Abstract
In Uganda, a nation-wide scale-up of provider initiated HIV testing and counseling (PITC) presents an opportunity to deliver HIV prevention services to large numbers of people. In a rural Ugandan hospital, focus group discussions and key informant interviews were conducted with outpatients receiving PITC and staff to explore the HIV prevention information, motivation, and behavioral skills strengths and weaknesses, and community and structural-level barriers to PITC acceptability and HIV prevention among this population. Strengths and weakness occurred at all levels, and results suggest brief client-centered interventions during PITC may be an effective approach to increase prevention behaviours in outpatient settings.
Keywords: AIDS, HIV, Prevention, Screening, Health Behaviour
Introduction
One of the earliest and hardest hit countries by the epidemic, Uganda had the highest rates of HIV in the world in the early 1990s, with estimates as high as 30% (Feuer, 2004). Attributed to HIV prevention efforts (Kirby, 2008), rates declined throughout the decade to as low as 5% in 2001 (Hogle et al., 2002). Though Uganda’s HIV reductions have been described as an early success story by many, the epidemic is far from defeated. Rates have stagnated for the last 10 years between 6.5 and 7%, leaving 1.2 million people currently infected (UNAIDS, 2010). A decade of stalled progress highlights the need to strengthen HIV prevention and to uncover what barriers have kept Uganda’s HIV epidemic at a standstill.
One avenue for prevention efforts that may be impactful in Uganda is an opt-out approach such as provider initiated HIV testing and counselling (PITC). An increase in PITC services in recent years coupled with high rates of acceptability (Nakanjako et al., 2007) present an opportunity to deliver HIV prevention messages to large groups of people, with the potential to increase the number of individuals who are aware of their status, link them to care, and reduce HIV risk behaviours (Kiene et al., 2010). In order to implement effective interventions, consensus supports the importance of continuously reassessing prevention approaches and tailoring such approaches to the particular community’s context, which is often achieved through formative research.
There are commonalities in barriers and facilitators to PITC and HIV prevention behaviours across studies from developing nations. To conceptualize these determinants, the Information-Motivation-Behavioral Skills (IMB) model of preventive behaviors has frequently been used and cited in the HIV literature (Fisher and Fisher, 1992; Fisher and Fisher, 2000). This model posits there are three main factors which affect whether someone will engage in prevention or risk behaviours. (1) HIV prevention information, which includes one’s knowledge of HIV and prevention-related facts. For example, myths about how HIV is transmitted have been shown to impede prevention behaviours (Simbayi et al., 2005) and knowledge about HIV prevention is associated with an increased likelihood of having been tested for HIV (Nguyen et al., 2013). (2) HIV prevention motivation includes one’s motivation to engage in preventative behaviours, which includes attitudes towards a prevention behaviour, perceived social norms surrounding that behaviour, and one’s intention to engage in that behaviour. Barriers that manifest as motivational deficits to HIV testing include a fear of learning one’s status, lack of perceived HIV risk, and a fear of having to change sexual practices if HIV positive (Weiser et al., 2006). Factors that manifest as motivational strengths to HIV testing among Ugandans include a new relationship or marriage, planning for the future, distrust of one’s sexual partner, and illness, disease, or death of a partner (Muller et al., 1992). (3) Behavioural skills is the third component of the IMB which is defined as one’s actual and perceived ability to carry out the prevention measures. Among South African men, the perceived ability to have one sexual partner was the strongest predictor of one’s intentions to reduce their number of sexual partners (Nyembezi et al., 2012). A behavioural skill deficit commonly cited as a barrier to safe sex is the inability to negotiate condom use with one’s partner (Fisher et al., 2004), which can be further jeopardized by alcohol use during sex (Fisher et al., 2004), a practice common in Uganda (Zablotska et al., 2006). The IMB model posits that the effect of information and motivation on HIV prevention behaviours works mainly through the acquisition and use of behavioural skills; although in some populations, information and motivation may be direct predictors of behaviour.
The IMB model encompasses individual and interpersonal-level factors influencing prevention behaviours, but the literature also supports the importance of structural and community-level barriers to HIV prevention behaviours (Tomlinson et al., 2010). For example, HIV-stigma has been shown to influence both HIV prevention behaviours (Mbonu et al., 2009)and the use of testing and counselling services (Kalichman and Simbayi, 2003). Furthermore, a review of the literature identified and categorized structural barriers common in resource-poor settings into three broad categories: 1) lack of economic development manifested through poverty; 2) mobility; and 3) gender inequalities (Parker et al., 2000). These structural factors are important to consider in the context of Uganda, where evidence points to limited HIV resources (Plumb, 2011), high rates of mobility in some communities (Nyanzi et al., 2004), and power differentials between men and women (Mirembe and Davies, 2001).
The current study explored the HIV prevention information, motivation, and behavioural skills strengths and weaknesses, and community and structural-level barriers to HIV prevention among individuals receiving PITC in the outpatient department of a rural Ugandan hospital. Our objectives in this formative research were to identify important factors that influence HIV prevention behaviours in this population and explore the acceptability of PITC in order to design an intervention to improve the counselling during PITC.
Method
Participants and setting
Fifty six (27 female, 29 male) patients attending an outpatient clinic and receiving provider-initiated HIV-testing and counselling at a rural hospital in Butambala District, Uganda participated in one of eight focus groups. Twenty three (14 female, 9 male) staff members also participated in one of three focus group discussions: nurse group (8 female), counsellor group (5 female, 2 male), medical and clinical officer group (1 female, 7 males). Additionally 4 staff (3 female, 1 male) participated in key informant interviews: nurses (n=2), HIV counsellors/peer educators (n=2). The purpose of both the focus groups and interviews was to elicit patient and staff perceptions about their community’s strengths and weaknesses related to engaging in HIV prevention behaviours and their input about how to improve counselling during PITC. Gombe Hospital is one of several rural public hospitals in Uganda offering PITC free of charge to all outpatients. The PITC uptake rate during the time of the study was over 88%. The hospital performs approximately 10,000 provider initiated tests per year despite having only 60% of the recommended staff for the facility. The hospital provides free antiretroviral treatment (ARVs) to patients eligible to receive treatment based on the WHO guidelines (at the time of the study: CD4+ cell count < 200 cells/mm3 and/or WHO clinical stage III and IV).
Eligibility for participation required being at least 18 years of age, not having tested for HIV within the prior 3-months, not having previously tested HIV-positive, having had sexual intercourse within the prior 6 months, and not attending the clinic specifically for voluntary counselling and testing (VCT), since the aim of the study was PITC acceptance and motivation may be different among patients presenting for VCT. More than half of the patient sample (64.3%) was currently married, and 17% of married men had more than one wife. Average age was 33.5 (SD 13.1, range 18–70). The majority of the sample (71.4%) was of the Baganda tribe, 21.4% Banyarwanda, and the remainder of another tribe. 35.7% were Catholic, 25% Muslim, 26.8% Protestant, and 10.7% Born Again Christian. 5.4% reported no schooling, 49.9% primary 7 or less, and 44.6% reported 1 or more years of secondary school. Nineteen (33.9%) participants (12 female, 7 male) reported no monetary income, of those with a regular monetary income, average monthly income was 101,702 Shillings (~ USD$ 53), SD 133,238, range 5,000–750,000.
Procedure
A research assistant non-systematically approached outpatients waiting to be seen by the clinician. Patient focus groups were held after patients had seen the clinician and received PITC. Staff on duty were asked to voluntarily attend focus groups/key informant interviews. At enrollment participants provided written informed consent.
Using standard focus group procedures (Basch, 1987) and a focus group discussion protocol adapted from prior IMB-based qualitative work (Fisher et al., 2004), an experienced focus group facilitator conducted all of the focus groups in Luganda, the language spoken by the majority of people in the area and understood by all study participants. Key informant interviews were conducted by an experienced interviewer one-on-one with clinic staff in a private space in the hospital. The patient focus group protocol included semi-structured, open-ended questions on the perceived prevalence of HIV risk and prevention behaviors in the community, barriers to and acceptance of PITC and HIV prevention behaviors, and suggestions to improve PITC at the clinic. The protocol used during staff focus group and key informant interviews included questions addressing the topics discussed in patient focus groups, as well as questions assessing PITC procedures and HIV counseling content, barriers in engaging patients in PITC and HIV prevention behaviors, and suggestions for making the provision of safe sex counseling and PITC more effective from a provider perspective. All sessions were audio recorded and were approximately 90 minutes long. Participants were provided with refreshments during the focus groups as is normal practice in similar hospital meetings. Institutional review boards in the U.S. and Uganda and the Uganda National Council for Science and Technology approved the study.
Analysis
The audio recordings of the focus group were transcribed and translated from Luganda into English. Qualitative analysis was informed by a content analysis approach (Smith, 2000). A coding system was developed before the transcripts were examined, with a priori categories derived from IMB model of preventive behaviors. Authors then conducted an initial review of the data and used an empirical approach, developing classifications inductively from the data, to modify the a priori scheme. Trained coders then coded each of the responses. The coders discussed items on which their coding disagreed and a final code was agreed upon through discussion and consultation with the first author. After verifying and reviewing the coded and labeled focus group responses, the authors identified major themes.
Results
Barriers and strengths related to PITC
IMB-level barriers and strengths
Focus groups revealed individual and interpersonal-level information, motivation, and behavioural skills barriers and strengths related to PITC, which are presented in detail in Table 1. In summary, patients understood many of the benefits of HIV counselling and testing, however, informational barriers related to testing and treatment emerged, including misconceptions about the accuracy of testing and the amount of blood required for testing. Treatment information deficits included a lack of knowledge on the ability to live a long life on treatment when HIV positive and on the availability of HIV treatment. The prevailing attitudes towards PITC were positive. However, conflicting motivational factors, such as the fear of positive test results, emerged as barriers to PITC. Underlying the fear of testing was perceived vulnerability related to one’s own mortality and perceived negative outcomes of disclosing one’s status to a partner. Though women perceived more negative outcomes to disclosing and testing, they reportedly attend the clinic and test more often than men.
Table 1.
Information | Motivation | Behavioural Skills | Structural/Community-level/Other | |
---|---|---|---|---|
Barriers to PITC |
|
|
|
|
Strengths about PITC |
|
|
|
|
Motivational barriers related to counselling included discussions about sexual behaviour perceived as inappropriate, especially socially unacceptable behaviors such as infidelity, and a fear that counselling would result in judgment and breeched confidentiality; “it is not acceptable and that kind of love is done in hiding so it is hard also to discuss them with a counsellor” (28 year old male). However, patients with higher trust in counsellors’ ability did not share these fears. These barriers to counselling also indicate a behavioural skill deficit in communication among patients, which was mirrored in a lack of communication skills in interpersonal relationships regarding PITC, especially among women. Communication strengths, however, were identified in women’s ability to find non-confrontational ways to suggest testing to partners. A lack of coping skills related to positive test results was also identified.
Structural/community-level barriers and strengths
In addition to factors related to the IMB model of behavior change, structural and community-level barriers included limited human resources and poor health care infrastructure straining staff ability to deliver PITC. HIV stigma was reportedly high in the community, as the following quote demonstrates: “people always look at people with HIV as people who committed [a] crime” (21 year old female). Fear of the stigma from being labeled HIV positive was a major community-level factor impacting PITC acceptability; “many people fear to come for HIV testing because they are afraid of being seen testing; they [other community members] might think that they are HIV positive even though they test HIV negative” (41 year old female). However, most patients would be willing to test in private setting and with mature and friendly counsellors.
Suggestions for improving counselling during PITC
IMB-level suggestions
Patient and staff suggestions to improve counselling during PITC are presented in Table 2. Patients felt that counselling content should include general HIV prevention information and increased awareness of treatment availability and outcomes. Staff suggested including men who accompany women to the clinic in counsellling sessions and tailoring counselling content to men specifically, since men have more decision-making power in a couple’s prevention behaviours. Participants suggested behavioural skills content should focus on coping with HIV positive test results and partner communication skills.
Table 2.
Information | Motivation | Behavioural Skills | Structural/Community-level/Other | |
---|---|---|---|---|
Suggestions for improving counselling during PITC |
|
|
|
|
Structural/community-level suggestions
Patients and staff also made suggestions for structural changes to PITC, including condom availability and distribution, and making a separate space to provide PITC and distribute ARVs to protect patient privacy and mitigate fears of stigma. Couples HIV testing and counselling, which is currently offered to patients who want it, was supported by patients and staff held favorable views towards the use of a client-centered counselling approach. Patients and staff felt counsellors were in need of more training in keeping patient confidentiality and a nonjudgmental approach that elicits openness and trust among patients. Finally, staff noted the benefits of using peer educators for counselling.
Barriers and strengths related to HIV prevention behaviours
IMB-level barriers and strengths
Individual and interpersonal barriers and strengths related to HIV prevention behaviours identified in the focus groups mapped onto the IMB model of behavior change. See Table 3 for a comprehensive list of findings. Misinformation related to discordant couples, condom use, and circumcision were among informational barriers identified, however, patients had a general understanding of ways to prevent HIV transmission. Negative attitudes and behavioural skill deficits related to condom use were identified, as well as difficulty buying condoms in public, which is likely related to HIV stigma and stigma related to condom use since community perceptions associate condoms with promiscuity.
Table 3.
Information | Motivation | Behavioural Skills | Structural/Community-level/Other | |
---|---|---|---|---|
Barriers to HIV prevention behaviours |
|
|
|
|
Strengths about HIV prevention behaviours |
|
|
|
Structural/community-level barriers and strengths
Stigma was one of several structural and community-level barriers reported (see Table 3). Gender inequity was identified as obstructing a considerable amount of prevention behaviours. Financial dependence on male partners was said to exacerbate this power differential especially in condom negotiation, and to influence women to engage in transactional sex “to get money for their home problems which their husbands cannot solve” (31 year old single female). A lack of access to female condoms also decreases women’s power over safe sex negotiation. Marriage was identified as increasing women’s risk of HIV, because of the inability to refuse sex with one’s husband and community-wide stigma toward unmarried women makes it difficult to avoid this risk; as one participant explained, unmarried women are “despised in culture” (21 year old married female). Women, however, discussed creative ways to suggest condom use while avoiding conflict, as this quote exemplifies: “Sometimes it doesn’t sound polite to tell your partner that you want to use a condom because you are afraid of getting HIV, so you instead tell him that you are afraid of pregnancy” (21 year old married female). However, women without children are reportedly stigmatized and fear abandonment from their husbands; “If you don’t produce, they can even divorce you” (41 year old married female). This stigma was said to further increase women’s risk for HIV because of women’s desire to reproduce. Other community-level barriers identified include cultural and social norms sanctioning multiple partners among men, which is also influenced by men’s frequent mobility for work. Certain religious beliefs and practices, traditional tribal practices, and cultural practices related to alcohol consumption during sex, were also identified as barriers to prevention behaviours.
Discussion
As found in previous research (Cornman et al. 2011; Fisher et al. 2004), individual and interpersonal-level barriers and strengths to PITC acceptability and HIV prevention uncovered through focus group discussions mapped onto the IMB model of HIV prevention behavior. Patients were generally informed about the benefits of testing and HIV prevention, but key informational deficits were identified, including a lack of knowledge about discordant couples. Bwambale et al., (2008) found similar findings among Ugandan men, with the majority of respondents not believing discordant HIV results are possible. In Uganda, serodiscordance is high; 60% of new infections occur in stable relationships between serodiscordant couples (Merson, 2006), highlighting the need to address this informational deficit. We also identified a lack of information that HIV treatment was available and could prolong life. Prior research found support for a positive relationship between ARV availability and HIV testing (Phakathi et al., 2011). This finding suggests increasing the acceptability of PITC may be dependent on increasing community awareness that individuals living with HIV can live a healthy life if linked to treatment in a timely matter. Misinformation about male circumcision also highlights the need for updating HIV prevention messages communicated to the community to address new prevention technologies, specifically emphasizing the utility of male circumcision in reducing HIV transmission and other knowledge gaps.
Consistent with previous research, a fear of receiving a positive test, negative attitudes towards condoms, and norms deeming safe sex discussions with counsellors unacceptable, were identified as common motivational barriers to PITC and HIV prevention behaviours (Bwambale et al., 2008; Cornman et al., 2011; Fisher et al., 2004; Weiser et al., 2006). Findings identified communication skill deficits among patients as key barriers to both PITC acceptability and prevention behaviours. Previous research supports the importance of communication to prevention behaviours; increases in partner communication have been shown to be positively associated with partner testing and condom use (Gage and Ali, 2005; Sales et al., 2012). The current study revealed strategies deployed by women to overcome such barriers (i.e., suggesting condom use to prevent pregnancy, rather than HIV; using children’s health as a way to motivate men to get tested). These findings are important, as they show women’s innovative ways to protect their health, and may be acceptable strategies to be incorporated into future interventions.
Though individual and interpersonal-level factors were important, barriers outside the IMB model on a structural and community-level may be even more influential to individually-oriented prevention behaviours and PITC acceptability. Throughout the findings, gender inequity was a recurring factor influencing individual behaviour, including women’s ability to refuse sex, to insist on condom use, disclose, and test, as has been found in previous research (Abdool, 2001; Bwambale et al., 2008; Medley et al., 2004). This inequity in sexual decision making has been attributed to men’s higher social and cultural status being reflected in sexual relationships (Gupta, 2000). Further disempowering women was poverty and gendered access to resources (Mumtaz et al., 2005). Our findings revealed women, who would likely otherwise be monogamous, engage in transactional sex as a means of economic survival, which has been shown a prevalent consequence of women’s poverty in Uganda and other African countries (Béné and Merten, 2008), resulting in increased risk of HIV for women (Dunkle et al., 2004). Abstinence was not a feasible prevention strategy for adults in this community unless an individual decided not to get married, a choice which is culturally unacceptable.
Stigma was another recurring structural barrier related to many of the reasons people refuse HIV-testing and are hesitant to adopt prevention behaviours. Stigma was reportedly prevalent in this community and was manifested in fears of being seen at the clinic and concerns around confidentiality. These findings lend support to previous research in sub-Saharan African showing HIV-related stigma to prohibit condom acquisition (Bell, 2009) and HIV-testing (Bwambale et al., 2008; Kalichman and Simbayi, 2003; Weiser et al., 2006). Bwambale et al., (2008) found confidentiality to be a major issue for Ugandan men regarding testing, with many preferring to test in a distant clinic where they would not be identified. Although this study identified many perceived barriers to HIV testing in this population, it is unknown the extent to which they affect acceptance of HIV testing when it is suggested by a provider. However, one study found that perceived negative reactions of an HIV positive test result from one’s partner, fear of disclosing test results to one’s partner, and cultural factors are predictors of HIV test refusal (Fanta and Worku, 2012).
Given the high HIV-related stigma in this community, it is not surprising that confidentiality and trust between counsellors and patients, as well as a private space for PITC, were main suggestions for improving counselling, which has been emphasized in previous research in Uganda (Bwambale et al. 2008). Furthermore, the findings suggest training in a nonjudgmental counselling approach may increase patients’ willingness to be open during counselling. Beyond ensuring a private setting, other structural barriers to counselling related to limited human resources and healthcare infrastructure common in resource-limited healthcare facilities were major barriers to PITC, suggesting the need for a counselling approach that is brief and feasibly implemented in a resource-limited setting with staff of varying counselling experience.
Limitations
The study has a number of limitations. Patients and staff were unsystematically recruited for participation, leaving the possibility for selection bias to have occurred. Additionally, social desirability may have influenced participants’ responses during focus groups and interviews, especially on sensitive topics related to HIV and sexual behaviour. Furthermore, the small sample size and qualitative nature of the data limits the generalizability.
Conclusion
Findings revealed significant factors influencing acceptability of PITC and prevention behaviours in the population that should be considered for future interventions. IMB factors, especially at the interpersonal-level, were identified as important barriers; however, structural and community-level barriers were identified as underpinning, driving factors of a considerable number of individual-level barriers. For example, power in sexual decision making in relationships and couples’ communication were identified as impeding PITC and prevention behaviors on an interpersonal-level, however, community-level norms related to gender inequity underlie these barriers. Though, IMB-related barriers were prevalent, the considerable number of barriers identified on the structural and community-level illuminate the importance for interventions targeting higher-level factors. There is a need for community-wide change in HIV-related stigma and gender inequity to increase PITC and prevention behaviour acceptability. Findings revealed that a non-judgmental, collaborative counselling approach that is brief and feasible to implement in a resource-limited clinical setting may be effective. These findings suggest the implementation of brief client-centered interventions during PITC may be an effective approach to increase prevention behaviours in the outpatient setting.
Acknowledgments
The authors thank Dina DePalo and Rebecca Stern for their contributions to reviewing the transcripts and verifying the coding scheme. This work was supported by a grant from the National Institutes of Mental Health (K01MH083536), PI: Kiene.
Funding: This work was supported by a grant from the National Institutes of Mental Health (K01MH083536), PI: Kiene.
Footnotes
Competing Interests: None
Contributor Information
Susan M Kiene, University of Connecticut School of Medicine, USA.
Katelyn Sileo, University of Connecticut School of Medicine, USA.
Rhoda K Wanyenze, Makerere University School of Public Health, Uganda.
Haruna Lule, Gombe Hospital, Uganda.
Moses H Bateganya, Department of Global Health, University of Washington, USA.
Joseph Jasperse, Department of Health Behavior and Health Education, University of Michigan, USA.
Harriet Nantaba, Gombe Hospital, Uganda.
Kia Jayaratne, University of Connecticut School of Medicine, USA.
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