AIDS PATIENT CARE and STDs Volume 29, Number 1, 2015 ª Mary Ann Liebert, Inc. DOI: 10.1089/apc.2014.0210

Attitudes of Serodiscordant Couples Towards Antiretroviral-Based HIV Prevention Strategies in Kenya: A Qualitative Study Nikola Fowler, BMedSc,1 Paul Arkell, MBChB,2 Michael Abouyannis, MBChB,3 Catherine James,1 and Lesley Roberts, PhD 4

Abstract

This qualitative study aims to gain in-depth information about the attitudes of HIV-serodiscordant couples towards two new methods of HIV prevention; Pre-Exposure Prophylaxis and Treatment as Prevention, both of which have been recently recommended by the World Health Organisation. Semi-structured interviews were conducted with 38 individuals in a serodiscordant relationship in Western Kenya. Topic guides were used to elicit information on perceived benefits, concerns, and preferences towards Treatment as Prevention and PreExposure Prophylaxis. Data evaluation and thematic generation were developed using framework analysis. Results suggest that the majority of participants, irrespective of gender and HIV status, found Treatment as Prevention the more acceptable strategy. Key factors influencing this decision were HIV-negative participants’ limited motivation to take prophylactic antiretrovirals and the likely health improvements Treatment as Prevention offers HIV-positive partners. However, issues were raised concerning the likelihood of low concurrent condom use and poor medication adherence when using these preventative approaches. It was concluded that the adoption of Treatment as Prevention as a method of HIV control in Kenya is likely to be more readily accepted by serodiscordant couples than Pre-exposure Prophylaxis. However, future implementation of either strategy would require measures to address the possibility of risk compensation and poor adherence.

tional survey describing the attitudes of SDCs towards PrEP.7 One hundred and twenty-seven of the 286 couples involved in the study were from Kenya, with approximately 60% willing to initiate the prevention method. The second study, nested in the PartnersPreP clinical trial in Kenya, examined the preferences and concerns of 181 SDCs towards PrEP and TasP.8 Questionnaires revealed that the HIV-positive participants preferred TasP, with 63.7% willing to initiate ART early, whereas their HIV-negative partners reported a preference for PrEP, 90% of whom were prepared to use the strategy. Although both studies have provided useful information about the likelihood of acceptance, more in-depth information is required to understand the cultural, social, and individual factors, which may determine SDCs attitudes towards these HIV prevention methods. In addition to this, studies involving couples who have not taken part in a PrEP clinical trial, and thus are without prior experience of the strategy, may produce results that are more representative of the attitudes of the general population.

Introduction

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n sub-Saharan Africa more than half of all new HIV infections occur in stable HIV-serodiscordant couples (SDCs).1 The World Health Organisation has recommended two novel approaches to HIV prevention in this population, both of which have become the focus of HIV policy debate.2–4 Treatment as Prevention (TasP), where antiretroviral therapy (ART) is initiated irrespective of CD4 count to reduce the transmission of the disease, and Pre-exposure Prophylaxis (PrEP), where HIV-negative individuals commence ART to reduce HIV acquisition, have both been shown in breakthrough clinical trials to substantially reduce HIV transmission in SDCs.5,6 Research to identify whether such ARV-based prevention strategies are acceptable to their target population is needed, to successfully predict treatment efficacy and drug resistance, as well as to inform policy decision-making. To date, two quantitative studies have addressed this, including a multina1

University of Birmingham, Medical School, Birmingham, United Kingdom. St. George’s Hospital, London, United Kingdom. Royal Liverpool University Hospital, Liverpool, United Kingdom. 4 University of Warwick, Warwick Medical School, Coventry, United Kingdom. 2 3

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To complement this previous quantitative work, this article uses qualitative methodology to explore the attitudes and preferences of PrEP-naı¨ve SDCs towards the use of TasP and PrEP as HIV prevention strategies in Kenya. Findings from the study may offer guidance for any future implementation of ARV-based prevention methods in the country.

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The lead researcher (N.F.) conducted all interviews, either in English or in the local language (Luo or Kiswahili), with the assistance of a Kenyan interpreter. All interviews were audiotape-recorded with participant permission, and reimbursement for travel expenses was provided. Data analysis

Methods Study design

An exploratory, qualitative study was conducted from January to March 2013. Data were collected using face-toface semi-structured interviews with individuals currently in a HIV-serodiscordant relationship. Study setting and participants

For the purpose of the study, partners were considered to be any sexual partner with whom the original participant considered himself or herself to be engaged in a permanent and committed relationship. HIV-positive participants and their HIV-negative partners were recruited from four HIV clinics in the Muhoroni Constituency of Nyando District, Kenya, selected according to accessibility and willingness to participate. Key clinical workers at each HIV clinic identified SDCs registered with them at the time of the study. SDCs were then purposively selected to obtain a mix of gender and both ART-naı¨ve and experienced individuals; a process that was ongoing until data saturation was reached. Hospital staff approached selected patients with a brief summary of the research during routine appointments or via the telephone. Participants were able to enroll individually, but both partners of a couple were recruited when possible. Following selection, prospective participants were invited to meet the researcher for a more detailed study description, following which written informed consent was obtained and interviews commenced. When both partners of a SDC were taking part, they were interviewed separately to enhance disclosure and allow confidentiality to be maintained. The study was reviewed and approved by the University of Birmingham BMedSc Population Sciences and Humanities Internal Ethics Review Committee, United Kingdom, and the Chief of Nyando District, Kenya. Data collection

With the aid of diagrams (Fig. 1), participants were fully informed about the attributes of TasP and PrEP, including the results of both the HPTN 052 trial5 and the PartnersPrEP study.6 PrEP was described to participants as a daily oral mono or combination therapy to be taken by HIV-negative partners up until their HIV-positive partner is eligible for ART initiation, according to current HIV guidelines from the Kenyan Ministry of Medical Services.9 TasP was defined as a system where HIV-positive partners begin life-long ART, irrespective of CD4 or WHO stage, once pre-counselling has been completed. Topic guides (see Appendix 1 and 2), developed following a review of the literature, were then used to explore participants’ attitudes towards TasP and PrEP, and whether they had a preference for either method.

Interview recordings were reviewed and transcribed by the lead researcher. Lengthy recordings of dialogue in a language other than English were independently translated for a second time to improve validity. Using framework analysis,10 data familiarization was achieved through the development of written case narratives for each transcript. An initial categorizing system was developed based on review of narratives, study objectives, and interview guides, and from this all transcripts were coded using NVivo (Version 8.0; QSR international, Doncaster, Australia). Overarching categories were used to construct schematic maps and charts to reveal themes and allow inductive interpretation. Categorization and thematic generation was developed by N.F. and independently confirmed by C.J. Results Participant characteristics

A total of 38 individuals were interviewed (Table 1), of which 34 were enrolled as a couple alongside their partner. The remaining four participants, all of whom were HIVpositive females, were recruited and interviewed opportunistically at a time when their partner was not present. Of those involved in the study, 13 HIV-positive and eight HIVnegative participants were women. Seventeen of the 21 HIVpositive partners were already receiving ART, based on current Kenyan ART national guidelines.9 All participants interviewed were heterosexual black Kenyans, the majority of whom (n = 26) were members of the Luo tribe. Couples interviewed had been partners for a median of 8 years (interquartile range 5–13), and all described themselves as married. However, these marriages may or may not have been formalized in a traditional or religious ceremony and/or may have involved arrangements between families. During data analysis, three overarching categories were formed to aid interpretation of the findings, from which themes were generated (Fig. 2): (1) Attitudes towards Treatment as Prevention; (2) Attitudes towards Pre-Exposure Prophylaxis; (3) Crosscutting attitudes towards ARV-based prevention. Attitudes towards Treatment as Prevention (TasP) Perceived benefits. All participants involved in the study found TasP to be an acceptable prevention method, the majority favoring it over PrEP. Most interviewees highlighted the likely health improvements of HIV-positive partners beginning an early course of treatment as an important benefit of TasP, with a small number of individuals suggesting this as their main motivation for wanting TasP to be introduced in Kenya. ‘‘When you are HIV-positive and you are put on drugs straight away it is helpful because when your CD4 cells go down you become very weak so then it is not easy for you to pick up, so this is good because it builds up the immunity system.’’ (M, 50, HIV - ve)

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FIG. 1. Diagrams used to inform participants about the prevention methods.

Approximately 23% of the HIV-positive female interviewees reported that their desire to have a child often competed with their fear of transmitting HIV to their baby. For this reason, they saw TasP as a convenient method for preventing mother-to-child transmission in those who are not yet eligible for ART. ‘‘When one is [HIV] positive you can give birth as much as possible.because if you take ARVs I think the risk of infecting the baby is low, so I think this method is quite fine.’’(F, 36, HIV + ve)

Perceived concerns. Some HIV-positive interviewees naı¨ve to ART were concerned about potential side-effects of TasP and the burden of taking medication every day. Despite this, the majority of ART-naı¨ve and -experienced participants indicated that their concerns were significantly outweighed by the benefits gained from initiating ART early, and that if there were side-effects they would disappear over time. ‘‘I do not fear anything, the only stress is about taking the drugs daily.’’ (F, 26, HIV + ve)

‘‘It is a must to protect my husband, I will just have to take it, the pain [from the side-effects] will not prolong.’’ (F, 50, HIV + ve)

A small number of HIV-positive participants suggested that some individuals infected with the disease might not be ready to initiate antiretroviral therapy immediately after diagnosis if they have not accepted their HIV status. ‘‘You know taking ARVs is not easy, it is something that totals your mind, first of all you need to accept so you have to go through all those counselling, somebody has to accept first’’ (F, 35, HIV + ve)

If barriers to compliance, such as a patient’s lack of acceptance of their HIV status, have not been fully addressed, poor adherence may become an issue. An HIV-negative interviewee highlighted that this inability to adhere correctly may result in treatment failure. ‘‘I don’t feel very comfortable with it because as we know here there’s really no third line [ARVs] so it depends on somebody’s adherence, so if somebody messes around and

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Table 1. Participant Characteristics Couples with HIV-negative men HIV-negative Men Number of participants Currently on ART Duration on ART, yrs (median, IQR) Age, yrs (median, IQR) Years since HIV diagnosis (median, IQR) Partnership duration, yrs (median, IQR) Children with study partner (median, IQR)

Couples with HIV-negative women

HIV-positive Women

9 N/A N/A 4 50 (33–55) 31 N/A 6 7 (5–13) 2 (1–4)

13 10 (0.5–5) (29–37) (3.5–7.5)

HIV-negative Women

HIV-positive Men

8 N/A N/A 32 (26–38) N/A

8 7 3 (0.5–4) 40 (35–55) 3 (1–4) 8 (5–12) 3 (2–6)

IQR, Interquartile range; N/A, not applicable. they go into second line, and we know that anyone who is on second line may have a problem.’’ (M, 50, HIV - ve)

Attitudes towards pre-exposure prophylaxis (PrEP) Perceived benefits. Despite over half of the participants

reporting PrEP to be an acceptable prevention method, very few perceived any benefits specific to this strategy. Only one HIV-negative man indicated that he preferred PrEP to TasP, the main reason being that it would allow him to have internal motivation over his own health, guaranteeing sufficient medication adherence. ‘‘I know I will keep the time of taking the drugs without forgetting because that will protect me then, because the wife is already infected.’’ (M, 65, HIV - ve)

Other interviewees reported that they would accept PrEP if it was the only ARV-based prevention method available or if they felt pressure from their doctor to agree to the strategy.

‘‘If the government impose that I should be doing it but it will be hard for me but I will just do it because of pressure from the doctors.’’ (F, 22, HIV - ve)

Perceived concerns. Nearly every participant expressed at least one concern about the use of PrEP, with almost half deeming the prevention method unacceptable. A significant concern raised by a large number of interviewees of mixed gender and HIV status, was the perception that antiretroviral drugs should not be taken by anyone who is HIV-negative, despite understanding that they were for prophylactic purposes only. ‘‘Since I am not ill I shouldn’t be taking the drugs, right, she is ill she should be taking the drugs.’’ (M, 50, HIV - ve)

Many male and female HIV-negative interviewees feared ARV side-effects or disliked taking medication in general. HIV-positive partners, on the other hand, didn’t want their spouses to take the medication if they were having difficulties

FIG. 2.

Summary of categories, themes, and subthemes.

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or concerns, because of a sense of guilt for being the cause of their partner’s suffering. ‘‘I’m still negative, I’ll be fearing to take ARVs, because we don’t know the changes which will come when taking ARVs in my body’’ (F, 33, HIV - ve) ‘‘As far as I am concerned, the positive person is the one to take the drugs and if these drugs have side-effects, let’s say my husband was having side-effects, you know I am somehow down, I am the one who is positive and it is like I would be blaming myself for the whole thing.’’ (F, 35, HIV + ve)

Side-effects were also considered to be a likely disruption to family dynamic and lifestyle. Many male HIV-negative participants considered themselves the predominant provider for their family and were concerned that some of the side-effects they could experience may prevent them from earning a living. ‘‘My main worry is just about the side-effects because I can say that I would not be in that position to attend to my personal duties like going to the farm to get the daily bread.’’ (M, 54, HIV - ve)

A significant proportion of HIV-positive and -negative participants were anxious that a person uninfected with the disease might not adhere sufficiently to their medication. A busy lifestyle, a lack of perceived necessity to adhere consistently, poor understanding of the importance of the strategy, family confrontations within a polygamous relationship, as well as the prospect of side-effects and daily medication were all cited as reasons why HIV-negative partners may poorly adhere to PrEP. ‘‘The husband will agree and take the medication once and stop taking the drugs but [he] cannot take throughout, he will have problems on taking them throughout.’’ (F, 42, HIV + ve) ‘‘I am somebody who is always busy.then I cannot have time to also take the drugs.’’ (M, 36, HIV - ve)

Despite the fact that stigma was generally not considered to be a major barrier to ARV-based HIV prevention in the area, a few interviewees indicated that it may be more pronounced for users of PrEP, due to the fear of being incorrectly publicly perceived as having HIV. ‘‘This one there are some fears, some stigma associated with it, that you are negative and you are taking drugs, so I prefer the HIV-positive person to take the drugs.’’ (M, 54, HIV - ve) ‘‘Even in this facility for example, if a negative person sat down with other positive people waiting for the drugs, people will think they have HIV also. You know people don’t really want to associate with them, so it will take a lot of convincing.’’ (M, 50, HIV - ve)

Cross-cutting attitudes towards ARV-based prevention They offer protection in addition to condoms. A significant proportion of participants said that they would still continue to use condoms consistently even if they or their partner were using an ARV-based prevention method. One reason for this, expressed by a small number of female HIVpositive participants, was to ensure that their husbands would be around to look after them if they became ill, and take care of the children. ‘‘Once I am taking ARVs I will take and the husband cannot get the infection so the husband is healthy. Once I get sick the husband can come and assist me.’’ (F, 42, HIV + ve)

5 ‘‘I think it is good because I want to protect my husband, because I am already infected with the HIV but I need my husband to be safe to be able to take care of the children.’’ (F, 28, HIV + ve)

Many HIV-positive female interviewees reported feeling under pressure to have unprotected sex with their husband, and cited a desire for the introduction of ARV-based prevention to avoid HIV transmission at this time. Reasons suggested by both spouses for this erratic use of condoms included inconvenience, discomfort, reduced sexual pleasure, and a lack of knowledge about how to use them. ‘‘Men don’t like condom, even the husband, even if I want sometimes he doesn’t want a condom so it forces me sometimes to have sex without a condom so I think that is the reason why I can like this one’’ (F, 50, HIV + ve)

They offer protection instead of condoms. A large proportion of participants wanting to conceive another child were concerned about the risk of HIV transmission to their HIV-negative partner. However, PrEP and TasP were reported by many of these interviewees as potential solutions to this dilemma. ‘‘Since we are still able to give children, then it is good for us than using condom, so that we can bear children, as condoms will stop us from bearing children.’’ (M, 65, HIV - ve) ‘‘Since we are living together as couples, and we want children, there is very high chances that the negative person should get the virus. So I believe that if I start taking it earlier then she might not be infected’’ (M, 43, HIV + ve)

A handful of HIV-negative male (*33%) and female (*25%) participants indicated a desire to stop using condoms if ARV-based prevention methods were available, even if their doctor recommended them to continue. Many of these individuals, all of whom indicated a lack of fear of HIV or felt at low risk of infection, cited the prospect of this reduction in condom use as a perceived benefit to these new strategies: ‘‘HIV is all over the world and even the young child, the foetus inside the stomach is being infected with HIV, even the young ladies of 15 years are being infected with HIV, even the older men are being infected with HIV, so there is no need of me being worried about it.’’ (F, 50, HIV - ve) ‘‘The wife is sick yet I am not seeing any side effect on me, I am not being infected, so there is no need for using condom.. even if the doctor says to use the condom I will not use condom’’ (M, 65, HIV - ve)

The doctor knows best. A large proportion of participants in the study highly respect medical personnel and suggested that they would be willing to initiate either TasP or PrEP as long as their doctor recommended it. ‘‘You know you are next to god, whatever doctor will tell us I will have to do it now’’ (M, 56, HIV - ve) ‘‘I will take if the doctor recommends, because I am in the hands of the doctor who has more knowledge of the future.’’ (F, 26, HIV + ve)

Discussion

With both TasP and PrEP having been deemed costeffective HIV prevention programmes,11 it is important to gain an in-depth understanding of SDCs attitudes and

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preferences towards these strategies to thoroughly assess whether either approach is viable. The findings of this study suggest the majority of individuals in a serodiscordant relationship, irrespective of HIV status and ART-naı¨vety, believed TasP to be more acceptable and preferable to PrEP. This differs from the results of a questionnaire study carried out in Kenya by Heffron et al.,8 which indicated that HIV-positive and HIV-negative partners preferred TasP and PrEP, respectively. It is likely that HIV + ve participant’s in both studies preferred the concept of TasP because of the perceived health benefits they would gain from the program, and the cultural acceptability of preferentially treating the infected individual of a couple. The contrasting opinions of the HIV - ve partners engaged in each study may relate to their experience with PrEP. The patients of Heffron et al.8 were involved in the PartnersPrEP clinical trial and therefore had prior experience with the prevention method, removing fear of the unknown. Their participation in the clinical trial may have also led them to feel obliged to say they liked it. All of our HIV - ve participants, however, were PrEP-naı¨ve, and for this reason the prophylactic regimen may have appeared daunting and culturally intolerable, encouraging an external locus of control, and a preference for their HIV-infected partner to receive treatment. Participants cited TasP as a method that benefits both partners, as well preventing mother-to-child transmission, the same of which could not be said for PrEP. According to the Information-Motivation-Behavioural model,12 strong adherence-related motivation leads to improved adherence-related skills and thus in turn to better ART adherence. For this reason, if HIV-positive patients believe that TasP holds benefits for not only themselves (personal motivation) but also for their HIV-negative partner and unborn children (social motivation), adherence to the regimen is likely to be high. On the other hand, the fear associated with use of prophylactic antiretrovirals in PrEP and the limited perceived benefits it has for their family could lead to reduced adherence when engaged with this program. This is supported by evidence of poor adherence during PrEP clinical trials13 and in turn may have implications for both treatment efficacy and HIV drug resistance. Concerns expressed in relation to TasP were few. However, additional research involving larger numbers of ARTnaı¨ve HIV-positive participants and those who default from HIV treatment, may offer contrasting attitudes to those cited in this study. For those who have not yet accepted their status, willingness to initiate TasP may be reduced. For this reason, if TasP were to be introduced in Kenya, thorough precounseling and serodiscordant psychosocial group involvement should be offered to couples. An additional concern expressed by the majority of participants is the limited cultural acceptance of drug prophylaxis. This was also noted in earlier research in Kenya8 and may represent a significant barrier to future implementation of PrEP. Public health interventions to educate the community about the use of HIV prophylaxis would be essential to change this shared opinion and reduce stigma in the area. Peer health educators, shown to improve the willingness of at risk HIV - ve individuals to engage with PrEP, may also be of use.14 Many more participants were concerned about healthy individuals experiencing problems with side-effects and pill

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burden than they were about someone who is already HIVpositive. A reason for this may be a lack of perceived necessity to endure negative consequences of ARVs when they are being taken for prophylactic purposes. An additional explanation is the expressed need for at least one partner to feel well enough to work and take care of the family. Many participants in the study reported inconsistent condom use within their relationship, indicating that additional prevention strategies such as TasP and PrEP are likely to be of benefit. However, risk compensation would need to be considered as a possibility and strategies to prevent it would be needed. Findings from this study indicate that some couples may reduce or stop using condoms if ARV-based prevention methods were available. There was a suggestion that HIV-negative partners may drive this decision, perhaps because of a lack of perceived risk of HIV, as well as less exposure to healthcare based counseling. HIV-negative participants may also have felt more at liberty to report a desire to reduce condom use due to being the ones at risk of infection. Addressing these issues via education about the importance of condoms for family planning and dual protection against HIV and other sexually transmitted infections is essential. This could be achieved through gender-concordant risk reduction sessions, for example, which have been shown to improve the acceptability, willingness and use of contraceptive barrier methods.15 Limitations

Despite including a relatively small number of SDCs, this qualitative study generates rich data and saturation of themes was achieved. The majority of HIV-positive participants were already receiving ART and this may have influenced findings and reduced generalizability to ART-naı¨ve populations. However, the overall opinions of those with or without this experience did not considerably differ. An additional study limitation may be the effect that cultural interpretation of questions and answers, as well as the use of a translator, may have had on the results. However, ad hoc member validation and continuous clarification during the interviews, as well as dual verification of a proportion of the transcribed dialogue, should have restricted the impact of this bias. Conclusion

This study suggests that TasP may be more acceptable to a similar cohort of individuals than daily oral PrEP; an important finding to consider if ARV-based prevention methods are to be implemented in Kenya. However, PrEP may be preferable in certain circumstances, such as partners of HIVpositive individuals defaulting from treatment, or within populations where attitudes to prophylaxis and health locus of control differ. Acknowledgments

N.F. conceived, designed, and conducted the research, analyzed the data, and wrote the first draft of this article. M.A., P.A., and L.R. supervised the design of the study and offered critical feedback during analysis and write-up. C.J.

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helped to analyze the data. All authors contributed to and have approved the final version of this article. The authors would like to thank all individuals who kindly participated in the study, and Sister Vincent, Austine Wanga, and all other hospital site staff for their work and support. We would also like to thank Dr. Jon Ives for his guidance in qualitative methodology. Funding: The study was made possible via funding from the BMedSc intercalated programme at the University of Birmingham, UK, and a Wolfson bursary awarded by the Royal College of Physicians to N.F. Author Disclosure Statement

The authors have no competing interests to declare. References

1. Coburn BJ, Gerberry DJ, Blower S. Qualification of the role of discordant couples in driving incidence of HIV in sub-Saharan Africa. Lancet Infect Dis 2011;11:263–264. 2. World Health Organisation (WHO). Guidance on couples HIV testing and counselling—including antiretroviral therapy for treatment and prevention in serodiscordant couples. http:// www.who.int/hiv/pub/guidelines/9789241501972/en/ (Last accessed July 24, 2014). 3. World Health Organisation (WHO). Programmatic Update: Antiretroviral Treatment as Prevention (TasP) of HIV and TB. http://www.who.int/hiv/pub/mtct/programmatic_update_ tasp/en/ (Last accessed July 24, 2014). 4. World Health Organisation (WHO). Guidance on Preexposure Oral Prophylaxis (PrEP) for Serodiscordant Couples, Men and Transgender Women Who Have Sex with Men at High Risk of HIV: Recommendations for use in the context of demonstration projects. http://www.who.int/hiv/ pub/guidance_prep/en/ (Last accessed July 24, 2014). 5. Cohen MS, Chen YQ, McCauley M. Prevention of HIV-1 infection with early antiretroviral therapy. N Eng J Med 2011;365:493–505. 6. Baeten JM, Donnell D, Ndase P, et al. Antiretroviral prophylaxis for HIV prevention in heterosexual men and women. N Eng J Med 2012;367:399–410. 7. Eisingerich AB, Wheelock A, Gomez GB. Attitudes and acceptance of oral and parenteral HIV pre-exposure prophylaxis among potential user groups: A multinational study. PLoS One 2012;7:e28238.

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8. Heffron R, Ngure K, Mugo N. Willingness of Kenyan HIV-1 serodiscordant couples to use antiretroviral-based HIV-1 prevention strategies. J Acq Imm Def Syndrome 2012;61: 116–119. 9. Ministry of Medical Services, Republic of Kenya. Guidelines for antiretroviral therapy in Kenya: 4th edition 2011. http://nascop.or.ke/library/ART%20guidelines/Final%20 guidelines%20re%20print%2011-09-2012.pdf (Last accessed July 24, 2014). 10. Ritchie J, Spencer L. Qualitative data analysis for applied policy research. In: Bryman A, Burgess RG (Eds). Analyzing Qualitative Data. Routledge, London. 1994, pp. 173–194. 11. Hallett TB, Baeten JM, Heffron R. Optimal uses of antiretrovirals for prevention of HIV-1 serodiscordant heterosexual couples in South Africa: A modelling study. PLoS Med 2011;8:e1001123. 12. Starace F, Massa A, Amico KR, Fisher JD. Adherence to antiretroviral therapy: An empirical test of the informationmotivation-behavioral skills model. Health Psychol 2006; 25:153–162. 13. Food and Drug Administration (FDA). Background package for NDA 21-752/Supplement 30. www.fda.gov/downloads/ AdvisoryCommittees/CommitteesMeetingMaterials/Drugs/ AntiviralDrugsAdvisoryCommittee/UCM303213.pdf (Last accessed July 24, 2014). 14. Oldenburg CE, Biello KB, Colby D, et al. Engagement with peer health educators is associated with willingness to use pre-exposure prophylaxis among male sex workers in Ho Chi Minh City, Vietnam. AIDS Patient Care STDs 2014; 28:109–112. 15. Jones D, Kashy D, Chitalu N, et al. Risk reduction among HIV-seroconcordant and -discordant couples: The Zambia NOW2 intervention. AIDS Patient Care STDs 2014;28: 433–441.

Address correspondence to: Professor Lesley Roberts Warwick Medical School, The University of Warwick Coventry CV4 7AL United Kingdom E-mail: [email protected]

(Appendix follows/)

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Appendix 1. Topic Guide for HIV-Negative Partners in Serodiscordant Relationships Pre-Exposure Prophylaxis (PrEP) Knowledge level

Have you ever heard of something called HIV pre-exposure prophylaxis? If yes:  Can you please tell me about what you know about it?  How did you hear about it?  I’m just going to tell you some more about it before we discuss your opinion of it If no:  That’s not a problem; I’m just going to tell you a little bit about it before we discuss your opinion of it. The organization that advises governments about how to treat different illnesses and reduce how much disease there is in a community has recently suggested that people who are HIV negative but whose partner is HIV positive could be given a drug to reduce their chances of becoming infected with HIV. These drugs are normally given to people who have HIV to treat them, but it has been shown that it can reduce HIV spread between couples by 60%–75%. It does not reduce your or their chance of getting other sexually spread diseases though.

 How would your condom habit change if you started this strategy? Partners’ views

How do you think your partner would react if you told her/ him that you were taking the drug?  Why do you think this? Would your partner’s views impact on your decision about taking this drug?  Why is this? Treatment as Prevention (TasP) Knowledge level

Have you ever heard about another strategy to prevent HIV spread within couples, which involves the HIV positive member starting ART straight away after they are diagnosed no matter how sick they are? If yes:  Can you please tell me what you know about it?  How did you hear about it?  I’m just going to tell you some more about it before we discuss your opinion of it

Overall view about PrEP

If no:

If this drug were offered to you would you be willing to take it?

 That’s not a problem; I’m just going to tell you a little bit about it before we discuss your opinion of it.

 Why do you think that?  What are your main reasons for this decision? If yes:  Is there anything that would alter this decision? (Why do you say this?)  You would have to take the pill everyday. How do you feel about that?  How long would you be willing to be on the drug for? (Why do you say this?)  Sometimes these drugs can make you feel tired and have headaches. (How do you feel about this?)  Where would you prefer to get your medication? (Why is this?)  Do you have any concerns about starting the drug? (Why do you think that is a problem?) (Does this make a difference about how you feel about the drug?) If no:  Is there anything that would alter your decision? (Why do you say this?)  What are your main concerns about taking the drug? (Why do you think this is a problem?)  Can you think of any benefits? (Does this make a difference to how you feel about the drug?)  How often do you and your partner use a condom?

The same organization that advises governments about treatment also says that a person who has HIV but is in a relationship with someone who does not should be treated for their condition straight away, no matter what their CD4 count is. This is only recommended to reduce the chance of giving HIV to their partner, rather than to treat their HIV. It is thought that by taking antiretroviral therapy early, it reduces the chance of HIV spreading from them to their partner by 96%. It may also improve the health of your partner in the long term. Again this does not reduce your or your partner’s chance of getting other diseases that are spread sexually. Overall view about TasP

If your partner was offered the chance to start their treatment early to reduce the chances of spreading HIV to you, would you want her/him to take it?  Why do you think that?  What are your main reasons for this decision? If yes:  Is there anything that would alter this decision? (Why do you say this?)  What do you think are the main benefits of your partner starting the drug? (Why do you think this?)

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 Sometimes these drugs can have unwanted effects such as tiredness and headaches. How do you feel about this and does it impact your decision? (How do you feel about this?)  Do you have any concerns about your partner starting the drug? (Why do you think that is a problem?) (Does this make a difference to how you feel about the drug?) If no:

9 Partners’ views

Do you think your partner would be willing to start it?  Why do you think this? Do you think they would be likely to take your opinion into account?  Why do you say this? Preference for PrEP or TasP

 Is there anything that would alter your decision? (Why do you say this?)  What are your main concerns about your partner taking the drug? (Why do you think this is a problem?)  Can you think of any benefits? (Does this make a difference to how you feel about the drug?)  How would your condom habit change if you started this strategy?

Would you prefer to start taking a drug or for your partner to start their treatment early to reduce your chances of getting HIV?  Why do you think this?  Do you think your partner would think the same way? Would you prefer the current system that is place now or one of the suggested new methods of prevention?  Why do you feel this way?

Appendix 2. Topic Guide for HIV-Positive Partners in Serodiscordant Relationships Treatment as Prevention (TasP) Knowledge level

Have you ever heard about a strategy to prevent HIV spread within couples, which involves the HIV positive member starting ART straight away after they are diagnosed no matter how sick they are? If yes:  Can you please tell me what you know about it?  How did you hear about it?  I’m just going to tell you some more about it before we discuss your opinion of it. If no:  That’s not a problem; I’m just going to tell you a little bit about it before we discuss your opinion of it. The organization that advises governments about how to treat different illnesses has recently suggested that people who have HIV and who have a partner who does not have HIV should be treated with antiretroviral therapy straight away, no matter what their CD4 count. This is only recommended to reduce the chance of giving HIV to their partner, rather than to treat their HIV. It is thought that by taking antiretroviral therapy early, it reduces the chance of HIV spreading from them to their partner by 96%. It may improve your health in the long term. It does not reduce your or their chance of getting other diseases that are spread sexually.

 Why do you think that?  What are your main reasons for this decision? If yes:  Is there anything that would alter this decision? (Why do you say this?)  You would have to take the pills everyday for a lifetime. How do you feel about that?  Sometimes these drugs can have unwanted effects on your body such as bone and heart problems, upset stomach, weakness, and weight change as well as others. How do you feel about this?  Where would you prefer to get your medication? (Why is this?)  Do you have any concerns about starting the drug? (Why do you think that is a problem?) (Does this make a difference about how you feel about the drug?) If no:  Is there anything that would alter your decision? (Why do you say this?)  What are your main concerns about starting the treatment? (Why do you think this is a problem?)  Can you think of any benefits? (Does this make a difference about how you feel about the drug?)  How often do you and your partner use a condom?  How would your condom habit change if you started this strategy? Partners’ views

Overall view about TasP

If someone offered you the chance to start treatment early to protect your partner, would you do it?

How do you think your partner would react if you told her/ him that you were going to start treatment early to protect them from HIV?

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FOWLER ET AL.

 Why do you think this? Would your partner’s views on this impact on your decision?  Why is this? Pre-Exposure Prophylaxis Knowledge level

Have you ever hear of something called HIV pre-exposure prophylaxis? If yes:  Can you please tell me what you know about it?  How did you hear about it?  I’m just going to tell you some more about it before we discuss your opinion of it. If no:  That’s not a problem; I’m just going to tell you a little bit about it before we discuss your opinion of it. The same organization that advises governments about treatment also says that people who do not have HIV and are in a relationship with someone who does can take antiretroviral therapy, which normally is used to treat HIV, in order to prevent them from getting infected. It is thought that it might reduce the chances of getting HIV by 60%–75%. This would be used instead of early treatment of the HIV partner, not both at the same time. Your partner would have to take this pill every day until you start treatment at the normal time. Overall view about PrEP

If your partner was offered the chance to take pre-exposure prophylaxis to reduce their chances of getting HIV, would you want her/him to take it?  Why do you think that?  What are you main reasons for this decision? If yes:  Is there anything that would alter this decision? (Why do you say this?)

 What do you think are the main benefits of your partner starting the drug? (Why do you think this?)  Sometimes these drugs can have unwanted effects such as tiredness and headaches. How do you feel about this and does it impact your decision? (How do you feel about this?)  Do you have any concerns about your partner starting the drug? (Why do you think that is a problem?) (does this make a difference to how you feel about the drug?) If no:  Is there anything that would alter your decision? (Why do you say this?)  What are your main concerns about your partner taking the drug? (Why do you think this is a problem?)  Can you think of any benefits? (Does this make a difference to how you feel about the drug?)  How would your condom habit change if you started this strategy? Partners’ views

Do you think your partner would be willing to start it?  Why do you think this? Do you think he/she would be likely to take your opinion into account?  Why do you say this? Preference for PREP or ART

Would you prefer to start your HIV treatment early or for your partner to start taking a drug in order to reduce the chances of them getting HIV?  Why do you think this?  Do you think your partner would think the same way? Would you prefer the current system that is in place now or one of the suggested new methods of prevention? Why do you feel this way?