Rusch, Melanie PhD*†‡; Shoveller, Jean PhD†; Burgess, Susan MD§; Stancer, Karen MD; Patrick, David MD, MHS†∥; Tyndall, Mark MD, ScD‡§
DESPITE THE INCREASING CAPABILITIES of diagnostic testing, the continuing development and refinement of less-invasive collection methods, and the availability of effective treatment, chlamydia, gonorrhea, and syphilis control continue to frustrate public health measures. Efforts aimed at preventing infection and reducing risk behaviors are only one part of the fight against sexually transmitted diseases (STDs). Another aspect is the ability and willingness of individuals to maintain their sexual health through regular check-ups and timely screening for perceived symptoms. Sexual health care-seeking behaviors are impacted by a number of social factors, including stigma and shame, power and gender, support and communication, all of which can be present at the individual, system, and policy levels.1–3
In Goffman’s seminal work on stigma,4 3 categories were identified—physical stigma, moral stigma, and stigma of tribe. Physical stigma refers to a visible mark or deformity of the body, moral stigma relates to social norms and delineations of good and bad behavior, and stigma of tribe arises from attributes ascribed to a particular race, nation, or religion. In the case of STDs, the infection itself may give rise to physical stigma, whereas the sexual nature of the infection may give rise to moral stigma. In qualitative work by Nack,5,6 an additional level of tribal stigma was identified. Discourse concerning sexual behavior norms evolved around the moral division of respectable or “good girls” and disreputable or “bad girls.” Membership in the “good girl tribe,” or morally correct category, whether through actual behavior, avoidance of STD, or concealment of behaviors or diagnoses, was precarious, whereas membership in the “bad girl tribe” was easy to gain and often thought of as irreversible. This novel definition of tribal stigma is particular to women, mainly attributable to the social history of sexuality and STDs.
Today’s public health messages may be more progressive than the war-era flyers warning soldiers away from “dirty” women; however, there remains a stigma associated with messages intended to help prevent STDs, especially those that rely on scare tactics or that create categories of behaviors, characteristics, and, by extension, people, which should be avoided.7 Research into the experiences and the views of people living with STDs indicates that there needs to be careful consideration and balance in using these approaches.1 While successfully encouraging safer behavior, these messages may also serve to increase stigma for those infected with STDs, thereby increasing isolation and delaying treatment-seeking or adequate sexual health management.3,5,8
Qualitative work among public clinic attendees in Brazil found higher stigma to be important factor in delayed treatment, whereas a general population survey in the Southern United States discovered that nearly half of respondents indicated embarrassment of STDs would negatively affect their willingness to access care.9,10 Another qualitative study in England found stigma, shame, and embarrassment to be a common theme among STD clinic attendees with significant scores for anxiety on the Hospital Anxiety and Depression scale.11
Other barriers to seeking sexual health care may include practical issues, such as location, hours of operation, and availability or accessibility of transportation, knowledge of and severity of symptoms, awareness of interventions, health beliefs, and lack of social support.12,13 Furthermore, people who are marginalized in society, such as commercial sex workers or drug users, may be apprehensive in searching out health care because of inherent distrust of authority or fear of persecution for their illicit behavior.14 Notably, gender differences in general health care-seeking behaviors have also been reported, wherein women are found to more often delay treatment and be more affected by embarrassment and stigma.12,15 These delays can be important for the health of the individual as well as their sexual contacts.
Overall, studies reiterate that social context, structural barriers, and issues of stigma are relevant to health-seeking behaviors. Levels of stigma and shame have been shown to have a bearing on how easy or difficult it is for an individual to take positive action, either through personal perceptions of STDs, or perceptions of society’s views of STDs and social norms of sexual behavior.1,5,16,17In this study, the association of STD-stigma with sexual health care behaviors, including annual Papanicolaou (Pap) smears and STD testing, was assessed among a group of low-income women from a marginalized community. Even though Pap smears are not directly linked to STDs, it was believed that the indirect link to sexual behavior might be enough to result in an impact of STD-stigma on regular sexual health visits as well as on specific STD testing behaviors. It was hypothesized that stigma scores would be negatively correlated with sexual health care in this population.
A survey and urine screen was carried out from October to December 2004 among women attending a weekly evening program exclusive to women held at a local community health clinic in Vancouver’s Downtown Eastside. The evening-long program offers women a safe place to access food and health care, as well as to socialize with other women, and take part in various activities, including free haircuts, footbaths, art projects, and movie nights. A convenience sample was passively recruited through announcements at the beginning of each night, as well as through snowball sampling via word of mouth, enabling participation of women who did not regularly attend the program.
The survey collected information including demographics (age, ethnicity, education, employment), use of and contact with services available in their community, and self-reported patterns of sexual behavior and drug use. Questions regarding the use of sexual health care services such as annual Pap smears and testing or treatment for STDs were also included.
Participants were given a copy of the consent form, and study coordinators read through the details of participation before asking for their consent. Participants were able to take part in the interview regardless of whether they provided a urine sample for STD testing. Treatment for positive STD results was provided through the clinic doctors as per established STD testing and treatment protocols. Participants received $10 remuneration for completing the survey. The study was approved by the University of British Columbia Behavioural Research Ethics Board.
STD stigma scales were developed using exploratory factor analysis and building on Goffman’s basic 3 categories, drawing on previous constructs from a general STD stigma and shame scale by Fortenberry and incorporating the idea of the tribes of womanhood introduced by Nack.4,5,8 The 3 scales that emerged—tribal stigma, social stigma, and internal stigma—were standardized and α-scores were calculated. Tribal stigma reflects the delineations of “good” and “bad” women, assessing perceptions about what “type” of women would get an STD. Social stigma incorporates elements of society’s views about women with STDs, including health care workers, as well as concern over privacy issues and neighborhood gossip. Internal stigma included elements of self-judgment, shame, and embarrassment.
Associations of demographics and behaviors with 2 sexual health care behaviors were assessed: having had a Pap smear in the last year, and having been screened or treated for an STD in the past year. Higher scores on the STD-stigma scales equate to higher stigma. The latter associations were limited to those women who reported sexual activity with a male partner in the past 6 months. Categorical variables were assessed using Pearson’s chi-square test, and continuous variables were assessed using the Mann-Whitney test.
The impact of STD stigma on health-seeking behavior was assessed using logistic regression. Unadjusted and adjusted odds ratios were computed. The final adjusted models incorporated demographic variables, sexual behaviors, and general health care contact levels, using forward stepwise regression to select relevant characteristics with an inclusion cutoff of P = 0.15. Again, this analysis was restricted to women reporting sexual activity in the previous 6 months.
Even though numbers were not sufficient, stratification was done to explore the potential for an interaction between stigma and ethnicity.
Table 1 lists the items used in the 3 scales. The α-coefficients for each scale were 0.737, 0.705, and 0.729 for tribal stigma, social stigma, and internal stigma, respectively. Assessing each item for response and nonresponse characteristics, there was no large variation found; however, overall injection drug users (IDU) and current sex workers were less likely to complete the stigma section of the questionnaire. As this was the last section of the survey, a few women did not complete all of the questions, and 9 women were excluded because of incomplete answers in this section of the survey.
The association of demographics, sexual and drug use behaviors, and stigma levels with having had a Pap smear in the past year and with having had any testing or treatment for an STD in the past year were evaluated, and the results are shown in Table 2. Having a Pap smear in the past year was marginally associated with having a high school diploma and was negatively associated with being an injection drug user and using condoms consistently with regular (nonclient) partners (among women reporting regular partners). Among IDU, approximately 60% reported having a Pap smear, compared with 83% of non-IDU (P <0.05).
Having an STD test or treatment in the previous year was negatively associated with using condoms consistently with casual partners (among women reporting casual partners). None of the stigma scales were associated with either of the sexual health-seeking outcomes; however, of women reporting current symptoms (N = 27; median days, 14, range, 1–120) social and internal stigma scores were marginally higher among those who did not report any STD testing or treatment compared with those who did (social stigma, 0.87 vs. 0.55, P = 0.068; internal stigma, 1.48 vs. 0.81, P = 0.056).
Table 3 exhibits the results from logistic models assessing the odds of reporting Pap smears or STD testing/treatment in the past year. In adjusted models, having completed high school was positively associated with reporting a Pap smear in the last year, whereas injection drug use was negatively associated with reporting a Pap smear. In the model for STD testing, adjusting for ethnicity, current sex work, and perceived STD symptoms in the past year, higher scores on the internal stigma scale were found to be associated in a negative direction with reporting of STD testing or treatment in the past year (adjusted odds ratio, 0.92; 95% confidence interval, 0.85–0.99).
Although there were too few women to properly assess any interaction with ethnicity, the strong association with Aboriginal ethnicity in the final model led us to explore this possibility. Overall scores were higher among Aboriginal women, and both social stigma and internal stigma scores were higher among Aboriginal women who reported no STD testing or treatment as compared with those reporting a test or treatment (internal stigma, 1.93 vs. 1.09, P <0.05; social stigma, 1.21 vs. 0.79, P <0.05).
Although qualitative studies of stigma are better suited to understanding personal experiences with stigma, expressions of stigma, and the manner in which this affects an individual’s behavior, the ability to quantitatively assess stigma within a population is also useful for ascertaining relationships that can inform program planning. In this population of women from a high-risk neighborhood, higher levels of internal stigma were associated with not having been tested or treated for an STD in the past year.
Although it was hypothesized that stigma would negatively impact sexual health care, including Pap smears and STD testing, this was not the case. This is not entirely surprising, because Pap smears are recommended for all women, and are therefore not directly linked to “bad” sexual behavior. In promoting regular check-ups, there may be a disassociation of Pap smears from any STD-related language to reduce any STD-related stigma that may cause some women to avoid presenting for a Pap smear. Once women have presented for an appointment, health care workers can discuss STD testing and other issues. Although in the short term this strategy may be successful at increasing the numbers of women having a Pap smear, removing the sexual association of Pap smears inherently supports the stigmatizing categories of good girls who need only come in for regular cancer screening and bad girls who need STD testing. Although there was no relationship with tribal stigma or social stigma and having either a Pap smear or STD testing, higher levels of internal stigma were related to lower levels of STD testing specifically.
The fact that, after controlling for symptoms and potentially targeted demographics, higher internal stigma remained associated with less STD testing or treatment illustrates how feelings and social beliefs can impact an individual’s behavior. Not only is there a possible concern with becoming discredited, either to health care workers or to the community, but there might also be a need to hide or avoid the issue. Many studies on chronic STD infections such as herpes have indicated deep psychological impacts and damage to self-esteem among those diagnosed.1,18,19 Again, the higher the perceived stigma before diagnosis, the higher the impact; thus, women who fear a positive diagnosis may avoid testing altogether. Although the current study was not able to assess time to treatment, the higher stigma scores among women with STD symptoms who did not report testing or treatment as opposed to those who did is suggestive of treatment delays due to stigma. If delaying or avoiding testing means that symptoms or other concurrent infections go untreated, this can lead to increased susceptibility to more serious infections or long-term complications that could have been averted.
The importance of culture on stigma was illustrated in both the overall increased stigma scores found among Aboriginal women, and the suggested interaction between stigma and Aboriginal ethnicity about accessing sexual health care. Although Aboriginal women were more likely to report having had an STD-related health care visit as compared with non-Aboriginal women, social and internal stigma scores were significantly higher among Aboriginal women reporting no STD-related visit. This may reflect the persistence of STD stigma as a barrier to accessing care, even in the face of increased, directed, STD testing and treatment efforts.
There are several places for women in this neighborhood to receive sexual health care. In addition to drop-in clinics, outreach nurses have a consistent presence throughout the community. This fact is reflected in the comparatively high numbers of women who had received at least 1 Pap smear in the past year (75%), which is equal to or higher than proportions that have been reported by other studies on sexual health care.20–22 Nonetheless, barriers to regular sexual health care remain. Aside from the association of internal stigma and decreased STD testing, there was an independent association between injection drug use and not having had a Pap smear. Given the existing outreach structure and the annual “Pap blitz” programs, it may be useful to examine ways to increase the uptake of screening among the IDU population, through targeted advertising, expansion of locations, or discussions within the IDU community of women to assess what other issues may be preventing them from accessing these services.
There are several limitations to this study. Self-report of sexual health care behaviors or opinions about STDs may have been biased through socially desirable responses. However, the questions about sexual health care and STD testing were asked after a series of questions about sexual behaviors, use of condoms, and other risk behaviors, which may have helped lessen any embarrassment around reporting of STD testing. On the other hand, women may have felt that they should report having had a Pap smear, as this is recommended; however, given the large amount of outreach specifically for Pap smears in the past few years in this community, the large number of women who reported having had a Pap smear was not unexpected. Also of concern is the possibility of recall bias, especially in regards to STD testing. This could be a problem among women who may consent to STD testing in the context of a Pap smear, but because of the disassociation of Pap smears and STDs may not recall whether no additional follow-up to the STD test was needed.
This study was able to sample a diverse group of women from a high-risk neighborhood. In addition, even though the sample was recruited from a clinic site, the evening program serves as a drop in for many services, including dinner, clothing, and other aspects not directly related to seeing a health care professional. Despite the neutral setting of the evening, it is a clinic and, even within the context of a safe evening for women, perceptions of STD-related stigma and moral categories of bad versus good girls were present. Although screening and treatment programs are useful, stigma and fear of positive diagnosis will continue to prevent widespread regular sexual health care. Screening programs that are tailored for certain high-risk groups may be effective, but extra care is needed to ensure that these programs are not adding to existing perceptions of discrimination or stigma. Messages of prevention need to be crafted to combine education around risk factors and the responsibility of all sexually active persons, with the reality of STDs as an unwanted, but possible outcome among sexually active persons. In addition, the delivery of positive STD diagnoses should not be paired temporally with a reiteration of the risks that could have been avoided, but should instead be paired first with support for the individual with their diagnosis and possible treatments, and later followed-up with messages focused on future prevention, rather than on previous mistakes.
1. Fortenberry JD. The effects of stigma on genital herpes care-seeking behaviours. Herpes 2004; 11:8–11.
2. Hannigan S, Jones-Devitt S. Removing the stigma of sexually transmitted infections among women. Nurs Times 2004; 100:48–50.
3. Lichtenstein B. Stigma as a barrier to treatment of sexually transmitted infection in the American deep south: Issues of race, gender and poverty. Soc Sci Med 2003; 57:2435–2445.
4. Goffman E. Stigma: Notes on the Management of Spoiled Identity. New York: Simon & Schuster, Inc., 1963.
5. Nack A. Bad girls and fallen women: Chronic STD diagnoses as gateways to tribal stigma. Symbolic Interact 2002; 25:463–485.
6. Nack A. Damaged goods: Women managing the stigma of STDs. Deviant Behav 2000; 21:95–121.
7. Brandt A. No Magic Bullet: A Social History of Venereal Disease in the United States Since 1880. New York: Oxford University Press, 1985.
8. Fortenberry JD, McFarlane M, Bleakley A, et al. Relationships of stigma and shame to gonorrhea and HIV screening. Am J Public Health 2002; 92:378–381.
9. Malta M, Bastos FI, Strathdee SA, et al. Knowledge, perceived stigma, and care-seeking experiences for sexually transmitted infections: A qualitative study from the perspective of public clinic attendees in Rio de Janeiro, Brazil. BMC Public Health 2007; 7:18.
10. Lichtenstein B, Hook EWI, Sharma AK. Public tolerance, private pain: Stigma and sexually transmitted infections in the American Deep South. Cult Health Sex 2005; 7:43–57.
11. Arkell J, Osborn DP, Ivens D, et al. Factors associated with anxiety in patients attending a sexually transmitted infection clinic: Qualitative survey. Int J STD AIDS 2006; 17:299–303.
12. Meyer-Weitz A, Reddy P, Van den Borne HW, et al. Health care seeking behaviour of patients with sexually transmitted diseases: Determinants of delay behaviour. Patient Educ Couns 2000; 41:263–274.
13. Ajzen I, Fishbein M. Understanding Attitudes and Predicting Social Behavior. Englewood Cliffs, NJ: Prentice-Hall, Inc., 1980.
14. Day S, Ward H. Sex workers and the control of sexually transmitted disease. Genitourin Med 1997; 73:161–168.
15. Darroch J, Myers L, Cassell J. Sex differences in the experience of testing positive for genital chlamydia infection: A qualitative study with implications for public health and for a national screening programme. Sex Transm Infect 2003; 79:372–373.
16. Dixon-Woods M, Stokes T, Young B, et al. Choosing and using services for sexual health: A qualitative study of women’s views. Sex Transm Infect 2001; 77:335–339.
17. Lichtenstein B, Bachmann LH. Staff affirmations and client criticisms: Staff and client perceptions of quality of care at sexually transmitted disease clinics. Sex Transm Dis 2005; 32:281–285.
18. Genuis SJ, Genuis SK. Managing the sexually transmitted disease pandemic: A time for reevaluation. Am J Obstet Gynecol 2004; 191:1103–1112.
19. Newton DC, McCabe MP. A theoretical discussion of the impact of stigma on psychological adjustment to having a sexually transmissible infection. Sex Health 2005; 2:63–69.
20. The National Cancer Institute Cancer Screening Consortium for Underserved Women. Breast and cervical cancer screening among underserved women. Baseline survey results from six states. Arch Fam Med 1995; 4:617–624.
21. Margolis KL, Lurie N, McGovern PG, et al. Increasing breast and cervical cancer screening in low-income women. J Gen Intern Med 1998; 13:515–521.
22. Sirovich BE, Welch HG. The frequency of Pap smear screening in the United States. J Gen Intern Med 2004; 19:243–250.