Sexual Experience and Stigma Among Chinese Patients With an Enterostomy: A Cross-sectional, Descriptive Study

Colorectal cancer is common in China, and studies on the sexuality of patients with an ostomy are limited, particularly information about the relationship between sexual experience and stigma. Purpose: A study was conducted to assess the association between sexual experience and stigma in Chinese patients with an enterostomy. Method: A cross-sectional, descriptive study was conducted between May 2017 and August 2018 among patients with an ostomy at 3 general hospitals. Patients 18 to 70 years old with a history of ostomy surgery  more than 1 month prior, who had a regular sexual partner, and were willing to provide informed consent were eligible to participate; persons with mental illness, preoperative sexual dysfunction (SD), or tumor recurrence or metastasis were excluded. Study participants completed a paper-and-pencil questionnaire including demographic (gender, educational level, occupation, geographic place of residence, and monthly family income) and ostomy-related (type of ostomy, time since ostomy surgery, insurance coverage, ostomy-related complications, and sexual guidance) information. Sexual experience was assessed using the 5-item Chinese version of the Arizona Sexual Experience Scale (C-ASEX) (range 5 to 30; scores >19 reflect sexual dysfunction). Stigma (internalization of perceived shameful experience) was assessed using the 24-item, Likert-type Chinese version of the Social Impact Scale (C-SIS) (score range 24 to 96; lower scores indicate less stigma). Quantitative data from the questionnaires were deindentified and entered into statistical software for analysis by 2 researchers. Multivariate regression analysis was used to assess the associations among sexual experience, stigma, and other factors. Results: Of the 240 questionnaires distributed, 187 (77.9%) were completed and included in the final analysis. The average C-ASEX score was 22.77 ± 6.78, and 118 participants (63.1%) had SD. The average C-SIS score was 59.36 ± 11.20, indicating a moderate level of stigma. A significant association was found between sexual experience and stigma (B = 0.101, P = .006). Sexual experience perceptions were determined by sexual guidance needs (B = 3.179, P <.001), geographic area of residence (B = -2.087, P = .014), receipt of sexual guidance (B = -2.989, P = .001), and insurance coverage (B = 1.822, P = .015). Conclusion: Health care workers should strive to reduce the stigma of having a stoma and offer sexual guidance as a means to improve quality of sexual life. Particular attention should be paid to the sexual well-being of persons living in rural areas and those paying for medical expenses out of pocket.

Colorectal cancer (CRC) is the third most common cancer and the fourth leading cause of cancer-related death worldwide.¹ The crude incidence rate for CRC in China is increasing rapidly, which has made CRC the fifth most common cancer in China.² 

Surgical resection, including rectal resection and colon resection, represents the mainstay treatment of CRC and usually entails committing the patient to an ostomy to effect a cure. The increase in the incidence of CRC has contributed profoundly to the increase in ostomy creation.³ 

Due to the success of efforts to prolong life expectancy of patients with CRC, patient quality of life has drawn increasing attention. Three (3) prospective studies (1 from South Korea [N = 217],³ 1 from Canada [N = 120],⁴ and 1 from the United States [N = 141]⁵) report that living with an ostomy may have a negative impact on factors such as body image, sleep, mood, social life, career, and health-related quality of life. Traa et al⁶ conducted a descriptive study among 313 patients with colorectal cancer and found sexuality was an important indicator of quality of life and happiness in patients with an ostomy. Costa et al⁷ and Benedict et al⁸ conducted descriptive studies of sexual dysfunction (SD) among 43 male patients in Portugal and 70 women in New York who underwent surgical treatment for rectal cancer and found 76% and 81% patients, respectively, had sexual problems. A prospective, explorative study⁹ conducted among patients of a stoma clinic at a university hospital in Sweden indicated that patient problems with postoperative adjustment regarding sexual function was a serious concern. In their phenomenological study of 14 patients with an ostomy in Turkey, Vural et al¹⁰ found patients might suffer a series of sexual problems and marital tension due to a decrease in sexual desire and attraction, which was consistent with the results of a qualitative study by Campos et al¹¹ among 15 patients with colostomy. A literature review¹² also indicated that the creation of an ostomy can have an adverse effect on sexual health and sexuality. SD is a common long-term sequela of CRC surgery, which often was found postsurgically in patients with an ostomy.^13,14 The research by Reese et al⁵ found 74% of female and 65% of male participants reported SD. A systematic review¹⁵ reported approximately 30% to 40% of patients 3 months after surgery for an ostomy were unable to resume sexual activity; among them, 23% to 69% of men and 19% to 62% of women suffered new SD. 

However, a review¹⁶ indicated that unless health care workers address sexual issues actively, patients rarely voice their concerns about sexuality. A cross-sectional study¹⁷ among 805 participants found it could be embarrassing for patients to voice issues regarding sex with health care workers because sexuality was considered very private, especially for Chinese patients. Physiologically, the main sexual problems for male ostomy patients are erectile dysfunction and retrograde ejaculation; female ostomy patients may experience painful intercourse and vaginal dryness.¹⁰ However, a descriptive study¹⁸ showed the negative psychosocial impact of the stoma as a cause of SD has been overlooked. Few studies have investigated psychosocial factors, such as self-image disorder, self-loathing, and depression, that can lead to SD or their impact on ostomy patients’ sexual lives.^5,10,13

Palomero-Rubio et al¹⁹ conducted a qualitative study among 18 patients with a colostomy (6 women, 12 men) and found a colostomy involved changes in a person’s experience of privacy, resulting in stigma. Stigma in this instance refers to an internal shameful experience that could be considered a sign of social disgrace.²⁰ Two (2) quantitative studies (1 Turkish [N = 199]²¹ and 1 German [N = 305]²²) have shown cancer patients experience considerable stigma, leading to far-reaching negative consequences. In the study conducted in Turkey,²¹ cancer patients reported negative attitudes toward cancer and felt stigmatized. The German study²² reported employment and social support could relieve patients’ stigma. In a cross-sectional study, Smith et al²³ evaluated 195 patients with a colostomy and found patients who had high disgust sensitivity felt more stigmatized, and this was strongly related to lower life satisfaction. Yuan et al²⁴ conducted a cross-sectional study among 209 patients with a stoma at the stoma clinic of a tertiary cancer center in Guangzhou, China, and found moderate levels of stigma among Chinese patients with a stoma. Due to the unique characteristics of Chinese culture, patients and the public are reluctant to accept a stoma.²⁴ Thus, patients must endure a lack of understanding and isolation from their family, coworkers, and society, which may increase perceived stigma.

Studies on the sexuality of patients with an ostomy are limited, and data addressing associations between sexual experience and stigma are lacking, especially in China where traditional culture is relatively conservative.^25,26 For these reasons, the aim of the current study was to identify associations between sexual experience and stigma in Chinese patients with an enterostomy and to explore factors influencing sexual experience.

Study design and population. In this cross-sectional study, data were collected from May 2017 to August 2018 using a convenience sampling method in 3 general hospitals in Guangdong Province, China. The authors recruited patients visiting the stoma clinic of each hospital; the purpose and significance of the study were explained to the patient and consent to participate was obtained. Inclusion criteria stipulated participants must be adults 18 to 70 years of age with an ostomy more than 1 month, who were discharged from the hospital in stable condition, in a relationship with a regular sexual partner, able to read, and willing to provide written informed consent. Patients who had a urostomy, a history of mental illness, preoperative SD, or tumor recurrence or metastasis were excluded from this study. The required sample size was determined using power analysis.²⁷ A pilot study determined an alpha level of 0.05, a power of 0.80, and an effect size of 0.133. With these data, the required sample size was 97.

Before completing the questionnaire, participants were notified about the purpose and the process of the survey. Given that sexual experience is a sensitive topic, participants were informed survey data would remain anonymous and all of the information they provided would be kept in confidence. After signing an informed consent form, each respondent was given the questionnaires. Respondents completed the paper-and-pencil questionnaires independently in a quiet place alone, and the investigators did not interrupt them. Investigators provided standard explanations when necessary.

Measurement tools. The Chinese version of the Arizona Sexual Experience Scale (C-ASEX), the Chinese version of the Social Impact Scale (C-SIS), and a demographic and ostomy-related questionnaire developed by the authors for this study were used to obtain demographic information and assess the extent of sexual experience and stigma among the participants. 

Sexual experience. The Arizona Sexual Experience Scale (ASEX) was created and validated by McGahuey et al²⁸ in 2000 and translated into Chinese (C-ASEX) by Zhang et al²⁹ in 2011. The items in this instrument address desire (How strong is your sex drive?), arousal (How easily are you sexually aroused?), penile erection or vaginal lubrication (Can you easily get and keep an erection? or How easily does your vagina become moist or wet during sex?), orgasm (How easily can you reach an orgasm?), and satisfaction: (Are your orgasms satisfying?). Item 1 is scored from 1 to 6 where 1 = extremely strong, 2 = very strong, 3 = somewhat strong, 4 = somewhat weak, 5 = very weak, and 6 = no sex drive. Items 2 through 5 are scored as 1 = extremely easily, 2 = very easily, 3 = somewhat easily, 4 = somewhat difficult, 5 = very difficult, and 6 = never aroused. Total scores range from 5 to 30; higher scores indicate less perceived quality of sexual experience. SD is defined as a total score of 19 or higher, 5 or higher on any item, or 4 or higher on 3 items. The Cronbach’s α coefficient was 0.950.

Social impact. The Social Impact Scale (SIS) was developed by Fife and Wright³⁰ in 2000 and translated into Chinese (C-SIS) by Pan et al³¹ in 2007. It was initially applied to measure the level of stigma in cancer patients and AIDS patients. This scale comprises 24 items and 4 dimensions (social rejection, internalized shame, social isolation, and financial insecurity). Each item was scored from strongly agree to strongly disagree (1–4) for a total score ranging from 24 to 96. The level of stigma for each item was classified into low (1–1.99), moderate (2–2.99), or high (3–4) based on average item scores and then totaled in each categorization. The Cronbach’s α coefficient was 0.937 in the study.

Demographic data. Demographic (age, gender, educational level, occupation, geographic place of residence, and monthly family income) and ostomy-related data (type of ostomy, time since surgery, insurance coverage, ostomy-related complications, and sexual guidance [ie, guidance about sexuality received from enterostomal therapists]) also were collected using a demographic and ostomy-related questionnaire, which was developed by authors based on a descriptive study.³²

Data analysis. Quantitative data from the questionnaires were entered into SPSS, version 20.0 (SPSS, Inc; Chicago, IL) by 2 researchers. All continuous variables were presented as mean ± standard deviation. The categorical variables were expressed as numbers and percentages. Continuous variables were compared using the independent t test or one-way analysis of variance. Pearson’s correlation analysis was used to investigate the association between sexual experience and stigma. The statistically significant parameters from the univariate analysis were included in the multivariate analysis. Multiple linear regression (stepwise regression procedure) was used to identify the association between sexual experience and stigma and explore the main influencing factors of sexual experience in Chinese patients with an ostomy. A 2-tailed value P <.05 was considered statistically significant.

Ethical considerations. This study was approved by Nanfang Hospital Medical Ethics Committee of University in Guangdong Province, China, and an Ethical Approval Certification was obtained. Participant informed consent was obtained before the investigation. Participants were told that all of the information received would be kept confidential and that they could stop study participation at any time without repercussion.

Sample characteristics. Of the 240 questionnaires distributed, 38 (15.8%) participants did not agree to participate, and 15 (6.3%) participants consented to participate but did not complete the entire survey, leaving 187 participants (77.9%), average age 51.8 ± 10.7 (range 21–70) years who sufficiently completed the study instruments and were included in the final analysis. Among them, 126 (67.4%) were male, 98 (52.4%) underwent colostomy surgery, 89 (47.6%) had an ileostomy, and 61 (32.6%) reported they had experienced stomal or peristomal complications. The time between stoma creation and the survey was 1 to 2 months (30; 16.0%), 2 to 3 months (43, 23.0%); 3 to 6 months (56; 29.9%), 6 to 12 months (36; 19.3%), or more than 12 months (22; 11.8%). Most participants (124; 66.3%) did not receive sexual guidance, and only 16 (8.6%) patients reported a considerable need for sexual guidance. In addition, 129 patients (69.0%) had health insurance to cover their medical expenses. Other characteristics studied are shown in Table 1. 

Sexual experience and stigma. The mean C-ASEX scale score was 22.77 ± 6.78; 118 participants (63.1%) had SD (ie, C-ASEX score >19 points), and 69 (36.9%) had normal sexual function (NSF) (C-ASEX score <19 points). Patients with SD had higher C-ASEX scores than patients with NSF, including the factors sexual drive, sexual arousal, vaginal lubrication/penile erection, orgasm, and sexual satisfaction (P <.001) (see Table 2). The mean stigma score was 59.36 ± 11.20, a moderate level. However, a high level of stigma was found in 41 persons (21.9%). With regard to stigma dimension, the highest mean score was for financial insecurity (2.59 ± 0.67), and the lowest mean score was for social rejection (2.38 ± 0.49)(see Table 3). 

Relationships among sexual experience, stigma, and sociodemographic factors. A significant positive association was observed between sexual experience and stigma in ostomy patients; patients with higher stigma scores had higher C-ASEX scores (r = 0.347; P <.01) (see Table 4). In addition, patients 60+ years had higher C-ASEX scores (25.11 ± 6.34) than persons 45 to 59 years old or 18 to 44 years old (22.27 ± 6.64 and 20.83 ± 6.95, respectively; P = .005). Patients living in a rural area had higher C-ASEX scores (25.26 ± 5.91) than patients living in an urban area (20.09 ± 6.66). Patients with a primary education had higher C-ASEX scores (25.30 ± 5.80) than patients with a secondary or higher education (24.00 ± 6.32 and 18.14 ± 6.31, respectively). Patients listing farming as their occupation had higher C-ASEX scores (26.33 ± 5.54) than patients who were retired, unemployed, or in a technical field (25.04 ± 6.83, 23.79 ± 6.20, and 20.60 ± 6.60, respectively). Patients with a 1000-2999 (Chinese yuan, Ren Min Bi) monthly family income had higher C-ASEX scores (25.13 ± 6.01) than patients with a 3000–4999 or 5000+ monthly family income (21.09 ± 6.53 and 20.53 ± 7.31, respectively). Patients paying for medical expenses out-of-pocket had higher C-ASEX scores (25.31 ± 6.11) than patients with Medicare or public assistance insurance coverage (22.93 ± 6.09 and 11.73 ± 1.33, respectively). Patients without sexual life guidance had higher C-ASEX scores (25.02 ± 6.46) than patients with occasional or frequent guidance (18.66 ± 4.93 and 13.50 ± 3.42). Patients stating they had no sexual life guidance had higher C-ASEX scores (26.04 ± 5.75) than patients expressing some or a considerable need for guidance 19.82 ± 6.05 and 16.19 ± 4.65, respectively). All of these factors were significant at P <.0001) (see Table 1). Multivariate analysis. Stepwise multiple linear regression showed a significant positive association between C-ASEX score and stigma (B = 0.101; P = .006). C-ASEX scores were also significant with regard to sexual guidance (B = 3.179; P <0001), place of residence (B = -2.087; P = .014), receipt of sexual guidance (B = -2.989; P = .001), and insurance coverage (B =1.822; P = .015). Persons who did not receive sexual guidance, persons living in rural areas, and persons paying for medical expenses out-of-pocket had higher C-ASEX scores (see Table 5).

The mean C-ASEX score of participants in the current study was 22.77 ± 6.78 (63.1% of the participants had SD), which was slightly higher than the results observed in a prospective study by Zhu et al²⁵ in China (N = 75) where the mean C-ASEX score was 20.56 ± 5.38. This difference may be due to differences in sample size (N = 187 vs. N = 75) and age differences of participants. In the current study, 28.8% of participants were older than 60 years old compared to 1.3% of the population in the study by Zhu et al²⁵ (1.3%). Similar results were shown in the descriptive study by Jayarajah and Samarasehera³³ (N = 43) in Sri Lanka, which found 33% patients with an ostomy resumed sexual activity following surgery and 29.6% were satisfied with their sexual activity. The qualitative studies conducted by Vural et al¹⁰ (N = 14; Turkey), Campos et al¹¹ (N = 15; Brazil), and Sarabi et al³⁴ (N = 27 and 10 spouses, US) found that patients with an ostomy experienced a series of sexual problems due to a decrease in sexual desire and attraction. A cross-sectional study³⁵ found that an ostomy was a considered a physiological disability or deformity. A phenomenological study³⁶ indicated that an ostomy could transiently decrease sexual interest because of internalized shame caused by body image⁸ and the sound, smell, and leakage of excrement.²⁴ In addition, a review³⁷ noted a lack of understanding about the stoma could lead to erroneous conclusions such as sexual life could cause a tumor recurrence, transmission to spouses, or damage the ostomy. Many studies,^{10,11,25,33,36,37} including this current work, highlight the importance of ostomy and sexual health education for both the patient and spouse and the role the enterostomal clinician plays in providing sexual education and guidance from preoperative care to postsurgical follow-up.

Stigma and sex. The current study identified a positive association between sexual experience and stigma among patients with ostomy. Higher stigma scores were associated with higher C-ASEX scores. The phenomenological study by Fatma et al¹⁰ found patients might feel less attractive because of the stigma associated with having an ostomy, which might seriously affect self-confidence and satisfaction with their sexual life. The current study found a mean stigma score of 59.36 ± 11.20, a moderate level, which was in line with the results observed by Yuan et al²⁴ (69.65 ± 13.18, a moderate level). Similar results also were found in the descriptive study by Smith et al²³ that showed patients highly sensitive to disgust felt more stigmatized, and this was closely related to lower satisfaction with life. The qualitative study Palomero-Rubio et al¹⁹ also found a colostomy involving changes in a person’s experience of privacy could result in stigma. The findings from the current study suggest efforts to reduce stigma may promote quality of sexual life in patients with an ostomy. These efforts may include increasing awareness about and acceptance of ostomies among Chinese patients and the public.³⁸

Sexual guidance. The current study found C-ASEX scores were associated with sexual guidance needs and receipt of sexual guidance, which was consistent with the study by Zhu et al²⁵ — that is, C-ASEX scores of patients were lower if they received sexual guidance or expressed a considerable need for sexual guidance. In the current study, most respondents (124; 66.3%) did not receive sexual guidance, but 16 (8.6%) patients reported a considerable need for sexual guidance. This could be an accurate response or reflect that they were too embarrassed to say they needed sexual guidance because of the traditional beliefs of Chinese people that sex is too private to discuss.¹⁷ In contrast, Danielsen et al³⁹ systematically reviewed the literature and found that most ostomy patients and spouses expressed the need for sexual guidance. Vural et al¹⁰ also found patients wanted more information and support from ostomy nurses regarding sexual issues. Due to the conservatism of Chinese culture and shortage of enterostomal therapists in China, few patients receive sexual education and guidance after surgery.²⁵ Breaking the traditional beliefs regarding sex among Chinese patients with an ostomy is the most crucial step an enterostomal therapist can take in helping patients be more proactive in discussing sexuality and solving sexual problems.^25,26 Patient-tailored sexual health care protocols should be developed in order to help patients receive more information and support from health care providers regarding sexual issues.¹⁰ The spouse also should be involved in the ostomy nursing process.²⁵

Geographic area. The current study found the C-ASEX scores of the participants living in rural areas were higher than those living in urban areas. In a review, Sun et al⁴⁰ described the current Chinese health care delivery system and indicated that different places of residence might be closely correlated with different levels of education and socioeconomic status in China, which can affect self-worth, information acquisition behavior, and sexual life. Lihua et al⁴¹ conducted a descriptive study among 317 CRC patients in China and found rural patients had lower awareness of diseases and health care and a higher economic burden than those in urban areas, which affected patients’ medical care conduct, including sexual counseling. Routine counseling about sexual well-being during follow-up visits is essential for the patients, and referral should be arranged if needed, especially for patients living in rural areas.

Insurance coverage. The current study found C-ASEX scores were associated with insurance coverage; C-ASEX scores were lower if the patients had health insurance. The cross-sectional study among 43 ostomy patients in Sri Lanka by Jayarajah and Samarasekera³³ reported that the additional economic burden caused by the ostomy may have a negative effect on family life and relationships. A qualitative study²⁰ showed most patients had to change or leave their jobs after surgery, and the economic expenses of colostomy were an important factor for quality of life. On the basis of Maslow’s Hierarchy of Needs theory, economic burdens may negatively impact quality of life, even sexual life.⁴² Health insurance can reduce the economic burden of patients and, therefore, improve quality of life, including sexual life. A comprehensive health care insurance reform was initiated in China in 2003, but uneven development of the insurance plans led to inequality in health care provision.⁴⁰ More measures are needed to further improve the China’s Health Insurance System, such as clarification of reimbursement rules for ostomy-related products and clinical visits.³² The authors believe health care workers should identify and attach more importance to individuals of disadvantaged economic status and help them connect with social workers if needed. The government should make efforts to mitigate unemployment attributable to social discrimination and help ostomy patients find alternative sources of income and socioeconomic support to relieve some of their economic burden.

This study has several limitations. First, respondents were recruited by convenience sampling from a single geographic area of China. Second, because sexual topics are very private and sensitive, some respondents may not have responded honestly even when promised that their information would be kept in confidence.

A cross-sectional, descriptive study identified the association between sexual experience and stigma among 187 Chinese patients with an enterostomy, findings that could be relevant for health care providers in terms of assessing ostomy patients and how they experience sexual situations and encouraging them to provide patient-tailored sexual health care. The majority of patients (118) had a high C-ASEX score, indicating SD. A significant association was observed between sexual experience and stigma. Sexual experience was found to be influenced by sexual guidance needs, geographic area of residence, receipt of sexual guidance, and insurance coverage. Health care workers should strive to reduce stoma-related stigma and offer sexual guidance as a means to improve quality of sexual life. Attention also should be paid to the sexual well-being of persons living in rural areas and those paying for medical expenses out of pocket. The policy of the China Health Care Insurance System should be improved to reduce the economic burden on ostomy patients.

The authors thank all of the ostomy patients who participated in this study and the administrators in the hospitals who made the study possible. They also thank Professor Kate Seers of University of Warwick in the United Kingdom for assistance in revising the manuscript.

Ms. Qin is a lecturer, Southern Medical University, Guangzhou, China. Ms. Ye is an enterostomal therapist, The Sixth Affiliated Hospital, Sun Yat-sen University, Guangzhou, China. Dr. Wei is a physician, Fuwai Hospital, Chinese Academy of Medical Sciences, Peking Union Medical College, Beijing, China. Mr. Wen is a medical student and Dr. Shi is a vice professor, Southern Medical University. Ms. Zhen and Ms. Zhu are enterostomal therapists, Southern Medical University, Nanfang Hospital, Guangzhou, China. Dr. Zhang is Professor and Dean, School of Nursing, Southern Medical University. Please address correspondence to: Lili Zhang, PhD, RN, School of Nursing, Southern Medical University, No.1023, South Shatai Road, Baiyun District, Guangzhou, Guangdong, China 510515; email: zhanglili_gz@126.com.