reporting the results

The results are divided into two parts: (1) A descriptive summary of the basic characteristics of the included studies (such as study design, population, and geographical distribution); (2) Based on the domain of HSDF, conduct thematic synthesis of research questions to clarify the mechanism of stigma in CRC patients and screening participants. Discussions are presented on the basis of these research results, and an objective analysis of their potential impacts on future research, practical fields, and policy formulation is conducted.

Risk of bias assessment

The risk of bias for all included studies was assessed using tools corresponding to their design types. For quantitative studies, the RoBANS tool [29] was used, with ratings (low risk, high risk, unclear) assigned across six domains: participant selection, confounding variables, exposure measurement, blinding of outcome assessment, incomplete outcome data, and selective outcome reporting. For qualitative studies, the Joanna Briggs Institute (JBI) Critical Appraisal Checklist for Qualitative Research [30] was adopted, involving assessment through 10 items (yes, no, unclear, not applicable) covering methodological consistency, researcher positioning, ethical compliance, etc. For mixed-methods studies, assessments were conducted in modules before integrated judgment, with results from core modules serving as the primary basis. The assessments were independently performed by two researchers (Wenjie Zhao and Mengmeng Chen), and any disagreements were resolved through discussion or arbitrated by a third author (Bin Li).

Results

Search results

The initial search for this study yielded 1226 records. After excluding those that could not be imported due to data anomalies and duplicates, a total of 904 articles were reviewed. Following title and abstract screening, 59 articles remained, and their full texts were thoroughly examined. Ultimately, 15 studies were included, and the screening process is shown in Figure 2.

Fig. 2.

Flow diagram of the search and study selection process

Research characteristics

Through a comprehensive analysis of the 15 included studies, we identified 10 studies focusing on CRC [31–40] and another 5 studies concentrating on CRC screening [41–45]. Among these 15 studies, there are 8 quantitative studies [31, 32, 34, 35, 37–40], 5 qualitative studies [33, 41–43, 45], and 2 mixed-methods studies [36, 44]. Fourteen studies explored driving factors (e.g., social misunderstanding) [31–35, 37–45], 11 studies addressed facilitating factors (e.g., culture) [32–35, 37–41, 44, 45], 13 studies addressed stigma markers (e.g., ostomy) [31, 32, 34, 35, 37–45], 12 studies investigated experiences (e.g., social exclusion) [31–42], and 13 studies examined practices (e.g., concealing the illness) [31, 32, 34–37, 39–45]. The total number of participants was 3150, including 2876 CRC patients and 274 individuals undergoing CRC screening. The basic characteristics of the included studies are detailed in Table 1.

Table 1.

Characteristics of included studies

Study	Year	Country	No of Participants	Study population	Study Method	Measures	Age Years	Stigma Domain	Key Findings
Colorectal cancer
He et al.[31]	2024	China	264	Patients with advanced CRC were recruited from a tertiary hospital in Guizhou province, China.	Cross-sectional survey	COST-PROM、MCMQ、MDASI、SSCI、SSRS	56.70 ± 14.70 (mean) age	Drivers of stigma Facilitators of stigma Health-condition-related stigma Perceived-difference-related stigma Stigma experiences Stigma practices	The relationship between stigma and financial toxicity in CRC patients is affected by many factors, including the patients’ inner sensitivity, the impact on treatment, the impact on mental health and income.
Li et al.[32]	2024	China	303	Colorectal patients who underwent permanent colostomy more than one month after surgery were recruited at Shandong Cancer Hospital, China.	Cross-sectional survey	The self-designed stigma scale、SAVAS、SIS	59.55 (mean) age	Drivers of stigma Facilitators of stigma Health-condition-related stigma Stigma experiences Stigma practices	Stigma may drive CRC patients to socialize less, thereby increasing social isolation.
Yoon et al.[33]	2020	Singapore	30	Patients with well-treated CRC without metastasis were recruited at the Singapore General Hospital.	Interviews	Thematic Analysis	>21	Drivers of stigma Stigma practices	The social stigma of patients with CRC makes it difficult for them to integrate into the labor market and affect their normal life.
Xi Z et al.[34]	2022	China	259	Patients who had undergone enterostomy for less than 6 months were recruited from 6 tertiary general hospitals in China.	Cross-sectional survey	SIS、AODS、OAI-20	≥ 18	Drivers of stigma Facilitators of stigma Health-condition-related Stigma Stigma experiences Stigma practices	Stigma in patients with stoma is at a severe level, which is negatively correlated with psychosocial adaptation. Body image disorder, impaired self-esteem, and social pressure lead to heavy psychological burden.
Qin F et al.[35]	2020	China	159	Patients with temporary colostomy for at least 2 weeks were recruited from 3 general hospitals in Guangdong Province, China.	Cross-sectional survey	SIS、SSES	51.97 (mean) age	Drivers of stigma Health-condition-related Stigma Stigma experiences Stigma practices	The stigma of CRC patients with temporary colostomy is at a medium level. Family relationship, age and self-efficacy are the main factors affecting the stigma of patients with temporary colostomy.
Sutton et al.[36]	2019	Britain	35	Participants were consecutive patients attending a dedicated surveillance clinic at the Countess of Chester Hospitals NHS Foundation Trust who had undergone CRC surgery within 3 years.	Questionnaires + Focus group	EQ-5D-3 L、 the distress thermometer、a validated measure of stigma、FACT-C、SNCS-SF34	65.4 (median) age	Facilitators of stigma Stigma experiences Stigma practices	Stigma interacts with patients’ emotional state, physical symptoms and disease cognition. Patients generally have negative emotions such as fear and depression, which aggravate the stigma.
Jin et al.[37]	2022	China	303	Patients diagnosed with primary CRC within six months were recruited at a tertiary cancer center in southern China.	Cross-sectional survey	SIS、GSES	49.59 (mean) age	Drivers of stigma Facilitators of stigma Health-condition-related Stigma Stigma experiences Stigma practices	Stigma causes patients to feel embarrassed about symptoms and fear of the financial or personal impact of treatment, leading to a reluctance to seek prompt medical attention when symptoms develop.
Phelan et al.[38]	2013	America	1109	Recruit male U.S. veterans diagnosed with invasive colon or rectal cancer from VA medical facilities.	Questionnaires	The cancer stigma scale、Self-Blame Scale、Perceived Blame from Others Scale、Depression Scale	68 (mean) age	Drivers of stigma Facilitators of stigma Health-condition-related Stigma Perceived-difference-related stigma Stigma experiences	Male patients with CRC may be more likely to experience stigma due to symptoms caused by the disease, awkward rectal exams, and threats to male identity.
Qin F et al.[39]	2019	China	187	Patients with CRC who had a permanent sexual partner more than one month after surgery were recruited from three general hospitals in Guangdong Province, China.	Cross-sectional survey	C-ASEX、C-SIS	51.8 ± 10.70 (mean) age	Drivers of stigma Facilitators of stigma Health-condition-related Stigma Perceived-difference-related stigma Stigma experiences Stigma practices	CRC patients may have sexual dysfunction and sexual problems due to body image changes and internal stigma. Sexual experience is positively correlated with stigma, and reducing stigma may help improve the sexual life quality of patients with ostomy.
Yuan et al.[40]	2018	China	209	Patients with permanent or temporary colostomy were recruited from the outpatient clinic of a cancer center in a tertiary hospital in Guangzhou, China.	Cross-sectional survey	SIS、CSE、SSES	53.73 (mean) age	Drivers of stigma Facilitators of stigma Health-condition-related Stigma Perceived-difference-related stigma Stigma experiences	In the Chinese cultural context, people are more inclined to maintain the natural state of the body, and the emergence of stoma breaks this concept, and patients may feel self-blame and shame for violating traditional cultural values.
Colorectal cancer screening
Mojica et al.[41]	2023	America	45	Through the education-plus-navigation program database, Latino men who were willing to participate were contacted and invited.	Interviews	Content analysis	58 (mean) age	Drivers of stigma Facilitators of stigma Health-condition-related Stigma Stigma practices	Colonoscopy stigma was an important barrier, with unscreened men having more fear and distrust of the test.
Kazi et al.[42]	2021	America	32	Recruit Muslim men and women from Bangladeshi, Pakistani and Indian communities through a variety of channels, including cultural festivals and mosques.	Interviews	Thematic Analysis	57 (mean) age	Drivers of stigma Facilitators of stigma Perceived-difference-related stigma Stigma practices	Stigma contributes to low CRC screening rates, and women have a cultural or religious stigma against stool testing and consider it impure.
Martens et al.[43]	2016	America	38	Participants with no personal or family history of CRC were recruited in four North Carolina counties.	Interviews	Thematic Analysis + DCE	58 (mean) age	Drivers of stigma Perceived-difference-related stigma Stigma practices	Male participants reported that CRC screening was embarrassing and avoided screening programs that involved examination of intimate body parts because of the stigma, even when recommended by a physician.
Jung et al.[44]	2018	America	137	Chinese and Korean adults who had Lived in the United States for at least 1 year and had no history of CRC.	Interviews	Thematic Analysis + Triangulation verification	62.9 (mean) age	Drivers of stigma Facilitators of stigma Perceived-difference-related stigma Stigma practices	Participants had lower CRC screening rates due to language barriers, invasive tests, embarrassment, and distrust of physicians.
Hall et al.[45]	2015	Britain	40(18 CRC patients and 22 non-cancer patients)	Patients referred to five gastroenterology clinics in the North-East and east of England with symptoms of suspected CRC.	Interviews	Framework analysis	≥ 40	Drivers of stigma Facilitators of stigma Health-condition-related Stigma Stigma practices	Participants delayed or avoided seeking health care for fear of embarrassment from invasive rectal exams.

Abbreviations: COST-PROM The Chinese version of Comprehensive Score for Financial Toxicity; MCMQ The Medical Coping Modes Questionnaire; MDASI Anderson Symptom Inventory; SSCI The Stigma Scale for Chronic Illness; SSRS The Social Support Rating Scale; SAVAS The stoma acceptance and valuable action scale; SIS: Social Impact Scale; AODS Acceptance of disability scale; OAI-20: Ostomy adjustment inventory-20; SSES State Self‐Esteem Scale; EQ-5D-3L EuroQol five dimensions questionnaire-3L; FACT-C Functional Assessment of Cancer Therapy-Colorectal; SNCS-SF34 The 34-item Supportive Care Needs Survey; GSES The General Self-Efficacy Scale; C-ASEX The Chinese version of the Arizona Sexual Experience Scale; C-SIS The Chinese version of the Social Impact Scale; CSE Coping Self‐Efficacy Scale; DCE Discrete choice experiment

The study subjects are diverse, covering different disease stages (temporary/permanent stoma, middle-advanced stage, long-term survivors, etc.), cultural and geographical backgrounds (Chinese patients, South Asian Muslims, Latinos and other ethnic minorities in the United States, etc.), and demographic characteristics (age, gender, socioeconomic status). The research methods are mainly cross-sectional surveys and qualitative studies, supplemented by a few mixed-methods studies. Tools such as the social impact scale are commonly used to assess the level of stigma. The core manifestations of stigma include: shame caused by physical changes [34, 35], anxiety about privacy exposure [42, 45], negative perceptions of the “cancer patient” identity [32, 38, 44], and fear of social exclusion [32, 33]. Its impacts include psychosocial maladjustment [39], delayed medical treatment [31, 45], avoidance of screening [41, 43], decreased quality of life, and increased economic burden [39, 44]. Among them, cultural factors have a significant impact on stigma, and the sources and manifestations of stigma vary across different cultural backgrounds [35, 37, 40, 42]. Moreover, there is a widespread “privacy taboo” resulting from the privacy of colorectal symptoms. Existing interventions are mostly directional suggestions based on mechanism analysis (such as individual cognitive intervention, strengthening social support, health education at the system level, etc.), lacking mature and specific schemes.

The effect of stigma on colorectal cancer

Table 2 summarizes the factors related to stigma in CRC patients based on the HSDF. Regarding the driving factors of stigma, such as fear and shame, have been repeatedly mentioned; facilitating factors are associated with society, culture, etc. There are certain differences in the specific findings of different studies in each domain. None of the included studies proposed intervention measures.

Table 2.

Factors related to stigma in colorectal cancer patients according to the health stigma and discrimination framework

	Domain 1		Domain 2		Domain 3
Reference	Drivers of stigma	Facilitators of stigma	Health-condition-related Stigma	Perceived-difference-related stigma	Stigma experiences	Stigma practices
He et al. [31]	Social misunderstanding (concerns about social evaluation) Fear (Stoma being discovered)	No data available	Stoma	Economy (Patients with poor economic conditions may be more likely to develop or intensify their sense of stigma)	Social Exclusion Anxiety Economic burden	Delay in Seeking Medical Care Social discrimination
Li et al. [32]	Social misunderstanding (concerns about social evaluation) Fear (rejection and prejudice) Shame (Low acceptance of ostomy)	Social concept (Negative views and attitudes exist in society, considering them unhealthy and flawed)	Stoma	No data available	Self-perceived stigma Social Exclusion	Social discrimination Prejudice Social Avoidance
Yoon et al. [33]	Fear (rejection and prejudice)	Social support (Lack of understanding and support in the working environment)	No data available	No data available	Employment discrimination	No data available
Xi Z et al. [34]	Fear (Cancer and stoma) Inferiority and shame (destruction of physical integrity)	Social concept (misunderstandings and nonacceptance	Stoma Body image change	No data available	Self-perceived Stigma Social Exclusion	Social Avoidance Concealment of illness
Qin F et al. [35]	Fear (rejection and prejudice) Shame (damaged body image)	Cultural background (related curses and Buddhist concepts)	Stoma	No data available	Self-perceived Stigma Social Exclusion	Social Avoidance
Sutton et al. [36]	No data available	No data available	No data available	No data available	Self-perceived Stigma	Concealment of illness
Jin et al. [37]	Fear (The perception of the Lethality of cancer) Shame (Privacy of the location of CRC symptoms)	Cultural background (defecation-related matters are regarded as filthy and inexpressible)	Symptoms related to bowel movements	No data available	Self-perceived Stigma	Social Avoidance Delay in Seeking Medical Care
Phelan et al. [38]	Lack of knowledge (incorrect understanding of diseases) Shame (caused by physical changes and identity threats)	Social concepts (internalizing the self-induced concept of diseases and the devaluation perception of the identity of “cancer patients”)	Stoma	Gender (Male patients have a stronger sense of stigma due to the embarrassment of rectal examinations or the threat of the disease to their male status)	Self-perceived Stigma Social Exclusion	No data available
Qin F et al. [39]	Shame (negative perception of one’s state)	Social concepts (social discrimination and attitudes towards sexual topics) Cultural background (The Influence of Conservatism in Chinese Culture on sexual topics)	Stoma Body image change	Economy (Patients with poor economic conditions lack medical support and are more likely to be affected by a sense of stigma)	Self-perceived Stigma Decreased Satisfaction in Sexual Life Depression	Social Avoidance
Yuan et al. [40]	Low self-esteem (damaged body image) Shame (Low coping self-efficacy)	Social support (support from family and peers) Cultural background (Confucianism, Taoism, Buddhism)	Stoma	Age (Young patients are more vulnerable to stigma due to their family’s economic responsibilities)	Self-perceived Stigma Social Exclusion	Social Avoidance

Drivers and facilitators

Drivers of stigma

The nine studies indicated that the core driving factors of CRC-related stigma include: societal misunderstandings about the etiology of CRC, such as assumptions that the disease is caused by preventable behaviors like high-fat or low-fiber diets, smoking, alcohol use, or certain sexual practices. These attributions result in participants experiencing stigma, being blamed, and perceiving moral judgment from others, which deepens self-stigma [31, 38]; fear of cancer mortality and the treatment process, which further intensifies patients’ resistance to their own disease state [34, 37]; some studies have pointed out that treatment-induced physical changes (such as odor and appearance alterations caused by ostomy) impair physical integrity and constitute a significant source of self-stigma [32, 40]; and some patients tend to blame themselves, attributing their illness to personal factors such as failure to undergo timely screening [38].

Facilitators that minimize or exacerbate stigma

Inadequate social support is a significant facilitating factor that exacerbates stigma: family members’ nonacceptance of stoma status increases the psychological burden on patients [40]; alienation from friends and judgmental glances from colleagues lead to social isolation of patients [33]. Prejudices in social attitudes (such as associating cancer with “genetic defects” or “death”) and discriminatory remarks (e.g., “May you birth a child with no rectum!“) further strengthens the sense of being stigmatized among patients [32, 34, 35]. In the medical setting, some doctors overemphasize that “personal behaviors are the cause of the disease,” which prompts patients to engage in self-attribution and thus aggravates their stigma [38]. At the cultural level, traditional fatalistic concepts (e.g., “illness is predestined”) inhibit patients’ willingness to seek help proactively, resulting in the accumulation of negative emotions [35, 37, 39, 40].

Stigma marking

Health-condition-related stigma

The eight studies indicated that the visibility of stomas, fecal leakage, and associated odors directly undermine patients’ self-esteem, serving as prominent stigmatizing identifiers [31, 32, 34, 35, 38–40]. Additionally, symptoms such as increased defecation frequency and urinary or fecal incontinence further render patients targets of stigmatization [37].

Perceived-difference-related stigma

Differences in individual characteristics may increase vulnerability to stigma. Younger patients, who bear family economic responsibilities, are more vulnerable to stigma due to the more significant impact of ostomy on their lives and careers [40]. Male patients may perceive stronger stigma due to disease symptoms, embarrassment from rectal examinations, or threats to their “masculine identity“ [38]. Patients with poor economic conditions find it harder to escape the predicament of stigma due to a lack of coping resources [31, 39].

Stigma manifestations

Stigma experiences

The eight studies indicated that patients generally experienced self-perceived stigma, specifically expressed as feelings of shame, self-image disorders, and emotions such as anxiety and depression [31, 32, 36]. There is a phenomenon of mutual avoidance in social interactions; for instance, one-third of patients have reduced social interactions, and a small number of patients have reported experiencing social exclusion [32]; however, findings have varied across studies. In addition, male patients, due to concerns that ostomy may cause erectile dysfunction, have significantly reduced sexual life satisfaction [39].

Stigma practices

The four studies have demonstrated that due to social stereotypes and fear of treatment methods, patients conceal their condition, which in turn leads to delayed treatment, disease progression, and increased medical costs [31, 34, 36, 37]. Some patients reduce social interactions to avoid discrimination, eventually falling into a state of social isolation [32, 35].

The impact of stigma on colorectal cancer screening

Table 3 summarizes the factors associated with stigma related to CRC screening. Among these factors, the driving factors of stigma include fear of invasive examinations, concerns arising from insufficient knowledge of screening procedures, and shame about cancer-related symptoms, among others. Regarding stigma markers related to perceived differences, factors such as religion, ethnicity, and economic status exhibit varying manifestations among the screening population.

Table 3.

Factors related to the stigma of colorectal cancer screening according to the health stigma and discrimination framework

	Domain 1		Domain 2		Domain 3
Reference	Drivers of stigma	Facilitators of stigma	Health-condition-related Stigma	Perceived-difference-related stigma	Stigma experiences	Stigma practices
Mojica et al. [41]	Fear (Invasive examination) Shame (damaged dignity	Social support (avoidant talk about screening in the family)	Invasive examination (Colonoscopy is an invasive procedure that can cause discomfort and embarrassment to patients)	No data available	Fear of being violated by the doctor during the examination Fear of compromising masculinity	Avoid talking and screening
Kazi et al. [42]	Lack of knowledge (lack of understanding of screening process)	No data available	Invasive examination (Invasive tests require revealing intimate parts, causing embarrassment for patients, especially women, and exacerbating stigma)	Religion (Islam emphasizes cleanliness, and feces are considered unclean)	Shyness when facing a doctor of the opposite sex Hesitation about Fecal Testing	Avoidance screening Resistance to Fecal Testing
Martens et al. [43]	Lack of knowledge (lack of awareness about screening)	No data available	Invasive examination (The discomfort and shameful experience brought by invasive examinations)	Race (Hispanics or Latinos tend to self-care and resist screening due to the stigma associated with screening in their culture)	No data available	Avoidance screening Inequity in medical resources
Jung et al. [44]	Fear (worrying about being diagnosed with cancer) Shame (Negative perception of cancer)	Social perception (The social stigma of CRC)	Invasive examination (Embarrassment and discomfort associated with colonoscopy)	Economy (Economic hardship (objective payment obstacles) and economic burden (subjective pressure) affect screening)	No data available	Avoidance screening
Hall et al. [45]	Lack of knowledge (Symptom assessment and normalization) Shame (The “privacy” of CRC symptoms)	Social support (family encourages rational medical seeking behavior) Health Policy (Publicity Campaign)	Invasive examination (Rectal examinations and colonoscopy require contact with private parts, which can cause embarrassment and shame)	No data available	No data available	Avoid talking and screening

Drivers and facilitators

Drivers of stigma

Three studies have shown that the core driving factors of screening-related stigma include fear of invasive examinations (such as discomfort from colonoscopy, anesthesia risk, and privacy exposure) and lack of knowledge about screening procedures (people often directly associate screening with illness) [41, 42, 44]. In addition, since screening involves private parts such as the anus and feces, it easily triggers a “shame association”; among them, women have a stronger sense of shame because society has higher requirements for “physical privacy” [42, 45].

Facilitators that minimize or exacerbate stigma

A study has indicated that family support and social advocacy are key facilitating factors. Support from family members and friends can motivate individuals to proactively seek medical services and actively participate in CRC screening; nationwide public awareness campaigns on intestinal health can improve the public’s acceptance of screening [45]. Conversely, family members’ avoidance of discussions related to screening can significantly reduce individuals’ willingness to participate in screening [41].

Stigma marking

Health-condition-related stigma

The five studies have demonstrated that, in the context of screening, the “exposure of the body” and “embarrassment associated with bowel preparation” caused by invasive procedures such as proctoscopy, as well as the “association with uncleanliness” triggered by the handling of fecal samples, are unique stigmatizing markers in screening settings [41–45].

Perceived-difference-related stigma

At the religious level, the emphasis on “cleanliness” in Islam influences participants’ attitudes toward CRC screening [42]. In terms of ethnicity, a study on Hispanic populations indicated that some participants tend to prefer self-care and avoid seeking medical help, thereby resisting CRC screening, due to factors such as cultural stigma associated with screening, specific health beliefs, and insufficient access to resources [43]. Regarding economic factors, CRC is often associated with the label of “burden,” and patients may avoid screening due to concerns about costs [44]. However, such stigma-related factors do not exist in some cases.

Stigma manifestations

Stigma experiences

In a study involving Latino participants, some men expressed concerns that undergoing colonoscopy would challenge their sense of masculinity, viewing the procedure as an intrusion on bodily integrity [41].Additionally, a study on the Islamic community indicated that women feel shy when examined by male doctors and hesitate to undergo fecal tests [42].

Stigma practices

The five studies have shown that screening avoidance is the most common behavioral manifestation. Participants delay seeking medical care because they “feel ashamed to talk about intestinal symptoms” or “feel embarrassed about privacy exposure during examinations“ [41–45]. The uneven distribution of medical resources (e.g., the lack of colonoscopy equipment in rural areas) can exacerbate participants’ “sense of being neglected”, thereby further reducing their willingness to undergo screening [43].

Risk of bias in studies

In this study, a risk of bias assessment was conducted on the included studies. The JBI tool was used to evaluate qualitative studies, and the results showed that 6 studies (including qualitative modules of mixed-methods studies) had a low risk of bias, indicating high methodological rigor in these studies. Meanwhile, the RoBANS tool was applied to assess quantitative studies, with 7 studies (including quantitative modules of mixed-methods studies) rated as having a moderate risk of bias and 2 studies rated as having a low risk of bias. Among the studies with a moderate risk of bias, the main issues included selection bias, unclear control of confounding variables, and ambiguous blinding in outcome assessment; these factors may have certain impacts on the accuracy of the study results. In contrast, studies with a low risk of bias performed well in terms of participant selection, control of confounding variables, measurement of interventions (exposures), blinding in outcome assessment, handling of incomplete outcome data, and selective outcome reporting, making their results relatively more reliable.

Discussion

This scoping review, based on the HSDF, systematically synthesized findings from 15 studies to elucidate the interaction mechanism of"driver–facilitator–marker–manifestation" of stigma among CRC patients and screening participants. The study found that stigma, as a modifiable barrier, stems not only from the social markers of the disease itself but also from the dual influence of healthcare systems and cultural environments. Its impact spans the entire continuum of CRC prevention and treatment, serving both as a psychological burden after cancer diagnosis and a significant barrier to early screening.

The impact of stigma on colorectal cancer patients

The multidimensional impacts and mechanisms of CRC-related stigma on patients can be clearly elucidated through the HSDF. In terms of driving factors, societal-level fear of cancer, the perception that links illness to "unhealthy lifestyles," and patients' negative evaluation of their "cancer identity" interact, thereby inducing intense self-shame[38]. This internal sense of shame is further exacerbated by factors such as families' nonacceptance of stoma status [46, 47] and implicit social exclusion [48], transforming individual psychological stress into social isolation. Ultimately, this leads patients to avoid medical care, conceal their condition, and even exacerbate psychological adjustment disorders while reducing quality of life [49]. Notably, there are significant individual differences in stigma manifestations: physical changes (e.g., stomas, abnormal bowel movements) are prominent stigmatizing markers that interact with the implicit identity label of "cancer patients", trapping patients in a predicament of"self-protection" in social interactions. For instance, some patients reduce social interactions due to fear of rejection, or avoid necessary rehabilitation activities for fear of privacy exposure [50, 51]

The hindering effect of stigma on colorectal cancer screening

The hindering effect of stigma on CRC screening also follows the logic of HSDF, with its core contradiction centering on the conflict between "privacy exposure" in medical settings and "bodily taboos" in societal and cultural contexts [52, 53]. At the level of driving factors, fear of invasive examinations (e.g., colonoscopy), associations of fecal samples with "impurity," and the cognitive bias that "screening equals illness" collectively constitute psychological barriers [54, 55]. Meanwhile, families' avoidance of discussing screening and societal"privacy-related stigmatization" of intestinal symptoms act as facilitating factors, reinforcing the negative association that"active screening equals privacy exposure" [56]. This mechanism directly leads to screening avoidance behaviors: for instance, some individuals delay examinations due to embarrassment from bowel preparation, or forgo screening due to resistance to being examined by doctors of the opposite sex. Notably, the impeding factors vary across groups: women, due to higher societal expectations regarding "bodily purity," are more sensitive to bodily exposure during examinations; specific requirements for"cleanliness" in religious cultures may also affect screening acceptance. Conversely, family support and systematic health promotion can effectively mitigate these barriers, suggesting that societal-level cognitive restructuring is crucial for improving screening participation rates [57]

The Impact of Intersectional Factors on Colorectal Cancer Stigma

The interaction of cross-cutting factors influences CRC stigma and screening behaviors. Notably, the combined effect of age and economic status is significant. Young patients, bearing family responsibilities, are more sensitive to the life impact of ostomy; their identity crisis becomes more prominent if they are also in a low-income state and lack psychological support resources [58, 59]. Gender differences intersect with cultural contexts: men tend to intensify feelings of shame due to the challenge to dignity posed by rectal examinations, while women are troubled by privacy anxiety caused by bodily exposure. For instance, stigma among Chinese patients is often linked to family honor, whereas ethnic minorities in the United States are affected by both religious norms and immigrant identity [60]. For screening participants, the interaction between ethnicity and socioeconomic status is evident. African and Caribbean Black populations show higher acceptance of screening, with religious beliefs and civic responsibility promoting participation; among White British populations, fear of cancer and resistance to sample collection are more common, and those with high socioeconomic status may also question the validity of screening. Low socioeconomic status groups, regardless of ethnicity, are more likely to hinder screening due to misunderstandings of the guaiac faecal occult blood test (gFOBt) instructions [61]; when combined with gender factors, the perception that "cancer primarily affects men" reduces women’s willingness to participate [62]. These multidimensional "cumulative disadvantages" result in more complex stigma and screening barriers among intersectional groups.

Clinical Implications and Intervention Strategies

Based on these findings, clinical practice should implement layered interventions for different dimensions of stigma and strengthen policy support. For patients, intervention should start with addressing the driving factors. Through cognitive intervention, the notion that "cancer equals stigma" can be corrected. For instance, social impact scales can be used to identify high-risk individuals and provide targeted counseling [63]. In terms of promoting factors, it is necessary to enhance family support, reduce social isolation through peer assistance, and care for the needs of stoma patients to restore their "physical integrity" [47]. In clinical settings, improving doctor-patient communication by avoiding emphasis on "personal behavior as a cause of disease" can alleviate patients' shame from self-attribution [38]. For the screening population, interventions focus on eliminating stigma related to examinations [64]: optimizing privacy protection during bowel preparation, assigning gender-matched doctors to reduce embarrassment from bodily exposure; breaking the notion that "intestinal symptoms are taboo" through community advocacy, reframing screening as a "positive health practice," and enhancing participation willingness via family mobilization. At the policy level, it is recommended that governments lead nationwide destigmatization campaigns [65], integrate CRC prevention knowledge into health curricula at the compulsory education stage, and promote the integration of psychosocial care into screening programs within healthcare systems [66]. Future research should focus on developing culturally adapted intervention programs, exploring the dynamic impact of intersectional factors on stigma, verifying intervention effects through longitudinal studies, and ultimately establishing a multilevel"individual–society–system" destigmatization framework.

Limitations

This study has the following limitations: First, the included studies show a significant geographical concentration and are restricted to English-language literature, which may lead to the omission of local studies in regions such as Southeast Asia and Africa. Consequently, factors related to stigma driven by unique cultural backgrounds in these regions have not been fully explored and analyzed. Second, as a scoping review, the included literature exhibits heterogeneity in research design, sample characteristics, and outcome indicators, making it difficult to achieve standardized integration of results. This may affect the comprehensive interpretation of the overall mechanism of CRC stigma. To address these limitations, future research can mitigate gaps caused by geographical and linguistic factors by expanding multilingual searches, incorporating regional databases, and simultaneously optimizing heterogeneity analysis methods to increase the reliability of result integration. Furthermore, all included studies in this research were rigorously evaluated as moderate to high quality, which to some extent improved the reliability of the synthesized conclusions.

Conclusion

In research on cancer stigma, CRC has garnered attention because of features such as ostomy in treatment and privacy exposure in screening. Based on the HSDF, stigma is defined as a multidimensional psychological experience that reveals the specificity of drivers, facilitators, markers, and manifestations. Studies have shown that the changes in body image after stoma surgery may make it difficult for patients to be accepted by society, thereby leading to their stigmatization experiences. Inadequate privacy protection during CRC screening is associated with reduced participation willingness, and its causal mechanism remains to be verified. CRC-related stigma has measurable impacts on patient well-being and care-seeking. Although some studies suggest potential strategies to reduce stigma, further research is needed to evaluate effective interventions and their role in promoting screening participation.

Authors’ contributions

Wenjie Zhao, Mengmeng Chen and Bin Li planned the paper, structured the article and contributed to the core research ideas. Jianyue Dai and Liwen Wang discussed the research issues and provided suggestions. Wenjie Zhao and Mengmeng Chen collected and processed the data. All authors read and approved the manuscript. We warrant that the article is the authors’ original work, hasn’t received prior publication and isn’t under consideration for publication elsewhere.

Funding

This work was supported by the Anhui Provincial University Natural Science Key Project (No. 2022AH051458), the Scientific Research Innovation Program for Postgraduates of Bengbu Medical University (Byycx24056) and the University Synergy Innovation Program of Anhui Province (No. GXXT-2022-058). The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.

Data availability

No datasets were generated or analysed during the current study.

Declarations

Ethics approval and consent to participate

Not applicable.

Consent for publication

Not applicable.

Competing interests

The authors declare no competing interests.