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Patterns of disclosure and antiretroviral treatmentadherence in a South African mining workplaceprogramme and implications for HIV preventionAnil Bhagwanjee a , Kaymarlin Govender a , Olagoke Akintola a , Inge Petersen a , GavinGeorge b , Leigh Johnstone a & Kerisha Naidoo ba University of KwaZulu-Natal, School of Psychology (Howard College), Private BagX54001, Durban, 4000, South Africab Health Economics and HIV/AIDS Research Division (HEARD), University of KwaZulu-Natal, Private BagX54001, Durban, 4000, South Africa

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Patterns of disclosure and antiretroviral treatment adherence in a South African mining workplace programme and implications for HIV prevention

Anil Bhagwanjee1*, Kaymarlin Govender1, Olagoke Akintola1, Inge Petersen1, Gavin George2, Leigh Johnstone1 and Kerisha Naidoo2

1University of KwaZulu-Natal, School of Psychology (Howard College), Private Bag X54001, Durban 4000, South Africa2Health Economics and HIV/AIDS Research Division (HEARD), University of KwaZulu-Natal, Private Bag X54001, Durban 4000, South Africa*Corresponding author, e-mail: anil@peoplesmartconsulting.co.za

Social and psychological barriers to the disclosure of one’s seropositive HIV status to significant others and poor adherence to taking medications pose significant challenges to the scaling-up of access to antiretroviral treatment (ART) in the workplace. Such barriers are predictive of sub-optimal treatment outcomes and bedevil HIV-prevention interventions at a societal level. Against this background, this article explores the lived experiences of 19 HIV-positive male participants, between the ages of 33 and 57 years, who were enrolled in an ART programme managed at an occupational health clinic at a mining company in South Africa. The majority of these mineworkers had been aware of their HIV status for between 5 and 7 years. The study explored psychological and relational factors, as aspects of these participants lived experiences, which had a bearing on their adherence to their ART regimen and the disclosure choices that they made regarding their HIV status. In our sample, those participants who were adherent demonstrated higher levels of control and acceptance of their HIV infection and were more confident in their ability to manage their treatment, while the group who were non-adherent presented with lower levels of adherence motivation and self-efficacy, difficulties in maintaining a healthy lifestyle and significant challenges in maintaining control over their lives. While most of the men favoured disclosing their HIV status to their partners for the sake of treatment support, they were less sure about disclosing to family members and non-family members, respectively, because of their need to protect these persons and due to their fear of being stigmatised. It was evident that treatment adherence choices and behaviours were impacted by psychological and relational factors, including disclosure decisions. We conclude with a bivariate model for understanding the adherence behaviours that influenced different patterns of ART adherence among the sample, and offer recommendations for HIV-prevention and treatment interventions in a mining workplace.

Keywords: assessment methods, behaviour, HAART, HIV/AIDS, psychological factors, self-efficacy, social support

Introduction

Patients’ adherence to treatment is a dynamic, complex behaviour influenced by the characteristics of the individual, the clinical setting, the patient–practitioner relationship, the treatment regime, the treatment effects, the disease, the individual’s social and relational context, and health-care system factors. These factors can be reciprocal and reinforcing and, as a result, an individual’s level of adherence can shift over time (Ammassari, Trotta, Murri, Castelli, Narcisco, Noto et al., 2002; Ickovics & Meade, 2002; Kagee, 2008). According to Skhosana, Struthers, Gray & McIntyre (2006), treatment adherence is a process that requires adjustment over time and across different aspects of an individual’s lifestyle. Adherence to highly active antiretroviral therapy (HAART) entails “taking the prescribed regimen of drugs in the right doses, at the same time, every day for a lifetime” (Skhosana et al., 2006, p. 17). Successful management of HIV infection requires treatment adherence of not less than 95% in order to prevent the

emergence of resistant strains of HIV and to reduce the viral load to undetectable levels (Chesney, 2004). In investigating the dynamics of patient adherence, this article presents an in-depth analysis of the lived experiences of a sample of HIV-positive male mineworkers on antiretroviral treatment (ART) and explores the psychological and relational experi-ences of both the adherent and non-adherent sub-groups within the sample.

Non-adherence to HAART represents one of the most formidable public health challenges facing HIV/AIDS clinicians and it has devastating implications for both the individual and society as a whole (Kennedy, 2004). Suboptimal adherence is more likely in so-called higher-risk populations, resulting in the development of drug-resistant forms of HIV which can undermine the effectiveness of HAART, limit future treatment options for individuals, and undermine community HIV-prevention efforts, especially with cohorts who are at higher risk of HIV exposure and infection.

A combination of behavioural, structural and biomed-ical approaches, based on sound scientific evidence and

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ownership from all stakeholders, is needed to enhance successful HIV-prevention efforts (Coates, Richter & Caceres, 2008; Merson, O’Malley, Serwadda & Apisuk, 2008; Padian, Buvé, Balkus, Serwadda & Cates, 2008). This combination approach needs to incorporate integrated efforts that strengthen health systems and align stakeholder responses necessary for HIV prevention (Merson et al., 2008). In particular, Padian et al. (2008) stress the need for evidence pertaining to operational requirements, such as long-term treatment adherence, to be considered as part of these combination HIV-prevention strategies. What this suggests is that HIV prevention, testing and treatment are part of a single continuum. Qualitative investigations that shed light on the socio-behavioural dynamic underlying adherence decisions and choices, as well as disclosure of HIV status, are therefore critical in realising the combination HIV-prevention strategy that should be the guiding beacon for academic and practitioner practices.

In southern Africa, the mining and trucking sectors are particularly adversely affected by HIV, due in large part to the nature of the work, which demands that employees are away from their spouses/partners for long periods. This predisposes these employees to higher-risk sexual behaviour and, consequently, HIV infection (Weston, Churchyard, Mametja, McIntyre & Randera, 2007). In their survey of HIV/AIDS programmes in the South African private sector, Connelly & Rosen (2006) reported that two-thirds of the mining companies surveyed had made ART available to their employees, primarily through the employer-provider model, with 90% of employees having access to company-sponsored HIV-treatment programmes. Despite the workplace provision of HIV testing and treatment services, the same study reported that the rates of HIV testing and ART uptake were relatively poor across the companies surveyed.

A review of the literature related to ART adherence revealed a range of psychological and relational factors associated with treatment adherence behaviour (Ammassari et al., 2002). The psychological factors impacting on adherence include participants’ values, belief systems, coping mechanisms, attitudes, and cultural beliefs (Johnson, Neilands, Dilworth, Morin, Remien & Chesney, 2007; Sidat, Fairley & Grierson, 2007; Dahab, Charalambous, Hamilton, Fielding, Kielmann, Churchyard & Grant, 2008), while relational factors include levels of disclosure in the context of interpersonal relationships, such as disclosure to one’s partner, to family, and to others (see Skhosana et al., 2006; Diabaté, Alary & Koffi, 2007; Grant, Logie, Masura, Gorman & Murray, 2008).

Psychological factors impacting on treatment adherenceAttitudes and beliefs related to HIV infection, ART, and general health and wellbeing can exert a strong influence on individuals’ decisions and behaviours relating to antiret-roviral (ARV) drug adherence. For instance, problems with ARV adherence are more likely to be present among individ-uals who have a negative and pessimistic attitude towards their HIV infection and those who are struggling to accept their diagnosis (Hill, Kendall & Fernandez, 2004). Research

has shown that individuals with excellent adherence rates tend to view their ARV regimens as a lifeline and attribute improvements in their health to the effectiveness of ART; consequently, such individuals have been shown to possess a strong level of trust in the effectiveness of ART and come to view their ARV regimen as an important and integrated part of their lives (Sidat et al., 2007).

Similarly, in a study investigating the process of ‘readiness’ that participants went through before becoming adherent to their ARV regimens, a significant change in attitude towards ARV medication was found to be a prerequisite for the attainment of optimal adherence (Enriquez, Lackey, O’Connor & McKinsey, 2004). According to participants in the study, ARV medication had to cease being viewed as a source of inconvenience and unpleasant side-effects and instead had to be viewed as a pathway to health and wellness. In addition, a crucial component of adherence to ARV medications is a strong belief in their efficacy to improve physical health and manage HIV infection (Johnson et al., 2007).

Furthermore, research carried out in China has shown that beliefs about ART are a significant predictor of individ-uals’ adherence to their drug regimens (Wang & Wu, 2007). Also, greater knowledge of HIV treatments and of the consequences associated with poor adherence was significantly related to higher levels of treatment adherence (Wagner, Remien, Carballo-Diéguez & Dolezal, 2002). Finally, individuals’ beliefs in their ability to take ARV medica-tions as prescribed, referred to as adherence self-efficacy, exerted a profound impact on their adherence behaviour (Johnson et al., 2007). A review of published literature concerning ARV adherence found consistent evidence of a significant association between low adherence self-efficacy and behavioural non-adherence (Ammassari et al., 2002).

Relational factors impacting on treatment adherenceIn terms of ART uptake and adherence, the importance of social support from significant others, such as family, friends and sexual partners, in facilitating one’s adherence has been highlighted by a number of studies (e.g. Ammassari et al., 2002; Chesney, 2004; Diabaté et al., 2007; Aspeling & Van Wyk, 2008; Dahab et al., 2008; Grant et al., 2008). According to Kagee (2008), the expression of care and encouragement from significant others to maintain ARV adherence may combine with individuals’ needs for social desirability to strengthen one’s motivation to continue adhering to the treatment regimen. Kagee (2008) notes, however, that in South Africa, owing to high rates of domestic violence, family conflict, abuse, alcoholism and overcrowded living conditions, HIV-positive individuals may not be able to receive the social support they require to maintain a high level of ARV adherence. This is of partic-ular concern to healthcare workers responsible for adminis-tering ART, because research has found lower levels of ARV adherence among individuals who lack social support (Ammassari et al., 2002; Diabaté et al., 2007) and among those who report receiving little emotional and psychological support from others (Sanjobo, Frich & Fretheim, 2008).

Therefore, the presence of adequate social support can have particularly valuable consequences for individuals’

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ability and motivation to adhere with the requirements of ART. Treatment supporters can provide assistance in the form of finances and material resources, provide regular reminders of dosage times, continually reinforce the benefits of ART, and remind individuals of the importance of taking medications as prescribed (Ware, Idoko, Kaaya, Biraro, Wyatt, Agbaji et al., 2009). In an economically deprived township in Zambia, having someone to assist with tasks such as cooking and growing crops gave individuals the help they required to rebuild their life and encouraged them to continue adhering with their ARV regime; and receiving the support of family members was identified as a signifi-cant facilitating factor for ARV adherence in that sample of men and women (Grant et al., 2008).

Research conducted by Murphy, Johnston Roberts, Martin, Marelich & Hoffman (2004) identified particular aspects of social support which significantly predicted adherence to ART among HIV-positive individuals. In their study, adherence ‘over the past week’ was significantly associated with having reliable alliances with others, while having social relations that provide reassurance of personal worth were significantly associated with ‘adherence over the previous month. In contrast, individuals who reported having less social attachments demonstrated better ARV adherence over the previous three days.

These findings point to the importance of consistent social support as a critical factor in sustained medication adherence. They also reveal the complexity of the relation-ship between social relations and ARV adherence; it is apparent that, in some cases, social support can actually hinder adequate treatment adherence, perhaps through the added responsibility and stress which these social relation-ships can bring, especially with regard to a fear of disclo-sure or of taking ARV medications publicly. Furthermore, the increased burden and responsibilities that are associated with living with others in larger households may detract from the strict treatment regimen of ART. This complex dynamic regarding the relationship between social relations and ARV adherence underscores the concern that inadequate and/or inconsistent psychological and social support can lead to an increased prevalence of HIV resistance in communities, which can severely compromise HIV-prevention interven-tions (Laurence, 2004).

Study rationale and scopeIn summary, social and psychological barriers to disclosing one’s seropositive HIV status to significant others and poor treatment adherence pose significant challenges to the scaling-up of access to ART in the workplace and beyond, undermine treatment outcomes, and bedevil community HIV-prevention interventions. In this regard, further empirical work is needed with regard to the development and evalua-tion of theoretical models that incorporate multiple domains of influence, especially contextual factors affecting medica-tion adherence. In particular, qualitative data may be partic-ularly useful in unravelling the contextual complexities of HIV-treatment adherence.

Accordingly, this study offers insights into the psycho-logical and relational complexities of treatment adherence in a sample of 19 HIV-positive male participants, enrolled

in an ART programme managed at an occupational health clinic in one of the larger sites of a mining company in South Africa. The majority of these mineworkers had been aware of their HIV status for between 5 and 7 years. This study investigated psychological factors (values, belief systems, coping mechanisms) and relational factors (including disclo-sure choices) as aspects of the participants’ lived experi-ences, and which had a bearing on their adherence to ART regimens and the disclosure choices they made. The intention of the research was to make recommendations to improve service delivery, and HIV-prevention and treatment outcomes, as well as to add to the body of evidence pertaining to factors impacting treatment adherence and disclosure within workplace settings, particularly among HIV-positive men.

Study siteThe research was conducted at one of the larger sites of a multinational mining company operating in South Africa. At the time of the study, the employee population at the site comprised approximately 380 permanent employees and 70 contract employees. Over the previous eight years, the company, with the support of organised labour, had developed an integrated HIV/AIDS-management strategy across all their mining sites, which included policy, preven-tion and treatment initiatives. A fulltime HIV/AIDS programme coordinator, backed by a team of wellness coordinators, managed the HIV/AIDS programme at the study site. The programme was supported by clinic staff, trade-union shop stewards, peer educators and management.

In terms of the mining company’s policy, HIV testing and treatment was available to permanent and contract employees, as well as their spouses/life partners, and was managed by the onsite company clinic. The company utilised the employer-provider model of treatment (Connelly & Rosen, 2006), comprising a mixed model of internally financed and delivered HIV-related treatment and care, supported by a closed medical-aid scheme. The site clinic was staffed by a doctor and two fulltime nurses. The clinic provided comprehensive medical services, from routine medical screening for all permanent employees through to treatment for chronic conditions.

Sampling and sample demographicsAt the time of the study, 104 HIV-seropositive patients had been registered on the clinic’s HIV-treatment programme. Of this patient cohort, 40 individuals were on pre-HAART and 38 on HAART, with the balance being either deceased or out of contact with the clinic. In December 2009, 19 HIV-positive participants were recruited from the occupational health clinic at the site, using a non-probability sampling technique. Interviews with the participants occurred between January and May 2010.

The sample consisted of male mineworkers, between the ages of 33 and 57, who were all currently enrolled in the company’s ART programme. In terms of marital status: 66% were married or in a relationship with a long-term partner, 22% were single, and 12% were widowed. With regard to current living arrangements, 56% of the participants were living with their spouse or long-term partner, 22% with

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their children, 11% with extended family, and 11% with friends. Twelve percent had no formal education, 22% had a primary-school education, 66% had a secondary-school education, and no participants were educated at the tertiary level. The participants had discovered their HIV-positive status between 1998 and 2009, and on average, had been aware of their status for between 5 and 7 years.

Data collectionData collection involved the use of an in-depth interview technique, supplemented by a demographic questionnaire. Fieldwork was conducted by a research team that was independent of the HIV-testing and ART-service providers. The semi-structured interview schedule covered a range of issues, including the individuals’ attitudes and coping responses in relation to being HIV-positive, their percep-tions and behaviours related to disclosure, and issues and concerns about adhering to their prescribed ARV medica-tion. Interviews were conducted in Pedi (the local language) or in English and were digitally recorded with informed consent. The interviews in English were transcribed verbatim; the non-English interviews were translated into English and transcribed, with back-translation checks applied by independent bilingual speakers.

The Patient Adherence Record, developed by Steel, Nwokike & Joshi (2007), was administered to each partici-pant. This assessment tool is comprised of four components and is administered by a health worker to monitor and assess individuals’ adherence to long-term therapies such as ART. The components are a visual analogue scale (VAS), the pill identification test (PIT), a self-report, and a pill count. With regard to the VAS, the participant was required to indicate his level of medication adherence based on a scale of 1 to 10, with ‘1’ indicating that the participant had missed all ARV doses, and ‘10’ indicating that the participant had adhered to all doses. In the PIT measure, a container of medication was displayed to the participant, who had to inspect the contents of each container and indicate the name of the medication, the number of pills to be taken at each dose, the times at which each dose should be taken, as well as any specific instructions pertaining to the prescribed medication. The self-report measure included four questions asked of the participant to assess his level of ARV adherence.

With regard to the pill-count, patients are required to bring in the medication they are presently taking. It is imperative that the medication presented is only that being used since the date of the participant’s last visit, and that no left-over medication or emergency prescription is presented. By means of a pill count, the clinician can objectively determine whether the treatment regimen had been adhered to as prescribed. However, this element of the patient adherence record was omitted from our data analysis, as over 60% of the participants failed to bring their medication to the interview.

Based on the information gathered by means of these measures, the participants were classified as being adherers or non-adherers to their ART regimen. In order to be classi-fied as an adherer, the individual had to have answered ‘No’ to all the questions of the self-report measure, have scored

95% or above on the VAS, and have been able to provide all required information on the PIT. All participants who did not meet these criteria were deemed non-adherers.

Standard protocols were followed in securing ethical approval for the study from the University of KwaZulu-Natal, and in obtaining permission and informed consent from all relevant mine stakeholders as well as from the research participants.

Data analysisThe information from the Patient Adherence Record was analysed by simple number counts, as per the instructions provided for this measure (see Steel, Nwokike & Joshi, 2007), in order to determine level of adherence to ART. This data was entered into an Excel spreadsheet, together with descriptive information from the demographic questionnaire, thus rendering a matrix of data on treatment adherence for each participant.

A thematic analysis of the interview data was conducted using aspects of Ritchie & Spencer’s (1994) framework approach and Neuman’s (2006) inductive emergent approach. Transcripts of the interviews were coded and the data were analysed for patterns of consensus, contrast and variability. Transcripts of each interview were analysed line by line, and codes were developed to label key themes in the data. The codes were generated inductively, using open coding, in which information is broken down, conceptualised and categorised. Finally, themes from the participants’ stories were pieced together to form a compre-hensive representation of their collective experience. NVivo7 software for qualitative data management was used to apply the a-priori thematic framework from the interview schedule as well as to code new emergent themes.

Results

Based on the specified criteria, 21% (n = 4) of the partici-pants were classified as adherent, and 79% (n = 15) were deemed non-adherent. In accordance with the aims of the study, the main findings from the qualitative data analysis are organised into two sections, namely psychological factors and relational factors. Psychological factors included individuals’ values, belief systems, coping mechanisms, and attitudes associated with being HIV-positive. Relational factors included the various levels of HIV-status disclosure in the context of interpersonal relationships. In the transcript excerpts below, pseudonyms are used to capture the partic-ipants’ behaviours, identities and histories without compro-mising anonymity and confidentiality.

Psychological factors associated with adherenceThe participants demonstrated two distinctive treatment-management characteristics. On the one hand, some participants (n = 4) were confident of ‘being in control’ of their illness and ascribed their adherence to this sense of control over their HIV infection. On the other hand, the non-adherent sample (n = 15) clearly struggled to come to terms with their HIV infection and expressed being less in control of their lives. This dichotomy is illustrated in detail below.

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Acceptance, control, and adherence self-efficacyA particularly remarkable finding common to the small group of adherers in this study was their acceptance of their illness, as opposed to denial, as exemplified in this remark from Puso:

‘The thing is if you don’t accept it, that’s when the virus will eat you up. The truth is that it has happened, so what choice do I really have? I just have to accept it inside me so that I can have a chance to do something about it. Other people don’t make it because inside they want to deny it has happened to them.’

The adherers generally felt confident in their ability to take their medication regularly (adherence self-efficacy) and demonstrated confidence in the effectiveness of the treatment. Jabu asserted:

‘When I saw the doctor last year, he said I need to go on ARV treatment. Since then I always take my medication and also regularly check my CD4 count. The treatment works. I keep positive, so this keeps me well.’

The adherers also felt encouraged by their ability to keep themselves in a good state of health. Puso prided himself in being able to take control of this life:

‘Nobody is in control of your life. You are now in charge. Everything that you do, you are solely responsible for. I take care of my own health.’

He reported maintaining consistent adherence to his ARV medication and being able to deal with the side-effects:

‘I am not boasting. I always take my medications. I deal with the side-effects of it…I seek out solutions about my problems internally. And I just heal. I don’t know, but that’s my nature. I was always like that.’

Sanele also demonstrated acceptance of his illness and personal agency in coping with taking ARVs:

‘I had accepted that whatever has happened has happened…but now I have to take responsibility for my behaviour and keep taking my medication. It’s up to me. That’s most important.’

Mandla indicated that he had control over his health and associated this with a positive attitude towards adherence:

‘So I just had to change my mindset and the way I did things, my diet, you know, and the difficult things like smoking. Doing these positive things helps me with taking my medication regularly.’

Losing control and/or feeling compromisedIn contrast, the non-adherent sample appeared to struggle with maintaining a healthy lifestyle, with some participants encountering particular difficulties with taking their medica-tion while working. Difficulties in maintaining a healthy lifestyle were pervasive in the non-adherent group. One participant, James, felt that he didn’t have control over his eating and drinking:

‘When I take the treatment, I try to eat the right things, but it’s not easy. I eat what I like, and drink to cope with the stress and loneliness. It takes my worries away.’

Nkosinathi claimed that he was able to stop drinking for three years. However, when he started feeling depressed he

started drinking again. He said he now felt better because he was able to regain some control over his health by stopping smoking:

‘If I take my treatment, I should stop drinking and smoking, so I stopped all those things. I started drinking after three years because I was not feeling good about myself, but I stopped smoking completely. If I smoke while I am still sick I will not recover quickly. I know all this, but it is hard to be strong when you are feeling low.’

Being positive about one’s health was difficult when one had to deal with multiple illnesses. Almost one-quarter of the non-adherent participants were more concerned about diabetes and high blood pressure than about their HIV status. This appeared to be a defensive position (i.e. denial) rather than a positive coping strategy, as evidenced by Mfundo’s statement:

‘HIV does not kill people like sugar diabetes and high blood [pressure]. Sugar diabetes is very dangerous. It eats and finishes you. You become very thin. HIV is minor…there is nothing you can do about it anyway.’

Feeling better on ARV treatment resulted in some individ-uals stopping their ARV medication for a period of time, as Nkosinathi described:

‘Ja, I was feeling better for a while and then didn’t worry to take the pills. I felt ok! But I started again after feeling sick.’

Further disciplining oneself in terms of a medication regimen clearly impacted negatively on some participants’ sense of agency. Mzwakhe felt that his freedom has been taken away from him because he had to take his medication with him wherever he went:

‘From that day I thought to myself that I’m no longer going to live like I used to live, and I’m not going to be free again because I’m even taking medication wherever I go.’

Another set of factors associated with non-adherence related to the work environment. The pervasive physical and social effects of living with HIV appeared to compromise some of the men’s view of themselves as ‘good workers,’ a notion associated with historical constructions of masculinity (Govender, 2010). Chronic illness emasculates men, rendering them weak in the face of their peers. Richard, who had just been placed on ARV treatment, spoke about his sense of identity, thus:

‘I am just not sure if I will be able to work because I am using the treatment. I don’t know if it will get worse if I work while on treatment. What kind of a man will I be if I can’t work like I used to?’

Mzwakhe believed that his work contract at another company had not been renewed because he had disclosed his HIV-positive status. Consequently, he feared that if he took his medication at work, the present company might discover his HIV status and he would not get further work:

‘I think I have to, but I also think that I’ll not be hired if I tell them my status. The thing is, I once worked for certain people and they asked me about the treatment that I’m taking and I told them. Shortly afterwards, I was told together with others that there

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is nothing we can do anymore because they are closing…. So I think that they wanted to get rid of me, but they did not know how….’

James felt that his current working hours interfered with him taking his medication on time:

‘Normally I take them…in fact my time doesn’t click properly. Sometimes I take them after 8 p.m. and at times it depends on the time that I clock-off from work. You find that there is a breakdown at work and I have to wait a bit longer there. In such events I take my pills at 9 p.m.’

A few participants felt that the night medication made them feel dizzy and unable to work effectively, indicating difficulty in dealing with medication side-effects. For example, Patrick stated:

‘He [the doctor] said if I don’t take my treatment in time my CD4 count will not improve or it might drop. The problem is the night treatment; the tablets are like sleeping pills. You can’t take them and go to work.’

Some participants attributed their lack of adherence to their busy work schedules, indicating that the ARV medica-tion had not been integrated into their daily lives. Mfundo stated:

‘I sometimes forget when I get too busy, then I remember, but the time has already passed.’

The patient–provider relationshipIn counselling, as well as within the relationship between patients and healthcare providers, it is important that individuals feel they have control over the outcome of their illness and place a high value on this outcome. This positive disposition relates to self-confidence in one’s ability to adhere to the requirements of an ART regimen, including perceptions of few barriers to adherence (Munro, Lewin, Swart & Volmink, 2007). The clinician is central in influencing a patient’s beliefs and attitudes towards ARV medication and the outcomes of adherence, while percep-tions of adherence self-efficacy can influence an individ-ual’s self-regulation capabilities (Johnston Roberts, 2004; Gore-Felton, Rotheram-Borus, Weinhardt, Kelly, Lightfoot, Kirshenbaum et al., 2005).

All the adherent participants associated their control over their adherence behaviours with the belief that that they could live a long, healthy and normal life despite their HIV infection. Such perceptions of adherence self-efficacy were reinforced by a positive patient–provider relationship for all the adherent participants. For instance, Sanele stated:

‘What helped me was the fact that I was open to the doctor about my feelings. He said that it does not mean that I will never be sick, but if I take care of myself I will live for more than 30 years. His support helped me a lot because since 2004 I have never been bedridden.’

Mandla recollected the time he discovered his HIV-positive status, emphasising the role his doctor played in allaying his fears and reinforcing his treatment-adherence behaviour:

‘I was very worried because I was afraid that I was going to die. When I came to my doctor, he told me that if I take care of myself and eat healthy I will live

for a very long time, and so I don’t have to worry about death. He consoled me a lot and I followed his advice. Here I am, I am still alive.’

Relational factors associated with adherenceDisclosure of HIV status is critical, based on its demonstrated links to reduced instances of HIV transmis-sion, increased adherence to health regimens, and a positive relationship to mental health symptoms. Disclosure has been studied within numerous relational contexts: with partners, family members, friends, healthcare professionals and in work settings, with most HIV-infected adults tending to disclose primarily to their sexual partners as a form of treatment support (Arnold, Rice, Flannery & Rotheram-Borus, 2008).

Disclosure to a partnerAlmost all the participants, in both the adherent and non-adherent groups, had disclosed their HIV status to their wives or girlfriends. In the excerpt below, Patrick reflects on the inherent difficulty in dealing with disclosure to partners and the negative implications for adherence when it is poorly managed:

‘If I tell her [new wife] there will be a verbal fight…she will leave me…. So I hide my treatment from her. I also can’t sleep with her without condoms. If I sleep with her without condoms it will mean I am not okay in my mind…. Yes, I will tell her. I will tell her why my wife passed away. I know when I am going to tell her. I am going to tell her when we are in bed after romancing her.’

In general, the participants reported a range of reactions from their partners following disclosure of their HIV status and that they were on treatment. Three of the non-adherent participants complained that their wives would not go for HIV testing, or that after testing their wives would not adhere to treatment, or refused to use condoms. Two participants emphasised the pain they felt when their wives refused to use condoms. For instance, Mfundo’s wife wanted to have children:

‘My heart was hurting. What was hurting me even more was the fact that she didn’t want condoms even after I had told her.’

It is interesting to note the participants’ reports that not one of the female partners had left the men after finding out his HIV status. Participants whose spouses had reportedly tested HIV-negative indicated that they still remained faithful and supportive of their husbands ARV treatment.

Jabu, who was adherent, and whose wife was HIV-negative, was very surprised at how his wife had reacted. He attributes his current health status to her support and acceptance:

‘At the clinic, they counselled my wife and she told them that she loves me and she will support me in my treatment. Ever since I got infected, I was never ill and never ended up being in the hospital. After telling her, to my surprise she told me that she always loves me. By then we had started to use condoms, and I make sure I stay on my treatment.’

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Disclosure to family membersThere was roughly a 50-50 split in terms of those partici-pants who decided to disclose to their children and/or parents and those who did not want to disclose to a family member. Bheki, who was not adherent, summed up his views on why men have a problem with disclosing their HIV status to family members, and the negative effect of this situation on treatment-adherence behaviour:

‘There is this general belief that men are the ones who bring this disease into the home. Immediately, when you disclose to people, you will get blamed. It’s easy for females because they are regarded as victims. Men think it’s better to keep it to themselves and have no support, than to disclose and have more enemies. This whole situation makes it so hard for me to stay on treatment, because they are not with me in this thing.’

The above excerpt illustrates the identity dissonance associ-ated with the masculine role of protector, which, when subverted, results in an emasculated victim positioning. This protector role is evident more broadly in the fact that close to half the sample felt the need to protect their children or their parents and so did not want to disclose to them because they felt it would overburden them or cause them unneces-sary stress. For instance, James disclosed to his mother and blamed himself for causing her demise when she died from a stress-related illness:

‘One thing that I have noticed is that ever since I had disclosed to my mother in 2005 she couldn’t accept it. In 2006 she had high blood pressure and passed away. I thought to myself that maybe it could be because of my status. But I had to tell her — what could I do?’

Because of his perception that he was responsible for his mother’s death, James decided not to disclose to his partner’s family and he reported struggling with treatment adherence.

Over one-third of the participants asserted the need to ‘be strong’ for their family in order to protect them. In partic-ular, Mfundo was motivated to hide any signs of illness, treatment-taking, or emotional distress from his mother and to carry on working to ensure that her needs were provided for. The negative impact of his secrecy on taking his medica-tion was also evident:

‘If I had to be withdrawn from work, I would be disappointing her [his mother], so I had to be strong and come to work every day, you know. I take my pills at work, but this is not always easy. I can’t show her that I’m sick…I need to able to provide for her, just to say thank you, because she brought us up.’

In terms of disclosure to their children, the participants mostly did not want to ‘worry’ them or cause them distress, so they felt it best to hide their HIV status. Nkosinathi explained:

‘I don’t want them to be uncomfortable. I don’t want them to feel the pain…. We [he and his spouse] agreed that if we tell them we are going to hurt them, you see. As long as we live okay, it is fine.’

Even the participants who had disclosed to their children sometimes felt the need to pretend to be well even when

feeling sick, wanting to protect their children from witnessing their pain. For example, Tsepho stated:

‘Once I get a bit sick they all get worried. So even when I am a little sick I just have to put up a brave face.’

In contrast, some of those who had disclosed to their children felt that they received a large amount of support. Petros said he disclosed to his son so that he could protect him from becoming infected:

‘My son is also encouraging me to take my medica-tion and I also told him that he needs to be strong and careful.’

Some participants were encouraged to disclose to their children by their doctor; and some subsequently enlisted a son or daughter as a treatment supporter. Mandla, who was adherent, said:

‘The doctor asked me who was going to be my treatment supporter and I then said to him that I had told my daughter. He then called my daughter and asked her to remind me all the time. She would then set my phone to remind me.’

Many of the participants avoided disclosing to other family members (i.e. siblings, cousins) for fear of blame or the stigma associated with men or women who ‘bring the disease into the house.’ David, who was not adherent, asserted:

‘To be honest I am scared to tell them. And I will not tell them. They are going to be worried, you see. They will be very surprised. They might even blame my woman and say she was the one who infected me.’

And, when asked if he thought that telling his family could be beneficial in terms of support he responded:

‘No. You see if I tell them we might end up fighting in the family. So I decided that it was better if I keep quiet.’

Nonetheless, many of the participants felt the need to disclose in order to protect other family members from contracting HIV infection themselves, by educating them on the dangers of the condition. Nkosinathi, for example, did not disclose to anyone in his family, with the exception of his brother, as he was scared that his brother might get into the same situation:

‘I told him separately because he liked girls. I had to give him advice. The reason why I told him was that he was in denial about the existence of AIDS.’

Disclosure to non-family members In general, those participants who disclosed their HIV status to non-family members did so not to get support for themselves, but to offer their support to others. For example, a few participants discussed the possibility of giving motivational talks to other HIV-positive people. One participant said he had disclosed to another work colleague who had discovered that he too was HIV-positive. However, the majority of participants did not want to disclose to others beyond their family out of fear of being isolated at work or ostracised within the community. This percep-tion was reinforced by having witnessed people who had disclosed being subsequently ostracised and stigmatised.

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One non-adherent participant, Sandile, would not disclose because he felt it would limit his opportunity to socialise with women:

‘For instance, when a person is HIV-positive they say this one does not have long to live. They will always discourage ladies to date you.’

Three of the four adherent participants who seemed to be coping well, and who were generally optimistic throughout their interviews, said that they did not disclose to outsiders or friends because of people’s negative perceptions of HIV-positive people in general. As a result, the partic-ipants said they avoided these people in order to protect themselves from negativity and cynicism.

Tshepo, who was very careful not to disclose his HIV status to anyone, said that he felt comfortable if ‘whites’ saw him going to the clinic for treatment, but would be more worried if he was seen by ‘blacks’ when he picked up his treatment. For some people, the fear of being identified by fellow community members or others to whom the person is known may serve as a deterrent from seeking HIV testing or treatment at a given clinic.

Discussion

Psychological factorsPsychological factors such as beliefs, attitudes and personal behaviours, as well as demographic characteristics, have been implicated in ART adherence in a range of studies (Kagee, 2008). In this study, adherence to an ART regimen was strongly related to positive beliefs about treatment efficacy, a sense of acceptance and agency regarding one’s HIV infection, and strong adherence self-efficacy, grounded in a positive view of the future and driven by the need to survive in order to discharge a caretaker function within one’s immediate family. Consequently, the adherent partici-pants demonstrated a high level of trust in the effectiveness of ART and had come to view their medication regimen as an important part of their lives, which they integrated into their daily routine despite medication side-effects and possible social reprisals. These findings are echoed in much of the literature on ARV adherence (Ammassari et al., 2002).

Thus, non-adherence (including intermittent adherence) appeared to be influenced by a range of factors, including: ambivalence in accepting one’s HIV infection/illness and its potential outcomes; an inability to maintain a healthy lifestyle; a tendency to succumb to negative medication side-effects; low adherence self-efficacy; and feeling better while being on ARV treatment. These findings corroborate much of the existing evidence about adherence behaviour, and in particular, several studies have reported evidence of a relationship between feeling better and discontinuing one’s treatment (Hill et al., 2004).

In this study, denial of one’s HIV-positive status and the use of alcohol and smoking emerged as specific obstacles undermining effective adherence to taking ARVs. Furthermore, individuals’ lack of belief in their ability to take their medication as prescribed (low adherence self-efficacy) was found to impact negatively on their adherence behaviour. A review of the published literature concerning

ART adherence found consistent evidence of an associa-tion between low adherence self-efficacy and non-adherent behaviour (e.g. Johnson et al., 2007; Schönnesson, Williams, Ross, Diamond & Keel, 2007; Kalichman, 2008).

Other individual factors influencing ART adherence, as highlighted in the literature, include forgetfulness, and busy work schedules and routines. These reasons for poor medication adherence were also offered by the participants in this study. Such findings underscore the importance of medical staff developing ART schedules and dosing times that are best suited to individuals’ daily routines. In addition, the findings highlight the need for individuals to implement effective reminder systems concerning when to take their medication. Research has shown that strate-gies such as using pill boxes, alarm clocks set to dosing times, and connecting medication-taking to specific parts of one’s daily routine (such as watching TV programmes and eating meals) can contribute to optimal adherence to an ART regimen (Skhosana et al., 2006). Placing pills in visible places at home and using a wristwatch has also been shown to contribute to better adherence (Grant et al., 2008). Wang & Wu (2007) concluded that the risk of ART non-adherence was more than four-times greater for partici-pants in their study who did not use any reminder strate-gies as compared to those who employed some reminder methods.

Relational factorsResearch demonstrates that in resource-limited settings, having food, transportation, pill boxes, and monetary support are viewed by participants as essential for achieving good adherence to an ART regimen (Grant et al., 2008). Only a minority of the participants in this study reported resource scarcity (namely, lack of food and money) as affecting their treatment adherence and they suggested that the provision of transportation costs would enable them to attend regular medical appointments more judiciously, thereby increasing their adherence motivation. Nachega, Knowlton, Deluca, Schoeman, Watkinson, Efron et al. (2006) suggest that the basic needs and resources that individuals require to maintain satisfactory adherence to ART are often provided by their family members and other sources of social support. The corollary, of course, is that those individuals who fail or struggle to disclose their HIV-positive status are cut off from vital material and emotional resources necessary to support positive adherence motivation and behaviour.

In addition to the influence of the socioeconomic context on ART adherence, the importance of social support from significant others in facilitating ART adherence has been highlighted in this study. Those in the adherent group preferred to disclose to regular partners and/or to close and trusted family members (usually mothers or siblings). The expressions of care and encouragement received from a partner to maintain adherent behaviours appeared to act in concert with a participant’s social-desirability need to strengthen his adherence motivation. In this study, regular partners (and even children) provided emotional support for the participants and reminded them of the importance of taking their medication as prescribed, as reported in other studies (e.g. Ware et al., 2009).

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Notwithstanding the benefits of social support which were evident in this study, disclosing one’s HIV status also appeared to conversely hinder individuals’ adherence to treatment due to the added responsibility of being labelled HIV-positive as well as the stress sometimes generated from having ‘disappointed’ a significant individual or the extended family in general. To this end, many of the partic-ipants were not keen to disclose to their mother and/or children so as to protect them from the emotional burden that this disclosure would place on them. The masculine traits of needing to appear strong and to be protective, to have more than one sexual partner and to procreate, are indicative of the gender power imbalances that underpin the HIV epidemic (Govender, 2010). Of particular signifi-cance was the negative impact of adopting the role of male protector, which, when threatened, resulted in the non-adherent participants in particular adopting a victim/hero role that undermined their ability to access the social support so necessary for improving their adherence motiva-tion and behaviour.

Another barrier to HIV-status disclosure to others was related to individuals’ fears of social stigma and being ostracised by others. Ware et al. (2009) used the concept of social capital to explain both adherence success in sub-Saharan Africa, and also the fear that HIV-positive individuals have of being stigmatised by one’s own family and community. Stigma will result in isolation and severed bonds between the individual and his or her friends or family members — relationships that are essential for survival. Consequently, the attempts of individuals to conceal their HIV-positive status and avoid stigmatisation can be understood as attempts to preserve social capital, which is “a necessary resource in settings of poverty” (Ware et al., 2009, p. 45) and is based on collectivist value systems. Numerous studies have described this fear of stigma among people on ART (e.g. Nachega et al., 2006; Wang & Wu, 2007; Dahab et al., 2008; Sanjobo et al., 2008), which has the dual effect of precluding individuals from disclosing their HIV status and accessing social support, and also consequently fuels the silence and secrecy that undermine treatment adherence.

Some participants felt they could not take their medica-tion at home or at work owing to a fear of discovery of their HIV-positive status. Fear of stigma also prevented some from attending the company clinic for HIV testing or getting refills of medication from the pharmacy. However, among the participants who had informed particular family members or friends about their HIV status, disclosure was reported to have facilitated their ART adherence because it enabled the individuals to receive support from other persons. These findings vindicate the arguments of Skhosana et al. (2006), who discussed HIV infection as a stigmatising condition that detracts from the quality of life experienced. In the view of those authors, disclosure and stigma have an inversely proportionate relationship to each other, wherein a higher chance of being stigmatised will result in a lower likelihood of disclosure (and hence treatment adherence).

This research also highlighted the importance of the relationship between the healthcare worker and the client on ART, as reported in other studies (Tugenberg,

Ware & Wyatt, 2006; Sidat et al., 2007). The high invest-ment of health workers in the therapeutic relationship not only improves patients’ motivation to comply with respon-sible clinical behaviour, but also acts as a primary basis of social support for the clients. An open and trusting relation-ship between healthcare providers and clients on ART is essential to high levels of adherence. Adherence counsel-ling is a critical intervention to address poor understand-ings of ART, evidenced by some of the study participants. In this study, individuals who felt that they were treated well by their clinicians were more likely to report higher levels of treatment adherence and a generally positive attitude to their condition (cf. Johnston Roberts, 2004; Wang & Wu, 2007).

Conclusions and recommendations

This study highlights the psychological and the relational aspects of everyday living shown to have significantly impacted ARV-adherence behaviours in a sample of HIV-positive mineworkers. Primary variables impacting negatively on ART adherence included psychological factors related to knowing one’s HIV status, a perceived loss of control over one’s health and quality of life, the pressure to accept the overwhelming responsibility of being labelled HIV-positive, fear of social stigma and marginalisation, and difficulties with disclosure and its implications. Medication adherence was also negatively impacted by personal difficulties in coping, which arose irrespective of whether or not a participant had disclosed his HIV status to people with whom he lived or to non-family members. .

Based on the model of adherence presented in Figure 1, the following recommendations are offered in order to improve ART adherence among mineworkers in resource-limited settings. These recommendations rely on a combina-tion of educational, psychological and relational strategies in order to maximise long-term treatment adherence. First, in terms of education and counselling, it is important that individuals receive counselling to prepare them for an ART regimen. Furthermore, it is pivotal that there is constant and effective communication between the client and health-care provider. During adherence counselling, a positive link needs to be made between knowing and accepting one’s HIV-positive status and the benefit of increasing the quality of one’s life through treatment. Healthcare professionals need to provide procedural information about adherent behaviour and make the positive link between ART and a long, healthy life. Furthermore, educating individuals on the relationship between adherent behaviour and HIV-risk reduction enables the responsibility for treatment adherence and HIV-prevention to be shared between the health-care provider and the client. As regards HIV-prevention, testing and treatment, lifestyle-adjustment approaches need to be incorporated as part of employee wellness programmes. Such a holistic approach is critical in closing the demonstrated gap between HIV prevention, testing and treatment in workplace programmes (Bhagwanjee, Petersen, Akintola & George, 2008).

In terms of psychological and relational factors, interven-tions should privilege an emphasis on acceptance of one’s

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HIV-positive status in order to promote treatment-adherent behaviour. Second, disclosing to a healthcare provider as a first step to illness management needs to be encouraged. Third, as part of this process, there is a need to build the client’s self-efficacy in managing their illness. Disclosing to a trusted family member/s may serve as an important source of social support. Counselling also needs to be provided for family members who are affected by HIV. In this regard, a couples’ counselling programme for both sero-concordant and sero-discordant couples is essential to any HIV-related illness-management programme.

Lastly, and most importantly, this study echoes the findings of previous studies regarding the discourse of silence surrounding HIV and AIDS on a broad community level. Secrecy and silence about one’s seropositive HIV status and HIV-treatment-taking are major barriers to a person’s self-actualisation and may be expressed in non-adherent behaviour. Simoni, Montgomery, Martin, New, Demas & Rana (2006) make a case for the integra-tion of biomedical interventions with client-focused educational and behavioural strategies, which should be reinforced by directing attention to larger structural issues, such as increasing access to care and reducing stigma, to effectively confront the challenges of HIV prevention and treatment.

Acknowledgements — We acknowledge the financial support of Merck & Co. and the assistance, cooperation and care afforded to us by the mining company, the clinic staff, and the study partici-pants and their families.

The authors — Anil Bhagwanjee is a clinical psychologist and serves as Programme Director of Health Promotion at the School of Psychology at the University of KwaZulu-Natal (UKZN). His

research focus includes the development and evaluation of HIV/AIDS programmes in workplace settings, the factors mitigating the uptake of HIV testing and ART adherence, and bullying and trauma in school settings.

Kaymarlin Govender is a senior lecturer at the School of Psychology, UKZN, and the research director at HEARD. He is a research psychologist with experience in the areas of risk behaviour among youths, health-promotive practices, and gender issues related to HIV.

Olagoke Akintola (PhD) is a senior lecturer in health promotion at the School of Psychology, UKZN. His research interests include gender and informal/unpaid care for people living with HIV, the general impacts of HIV and AIDS on communities and households/families and on the private/public sector, gender and health-risk behaviour, and health research for development.

Inge Petersen (PhD) is professor at the School of Psychology, UKZN. Her research activities and interests are in public mental health and health-services research in low- and middle-income countries.

Gavin George is a senior research fellow at HEARD. He has completed a range of research projects on the economic and social aspects of HIV and AIDS, undertaken on behalf of various United Nations agencies (UNAIDS, UNICEF, ILO, World Bank), govern-ments (South Africa, European Union, Swaziland, Botswana and the United States), international funders (Swedish SIDA, IrishAID, RNE, DfID, GFATM) as well as businesses (SABCOHA, De Beers, AngloAmerican, SAB, Goldfields, Eskom).

Leigh Johnstone is master’s student in industrial psychology at the School of Psychology, UKZN. Her research interests include health promotion, HIV/AIDS and gender, women, identity, power and agency.

Kerisha Naidoo is a research intern at HEARD, with research interests in the areas of monitoring and evaluation, sexual-health-risk behaviour, and HIV prevention. She holds a degree in psychology and criminology from the University of South Africa (UNISA) and a master’s degree in health promotion from UKZN.

Disclosure to partner

Disclosure to family

Disclosure to non-family members

ART-adherence behaviour

Relational factors associated with adherence:

Psychological factors associated with adherence: • Intra-psychic (beliefs, attitudes, behaviour); • Demographic (age, gender, race, culture, socioeconomic status)

Figure 1: A bivariate model of influences on antiretroviral treatment (ART) adherence

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