Abstract
Background:
Chlamydia is a leading cause of pelvic inflammatory disease (PID), which can lead to ectopic pregnancy, chronic pelvic pain, and infertility. Annual Chlamydia screening is recommended for all sexually active women aged ≤25 years, yet only about 40% of eligible women are screened each year in the United States. To promote Chlamydia screening for the prevention of infertility, the Centers for Disease Control and Prevention (CDC) is developing direct-to-consumer efforts for sexually active young women and key influencers. To inform this effort, CDC sought to explore girls'/women's understandings of sexually transmitted disease (STD) and Chlamydia testing and STD communications and information sources.
Methods:
Two waves of one-on-one interviews (n = 125) were conducted in 10 metropolitan areas with African American, Caucasian, and Latina females, aged 15–25 years.
Results:
Most participants were not knowledgeable about Chlamydia or its screening; their discussions about it suggested low levels of perceived susceptibility or relevance to Chlamydia and screening. STDs are rarely discussed in home or social settings or with partners or close friends; yet young women may turn to interpersonal sources if concerned about an STD. Providers are the primary and preferred source of STD information for girls and women, although missed opportunities for engaging young women in STD/sexual health discussions were identified in clinical and other settings.
Conclusions:
Providers, family members, friends, and partners may serve as important intermediaries for reaching young women and encouraging STD/Chlamydia screening. Resources are identified that could be leveraged and/or developed to facilitate such interactions.
Introduction
C
The U.S. Centers for Disease Control and Prevention (CDC) recommends annual screening of all sexually active women < age 26. 4 Chlamydia screening programs for women have demonstrated success in reducing the incidence of PID by as much as 60% in certain settings, yet only about 40% of eligible young women are screened annually in commercial care settings, with higher rates in Medicaid settings and among older segments of these women (21–24 year-olds compared to 16–20 year-olds). Systems-level and provider-level barriers must be addressed to improve these rates, 7 and challenges have also been identified at the consumer level. 8,9
CDC is undertaking a number of efforts to promote Chlamydia screening in the United States, one of which involves direct-to-consumer efforts for 15–25 year-old sexually active women and key influencers. To inform this effort, CDC conducted a review of the literature and gap analysis in 2007. The review uncovered a clear need to destigmatize Chlamydia screening and raise awareness among at-risk populations, yet there was a dearth of information about the potential role of key influencers in facilitating screening. To fill this gap in the literature and identify potential points of influence, we conducted a qualitative study to explore the target audience's communication with providers, parents, peers, and partners. Guiding research questions were: What is the scope and frequency of women's conversations about sexually transmitted disease (STD) testing with providers, family, friends, and partners? To whom would young women go if they were concerned about an STD? How would they react if a friend or partner wanted to seek testing? What could facilitate discussions about STD testing? To contextualize these findings, we first sought to explore young women's knowledge, attitudes, and information sources about STDs and Chlamydia testing.
Materials and Methods
Two waves of individual ethnographic interviews were conducted, in which participant responses guided the conversations based on a loosely structured guide. (Ethnographic research is a qualitative, descriptive research method used to gather empirical data on human culture and behavior.) This approach enabled detailed accounts/discussion from each participant in a private, conversational format. Wave I was conducted by phone to allow participant anonymity and explore the topics of Chlamydia and STD testing knowledge, beliefs, perceived benefits/barriers, information sources, and communication. Hypothetical scenarios [e.g., What would you say if a (partner/close friend) wanted to seek STD testing?] were used to gain additional insight into interpersonal communications and social norms. Based on these findings, topics were narrowed during wave II, which used in-person interviews to delve deeper into Chlamydia knowledge and personal scenarios (e.g., What would you do if you were personally concerned that you might have an STD?) using hands-on exercises. Card sorting exercises, in which participants were given STD-labeled cards to organize, were used to help participants classify and explain their knowledge of Chlamydia and STD testing. Projection exercises, in which visual images were used to elicit participant feedback on hypothetical interactions, were employed to explore sensitive topics without asking personal information. Visual images depicted familiar relationships [e.g., a young woman with her friend(s), mother, boyfriend, or provider], and settings [e.g., school, party, library]. Given the ethnographic nature of this research, not all questions were asked of all participants.
Interview guides were reviewed by CDC experts and pretested with three people. Interviews were conducted by experienced female interviewers, matched to participant race/ethnicity. Interviewers participated in a 6-hour training session before this study to familiarize themselves with the project, research guide, and ethnographic process; to acknowledge and discuss preexisting personal beliefs and assumptions; and to conduct mock interviews.
A mixture of African American, Caucasian, and Latina females, both in school and working, were recruited through professional market research firms' existing panels and outreach (community message boards, newspapers, Internet, and schools). We used nonprobability sampling and oversampled 15–17-year-old segments. Eligible females had to be fluent in English and report either having had sexual intercourse or having sought reproductive health services (e.g., birth control/pelvic examination/Pap test) in the past. We sought a mixture of young women across socioeconomic levels and targeted races/ethnicities. Socioeconomic levels were defined by household income (half above and half below median income for each location) and occupation/education levels. For wave I, we also sought a mix of geographic areas (Northeast, Southeast, Midwest, Southwest, and Northwest). Verbal consent was obtained from adult participants (18–25 years), and parental consent and minor assent were obtained for minors (15–17 years) during the screening process.
Each interview lasted about 60 minutes and was recorded and transcribed. Three trained coders independently analyzed the data using NVivo2 software. A general list of codes/themes was developed based on the literature review and research questions; it was further refined based on a preliminary review of one common transcript by all coders. Coding began once 90% agreement was reached among coders. A team of six researchers analyzed the data to identify themes, with a minimum of two people analyzing each research question. Analysis was finalized once consensus was reached among data analysts.
This research was approved by CDC's Human Subjects Review Board (protocol 5257) and conducted through a contract with the Academy for Educational Development (AED).
Results
For wave I, a total of 80 interviews were conducted in fall 2007/winter 2008 in 10 geographically dispersed metropolitan areas of the United States. An additional 45 in-person interviews were conducted in May 2008 (wave II) in Dallas, Texas, and Chicago, Illinois. Participant demographics are presented in Table 1 by age and race/ethnicity. A total of 26 (21%) women mentioned having a child of their own, although participants were not specifically asked. To protect the privacy of human subjects, participants were not asked about their personal experience with STD testing; nonetheless, 45 (36%) women, frequently adult participants, spontaneously reported that they or a friend had had an STD test in the past. Unless otherwise noted, findings from waves I and II are reported together. Where possible and appropriate, results are reported quantitatively; however, the ethnographic nature of these discussions did not often allow for such reports.
Wave I interviews were distributed across the following 10 metropolitan areas (approximately 8 per location): Atlanta, GA; Akron, OH; Corpus Christi, TX; Detroit, MI; Houston, TX; Massapequa, NY; Orlando, FL; Philadelphia, PA; Portland, OR; San Francisco, CA.
Wave II interviews were held in Chicago, IL (n = 20) and Dallas, TX (n = 25).
Knowledge, attitudes, beliefs, and information sources
Interviews explored participants' Chlamydia knowledge and beliefs about STD testing and STD information sources. Results are summarized below; representative quotes are shown in Table 2.
Participant reported having had a personal experience (self or friend) with STDs in the past.
Chlamydia knowledge
Less than one fifth of respondents (23 of 125) were able to cite information about Chlamydia beyond that it was a curable STD. Informed respondents were more likely to have reported having a child of their own or having had a personal experience (self or friend) with STDs in the past. The majority of young women were unaware of the asymptomatic nature of Chlamydia infection and its potential to cause infertility, did not know how common it was, and did not think others like them knew much about it either. Some assumed Chlamydia infection was uncommon because they had not heard much about it.
Beliefs about Chlamydia and STD testing
Twenty percent (25 of 125) of participants believed that one test—in many cases, the Pap test—screened for all STDs. None of the interviewees were aware of a urine test for Chlamydia. The vast majority of respondents were also unaware of an annual recommendation for Chlamydia screening, although some respondents guessed that it should be conducted as frequently as monthly. No respondent stated that screening was needed less frequently than once a year. Respondents in wave I were asked who needs testing for STDs; two responses emerged most frequently, with over half of respondents reporting that either everyone who is sexually active or people with multiple partners (“who are promiscuous”) should be tested. Other common responses included people who do not use protection and people in their teens to early 20s.
STD information sources
Participants in wave I mentioned passively receiving STD information during a health visit, through conversations with their provider or pamphlets. High school was also noted as a source, although about a third of those respondents acknowledged that these classes did not provide helpful information or were not taken seriously. Few respondents mentioned their friends (11%) or the media (15%) as sources of sex and STD information. Among media sources, magazines (33%), TV (58%), and the Internet (42%) were the most commonly cited. Latinas mentioned their friends as information sources more frequently than other racial/ethnic groups; they also reported more interest in using media sources, such as magazines, to receive sex and STD information. In contrast, Caucasians more frequently mentioned family members as STD information sources.
STD communication
Wave I explored young women's actual STD testing communication practices with key influencers. Wave II probed further (when relevant) into the nature of these interactions through hypothetical scenarios. Representative quotes are presented in Table 3.
Participant reported having had a personal experience (self or friend) with STDs in the past.
Communication with healthcare providers
The majority (72%) of respondents asked in wave I reported speaking with their healthcare provider about STDs in at least one previous visit. Male gender was the most frequently cited barrier to provider discussions. Other barriers included feeling rushed during office visits, mothers being present, and fear that the provider would tell her parents. A few young women said they were given STD pamphlets instead of having a conversation during their visit, and others reported never having discussed the topic with a provider. Latina and Caucasian respondents were more likely to report never having talked with a provider about STDs compared with African Americans. Several women (7 of 80) reported being offered STD testing by their provider and declining because they did not feel they needed it.
Communication with family members
Less than a third of participants in wave I reported discussing sex or STDs with parents (17 of 80) or other family members, such as sisters (5 of 80). Of those referring to discussions with parents, nearly all (94%) mentioned speaking with their mothers. Some participants in wave II, most notably Latinas in Dallas, mentioned that they were unlikely to discuss sex/STDs with their family because their religion prohibits sex before marriage, and raising the topic would imply that they were having sex.
Communication with friends
A small portion of young women (9%) mentioned that they would not want to talk about STDs, even with their closest friends (3%). Overall, however, participants said they would be comfortable talking about STDs with their friends, although most said the topic was rarely discussed. Whereas sex-related conversations were common among friends, these conversations tended to focus on relationship issues or sexual activity in general. STDs were described as “something that we'd rather not talk about, unless we're having problems.” If STDs came up in conversation, it would likely take place among closest friends or in the context of gossip about someone else.
Communication with sex partners
STDs did not emerge as a topic typically discussed between partners. Among wave I participants who had reported being tested for STDs in the past (23 of 80), about a quarter (6 of 23) said they had spoken with their partners about it beforehand. Many of these young women also reported that the end result was ultimately positive, with their partners supporting them and seeking testing with them.
Hypothetical scenarios
If personally concerned about an STD
Respondents in wave I were asked where or to whom they would turn if they had a question about sex or STDs. Most indicated they would consult their doctor first. Overall, a majority of interviewees reported they would feel comfortable discussing sex/STDs with their providers. Some respondents also mentioned that they would consult family members (15%) or the Internet (14%). Friends or teachers were not generally mentioned as knowledgeable or approachable sources. Compared with Caucasian and African American respondents, Latinas were less likely to feel comfortable talking with providers and more likely to say they would consult the Internet over family. These findings were supported by wave II, when participants were asked what they would do if personally concerned about an STD. The majority (64%) reported they would consult a doctor; others (22%) said they would consult a friend or family member before seeking testing. Younger participants were more likely to report that they would talk to someone before seeking testing; often, these participants also mentioned having a close relationship with that relative or friend.
When probed during wave I, almost half of participants (36 of 80), with the exception of younger Latinas, said they would likely tell a partner before seeking testing, although it might be uncomfortable. Most believed their sex partner would react positively, seeking testing with them. Those who were unsure if they would discuss testing with their partner explained that it would depend on their partner/relationship. Respondents were less likely to tell a partner if they were not in a long-term relationship. Expected partner reactions of suspicion, accusation, or insult (from inadvertently implying partner distrust) were also identified as barriers to such discussions. Two participants said they would not care about their partner's reaction.
Across both waves, participants said they would be concerned about peers or parents finding out they got tested for STDs because of stigmatization and the desire for parents not to know they are sexually active, respectively. When probed, however, none said their partners or close friends would disapprove of them getting tested.
If a friend got tested
Wave I interviewees were asked how they would respond if a friend told her she was getting tested for STDs. Overall, participants, particularly those who were tested for STDs in the past, said they would be supportive and proud of their friend's decision, which demonstrated maturity and responsibility. However, reactions of concern or surprise were not uncommon. These participants tended to be younger and to suggest that testing would imply that their friend had been irresponsible.
Having been tested myself, I'd probably say, “Good, great.” I mean, thank God you are being responsible because we all have our moments where we are either weak or just stupid, and we think to ourselves later on, “Well gosh, I hope I was protected or I trusted that person and now I don't know if I can.”—Latina, 18–25 years
Participants were also asked how they would respond to a friend's test results, if confided in. Respondents generally said they would be supportive of her whether she tested positive or negative. Many also said they would advise her to take precautions in the future. A few (4%, 3 of 80) said they would think negatively about their friend if she received a positive result, and responses sometimes suggested judgment and disappointment:
I would still be friends with her. I'd be disappointed, but stuff happens. She should have been more careful, but I wouldn't let it ruin our friendship if we were good friends. —Latina, 18–25 years
If a sex partner wanted to get tested
Overall, respondents in wave I said they would be supportive of their partner's decision if she or he wanted to be tested for STDs. Almost half (46%) said they would go with their partner for support or testing. Some expressed questioning or suspicious reactions, however, saying they would want to know why their partner wanted to get tested and wonder if she or he had been unfaithful, although they would ultimately support the partner.
Probably my initial thought would be, “Why? Are you sleeping around or something? Is there something I should know about?” Then I'd probably think if they're getting tested, I should probably get tested, too, just in case.—Caucasian, 15–17 years
I would react in a good way because he's shown that he cares and wants to know.—African American, 15–17 years
Potential role of communication in facilitating STD testing behaviors
Participants were asked to provide suggestions for increasing communication about STDs and STD testing and for promoting testing behavior. Table 4 presents a summary of identified facilitators. Suggestions for making it easier to talk with a healthcare provider included the following: if the provider raised the topic; having a female provider; having a trusted, established relationship with the provider; having a nice, understanding provider with a positive demeanor; and having private (alone) time with the provider that is not rushed, in which the patient could be assured of confidentiality. Finally, respondents said that if Chlamydia testing were routine, they would feel less stigmatized or insulted by a doctor's recommendation to get screened.
Participant reported having had a personal experience (self or friend) with STDs in the past.
Participant reported having a child of her own.
Some participants were asked what, if anything, could facilitate a conversation about STD testing with their partner. Responses ranged from those who did not feel they needed any help talking to their partner to those who did not feel anything could help start the conversation short of him bringing it up. Among the specific suggestions offered were videos on YouTube, television commercials, and popular television programming to model the behavior and offer tips for approaching the discussion.
Increased STD-related communication and information in the community and media were noted as factors that would make both testing and talking about it with friends/family easier and more acceptable. Younger participants also suggested that communication among family and friends would facilitate testing.
Discussion
The purpose of this research was to explore sexually active young women's understanding of Chlamydia, STD communication, and information sources to identify potential points of influence for promoting routine Chlamydia screening. We found that most young women are not knowledgeable about Chlamydia, and many do not distinguish between screening for Chlamydia and screening for other, less prevalent STDs. These findings are representative of the generally low levels of chlamydia knowledge in the United States and abroad, 10 –13 underscoring the importance of raising basic awareness in order to promote screening uptake and acceptability. 8
Young women's discussions suggested they have low levels of perceived susceptibility to STDs. Participants commonly stated that STD testing is for people with multiple partners or who are promiscuous. Although most participants guessed that people should be screened for Chlamydia at least annually, they did not seem to perceive this recommendation as relevant to themselves. Only about half mentioned ever being tested for STDs or knowing a friend who had. This is disconcerting, given the multiplicity and typically short duration of many young women's sexual partnerships and the inconsistency of condom use within them. 14,15 Indeed, other studies have suggested that public perceptions of STD risk/vulnerability do not reflect their actual risk/reported behavior. 8,10,16
Importantly, these findings also indicate that stigma and misunderstandings about STD testing continue to prevail. 17 Although most respondents claimed they would support their friend or partner if she or he were to seek testing, their reactions sometimes revealed judgment and implied that testing was associated with irresponsible or unfaithful behavior rather than routine, caring, or responsible behavior. Previous findings also suggest that screening is not perceived as a routine health practice 18 and may carry moral connotations. 8 This highlights the need to normalize and routinize Chlamydia screening to increase public acceptability. 19,20
Missed opportunities for reaching young women with meaningful STD information were uncovered in clinical and school settings, as well as in their home and social environments. As many as 28% of participants asked had never discussed STDs with a healthcare provider, even though providers were identified as both a primary and preferred source of STD information. Although many reported learning about STDs in school, few recalled learning substantive information. Despite the pervasiveness of sex in the media, 21 young women continue to receive little STD or sexual health information on television or in magazines. Whereas sex and sex-related gossip are common topics of conversation among peers, STDs are not. STDs are rarely discussed with partners or among close friends. In light of young women's associations of STD testing with shame, embarrassment, and fear of peer stigma or gossip (identified here and elsewhere), 8,22 this is perhaps not surprising.
Although young women may feel more comfortable with female providers, all clinicians can create a comfortable environment for their patients. Clinical practice tools and resources are available to help providers engage in sensitive, empathic, and nonjudgmental discussions with adolescent and young adult patients 23 and to ensure that parents allow them the privacy to have such discussions with minors. 24 An effective campaign will need to engage providers as key intermediaries, 8 expanding the repertoire and marketing of support resources to ensure that Chlamydia screening takes place once young women seek routine health services.
Mothers, sisters, close friends, and partners could also serve as important information sources and promoters of Chlamydia screening if they are provided with appropriate tools to do so. This study suggests that some girls may seek the support of mothers or sisters if they are concerned about an STD or before seeking testing. This may be particularly true for younger girls with close relationships with their mothers. 25,26 Importantly, many of the girls who reported having sought testing in the past also reported having talked about it first with their partner, if they had one at the time. Several factors may influence whether a young woman decides to have this discussion with her partner, such as relationship length and level of commitment, self-confidence, and expected partner reactions. Similar factors have been identified in disclosure studies with STD-infected persons 27,28 and should be considered if sex partners are targeted as intermediaries for a campaign. Young women may be encouraged to know that sex partners tend to react positively to their girlfriend's desire to get tested, often supporting them by seeking testing too. Modeling these discussions and offering tips for starting conversations may help some young women. Verbal, written, or audiovisual materials may also help promote such discussions.
This study suggests that certain segments of the population may be less easily reached through interpersonal intermediaries, such as family, providers, or partners. Because of cultural and religious taboos, Latinas may be less likely to broach a subject, such as sex/STDs. 29 This may also be true for young women of other races/ethnicities 30 and those who are more religious or hold more conservative sexual attitudes. 31 Anonymous, private channels (e.g., Internet and magazines) or friends may be more effective in reaching these women. In fact, the Internet may serve as an important source for young women of all demographic segments. Given the Internet's prominence in the lives of adolescents and young women today, 32 no direct-to-consumer effort can afford to overlook it. Resources identified by participants in this study can be developed and made available online to encourage STD communication between women and their providers, family, friends, and partners.
Limitations
This study did not aim to involve a statistically representative sample, and the results cannot be generalized to all young women. Given that the young women self-selected to participate in a study about STD testing, they may reflect a group that is more knowledgeable about or willing to discuss sexual health and STDs than the general population. Finally, young women's STD-related awareness, attitudes, and communications may vary based on factors that were not specifically assessed here, such as history of STD (self/other), STD testing, and pregnancy. These may be important factors for audience segmentation. Despite these limitations, this research offers useful directions for the development of a direct-to-consumer effort for young women and their influencers.
Conclusions
Study findings highlight the need for a screening campaign to not only raise awareness of routine Chlamydia screening and destigmatize it but also to make it personally relevant to sexually active young women in the general population. Messages should reach audiences both when they are and are not actively seeking STD information, through mass media and interpersonal channels. Providers, family members, peers, and partners may serve as important intermediaries for promoting Chlamydia screening among young women. Materials and resources can be developed to facilitate these conversations. Increasing the visibility and profile of STDs in the community and in the popular media may also help facilitate these discussions and normalize testing. Finally, given the stigma and cultural values that may prevent some young women with STD concerns from turning to interpersonal channels; it will be important to make Chlamydia information, as well as a choice of easy and confidential testing options, accessible through private, anonymous channels.
Footnotes
Acknowledgments
We thank Jim Bender, Elyse Levine, and Derek Inokuchi for their strategic guidance and research analysis. We are grateful to them for their contributions.
Disclosure Statement
The authors have no conflicts of interest to report.
