On completion of the interview, a brief verbal survey was administered to gather information regarding demographics, self-reported HIV and HCV risk behaviors.
After the interview and survey, participants were given the opportunity to receive optional rapid HIV and/or HCV testing. Results were provided to study participants before they left the intake area. Individuals with positive test results were immediately referred to a jail health care provider and linkage to care counselor.
Transcripts were analyzed using thematic analysis to identify patterns across 30 interviews.25 We started with open coding of all transcripts to generate a codebook. Data were subsequently entered into a qualitative data management program (MaxQDA), reread, and coded using the codebook. We generated memos to describe the content of each code as well as the relationships between codes. The first author conducted the primary analysis, which was then refined and validated through discussions with J.M., J.C., and C.A. We report primary themes illustrated by exemplary quotes.
Thirty-eight individuals initially expressed interest. Seven individuals withdrew during the brief waiting period. Reasons not to participate included not wanting to be interviewed by a man (for one female participant), fatigue, and lack of interest. Individuals declining participation were informed that testing was available through standard jail protocols.
Table 3 summarizes participants' self-reported demographics, HIV and HCV risk factors, and previous testing experiences.
We first describe the constellation of factors that influenced participants' testing decisions. We then describe participants' preference for the opt-in vs. opt-out testing script and their reasoning.
HIV and HCV Knowledge
Most participants had a good understanding of HIV risk and disease progression. Participant #15 shared, “HIV can be transmitted sexually but not always. Lots of homosexuals died from it at the beginning but now, you only die when you have AIDS. They have medications to treat it and they are expensive!”
Some participants also shared their awareness of risk-reduction strategies including using condoms and not sharing needles.
Although participants' HIV knowledge was evident, HCV knowledge was generally low. Nearly a third of the participants had never heard of HCV. Misunderstanding of HCV risk was common. Participant #28 shared, “I know it is a deadly disease, Hepatitis C got lots of germs. If you bathe in your own bodily fluid, then it can give you Hepatitis C!” Most participants reported never having been tested for HCV. Many participants provided nonspecific reasons to test for HCV, such as “just wanting to know.” However, one participant (Participant #21) offered, “I am doing it (HCV testing) because you guys are offering it with the HIV test.”
Stigma and Shame
Some of the study participants raised concerns about stereotyping, prejudice, and discrimination related to disclosing their status and testing. Participant #16 shared, “(HIV) targets the gays and IV drug users. I do not associate with anyone who has it!” Participant #19 shared his perception of the stigmatization of HIV- and HCV-positive individuals within his social network: “My friends and family look down on this. If I get Hepatitis C, then I need to clean it up first. I can't tell my family right away. It is not a good thing to tell them.” Similarly, Participant #25 related, “You have to be careful around people, they may not treat you the same.” This comment implies shame related to possible HCV infection.
Previous Experiences With HIV and HCV Testing in the Community Setting and Associated Barriers
Previous reported testing is summarized in Table 3.
Many participants with a previous history of testing perceived their experiences negatively, particularly regarding HIV testing. They described logistical issues such as dislike of needles, long wait times for results, and difficulties navigating the complex health care system. Participant #29 stated, “The first test I did took a long time to get the results. Waiting was nerve wracking. When they told me your test is only 20 minutes, it is a whole lot more appealing.” Testing fatigue was also mentioned. Participant #25 explained, “I got tested several times and it became redundant so I stopped.”
For HCV, self-perception of low risk and lack of opportunity to test were brought up by participants as reasons for not having been tested in the past. Participant #13 stated, “I have never thought about it (HCV). There were no red flags. With Hepatitis C, you get these yellow spots and I don't have any.” Participant #24 stated, “I have never been tested before because I was never approached by anyone.”
Opinions Regarding HIV and HCV Testing on Jail Intake
In contrast to testing in the community, most study participants reflected positively on testing at jail intake. Participant #24 shared, “When you are outside, people think you are dirty. You don't need their help, but they don't want to anyway. It is better here than outside. You have all the opportunity to get clean.” This participant's positive response about jail-based testing illustrates that, for some individuals, testing at jail intake may be convenient and less stigmatizing than on the outside.
Nevertheless, participants also brought up barriers to testing in correctional settings, centering on access. Participant #29 stated, “Well, you will need to still fill out a medical card form and it is an extra step. Sometimes, they run out of forms and you feel shut out so I just don't bother with it anymore.”
Understanding of Testing Rights and Implicit Coercion
Most (28) participants demonstrated knowledge of their rights to decline health care in jail. These individuals stated that they technically had the same right to refuse testing that they had outside of the criminal justice system. Nevertheless, some participants felt coerced. Participant #4 stated, “I feel like I have to listen and cooperate. If I listen, then it is less stressful. If you have an attitude, then the officers will make it worse for you…I am afraid to say no…I can say no by telling them 'next time'.”
This participant shared a perception of feeling potential threat if he refused. Some participants also identified mandatory testing as a limit to their testing rights. Participant #15 stated, “I know I can refuse any sort of test…but if it is required by law like DNA swab and finger printing, then it is accepted.” Participant #11 added, “Some tests are voluntary in the street but mandatory here… I get it's a health hazard and they have to do it for everyone's health.”
Preferred Testing Procedure
Opt-in vs. Opt-out Testing
When presented with the 2 testing scripts (Table 1), most (19) favored opt-in, about a fourth (7) preferred opt-out, and the remainder (4) had no preference.
Most of the participants who expressed preference for the opt-in script chose it for its clarity and explicitness regarding their right to choose. These participants also liked the question-based format that is an essential aspect of opt-in testing. Participant #8 shared, “(Opt-in) was straight to the point…it tells us what is available and what are our choices and whether we want it or not…I like the part where you said would you like because it gave me options.”
Some participants who preferred the opt-in script also expressed a dislike for the message the opt-out script conveyed. Participant #25 stated, “Here, you put the person in the position of pressure like a defendant. It violates personal space and it is not a good idea.” Participant #22 explained, “Being told that you got to do something ain't cool. It is like being told to get up at 3:30 in the morning.”
The opt-out script was also described as unclear. Participant #29 explained, “Here, you have to work backward and it is confusing.”
The few participants who preferred the opt-out script seemed to recognize that certain tests are part of the norm in jail. Participant #28 added, “It is more inviting and I don't feel segregated,” suggesting that the opt-out script has the advantage of allowing an individual to accept testing without feeling singled out.
Of the 30 participants, all completed an HIV test and 26 completed a HCV test (4 previously tested positive for HCV). None of the participants tested positive for HIV. One participant tested positive for HCV and received his result and counseling, along with referral to a health care provider in jail and a linkage counselor on the next business day. Of note, this participant was released before his scheduled appointment, a typical occurrence in the jail setting. Although the participant was released with a referral to a health care provider, multiple subsequent attempts to contact the participant by the linkage to care counselor were unsuccessful.
Advancements in HIV and HCV have improved overall health outcomes for infected individuals. With early diagnosis and treatment, individuals with HIV can have a normal life expectancy.26,27 HCV treatment now allows patients to be cured with as few as 8 weeks.19 Testing remains the essential first step to linking individuals to care to benefit from these advancements. The opt-out method has become generally accepted as the gold standard because of its high uptake rates and the number of individuals identified.7,8,10 Furthermore, opt-out testing has been well received by medical and correctional staff.22 However, previous studies of testing preferences have only documented incarcerated individuals acceptability of testing in the context of testing route (ie, oral swabs over venipuncture), and of perceptions of and experiences of testing.14,21,23 Our pilot study is the first, to our knowledge, to attempt to understand their perceptions of opt-in and opt-out testing by describing the preferences along with needs of individuals specifically at jail intake.20 We further identified multiple influences on newly detained individual's decisions regarding whether to be tested for HIV and HCV at intake.
Our findings indicate that there are a number of complex factors at the individual, organizational, and societal levels that influence testing decisions. These findings have several implications for how testing is delivered in correctional settings. The first is related to the testing gap between HIV and HCV among our participants, consistent with the current trends highlighted in the HIV and HCV management cascades.2,9,16–18 Although such a gap may be a reflection of differences in testing efforts or by the cost of HCV management in a population with heavy HCV burden, our study suggests that individuals' lack of knowledge about HCV and specific risk behaviors may also contribute to the lag in HCV testing.6,16,28 These observations suggest that HCV education and risk behavior awareness are important ingredients to bridge the testing gap.
The second implication was suggested by Participant #21, who expressed that he had no knowledge of HCV and yet elected to test because it was offered along with HIV testing. His insight offers an additional solution to the current testing gap. Although integrating HIV into HCV testing has been demonstrated to improve HIV testing rates among injection drug users, our observation suggests a possible reciprocal relationship.29 The finding supports the integration of HIV and HCV testing among individuals entering jail and potentially other settings offering testing to populations at high risk for both infections.30
The third implication is that incarcerated individuals are not comfortable disclosing risk behavior, largely because of stigma.31,32 Allowing individuals to test, without having to disclose risk behaviors, may be a good strategy because it allows individuals to manage potentially stigmatizing attributes and their own identity while they are incarcerated.33 Although incarceration is stigmatizing, all detainees already share that identity. Disclosure of additional stigmatizing attributes, such as HIV and HCV risk behaviors, could further distinguish them from others within their group. These observations suggest that testing based on disclosure of risk may discourage screening. Some may perceive disclosure of risk behavior and even knowledge of HIV and HCV as putting them at risk for negative consequences, including discrimination and stereotyping.34,35 Such concerns remain well founded. Segregation by HIV status in correctional settings did not cease in the United States until 2014.36,37
The fourth implication is related to the informed consent process. Adequate informed consent requires both that the person understands the information (ie, informed) and that an individual is able to choose without undue influence (ie, voluntary consent).38 Both voluntariness and understanding are problematic in the setting of incarceration. Especially for individuals newly detained in jail, the “voluntariness” criteria may be hard to meet. Mental health, substance use, education, and language barriers may interfere with adequate understanding.15,39 However, the feedback from participants that our opt-in testing script was clear and succinct highlights its potential utility in conveying testing options. Although our opt-in script should be tested on a larger scale to verify how it influences the voluntary nature of testing, our results suggest that it has the potential to help improve the informed aspect of informed consent.
Furthermore, our participants' reservations about exercising their right to refuse testing because of fear of negative consequences raises the long-standing concern that a person in jail cannot be free enough from undue influence to give their voluntary consent. If the feared negative consequences are significant enough, they may comprise a form of coercion that undermines informed consent. This finding is not unique to our study.15,23 However, it calls for increased education efforts to inform individuals of their testing rights, careful construction of protocols to minimize circumstances that require individuals to actively decline testing (as required in opt-out testing), and the need to develop protocols with the input of the target population that will minimize the implicit coercion experienced by individuals in the context of an institutionalized power imbalance. Taking these precautionary steps could minimize the potential of testing individuals without adequate informed consent or against their wishes as was seen in the North Carolina prison system survey.14
The fifth implication is related to the potential for individuals to mistake voluntary services, such as HIV and HCV testing, as mandatory, particularly in the case of opt-out procedures. The participants who mentioned that mandatory procedures, such as giving a DNA swab and finger printing, were limitations on their rights suggest that some individuals may not be aware that they do have the right to decline HIV and HCV testing. This may be problematic particularly when optional health-screening services conducted at intake are offered alongside mandatory procedures such as finger printing. Although jail intake is an ideal location to offer testing because of its accessibility to all individuals including those with short length of stays, clear communication that HIV and HCV testing is voluntary must be assured.10,24,40,41
Finally, although our pilot study only tested a small number of individuals, we nevertheless experienced the challenge of linking the one participant who was positive for HCV to care, consistent with reported problems linking incarcerated people to ongoing care after release.2 However, because of the availability of rapid testing tools, the newly positive participant nevertheless received his result along with standard counseling and referrals, the first step in the treatment cascade and interruption of infection.
Several limitations exist in our pilot study. First, our data are self-reports, not observations of actual behavior. We did not test whether or not people's actual choices to get tested are influenced by an opt-in or opt-out approach or assess whether the nuances of opt-in and opt-out can be detected during the actual intake procedure but rather elicited their opinions regarding the testing scripts in a research setting. Thus future work should determine how much distinct scripts influence actual testing decisions when they are integrated with the jail intake process. Furthermore, our research explored 2 predeveloped scripts. We did not assess perceptions of a “buffered” opt-out script (eg, adding “is it ok with you?”) that would allow individuals to decline with less coercion. A second limitation of our study is the restriction on audio recording device usage during interviews, thus preventing recording of verbatim quotes. Third, our interviews were brief and could only be conducted in a semiprivate space. Although conversations were kept confidential and out of earshot of correctional staff, participants were visually observed during the entire study procedure, which likely influenced their disclosure of information. Fourth, because HCV testing has not traditionally been as formal as HIV testing, some participants may have been previously tested without their knowledge; a true testing gap could be narrower than the self-reported one. Finally, our sample includes few women. Hence, the themes identified in our qualitative interviews may only be representative of the participants in our study.
CONCLUSION AND RECOMMENDATIONS
Implementing HIV and HCV testing is a complex process requiring consideration of public health goals, available resources, regulations, and ethics. Regardless of the health care settings, individuals being tested retain the right to an informed and voluntary consent process.13 Our findings call for a renewed and enhanced consideration of HIV and HCV testing procedures, so that individual rights are not outweighed by public health priorities. Such a recalibration can improve the likelihood that testing and treatment will benefit both individual and the public's health without compromise to either.
The authors thank our study participants for their time and dedication in helping to improve testing in jails. The authors are grateful to OraSure Technologies and Alere Inc. for donating the rapid HIV and HCV tests used in the study.
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Keywords:Copyright © 2018 Wolters Kluwer Health, Inc. All rights reserved.
HIV; hepatitis C; testing; health care rights; informed consent; jail or correctional setting