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

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Social and psychological barriers to the disclosure of one’s seropositive HIV status to significant others and …

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.

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  • 1. This article was downloaded by: [UNIVERSITY OF KWAZULU-NATAL]On: 22 February 2012, At: 05:37Publisher: RoutledgeInforma Ltd Registered in England and Wales Registered Number: 1072954 Registered office: MortimerHouse, 37-41 Mortimer Street, London W1T 3JH, UK African Journal of AIDS Research Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/raar20 Patterns of disclosure and antiretroviral treatment adherence in a South African mining workplace programme and implications for HIV prevention a a a a Anil Bhagwanjee , Kaymarlin Govender , Olagoke Akintola , Inge Petersen , Gavin b a b George , Leigh Johnstone & Kerisha Naidoo a University of KwaZulu-Natal, School of Psychology (Howard College), Private Bag X54001, Durban, 4000, South Africa b Health Economics and HIV/AIDS Research Division (HEARD), University of KwaZulu- Natal, Private BagX54001, Durban, 4000, South Africa Available online: 15 Dec 2011To cite this article: Anil Bhagwanjee, Kaymarlin Govender, Olagoke Akintola, Inge Petersen, Gavin George, LeighJohnstone & Kerisha Naidoo (2011): Patterns of disclosure and antiretroviral treatment adherence in a South Africanmining workplace programme and implications for HIV prevention, African Journal of AIDS Research, 10:sup1, 357-368To link to this article: http://dx.doi.org/10.2989/16085906.2011.637737PLEASE SCROLL DOWN FOR ARTICLEFull terms and conditions of use: http://www.tandfonline.com/page/terms-and-conditionsThis article may be used for research, teaching, and private study purposes. Any substantial or systematicreproduction, redistribution, reselling, loan, sub-licensing, systematic supply, or distribution in any form toanyone is expressly forbidden.The publisher does not give any warranty express or implied or make any representation that the contentswill be complete or accurate or up to date. The accuracy of any instructions, formulae, and drug dosesshould be independently verified with primary sources. The publisher shall not be liable for any loss, actions,claims, proceedings, demand, or costs or damages whatsoever or howsoever caused arising directly orindirectly in connection with or arising out of the use of this material.
  • 2. African Journal of AIDS Research 2011, 10(supplement): 357–368 Copyright © NISC (Pty) Ltd AJAR Printed in South Africa — All rights reserved ISSN 1608–5906 EISSN 1727–9445 doi: 10.2989/16085906.2011.637737 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 1 University of KwaZulu-Natal, School of Psychology (Howard College), Private Bag X54001, Durban 4000, South Africa 2Health Economics and HIV/AIDS Research Division (HEARD), University of KwaZulu-Natal, Private Bag X54001, Durban 4000, South AfricaDownloaded by [UNIVERSITY OF KWAZULU-NATAL] at 05:37 22 February 2012 *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 emergence of resistant strains of HIV and to reduce the viral load to undetectable levels (Chesney, 2004). In investigating Patients’ adherence to treatment is a dynamic, complex the dynamics of patient adherence, this article presents an behaviour influenced by the characteristics of the individual, in-depth analysis of the lived experiences of a sample of the clinical setting, the patient–practitioner relationship, HIV-positive male mineworkers on antiretroviral treatment the treatment regime, the treatment effects, the disease, (ART) and explores the psychological and relational experi- the individual’s social and relational context, and health- ences of both the adherent and non-adherent sub-groups care system factors. These factors can be reciprocal within the sample. and reinforcing and, as a result, an individual’s level of Non-adherence to HAART represents one of the most adherence can shift over time (Ammassari, Trotta, Murri, formidable public health challenges facing HIV/AIDS clinicians Castelli, Narcisco, Noto et al., 2002; Ickovics & Meade, and it has devastating implications for both the individual and 2002; Kagee, 2008). According to Skhosana, Struthers, society as a whole (Kennedy, 2004). Suboptimal adherence Gray & McIntyre (2006), treatment adherence is a process is more likely in so-called higher-risk populations, resulting that requires adjustment over time and across different in the development of drug-resistant forms of HIV which aspects of an individual’s lifestyle. Adherence to highly can undermine the effectiveness of HAART, limit future active antiretroviral therapy (HAART) entails “taking the treatment options for individuals, and undermine community prescribed regimen of drugs in the right doses, at the same HIV-prevention efforts, especially with cohorts who are at time, every day for a lifetime” (Skhosana et al., 2006, p. 17). higher risk of HIV exposure and infection. Successful management of HIV infection requires treatment A combination of behavioural, structural and biomed- adherence of not less than 95% in order to prevent the ical approaches, based on sound scientific evidence and African Journal of AIDS Research is co-published by NISC (Pty) Ltd and Routledge, Taylor & Francis Group
  • 3. 358 Bhagwanjee, Govender, Akintola, Petersen, George, Johnstone and Naidoo ownership from all stakeholders, is needed to enhance has shown that individuals with excellent adherence rates successful HIV-prevention efforts (Coates, Richter & tend to view their ARV regimens as a lifeline and attribute Caceres, 2008; Merson, O’Malley, Serwadda & Apisuk, improvements in their health to the effectiveness of ART; 2008; Padian, Buvé, Balkus, Serwadda & Cates, 2008). consequently, such individuals have been shown to possess This combination approach needs to incorporate integrated a strong level of trust in the effectiveness of ART and come efforts that strengthen health systems and align stakeholder to view their ARV regimen as an important and integrated responses necessary for HIV prevention (Merson et al., part of their lives (Sidat et al., 2007). 2008). In particular, Padian et al. (2008) stress the need Similarly, in a study investigating the process of ‘readiness’ for evidence pertaining to operational requirements, such that participants went through before becoming adherent as long-term treatment adherence, to be considered as part to their ARV regimens, a significant change in attitude of these combination HIV-prevention strategies. What this towards ARV medication was found to be a prerequisite suggests is that HIV prevention, testing and treatment are for the attainment of optimal adherence (Enriquez, Lackey, part of a single continuum. Qualitative investigations that O’Connor & McKinsey, 2004). According to participants shed light on the socio-behavioural dynamic underlying in the study, ARV medication had to cease being viewedDownloaded by [UNIVERSITY OF KWAZULU-NATAL] at 05:37 22 February 2012 adherence decisions and choices, as well as disclosure of as a source of inconvenience and unpleasant side-effects HIV status, are therefore critical in realising the combination and instead had to be viewed as a pathway to health and HIV-prevention strategy that should be the guiding beacon wellness. In addition, a crucial component of adherence for academic and practitioner practices. to ARV medications is a strong belief in their efficacy to In southern Africa, the mining and trucking sectors are improve physical health and manage HIV infection (Johnson particularly adversely affected by HIV, due in large part to et al., 2007). the nature of the work, which demands that employees Furthermore, research carried out in China has shown are away from their spouses/partners for long periods. that beliefs about ART are a significant predictor of individ- This predisposes these employees to higher-risk sexual uals’ adherence to their drug regimens (Wang & Wu, behaviour and, consequently, HIV infection (Weston, 2007). Also, greater knowledge of HIV treatments and of Churchyard, Mametja, McIntyre & Randera, 2007). In their the consequences associated with poor adherence was survey of HIV/AIDS programmes in the South African private significantly related to higher levels of treatment adherence sector, Connelly & Rosen (2006) reported that two-thirds of (Wagner, Remien, Carballo-Diéguez & Dolezal, 2002). the mining companies surveyed had made ART available Finally, individuals’ beliefs in their ability to take ARV medica- to their employees, primarily through the employer-provider tions as prescribed, referred to as adherence self-efficacy, model, with 90% of employees having access to company- exerted a profound impact on their adherence behaviour sponsored HIV-treatment programmes. Despite the (Johnson et al., 2007). A review of published literature workplace provision of HIV testing and treatment services, concerning ARV adherence found consistent evidence of a the same study reported that the rates of HIV testing and significant association between low adherence self-efficacy ART uptake were relatively poor across the companies and behavioural non-adherence (Ammassari et al., 2002). surveyed. A review of the literature related to ART adherence Relational factors impacting on treatment adherence revealed a range of psychological and relational factors In terms of ART uptake and adherence, the importance of associated with treatment adherence behaviour (Ammassari social support from significant others, such as family, friends et al., 2002). The psychological factors impacting on and sexual partners, in facilitating one’s adherence has adherence include participants’ values, belief systems, been highlighted by a number of studies (e.g. Ammassari coping mechanisms, attitudes, and cultural beliefs (Johnson, et al., 2002; Chesney, 2004; Diabaté et al., 2007; Aspeling Neilands, Dilworth, Morin, Remien & Chesney, 2007; Sidat, & Van Wyk, 2008; Dahab et al., 2008; Grant et al., 2008). Fairley & Grierson, 2007; Dahab, Charalambous, Hamilton, According to Kagee (2008), the expression of care and Fielding, Kielmann, Churchyard & Grant, 2008), while encouragement from significant others to maintain ARV relational factors include levels of disclosure in the context adherence may combine with individuals’ needs for social of interpersonal relationships, such as disclosure to one’s desirability to strengthen one’s motivation to continue partner, to family, and to others (see Skhosana et al., 2006; adhering to the treatment regimen. Kagee (2008) notes, Diabaté, Alary & Koffi, 2007; Grant, Logie, Masura, Gorman however, that in South Africa, owing to high rates of & Murray, 2008). domestic violence, family conflict, abuse, alcoholism and overcrowded living conditions, HIV-positive individuals may Psychological factors impacting on treatment not be able to receive the social support they require to adherence maintain a high level of ARV adherence. This is of partic- Attitudes and beliefs related to HIV infection, ART, and ular concern to healthcare workers responsible for adminis- general health and wellbeing can exert a strong influence tering ART, because research has found lower levels of on individuals’ decisions and behaviours relating to antiret- ARV adherence among individuals who lack social support roviral (ARV) drug adherence. For instance, problems with (Ammassari et al., 2002; Diabaté et al., 2007) and among ARV adherence are more likely to be present among individ- those who report receiving little emotional and psychological uals who have a negative and pessimistic attitude towards support from others (Sanjobo, Frich & Fretheim, 2008). their HIV infection and those who are struggling to accept Therefore, the presence of adequate social support can their diagnosis (Hill, Kendall & Fernandez, 2004). Research have particularly valuable consequences for individuals’
  • 4. African Journal of AIDS Research 2011, 10(supplement): 357–368 359 ability and motivation to adhere with the requirements of in an ART programme managed at an occupational health ART. Treatment supporters can provide assistance in the clinic in one of the larger sites of a mining company in South form of finances and material resources, provide regular Africa. The majority of these mineworkers had been aware reminders of dosage times, continually reinforce the benefits of their HIV status for between 5 and 7 years. This study of ART, and remind individuals of the importance of taking investigated psychological factors (values, belief systems, medications as prescribed (Ware, Idoko, Kaaya, Biraro, coping mechanisms) and relational factors (including disclo- Wyatt, Agbaji et al., 2009). In an economically deprived sure choices) as aspects of the participants’ lived experi- township in Zambia, having someone to assist with tasks ences, and which had a bearing on their adherence to such as cooking and growing crops gave individuals the ART regimens and the disclosure choices they made. The help they required to rebuild their life and encouraged them intention of the research was to make recommendations to to continue adhering with their ARV regime; and receiving improve service delivery, and HIV-prevention and treatment the support of family members was identified as a signifi- outcomes, as well as to add to the body of evidence cant facilitating factor for ARV adherence in that sample of pertaining to factors impacting treatment adherence and men and women (Grant et al., 2008). disclosure within workplace settings, particularly amongDownloaded by [UNIVERSITY OF KWAZULU-NATAL] at 05:37 22 February 2012 Research conducted by Murphy, Johnston Roberts, HIV-positive men. Martin, Marelich & Hoffman (2004) identified particular aspects of social support which significantly predicted Study site adherence to ART among HIV-positive individuals. In their The research was conducted at one of the larger sites of study, adherence ‘over the past week’ was significantly a multinational mining company operating in South Africa. associated with having reliable alliances with others, while At the time of the study, the employee population at the having social relations that provide reassurance of personal site comprised approximately 380 permanent employees worth were significantly associated with ‘adherence over and 70 contract employees. Over the previous eight years, the previous month. In contrast, individuals who reported the company, with the support of organised labour, had having less social attachments demonstrated better ARV developed an integrated HIV/AIDS-management strategy adherence over the previous three days. across all their mining sites, which included policy, preven- These findings point to the importance of consistent tion and treatment initiatives. A fulltime HIV/AIDS programme social support as a critical factor in sustained medication coordinator, backed by a team of wellness coordinators, adherence. They also reveal the complexity of the relation- managed the HIV/AIDS programme at the study site. The ship between social relations and ARV adherence; it is programme was supported by clinic staff, trade-union shop apparent that, in some cases, social support can actually stewards, peer educators and management. hinder adequate treatment adherence, perhaps through the In terms of the mining company’s policy, HIV testing added responsibility and stress which these social relation- and treatment was available to permanent and contract ships can bring, especially with regard to a fear of disclo- employees, as well as their spouses/life partners, and sure or of taking ARV medications publicly. Furthermore, the was managed by the onsite company clinic. The company increased burden and responsibilities that are associated utilised the employer-provider model of treatment (Connelly with living with others in larger households may detract from & Rosen, 2006), comprising a mixed model of internally the strict treatment regimen of ART. This complex dynamic financed and delivered HIV-related treatment and care, regarding the relationship between social relations and ARV supported by a closed medical-aid scheme. The site clinic adherence underscores the concern that inadequate and/ was staffed by a doctor and two fulltime nurses. The clinic or inconsistent psychological and social support can lead to provided comprehensive medical services, from routine an increased prevalence of HIV resistance in communities, medical screening for all permanent employees through to which can severely compromise HIV-prevention interven- treatment for chronic conditions. tions (Laurence, 2004). Sampling and sample demographics Study rationale and scope At the time of the study, 104 HIV-seropositive patients had In summary, social and psychological barriers to disclosing been registered on the clinic’s HIV-treatment programme. Of one’s seropositive HIV status to significant others and poor this patient cohort, 40 individuals were on pre-HAART and treatment adherence pose significant challenges to the 38 on HAART, with the balance being either deceased or out scaling-up of access to ART in the workplace and beyond, of contact with the clinic. In December 2009, 19 HIV-positive undermine treatment outcomes, and bedevil community participants were recruited from the occupational health HIV-prevention interventions. In this regard, further empirical clinic at the site, using a non-probability sampling technique. work is needed with regard to the development and evalua- Interviews with the participants occurred between January tion of theoretical models that incorporate multiple domains and May 2010. of influence, especially contextual factors affecting medica- The sample consisted of male mineworkers, between the tion adherence. In particular, qualitative data may be partic- ages of 33 and 57, who were all currently enrolled in the ularly useful in unravelling the contextual complexities of company’s ART programme. In terms of marital status: 66% HIV-treatment adherence. were married or in a relationship with a long-term partner, Accordingly, this study offers insights into the psycho- 22% were single, and 12% were widowed. With regard to logical and relational complexities of treatment adherence current living arrangements, 56% of the participants were in a sample of 19 HIV-positive male participants, enrolled living with their spouse or long-term partner, 22% with
  • 5. 360 Bhagwanjee, Govender, Akintola, Petersen, George, Johnstone and Naidoo their children, 11% with extended family, and 11% with 95% or above on the VAS, and have been able to provide friends. Twelve percent had no formal education, 22% had all required information on the PIT. All participants who did a primary-school education, 66% had a secondary-school not meet these criteria were deemed non-adherers. education, and no participants were educated at the tertiary Standard protocols were followed in securing ethical level. The participants had discovered their HIV-positive approval for the study from the University of KwaZulu-Natal, status between 1998 and 2009, and on average, had been and in obtaining permission and informed consent from all aware of their status for between 5 and 7 years. relevant mine stakeholders as well as from the research participants. Data collection Data collection involved the use of an in-depth interview Data analysis technique, supplemented by a demographic questionnaire. The information from the Patient Adherence Record was Fieldwork was conducted by a research team that was analysed by simple number counts, as per the instructions independent of the HIV-testing and ART-service providers. provided for this measure (see Steel, Nwokike & Joshi, The semi-structured interview schedule covered a range 2007), in order to determine level of adherence to ART. ThisDownloaded by [UNIVERSITY OF KWAZULU-NATAL] at 05:37 22 February 2012 of issues, including the individuals’ attitudes and coping data was entered into an Excel spreadsheet, together with responses in relation to being HIV-positive, their percep- descriptive information from the demographic questionnaire, tions and behaviours related to disclosure, and issues and thus rendering a matrix of data on treatment adherence for concerns about adhering to their prescribed ARV medica- each participant. tion. Interviews were conducted in Pedi (the local language) A thematic analysis of the interview data was conducted or in English and were digitally recorded with informed using aspects of Ritchie & Spencer’s (1994) framework consent. The interviews in English were transcribed approach and Neuman’s (2006) inductive emergent verbatim; the non-English interviews were translated into approach. Transcripts of the interviews were coded and English and transcribed, with back-translation checks the data were analysed for patterns of consensus, contrast applied by independent bilingual speakers. and variability. Transcripts of each interview were analysed The Patient Adherence Record, developed by Steel, line by line, and codes were developed to label key Nwokike & Joshi (2007), was administered to each partici- themes in the data. The codes were generated inductively, pant. This assessment tool is comprised of four components using open coding, in which information is broken down, and is administered by a health worker to monitor and conceptualised and categorised. Finally, themes from the assess individuals’ adherence to long-term therapies such participants’ stories were pieced together to form a compre- as ART. The components are a visual analogue scale (VAS), hensive representation of their collective experience. NVivo7 the pill identification test (PIT), a self-report, and a pill count. software for qualitative data management was used to apply With regard to the VAS, the participant was required to the a-priori thematic framework from the interview schedule indicate his level of medication adherence based on a scale as well as to code new emergent themes. of 1 to 10, with ‘1’ indicating that the participant had missed all ARV doses, and ‘10’ indicating that the participant had Results adhered to all doses. In the PIT measure, a container of medication was displayed to the participant, who had to Based on the specified criteria, 21% (n = 4) of the partici- inspect the contents of each container and indicate the pants were classified as adherent, and 79% (n = 15) were name of the medication, the number of pills to be taken deemed non-adherent. In accordance with the aims of the at each dose, the times at which each dose should be study, the main findings from the qualitative data analysis taken, as well as any specific instructions pertaining to the are organised into two sections, namely psychological prescribed medication. The self-report measure included factors and relational factors. Psychological factors included four questions asked of the participant to assess his level of individuals’ values, belief systems, coping mechanisms, ARV adherence. and attitudes associated with being HIV-positive. Relational With regard to the pill-count, patients are required to bring factors included the various levels of HIV-status disclosure in the medication they are presently taking. It is imperative in the context of interpersonal relationships. In the transcript that the medication presented is only that being used since excerpts below, pseudonyms are used to capture the partic- the date of the participant’s last visit, and that no left-over ipants’ behaviours, identities and histories without compro- medication or emergency prescription is presented. By mising anonymity and confidentiality. means of a pill count, the clinician can objectively determine whether the treatment regimen had been adhered to as Psychological factors associated with adherence prescribed. However, this element of the patient adherence The participants demonstrated two distinctive treatment- record was omitted from our data analysis, as over 60% management characteristics. On the one hand, some of the participants failed to bring their medication to the participants (n = 4) were confident of ‘being in control’ of interview. their illness and ascribed their adherence to this sense Based on the information gathered by means of these of control over their HIV infection. On the other hand, the measures, the participants were classified as being adherers non-adherent sample (n = 15) clearly struggled to come to or non-adherers to their ART regimen. In order to be classi- terms with their HIV infection and expressed being less in fied as an adherer, the individual had to have answered ‘No’ control of their lives. This dichotomy is illustrated in detail to all the questions of the self-report measure, have scored below.
  • 6. African Journal of AIDS Research 2011, 10(supplement): 357–368 361 Acceptance, control, and adherence self-efficacy started drinking again. He said he now felt better because A particularly remarkable finding common to the small he was able to regain some control over his health by group of adherers in this study was their acceptance of their stopping smoking: illness, as opposed to denial, as exemplified in this remark ‘If I take my treatment, I should stop drinking and from Puso: smoking, so I stopped all those things. I started ‘The thing is if you don’t accept it, that’s when drinking after three years because I was not the virus will eat you up. The truth is that it has feeling good about myself, but I stopped smoking happened, so what choice do I really have? I just completely. If I smoke while I am still sick I will not have to accept it inside me so that I can have a recover quickly. I know all this, but it is hard to be chance to do something about it. Other people don’t strong when you are feeling low.’ make it because inside they want to deny it has Being positive about one’s health was difficult when one happened to them.’ had to deal with multiple illnesses. Almost one-quarter of The adherers generally felt confident in their ability to the non-adherent participants were more concerned about take their medication regularly (adherence self-efficacy) diabetes and high blood pressure than about their HIVDownloaded by [UNIVERSITY OF KWAZULU-NATAL] at 05:37 22 February 2012 and demonstrated confidence in the effectiveness of the status. This appeared to be a defensive position (i.e. denial) treatment. Jabu asserted: rather than a positive coping strategy, as evidenced by ‘When I saw the doctor last year, he said I need to Mfundo’s statement: go on ARV treatment. Since then I always take my ‘HIV does not kill people like sugar diabetes and medication and also regularly check my CD4 count. high blood [pressure]. Sugar diabetes is very The treatment works. I keep positive, so this keeps dangerous. It eats and finishes you. You become me well.’ very thin. HIV is minor…there is nothing you can do The adherers also felt encouraged by their ability to keep about it anyway.’ themselves in a good state of health. Puso prided himself in Feeling better on ARV treatment resulted in some individ- being able to take control of this life: uals stopping their ARV medication for a period of time, as ‘Nobody is in control of your life. You are now in Nkosinathi described: charge. Everything that you do, you are solely ‘Ja, I was feeling better for a while and then didn’t responsible for. I take care of my own health.’ worry to take the pills. I felt ok! But I started again He reported maintaining consistent adherence to his ARV after feeling sick.’ medication and being able to deal with the side-effects: Further disciplining oneself in terms of a medication ‘I am not boasting. I always take my medications. I regimen clearly impacted negatively on some participants’ deal with the side-effects of it…I seek out solutions sense of agency. Mzwakhe felt that his freedom has been about my problems internally. And I just heal. I don’t taken away from him because he had to take his medication know, but that’s my nature. I was always like that.’ with him wherever he went: Sanele also demonstrated acceptance of his illness and ‘From that day I thought to myself that I’m no longer personal agency in coping with taking ARVs: going to live like I used to live, and I’m not going to ‘I had accepted that whatever has happened has be free again because I’m even taking medication happened…but now I have to take responsibility for wherever I go.’ my behaviour and keep taking my medication. It’s Another set of factors associated with non-adherence up to me. That’s most important.’ related to the work environment. The pervasive physical and Mandla indicated that he had control over his health and social effects of living with HIV appeared to compromise associated this with a positive attitude towards adherence: some of the men’s view of themselves as ‘good workers,’ a ‘So I just had to change my mindset and the way I notion associated with historical constructions of masculinity did things, my diet, you know, and the difficult things (Govender, 2010). Chronic illness emasculates men, like smoking. Doing these positive things helps me rendering them weak in the face of their peers. Richard, with taking my medication regularly.’ who had just been placed on ARV treatment, spoke about his sense of identity, thus: Losing control and/or feeling compromised ‘I am just not sure if I will be able to work because In contrast, the non-adherent sample appeared to struggle I am using the treatment. I don’t know if it will get with maintaining a healthy lifestyle, with some participants worse if I work while on treatment. What kind of a encountering particular difficulties with taking their medica- man will I be if I can’t work like I used to?’ tion while working. Difficulties in maintaining a healthy Mzwakhe believed that his work contract at another lifestyle were pervasive in the non-adherent group. One company had not been renewed because he had disclosed participant, James, felt that he didn’t have control over his his HIV-positive status. Consequently, he feared that if he eating and drinking: took his medication at work, the present company might ‘When I take the treatment, I try to eat the right discover his HIV status and he would not get further work: things, but it’s not easy. I eat what I like, and drink ‘I think I have to, but I also think that I’ll not be hired to cope with the stress and loneliness. It takes my if I tell them my status. The thing is, I once worked worries away.’ for certain people and they asked me about the Nkosinathi claimed that he was able to stop drinking for treatment that I’m taking and I told them. Shortly three years. However, when he started feeling depressed he afterwards, I was told together with others that there
  • 7. 362 Bhagwanjee, Govender, Akintola, Petersen, George, Johnstone and Naidoo is nothing we can do anymore because they are for a very long time, and so I don’t have to worry closing…. So I think that they wanted to get rid of about death. He consoled me a lot and I followed me, but they did not know how….’ his advice. Here I am, I am still alive.’ James felt that his current working hours interfered with him taking his medication on time: Relational factors associated with adherence ‘Normally I take them…in fact my time doesn’t click Disclosure of HIV status is critical, based on its properly. Sometimes I take them after 8 p.m. and demonstrated links to reduced instances of HIV transmis- at times it depends on the time that I clock-off from sion, increased adherence to health regimens, and a work. You find that there is a breakdown at work positive relationship to mental health symptoms. Disclosure and I have to wait a bit longer there. In such events has been studied within numerous relational contexts: with I take my pills at 9 p.m.’ partners, family members, friends, healthcare professionals A few participants felt that the night medication made them and in work settings, with most HIV-infected adults tending feel dizzy and unable to work effectively, indicating difficulty to disclose primarily to their sexual partners as a form of in dealing with medication side-effects. For example, Patrick treatment support (Arnold, Rice, Flannery & Rotheram-Downloaded by [UNIVERSITY OF KWAZULU-NATAL] at 05:37 22 February 2012 stated: Borus, 2008). ‘He [the doctor] said if I don’t take my treatment in time my CD4 count will not improve or it might drop. Disclosure to a partner The problem is the night treatment; the tablets are Almost all the participants, in both the adherent and like sleeping pills. You can’t take them and go to non-adherent groups, had disclosed their HIV status to their work.’ wives or girlfriends. In the excerpt below, Patrick reflects on Some participants attributed their lack of adherence to the inherent difficulty in dealing with disclosure to partners their busy work schedules, indicating that the ARV medica- and the negative implications for adherence when it is tion had not been integrated into their daily lives. Mfundo poorly managed: stated: ‘If I tell her [new wife] there will be a verbal fight… ‘I sometimes forget when I get too busy, then I she will leave me…. So I hide my treatment from remember, but the time has already passed.’ her. I also can’t sleep with her without condoms. If I sleep with her without condoms it will mean I am not The patient–provider relationship okay in my mind…. Yes, I will tell her. I will tell her In counselling, as well as within the relationship between why my wife passed away. I know when I am going patients and healthcare providers, it is important that to tell her. I am going to tell her when we are in bed individuals feel they have control over the outcome of after romancing her.’ their illness and place a high value on this outcome. This In general, the participants reported a range of reactions positive disposition relates to self-confidence in one’s from their partners following disclosure of their HIV status ability to adhere to the requirements of an ART regimen, and that they were on treatment. Three of the non-adherent including perceptions of few barriers to adherence (Munro, participants complained that their wives would not go for Lewin, Swart & Volmink, 2007). The clinician is central in HIV testing, or that after testing their wives would not adhere influencing a patient’s beliefs and attitudes towards ARV to treatment, or refused to use condoms. Two participants medication and the outcomes of adherence, while percep- emphasised the pain they felt when their wives refused to tions of adherence self-efficacy can influence an individ- use condoms. For instance, Mfundo’s wife wanted to have ual’s self-regulation capabilities (Johnston Roberts, 2004; children: Gore-Felton, Rotheram-Borus, Weinhardt, Kelly, Lightfoot, ‘My heart was hurting. What was hurting me even Kirshenbaum et al., 2005). more was the fact that she didn’t want condoms All the adherent participants associated their control over even after I had told her.’ their adherence behaviours with the belief that that they It is interesting to note the participants’ reports that not could live a long, healthy and normal life despite their HIV one of the female partners had left the men after finding out infection. Such perceptions of adherence self-efficacy were his HIV status. Participants whose spouses had reportedly reinforced by a positive patient–provider relationship for all tested HIV-negative indicated that they still remained faithful the adherent participants. For instance, Sanele stated: and supportive of their husbands ARV treatment. ‘What helped me was the fact that I was open to the Jabu, who was adherent, and whose wife was doctor about my feelings. He said that it does not HIV-negative, was very surprised at how his wife had mean that I will never be sick, but if I take care of reacted. He attributes his current health status to her myself I will live for more than 30 years. His support support and acceptance: helped me a lot because since 2004 I have never ‘At the clinic, they counselled my wife and she told been bedridden.’ them that she loves me and she will support me in Mandla recollected the time he discovered his HIV-positive my treatment. Ever since I got infected, I was never status, emphasising the role his doctor played in allaying his ill and never ended up being in the hospital. After fears and reinforcing his treatment-adherence behaviour: telling her, to my surprise she told me that she ‘I was very worried because I was afraid that I was always loves me. By then we had started to use going to die. When I came to my doctor, he told me condoms, and I make sure I stay on my treatment.’ that if I take care of myself and eat healthy I will live
  • 8. African Journal of AIDS Research 2011, 10(supplement): 357–368 363 Disclosure to family members feeling sick, wanting to protect their children from witnessing There was roughly a 50-50 split in terms of those partici- their pain. For example, Tsepho stated: pants who decided to disclose to their children and/or ‘Once I get a bit sick they all get worried. So even parents and those who did not want to disclose to a family when I am a little sick I just have to put up a brave member. Bheki, who was not adherent, summed up his face.’ views on why men have a problem with disclosing their HIV In contrast, some of those who had disclosed to their status to family members, and the negative effect of this children felt that they received a large amount of support. situation on treatment-adherence behaviour: Petros said he disclosed to his son so that he could protect ‘There is this general belief that men are the ones him from becoming infected: who bring this disease into the home. Immediately, ‘My son is also encouraging me to take my medica- when you disclose to people, you will get blamed. tion and I also told him that he needs to be strong It’s easy for females because they are regarded as and careful.’ victims. Men think it’s better to keep it to themselves Some participants were encouraged to disclose to their and have no support, than to disclose and have children by their doctor; and some subsequently enlisted aDownloaded by [UNIVERSITY OF KWAZULU-NATAL] at 05:37 22 February 2012 more enemies. This whole situation makes it so son or daughter as a treatment supporter. Mandla, who was hard for me to stay on treatment, because they are adherent, said: not with me in this thing.’ ‘The doctor asked me who was going to be my The above excerpt illustrates the identity dissonance associ- treatment supporter and I then said to him that I had ated with the masculine role of protector, which, when told my daughter. He then called my daughter and subverted, results in an emasculated victim positioning. This asked her to remind me all the time. She would then protector role is evident more broadly in the fact that close to set my phone to remind me.’ half the sample felt the need to protect their children or their Many of the participants avoided disclosing to other parents and so did not want to disclose to them because family members (i.e. siblings, cousins) for fear of blame or they felt it would overburden them or cause them unneces- the stigma associated with men or women who ‘bring the sary stress. For instance, James disclosed to his mother disease into the house.’ David, who was not adherent, and blamed himself for causing her demise when she died asserted: from a stress-related illness: ‘To be honest I am scared to tell them. And I will not ‘One thing that I have noticed is that ever since I tell them. They are going to be worried, you see. had disclosed to my mother in 2005 she couldn’t They will be very surprised. They might even blame accept it. In 2006 she had high blood pressure and my woman and say she was the one who infected passed away. I thought to myself that maybe it could me.’ be because of my status. But I had to tell her — And, when asked if he thought that telling his family could what could I do?’ be beneficial in terms of support he responded: Because of his perception that he was responsible for ‘No. You see if I tell them we might end up fighting his mother’s death, James decided not to disclose to his in the family. So I decided that it was better if I keep partner’s family and he reported struggling with treatment quiet.’ adherence. Nonetheless, many of the participants felt the need to Over one-third of the participants asserted the need to disclose in order to protect other family members from ‘be strong’ for their family in order to protect them. In partic- contracting HIV infection themselves, by educating them on ular, Mfundo was motivated to hide any signs of illness, the dangers of the condition. Nkosinathi, for example, did treatment-taking, or emotional distress from his mother and not disclose to anyone in his family, with the exception of his to carry on working to ensure that her needs were provided brother, as he was scared that his brother might get into the for. The negative impact of his secrecy on taking his medica- same situation: tion was also evident: ‘I told him separately because he liked girls. I had to ‘If I had to be withdrawn from work, I would be give him advice. The reason why I told him was that disappointing her [his mother], so I had to be strong he was in denial about the existence of AIDS.’ and come to work every day, you know. I take my pills at work, but this is not always easy. I can’t show Disclosure to non-family members her that I’m sick…I need to able to provide for her, In general, those participants who disclosed their HIV just to say thank you, because she brought us up.’ status to non-family members did so not to get support In terms of disclosure to their children, the participants for themselves, but to offer their support to others. For mostly did not want to ‘worry’ them or cause them distress, example, a few participants discussed the possibility of so they felt it best to hide their HIV status. Nkosinathi giving motivational talks to other HIV-positive people. One explained: participant said he had disclosed to another work colleague ‘I don’t want them to be uncomfortable. I don’t want who had discovered that he too was HIV-positive. However, them to feel the pain…. We [he and his spouse] the majority of participants did not want to disclose to agreed that if we tell them we are going to hurt others beyond their family out of fear of being isolated them, you see. As long as we live okay, it is fine.’ at work or ostracised within the community. This percep- Even the participants who had disclosed to their children tion was reinforced by having witnessed people who had sometimes felt the need to pretend to be well even when disclosed being subsequently ostracised and stigmatised.
  • 9. 364 Bhagwanjee, Govender, Akintola, Petersen, George, Johnstone and Naidoo One non-adherent participant, Sandile, would not disclose ART adherence found consistent evidence of an associa- because he felt it would limit his opportunity to socialise with tion between low adherence self-efficacy and non-adherent women: behaviour (e.g. Johnson et al., 2007; Schönnesson, ‘For instance, when a person is HIV-positive they Williams, Ross, Diamond & Keel, 2007; Kalichman, 2008). say this one does not have long to live. They will Other individual factors influencing ART adherence, always discourage ladies to date you.’ as highlighted in the literature, include forgetfulness, and Three of the four adherent participants who seemed to be busy work schedules and routines. These reasons for poor coping well, and who were generally optimistic throughout medication adherence were also offered by the participants their interviews, said that they did not disclose to outsiders in this study. Such findings underscore the importance or friends because of people’s negative perceptions of of medical staff developing ART schedules and dosing HIV-positive people in general. As a result, the partic- times that are best suited to individuals’ daily routines. In ipants said they avoided these people in order to protect addition, the findings highlight the need for individuals to themselves from negativity and cynicism. implement effective reminder systems concerning when Tshepo, who was very careful not to disclose his HIV to take their medication. Research has shown that strate-Downloaded by [UNIVERSITY OF KWAZULU-NATAL] at 05:37 22 February 2012 status to anyone, said that he felt comfortable if ‘whites’ gies such as using pill boxes, alarm clocks set to dosing saw him going to the clinic for treatment, but would be more times, and connecting medication-taking to specific parts worried if he was seen by ‘blacks’ when he picked up his of one’s daily routine (such as watching TV programmes treatment. For some people, the fear of being identified by and eating meals) can contribute to optimal adherence to fellow community members or others to whom the person is an ART regimen (Skhosana et al., 2006). Placing pills in known may serve as a deterrent from seeking HIV testing or visible places at home and using a wristwatch has also treatment at a given clinic. been shown to contribute to better adherence (Grant et al., 2008). Wang & Wu (2007) concluded that the risk of ART Discussion non-adherence was more than four-times greater for partici- pants in their study who did not use any reminder strate- Psychological factors gies as compared to those who employed some reminder Psychological factors such as beliefs, attitudes and personal methods. behaviours, as well as demographic characteristics, have been implicated in ART adherence in a range of studies Relational factors (Kagee, 2008). In this study, adherence to an ART regimen Research demonstrates that in resource-limited settings, was strongly related to positive beliefs about treatment having food, transportation, pill boxes, and monetary support efficacy, a sense of acceptance and agency regarding one’s are viewed by participants as essential for achieving good HIV infection, and strong adherence self-efficacy, grounded adherence to an ART regimen (Grant et al., 2008). Only a in a positive view of the future and driven by the need to minority of the participants in this study reported resource survive in order to discharge a caretaker function within scarcity (namely, lack of food and money) as affecting their one’s immediate family. Consequently, the adherent partici- treatment adherence and they suggested that the provision pants demonstrated a high level of trust in the effectiveness of transportation costs would enable them to attend regular of ART and had come to view their medication regimen medical appointments more judiciously, thereby increasing as an important part of their lives, which they integrated their adherence motivation. Nachega, Knowlton, Deluca, into their daily routine despite medication side-effects and Schoeman, Watkinson, Efron et al. (2006) suggest that possible social reprisals. These findings are echoed in the basic needs and resources that individuals require to much of the literature on ARV adherence (Ammassari et al., maintain satisfactory adherence to ART are often provided 2002). by their family members and other sources of social support. Thus, non-adherence (including intermittent adherence) The corollary, of course, is that those individuals who fail or appeared to be influenced by a range of factors, including: struggle to disclose their HIV-positive status are cut off from ambivalence in accepting one’s HIV infection/illness and vital material and emotional resources necessary to support its potential outcomes; an inability to maintain a healthy positive adherence motivation and behaviour. lifestyle; a tendency to succumb to negative medication In addition to the influence of the socioeconomic context side-effects; low adherence self-efficacy; and feeling better on ART adherence, the importance of social support from while being on ARV treatment. These findings corroborate significant others in facilitating ART adherence has been much of the existing evidence about adherence behaviour, highlighted in this study. Those in the adherent group and in particular, several studies have reported evidence preferred to disclose to regular partners and/or to close and of a relationship between feeling better and discontinuing trusted family members (usually mothers or siblings). The one’s treatment (Hill et al., 2004). expressions of care and encouragement received from a In this study, denial of one’s HIV-positive status and partner to maintain adherent behaviours appeared to act the use of alcohol and smoking emerged as specific in concert with a participant’s social-desirability need to obstacles undermining effective adherence to taking ARVs. strengthen his adherence motivation. In this study, regular Furthermore, individuals’ lack of belief in their ability to take partners (and even children) provided emotional support their medication as prescribed (low adherence self-efficacy) for the participants and reminded them of the importance of was found to impact negatively on their adherence taking their medication as prescribed, as reported in other behaviour. A review of the published literature concerning studies (e.g. Ware et al., 2009).
  • 10. African Journal of AIDS Research 2011, 10(supplement): 357–368 365 Notwithstanding the benefits of social support which Ware & Wyatt, 2006; Sidat et al., 2007). The high invest- were evident in this study, disclosing one’s HIV status also ment of health workers in the therapeutic relationship not appeared to conversely hinder individuals’ adherence to only improves patients’ motivation to comply with respon- treatment due to the added responsibility of being labelled sible clinical behaviour, but also acts as a primary basis of HIV-positive as well as the stress sometimes generated social support for the clients. An open and trusting relation- from having ‘disappointed’ a significant individual or the ship between healthcare providers and clients on ART is extended family in general. To this end, many of the partic- essential to high levels of adherence. Adherence counsel- ipants were not keen to disclose to their mother and/or ling is a critical intervention to address poor understand- children so as to protect them from the emotional burden ings of ART, evidenced by some of the study participants. that this disclosure would place on them. The masculine In this study, individuals who felt that they were treated well traits of needing to appear strong and to be protective, to by their clinicians were more likely to report higher levels have more than one sexual partner and to procreate, are of treatment adherence and a generally positive attitude to indicative of the gender power imbalances that underpin their condition (cf. Johnston Roberts, 2004; Wang & Wu, the HIV epidemic (Govender, 2010). Of particular signifi- 2007).Downloaded by [UNIVERSITY OF KWAZULU-NATAL] at 05:37 22 February 2012 cance was the negative impact of adopting the role of male protector, which, when threatened, resulted in the Conclusions and recommendations non-adherent participants in particular adopting a victim/ hero role that undermined their ability to access the social This study highlights the psychological and the relational support so necessary for improving their adherence motiva- aspects of everyday living shown to have significantly tion and behaviour. impacted ARV-adherence behaviours in a sample of Another barrier to HIV-status disclosure to others was HIV-positive mineworkers. Primary variables impacting related to individuals’ fears of social stigma and being negatively on ART adherence included psychological factors ostracised by others. Ware et al. (2009) used the concept related to knowing one’s HIV status, a perceived loss of of social capital to explain both adherence success in control over one’s health and quality of life, the pressure sub-Saharan Africa, and also the fear that HIV-positive to accept the overwhelming responsibility of being labelled individuals have of being stigmatised by one’s own family HIV-positive, fear of social stigma and marginalisation, and and community. Stigma will result in isolation and severed difficulties with disclosure and its implications. Medication bonds between the individual and his or her friends or family adherence was also negatively impacted by personal members — relationships that are essential for survival. difficulties in coping, which arose irrespective of whether or Consequently, the attempts of individuals to conceal not a participant had disclosed his HIV status to people with their HIV-positive status and avoid stigmatisation can be whom he lived or to non-family members. . understood as attempts to preserve social capital, which is Based on the model of adherence presented in Figure “a necessary resource in settings of poverty” (Ware et al., 1, the following recommendations are offered in order to 2009, p. 45) and is based on collectivist value systems. improve ART adherence among mineworkers in resource- Numerous studies have described this fear of stigma limited settings. These recommendations rely on a combina- among people on ART (e.g. Nachega et al., 2006; Wang & tion of educational, psychological and relational strategies Wu, 2007; Dahab et al., 2008; Sanjobo et al., 2008), which in order to maximise long-term treatment adherence. First, has the dual effect of precluding individuals from disclosing in terms of education and counselling, it is important that their HIV status and accessing social support, and also individuals receive counselling to prepare them for an ART consequently fuels the silence and secrecy that undermine regimen. Furthermore, it is pivotal that there is constant treatment adherence. and effective communication between the client and health- Some participants felt they could not take their medica- care provider. During adherence counselling, a positive link tion at home or at work owing to a fear of discovery of their needs to be made between knowing and accepting one’s HIV-positive status. Fear of stigma also prevented some HIV-positive status and the benefit of increasing the quality from attending the company clinic for HIV testing or getting of one’s life through treatment. Healthcare professionals refills of medication from the pharmacy. However, among need to provide procedural information about adherent the participants who had informed particular family members behaviour and make the positive link between ART and a or friends about their HIV status, disclosure was reported long, healthy life. Furthermore, educating individuals on to have facilitated their ART adherence because it enabled the relationship between adherent behaviour and HIV-risk the individuals to receive support from other persons. These reduction enables the responsibility for treatment adherence findings vindicate the arguments of Skhosana et al. (2006), and HIV-prevention to be shared between the health- who discussed HIV infection as a stigmatising condition care provider and the client. As regards HIV-prevention, that detracts from the quality of life experienced. In the view testing and treatment, lifestyle-adjustment approaches of those authors, disclosure and stigma have an inversely need to be incorporated as part of employee wellness proportionate relationship to each other, wherein a higher programmes. Such a holistic approach is critical in closing chance of being stigmatised will result in a lower likelihood the demonstrated gap between HIV prevention, testing of disclosure (and hence treatment adherence). and treatment in workplace programmes (Bhagwanjee, This research also highlighted the importance of the Petersen, Akintola & George, 2008). relationship between the healthcare worker and the In terms of psychological and relational factors, interven- client on ART, as reported in other studies (Tugenberg, tions should privilege an emphasis on acceptance of one’s
  • 11. 366 Bhagwanjee, Govender, Akintola, Petersen, George, Johnstone and Naidoo Psychological factors associated with adherence: • Intra-psychic (beliefs, attitudes, behaviour); • Demographic (age, gender, race, culture, socioeconomic status) ART-adherence behaviour Relational factors associated with adherence: Disclosure to partnerDownloaded by [UNIVERSITY OF KWAZULU-NATAL] at 05:37 22 February 2012 Disclosure to family Disclosure to non-family members Figure 1: A bivariate model of influences on antiretroviral treatment (ART) adherence research focus includes the development and evaluation of HIV/ HIV-positive status in order to promote treatment-adherent AIDS programmes in workplace settings, the factors mitigating the behaviour. Second, disclosing to a healthcare provider as uptake of HIV testing and ART adherence, and bullying and trauma a first step to illness management needs to be encouraged. in school settings. Third, as part of this process, there is a need to build the Kaymarlin Govender is a senior lecturer at the School of client’s self-efficacy in managing their illness. Disclosing to a Psychology, UKZN, and the research director at HEARD. He is a trusted family member/s may serve as an important source research psychologist with experience in the areas of risk behaviour of social support. Counselling also needs to be provided for among youths, health-promotive practices, and gender issues family members who are affected by HIV. In this regard, a related to HIV. couples’ counselling programme for both sero-concordant Olagoke Akintola (PhD) is a senior lecturer in health promotion at the School of Psychology, UKZN. His research interests include and sero-discordant couples is essential to any HIV-related gender and informal/unpaid care for people living with HIV, the illness-management programme. general impacts of HIV and AIDS on communities and households/ Lastly, and most importantly, this study echoes the families and on the private/public sector, gender and health-risk findings of previous studies regarding the discourse of behaviour, and health research for development. silence surrounding HIV and AIDS on a broad community Inge Petersen (PhD) is professor at the School of Psychology, level. Secrecy and silence about one’s seropositive HIV UKZN. Her research activities and interests are in public mental status and HIV-treatment-taking are major barriers to health and health-services research in low- and middle-income a person’s self-actualisation and may be expressed in countries. non-adherent behaviour. Simoni, Montgomery, Martin, Gavin George is a senior research fellow at HEARD. He has New, Demas & Rana (2006) make a case for the integra- completed a range of research projects on the economic and social aspects of HIV and AIDS, undertaken on behalf of various United tion of biomedical interventions with client-focused Nations agencies (UNAIDS, UNICEF, ILO, World Bank), govern- educational and behavioural strategies, which should be ments (South Africa, European Union, Swaziland, Botswana and reinforced by directing attention to larger structural issues, the United States), international funders (Swedish SIDA, IrishAID, such as increasing access to care and reducing stigma, to RNE, DfID, GFATM) as well as businesses (SABCOHA, De Beers, effectively confront the challenges of HIV prevention and AngloAmerican, SAB, Goldfields, Eskom). treatment. Leigh Johnstone is master’s student in industrial psychology at the School of Psychology, UKZN. Her research interests include Acknowledgements — We acknowledge the financial support of health promotion, HIV/AIDS and gender, women, identity, power Merck & Co. and the assistance, cooperation and care afforded to and agency. us by the mining company, the clinic staff, and the study partici- Kerisha Naidoo is a research intern at HEARD, with research pants and their families. interests in the areas of monitoring and evaluation, sexual- health-risk behaviour, and HIV prevention. She holds a degree in The authors — Anil Bhagwanjee is a clinical psychologist and psychology and criminology from the University of South Africa serves as Programme Director of Health Promotion at the School (UNISA) and a master’s degree in health promotion from UKZN. of Psychology at the University of KwaZulu-Natal (UKZN). His
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