African Journal of AIDS Research 2014, 13(3): 215–227 Printed in South Africa — All rights reserved
Copyright © NISC (Pty) Ltd
AJAR
ISSN 1608-5906 EISSN 1727-9445 http://dx.doi.org/10.2989/16085906.2014.952646
HIV-serostatus disclosure in the context of free antiretroviral therapy and socio-economic dependency: experiences among women living with HIV in Tanzania Leah F Bohle1,2*, Hansjörg Dilger3 and Uwe Groß1 Institute for Medical Microbiology, Göttingen University Medical School, University of Göttingen, Kreuzbergring 57, 37075 Göttingen, Lower Saxony, Germany 2Swiss Tropical and Public Health Institute (Swiss TPH), Swiss Centre for International Health (SCIH), Socinstrasse 57, PO Box 4002, Basel, Switzerland; associated Institute of the University of Basel 3Institute of Social and Cultural Anthropology, Freie Universität Berlin, Landoltweg 9-11, 14195 Berlin, Germany *Corresponding author, email: [email protected]
1
The worldwide implementation of free antiretroviral therapy (ART) raised great hopes among policy makers and health organisations about the positive changes it would bring about in attitudes and behaviours towards HIV and AIDS, as well as for infected people’s lives. A change in illness perception was anticipated, leading to the hypothesis of a possible change in disclosure rates, patterns and the choice of significant others to inform. In the era of free treatment availability in the United Republic of Tanzania, we examined reasons for disclosure and non-disclosure among HIV-seropositive women enrolled on ART and their choice of significant others to inform. In so doing, we contribute to the necessary yet neglected debate about the social impact of ART on the lives of infected women. The study, for which an ethnographic cross-sectional pilot approach was chosen, was conducted at the Care and Treatment Center (CTC) at Bombo Regional Hospital (BRH) in Tanga city, Tanzania. Data presented here derive from participant observation, questionnaires and semi-structured interviews conducted with 59 HIV-seropositive women on ART. Interestingly, and despite treatment availability, the choice of significant others to inform, as well as reasons for disclosure and non-disclosure, mirror findings from previous studies conducted before the introduction of free ART. The main reason for non-disclosure was fear of discrimination. The hope for social, economic or health support was the main motivation for disclosure, followed by the need for a ‘clinic companion’ in order to receive ART, as requested by hospital staff. Nevertheless, healthcare staff were not unanimous in thinking that disclosure is always beneficial, thus the recommended extent of disclosure varied. ART and concomitant factors were raised as an entirely new and significant reason for disclosure by interviewees. Finally, findings confirm that despite ART, disclosure remains a highly stressful event for women. Keywords: AIDS, HAART, living with antiretroviral therapy, qualitative, multi-method approach, HIV/AIDS policy, gender, East Africa
Introduction Antiretroviral therapy (ART) was introduced free of charge in Tanzania in 2004. With the implementation of universal treatment availability, launched through the ‘3 by 5’ initiative by the Joint United Nations Programme on HIV/AIDS (UNAIDS) and the World Health Organization (WHO, 2013), great hopes were raised by policy makers and public health advocates about the potentially positive social impact of ART (WHO 2003, 2006, 2013). It was expected that “… attitudes will change, and denial, stigma and discrimination will rapidly be reduced” (WHO 2003: 6). With access to free1 ART, and the concomitant expected reduction in discrimination and stigmatisation — the main barriers to disclosure — a change in disclosure rates and patterns, including the choice of significant others to inform, was anticipated. However, the need for support, often stated
as a major reason for disclosure, was also expected to diminish with improved ART access and health improvement, which could itself lead to a change in the choice of significant others to inform. These exclusively positive expectations of WHO were based solely on experiences in high income countries (WHO 2013: 3), and need to be interpreted in light of the WHO promotion of the ‘3 by 5’ initiative. By emphasising possible long-term advantages in terms of positive impact and outcome, the initiative aimed to motivate collaborators in the enormous undertaking ahead. However, as demonstrated by the current scientific literature on ART roll-out in Tanzania (Mattes 2011, Moyer 2012), and as outlined in this article, the process of disclosure and its outcomes in an era of free ART are far more complex than initially anticipated, and the initiative has not led to solely positive results.
African Journal of AIDS Research is co-published by NISC (Pty) Ltd and Routledge, Taylor & Francis Group
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In Tanzania mainland in 2008, approximately 1.3 million people of the total population were estimated to be HIV-seropositive (TACAIDS 2010), with most being female (ASAP/UNAIDS 2008). Since the introduction of free ART in 2004 (AVERT 2011) and its countrywide distribution, the number of people on treatment dramatically increased from 2 000 people in the first year (TACAIDS 2009) to nearly 200 000 in 2009 (UNAIDS 2010). Disclosure rates and patterns were well researched before the availability of free ART in Tanzania (Lie and Biswalo 1996, MacNeil et al. 1999, Antelman et al. 2001, Kilewo et al. 2001, Maman et al. 2001, Maman et al. 2003, Dilger 2005, Greeff et al. 2008, de Klerk 2010). However, to date very few studies have exclusively examined disclosure practices of HIV-seropositive status after the introduction of free ART countrywide (Lugalla et al. 2008, Zou et al. 2009, Moyer 2012). The results of the few studies that have been conducted have proven astonishingly similar, with regard to the choice of significant others to inform, to those conducted before widespread ART availability (Lie and Biswalo 1996, Lugalla et al. 2008). Before the introduction of ART, disclosure mainly occurred among immediate family members (i.e. siblings and parents) and children, with relatively low rates of disclosure to partners. Extended relatives and friends only played a minor role in disclosure practices (Lie and Biswalo 1996, Greeff et al. 2008, Lugalla et al. 2008). Within these studies, however, the process of disclosure and the reasoning behind the choice of significant others to whom to disclose remain unclear. Barriers to disclosure in Asia and sub-Saharan Africa before the introduction of free ART were manifold. They included “…fear of accusations of infidelity, abandonment, discrimination and violence” (Medley et al. 2004: 299), sentiments that were confirmed by studies from Tanzania (Antelman et al. 2001, Maman et al. 2003, Greeff et al. 2008, Lugalla et al. 2008). In Tanzania, however, such reasons were supplemented by factors such as the fear of “stigma”, “divorce” and “violence” (Kilewo et al. 2001: 460), “fear of losing confidentiality”, “fear of social isolation”, “not wanting to worry others” (Antelman et al. 2001: 1870), fear of loss of support (Dilger 2005: 207ff; Maman et al. 2003: 376) and “denial” (Greeff et al. 2008: 319). The expectation to receive emotional, social or material support was mentioned as the main reason for disclosure within some studies conducted in Tanzania (MacNeil et al. 1999), India (Chandra et al. 2003), Nigeria (Akani and Erhabor 2006), South Africa (Visser et al. 2008) and Uganda (Ssali et al. 2010, Winchester et al. 2013). As pointed out in the literature, following the introduction of free ART, the process and outcomes of disclosure are still not perceived and experienced solely as positive, but remain surrounded by numerous fears and negative experiences (Greeff et al. 2008, Moyer 2012). In a recent case study focusing on an HIV-seropositive couple in Zanzibar, Moyer (2012) highlights disclosure as a highly complex process, emphasising that “…the logics of disclosure can only be understood in context” (Moyer 2012: 70). In the context of free ART availability, Lugalla et al. (2008) pointed out that antiretroviral medicines (ARVs) have changed people’s perceptions and attitudes and provide great hopes. This impression is shared by Moyer, though
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she emphasises that “…bringing dishonour to oneself or to one’s family is the main factor underlying self-stigma” (2012: 72), an issue that poses a great challenge to disclosure decisions. Moyer further argues that answers given by study respondents regarding disclosure attitudes and practices need to be carefully interpreted in the context of global norms and with respect to the possibility of desirability bias. Research approaches in settings of free ART availability differ greatly with respect to research questions, study sample, sample size, methodology and location of recruitment. Participants in the studies conducted by Lugalla et al. (2008), Greeff et al. (2008) and Moyer (2012), for example, were recruited from support groups or those engaged as activists. In some studies, access to ART was not even included as a selection criterion for participation (e.g. Greeff et al. 2008, Lugalla et al. 2008). Others included only pregnant women, focusing exclusively on the partner or a female relative as the choice for disclosure (Antelman et al. 2001), while Maman et al. (2003) included both HIV-positive and HIV-negative respondents. These differences impose great limitations on comparing results. The research upon which this article is based used a qualitative approach and relatively large sample size, with the aim of complementing the existing literature on HIV disclosure beliefs and practices. This is often based on heterogeneous, smaller samples, with a focus on individual case studies and moral life worlds. This article provides detailed and personal insights into the complex process of disclosure and non-disclosure as experienced by HIV-seropositive women2 in an era of free ART in Tanga region, Tanzania. Knowledge of status disclosure patterns among HIV-seropositive women (and men) is of great importance for public health programmes, not only regarding behaviour change and prevention of possible infection to others, but also in relation to increasing adherence to ART (Mills et al. 2006, Hardon 2006, Hardon et al. 2007, Kirsten et al. 2011), as well as for the development of appropriate counselling and support programmes for people living with HIV and AIDS (PLWHA). The women in our study sample had their own reasoning for disclosure and non-disclosure, which reflects complex and highly interdependent strands of individual decisionmaking processes. We show that decisions regarding the process and act of disclosure were not unequivocally shared among the women — nor even among the health personnel responsible for the implementation of counselling programmes — and are thus far less straightforward than anticipated by WHO. Thus, with this study, we aim to contribute to the overall neglected discussion concerning the impact of ART on the lives of HIV-seropositive people with regard to disclosure decisions, in the context of rapidly expanding mass treatment programmes. Methodology Study setting The research location for this study was Bombo Regional Hospital (BRH) in Tanga, Tanzania, which facilitates health care for the over 240 000 inhabitants of Tanga city and serves a catchment area of 1.6 million people in Tanga
African Journal of AIDS Research 2014, 13(3): 215–227
region (United Republic of Tanzania 2006). As with other government-run hospitals, BRH is mainly visited by patients who are financially less well situated than those — mainly of Arab and Indian ancestry — who are able to afford private hospitals. The Care and Treatment Centre (CTC) and Voluntary Counselling and Testing Centre (VCTC) for HIV and AIDS, inaugurated in June 2006, receive continuous support from both national and international stakeholders. Among the over 6 300 patients registered at the CTC in 2008, approximately 69% were female, and a total of 3 700 patients were enrolled on ART. To follow the national guidelines on ART and to ensure adherence (NACP 2005), the CTC staff request disclosure by patients to one person of their choice (a ‘clinic companion’), who should accompany them to the mandatory adherence counselling classes that are a prerequisite for ART eligibility. In May 2008, in the middle of our research project, a new policy required mandatory membership for patients to either the Tanga AIDS Working Group (TAWG) — a non-governmental organisation involved in HIV and AIDS care at the hospital compound — or the Red Cross, which led to forced disclosure in many cases. Most of the patients deferred to this policy submissively, with very few refusing, since they were threatened with a cessation in their medication supply if they failed to comply. However, soon after its initial zealous implementation, the rule was less strictly followed by hospital staff. The permanent research team for the study comprised the principal investigator (PI; first author), two female Tanzanian interviewers and two translators whose mother tongue is Kiswahili. Assistant medical officers (AMOs) were trained to conduct the recruitment of research participants and interviewers received training in qualitative research methods before data collection. During the course of the study, the research team faced several challenges. For example, participant observation at the department was an unprecedented experience, not only for the patients but also for the hospital staff. Observed staff seemed to fear judgment of their work performance. The emphasis on transparency with regard to the study procedure, however, soon led to trust in and acceptance of the research team as part of the department. A further challenge was the provision of an interview room on the same floor as the department, to ensure confidentiality and to avoid involuntary disclosure of the HIV-serostatus of patients visiting the hospital. The hospital staff generously provided a storeroom, which was furnished accordingly with the help of the janitor. As AMOs received no payment during the recruitment period and already carried a heavy workload due to the hospital being understaffed, constant motivation of the AMOs to recruit research participants posed a further challenge. Finally, a few patients — even though they had been fully informed about the study — were afraid of being secretly videotaped during the interview session, and of being broadcast on either radio or TV, which led to inhibited behaviour. After further elucidation of the study procedures, tension usually eased, giving way to curiosity and trust. Following a pre-test study in March 2008, final data collection was conducted from 15 April to 15 July 2008. A multi-method cross-sectional pilot approach was chosen,
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within which a total of 61 audio-recorded interviews and questionnaires with HIV-seropositive women, extensive participant observation, informal interviews and expert interviews were conducted. Data presented here derive from participant observation and questionnaires and related interviews with a total of 59 HIV-seropositive women on ART (2 interviewees were excluded from the analysis since they were not on ART). Ethical statements and protection of human research participants The study was conducted in accordance with the Helsinki Declaration (WMA 2008) and was approved by the Commission of Science and Technology (COSTECH) and the National Institute of Medical Research (NIMR) in Tanzania, as well as the Ethical Committee of the Göttingen University Medical School, University of Göttingen, Germany. All research assistants were informed about the study procedures and asked to provide written confirmation that they would ensure the confidentiality of the research participants before the study started. The study was explained to all staff members at the department, they received a clearance and consent form, and were asked for their approval before the beginning of the participant observation. The interviewed female HIV-seropositive participants received a clearance and consent form translated into Kiswahili, which was read out to them (this was due to the 33.5% illiteracy rate among Tanzanian women (UNAIDS/ UNICEF/WHO 2004). The women received an explanation about the use of the voice recorder during the interview and of the possibility to withdraw from the interview at any time. The interviews were conducted at CTC in a separate room to protect participants from involuntary disclosure to other hospital visitors, and for anonymity to ensure confidentiality of all data obtained. To ensure voluntary participation, no monetary incentives were given to either the patients or the recruiting AMOs during the time of data collection. Patients were offered a soda and a snack, worth approximately US$0.50 (600 Tanzanian shillings [TZS]), as a minor compensation. The recruiting AMOs did, however, receive approximately US$100 (TZS120 000) as an unexpected monetary compensation after completing data collection. Study participants Every female patient who consulted a doctor at CTC and who fulfilled the recruitment criteria was asked to participate in the study by an AMO who was randomly chosen for this task at the beginning of the day. Recruitment rules included that the participant be female, over 18 years of age, enrolled at CTC, had tested HIV-seropositive no earlier than at the last visit to CTC, be in a stable health condition to undergo an interview, and be willing to give written or finger-ink printed informed consent before the study started. A total of 104 female patients were asked to participate, of whom 59.6% agreed. A total of 61 interviews were conducted with female patients (excluding 1 drop-out), 59 of whom were enrolled on ART. Only one patient did not want us to record the interview due to fear of being broadcast, but consented to being included in the analysis. The study focussed exclusively on women for several reasons. First, women are particularly vulnerable to
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contracting HIV (ASAP/UNAIDS 2008, UNAIDS 2010), with a 2.5 times higher prevalence rate in the Tanga region than men had (ASAP/UNAIDS 2008). It is not only the biological reasons (Piwoz and Bentley 2005) that contribute to this imbalance, but also socio-economic and gender-related reasons, which affect patterns of condom use and caring practices for the sick. Second, as over twice as many women as men were enrolled at the CTC before the study began, recruitment of exclusively female participants had an organisational advantage. Third, a homogenous study population simplifies generalisation, while randomly chosen patients might have automatically led to an overrepresentation of women. Questionnaire and interview guidelines A questionnaire focusing on socio-demographic data, medical history, data on disclosure, and treatment with and adherence to ART was followed by a semi-structured guideline interview in Kiswahili. The questionnaire contained a detailed list of the possible significant others that respondents might inform about their HIV-positive status. Interviews were slightly modified according to the answers given in the questionnaires and covered several core topics: 1) mode of infection; 2) condom use; 3) verbal disclosure/non-disclosure to significant others; 4) reasons for disclosure/non-disclosure; 5) reactions to disclosure; and 6) detailed questions on ART. Partial disclosure was defined as disclosure to at least one person, but not to all of the possible persons to whom the respondent might disclose. Data collection and analysis The pre-tested interviewer-administered questionnaires, containing 34 questions, were read out by the interviewer to the interviewees in Kiswahili. A semi-structured interview followed, enlarging upon the answers received in the questionnaire. The mean duration of interviews was 27 minutes, with a maximum of 47 minutes. The voice-recorded interviews were then processed using the open source audio-editor software Audacity 1.2.6a (The Audacity Team; Dominic Mazzoni and Roger Dannenberg, Pittsburgh, USA). Transliteration rules designed by Kallmeyer and Schütze (1976) and Kuckartz (1999) were slightly modified and the audio-transliteration software F4 (Dr Dresing & Pehl GmbH, Marburg, Germany) was used. To ensure fluency in reading, the transliteration notes have been omitted from the quotations in this article. Where necessary for comprehensiveness of the quotations, additional information has been added in square brackets. Finally, interviews were translated from Kiswahili into English by independent translators. To ensure validity of the translations of the questionnaire responses and interviews, transcripts were translated into English, and then back-translated into Kiswahili for comparison. All interviews were thoroughly reviewed by the PI and discussed with the interviewer. Before analysis of the questionnaire with SPSS 15.0 for Windows (SPSS Inc., Chicago, USA), groups of significant others to whom women disclosed their status were identified. Decisions about group classification were influenced by the answers given by our interviewees during the
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interviews, which were in turn influenced by the distribution of responsibilities and trust in the context of disclosure and caring for the sick. The categories were created to achieve a clear overview of the many different people/groups being informed. Interviews were analysed by the PI according to the structural content analysis approach, as defined by Krippendorff (2008), with the qualitative text analysis software MAXQDA 2 (VERBI GmbH, Berlin, Germany). To ensure validity of the sub-codes, in vivo codes (Miles and Huberman 1994) were used in exceptional cases. Before final coding, inter-related reliability of the codes was ensured through the external coding of 7 randomly chosen interviews (12%) by an independent coder (Mayring 2000). Following this, the code guideline was finalised and all interviews were coded again. Coded data material was transferred from MAXQDA 2 to the statistics software SPSS 15.0, which calculated the frequencies of statements given. Multiple answers given to one category and the sub-categories of interest were respected. However, multiple identical answers within one category and the sub-categories were not taken into account. Results Description of the study sample The female study participants had a mean age of 39 years. Of all participants, 74.6% were Muslim and most (83.1%) lived in an urban area at the time of the interview. Participants belonged to a total of 20 different ethnic groups, with the Wasambaa, Wadigo and Wabondei — all originating in Tanga region — representing the majority (18.6%, 16.9% and 11.9% respectively). Among the remaining 17 different ethnic groups (n = 31; 52.7%), another 5 groups (10 women) originated in regions bordering Tanga region. However, more than half of the ethnic groups represented in the sample (12 different ethnic groups; n = 19) did not originate from areas bordering Tanga region, leading to the assumption of a relatively high intra-national migration rate among our interviewees or their families. In 2002, among the total population of the region, 64.1% had attended primary school, 5.3% secondary school, and 29.4% had never been to school (URT 2006). Taking gender and regional differences into account (URT 2006), our study sample seems to roughly equal the expected average of school education among women in Tanga region, with 78% of our participants having attended primary school. Most were working in the informal sector (45.8%), with a mean income per household per month of US$52. Another 13 women (22%) indicated that they were employed, while 30.5% were unemployed and responsible for the household and education of the children. A total of 19 participants were either married or living in a relationship at the time of the interviews; 36 women had once been married or had lived in a relationship in the past; and a further 4 women clearly indicated that they were single. Among our female interviewees, living conditions differed. However, responsibilities, duties and dependencies within relationships showed similar patterns. The married
African Journal of AIDS Research 2014, 13(3): 215–227
women usually lived together with husband and children. According to the women, the husband/male partner was (ideally) responsible for providing monetary support for the household. The women were responsible for educating the children and maintaining the household. Additionally, many of the women contributed to living expenses by maintaining their own livelihood with a small business in the informal sector; only a few were formally employed. Women often claimed additional economic dependency and needed support provided by their grown-up children or family of origin. In particular, during serious hardship, such as separation or severe sickness, a shift in dependencies was observed, with women moving back to their family of origin or relying on the help of immediate family members or their grown-up children (Dilger 2005, 2010). While healthcare support was provided by female family members, the main economic support was often facilitated by male family members. For the study participants, the mean time since receiving their HIV-seropositive diagnosis was 1.9 years, with a minimum of 20 days and a maximum of 10.9 years. Among the 45 women who could indicate the exact date of treatment commencement, the mean time on treatment was 1.2 years (minimum 14 days, maximum 2.9 years). All other women (n = 14) could only estimate their time on ART, leading to similar results, with a mean of 1.3 years (minimum 14 days, maximum 3 years). Of the women interviewed, a total of 45 had received voluntary counselling before and after testing, while 14 did not provide us with an answer. Of those who were counselled, 29 were counselled individually, six received couple counselling with partners, and 10 women were counselled in a group. Adherence counselling, which occurs after testing and is an additional requirement at the research location for eligibility to start ART, was received by 47 women (79.7%). Table 1 presents the socio-demographic characteristics of the 59 women included in the data analysis. Quantitative data on disclosure Among our participants and according to our definition, all women had partially disclosed their HIV-serostatus (n = 59; 100%), with 54 (91.5%) disclosing to more than 1 person. Twenty-four women (40.7%) experienced disclosure without consent, while 25 (42.4%) did not experience involuntary disclosure. Disclosure rates presented here also include disclosure to one mandatory clinic companion (see Table 2). Nearly half the interviewees informed immediate members of their family of origin, such as parents and siblings, summarised as the core family (n = 49; 83.1%), with another 27 women (45.8%) disclosing to their children. A total of 29 women (49.2%) had disclosed to their husband or partner, while 13 (22%) had intentionally not done so. Only 6 of the women (10.2%) had fully disclosed to their more extended relatives; 31 women (52.5%) had partially disclosed to their extended relatives and another 20 women (33.9%) had not disclosed at all (2 of whom [3.4%] either had no extended relatives or had no contact with or were unable to disclose to them). Additionally, 32 women (54.2%) indicated disclosure to a ndugu, a term in Kiswahili used to refer to people to whom one generally feels closely tied though not necessarily through a sanguine relationship,
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such as (distant) extended family members or friends. Partial disclosure to others (i.e. friends) was indicated by 45 women (76.3%), with 11 participants (18.6%) having not disclosed to others at all. Qualitative data on disclosure experiences Most women decided to take the HIV test due to ongoing sickness. While some acted on the advice of a third person, others claimed to have been motivated by a personal need to understand the reason for their persistent ill health. Some women informed significant others before testing, others tested in secret.
Table 1: Socio-demographic characteristics Variable Age
Copyright © NISC (Pty) Ltd
AJAR
ISSN 1608-5906 EISSN 1727-9445 http://dx.doi.org/10.2989/16085906.2014.952646
HIV-serostatus disclosure in the context of free antiretroviral therapy and socio-economic dependency: experiences among women living with HIV in Tanzania Leah F Bohle1,2*, Hansjörg Dilger3 and Uwe Groß1 Institute for Medical Microbiology, Göttingen University Medical School, University of Göttingen, Kreuzbergring 57, 37075 Göttingen, Lower Saxony, Germany 2Swiss Tropical and Public Health Institute (Swiss TPH), Swiss Centre for International Health (SCIH), Socinstrasse 57, PO Box 4002, Basel, Switzerland; associated Institute of the University of Basel 3Institute of Social and Cultural Anthropology, Freie Universität Berlin, Landoltweg 9-11, 14195 Berlin, Germany *Corresponding author, email: [email protected]
1
The worldwide implementation of free antiretroviral therapy (ART) raised great hopes among policy makers and health organisations about the positive changes it would bring about in attitudes and behaviours towards HIV and AIDS, as well as for infected people’s lives. A change in illness perception was anticipated, leading to the hypothesis of a possible change in disclosure rates, patterns and the choice of significant others to inform. In the era of free treatment availability in the United Republic of Tanzania, we examined reasons for disclosure and non-disclosure among HIV-seropositive women enrolled on ART and their choice of significant others to inform. In so doing, we contribute to the necessary yet neglected debate about the social impact of ART on the lives of infected women. The study, for which an ethnographic cross-sectional pilot approach was chosen, was conducted at the Care and Treatment Center (CTC) at Bombo Regional Hospital (BRH) in Tanga city, Tanzania. Data presented here derive from participant observation, questionnaires and semi-structured interviews conducted with 59 HIV-seropositive women on ART. Interestingly, and despite treatment availability, the choice of significant others to inform, as well as reasons for disclosure and non-disclosure, mirror findings from previous studies conducted before the introduction of free ART. The main reason for non-disclosure was fear of discrimination. The hope for social, economic or health support was the main motivation for disclosure, followed by the need for a ‘clinic companion’ in order to receive ART, as requested by hospital staff. Nevertheless, healthcare staff were not unanimous in thinking that disclosure is always beneficial, thus the recommended extent of disclosure varied. ART and concomitant factors were raised as an entirely new and significant reason for disclosure by interviewees. Finally, findings confirm that despite ART, disclosure remains a highly stressful event for women. Keywords: AIDS, HAART, living with antiretroviral therapy, qualitative, multi-method approach, HIV/AIDS policy, gender, East Africa
Introduction Antiretroviral therapy (ART) was introduced free of charge in Tanzania in 2004. With the implementation of universal treatment availability, launched through the ‘3 by 5’ initiative by the Joint United Nations Programme on HIV/AIDS (UNAIDS) and the World Health Organization (WHO, 2013), great hopes were raised by policy makers and public health advocates about the potentially positive social impact of ART (WHO 2003, 2006, 2013). It was expected that “… attitudes will change, and denial, stigma and discrimination will rapidly be reduced” (WHO 2003: 6). With access to free1 ART, and the concomitant expected reduction in discrimination and stigmatisation — the main barriers to disclosure — a change in disclosure rates and patterns, including the choice of significant others to inform, was anticipated. However, the need for support, often stated
as a major reason for disclosure, was also expected to diminish with improved ART access and health improvement, which could itself lead to a change in the choice of significant others to inform. These exclusively positive expectations of WHO were based solely on experiences in high income countries (WHO 2013: 3), and need to be interpreted in light of the WHO promotion of the ‘3 by 5’ initiative. By emphasising possible long-term advantages in terms of positive impact and outcome, the initiative aimed to motivate collaborators in the enormous undertaking ahead. However, as demonstrated by the current scientific literature on ART roll-out in Tanzania (Mattes 2011, Moyer 2012), and as outlined in this article, the process of disclosure and its outcomes in an era of free ART are far more complex than initially anticipated, and the initiative has not led to solely positive results.
African Journal of AIDS Research is co-published by NISC (Pty) Ltd and Routledge, Taylor & Francis Group
216
In Tanzania mainland in 2008, approximately 1.3 million people of the total population were estimated to be HIV-seropositive (TACAIDS 2010), with most being female (ASAP/UNAIDS 2008). Since the introduction of free ART in 2004 (AVERT 2011) and its countrywide distribution, the number of people on treatment dramatically increased from 2 000 people in the first year (TACAIDS 2009) to nearly 200 000 in 2009 (UNAIDS 2010). Disclosure rates and patterns were well researched before the availability of free ART in Tanzania (Lie and Biswalo 1996, MacNeil et al. 1999, Antelman et al. 2001, Kilewo et al. 2001, Maman et al. 2001, Maman et al. 2003, Dilger 2005, Greeff et al. 2008, de Klerk 2010). However, to date very few studies have exclusively examined disclosure practices of HIV-seropositive status after the introduction of free ART countrywide (Lugalla et al. 2008, Zou et al. 2009, Moyer 2012). The results of the few studies that have been conducted have proven astonishingly similar, with regard to the choice of significant others to inform, to those conducted before widespread ART availability (Lie and Biswalo 1996, Lugalla et al. 2008). Before the introduction of ART, disclosure mainly occurred among immediate family members (i.e. siblings and parents) and children, with relatively low rates of disclosure to partners. Extended relatives and friends only played a minor role in disclosure practices (Lie and Biswalo 1996, Greeff et al. 2008, Lugalla et al. 2008). Within these studies, however, the process of disclosure and the reasoning behind the choice of significant others to whom to disclose remain unclear. Barriers to disclosure in Asia and sub-Saharan Africa before the introduction of free ART were manifold. They included “…fear of accusations of infidelity, abandonment, discrimination and violence” (Medley et al. 2004: 299), sentiments that were confirmed by studies from Tanzania (Antelman et al. 2001, Maman et al. 2003, Greeff et al. 2008, Lugalla et al. 2008). In Tanzania, however, such reasons were supplemented by factors such as the fear of “stigma”, “divorce” and “violence” (Kilewo et al. 2001: 460), “fear of losing confidentiality”, “fear of social isolation”, “not wanting to worry others” (Antelman et al. 2001: 1870), fear of loss of support (Dilger 2005: 207ff; Maman et al. 2003: 376) and “denial” (Greeff et al. 2008: 319). The expectation to receive emotional, social or material support was mentioned as the main reason for disclosure within some studies conducted in Tanzania (MacNeil et al. 1999), India (Chandra et al. 2003), Nigeria (Akani and Erhabor 2006), South Africa (Visser et al. 2008) and Uganda (Ssali et al. 2010, Winchester et al. 2013). As pointed out in the literature, following the introduction of free ART, the process and outcomes of disclosure are still not perceived and experienced solely as positive, but remain surrounded by numerous fears and negative experiences (Greeff et al. 2008, Moyer 2012). In a recent case study focusing on an HIV-seropositive couple in Zanzibar, Moyer (2012) highlights disclosure as a highly complex process, emphasising that “…the logics of disclosure can only be understood in context” (Moyer 2012: 70). In the context of free ART availability, Lugalla et al. (2008) pointed out that antiretroviral medicines (ARVs) have changed people’s perceptions and attitudes and provide great hopes. This impression is shared by Moyer, though
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she emphasises that “…bringing dishonour to oneself or to one’s family is the main factor underlying self-stigma” (2012: 72), an issue that poses a great challenge to disclosure decisions. Moyer further argues that answers given by study respondents regarding disclosure attitudes and practices need to be carefully interpreted in the context of global norms and with respect to the possibility of desirability bias. Research approaches in settings of free ART availability differ greatly with respect to research questions, study sample, sample size, methodology and location of recruitment. Participants in the studies conducted by Lugalla et al. (2008), Greeff et al. (2008) and Moyer (2012), for example, were recruited from support groups or those engaged as activists. In some studies, access to ART was not even included as a selection criterion for participation (e.g. Greeff et al. 2008, Lugalla et al. 2008). Others included only pregnant women, focusing exclusively on the partner or a female relative as the choice for disclosure (Antelman et al. 2001), while Maman et al. (2003) included both HIV-positive and HIV-negative respondents. These differences impose great limitations on comparing results. The research upon which this article is based used a qualitative approach and relatively large sample size, with the aim of complementing the existing literature on HIV disclosure beliefs and practices. This is often based on heterogeneous, smaller samples, with a focus on individual case studies and moral life worlds. This article provides detailed and personal insights into the complex process of disclosure and non-disclosure as experienced by HIV-seropositive women2 in an era of free ART in Tanga region, Tanzania. Knowledge of status disclosure patterns among HIV-seropositive women (and men) is of great importance for public health programmes, not only regarding behaviour change and prevention of possible infection to others, but also in relation to increasing adherence to ART (Mills et al. 2006, Hardon 2006, Hardon et al. 2007, Kirsten et al. 2011), as well as for the development of appropriate counselling and support programmes for people living with HIV and AIDS (PLWHA). The women in our study sample had their own reasoning for disclosure and non-disclosure, which reflects complex and highly interdependent strands of individual decisionmaking processes. We show that decisions regarding the process and act of disclosure were not unequivocally shared among the women — nor even among the health personnel responsible for the implementation of counselling programmes — and are thus far less straightforward than anticipated by WHO. Thus, with this study, we aim to contribute to the overall neglected discussion concerning the impact of ART on the lives of HIV-seropositive people with regard to disclosure decisions, in the context of rapidly expanding mass treatment programmes. Methodology Study setting The research location for this study was Bombo Regional Hospital (BRH) in Tanga, Tanzania, which facilitates health care for the over 240 000 inhabitants of Tanga city and serves a catchment area of 1.6 million people in Tanga
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region (United Republic of Tanzania 2006). As with other government-run hospitals, BRH is mainly visited by patients who are financially less well situated than those — mainly of Arab and Indian ancestry — who are able to afford private hospitals. The Care and Treatment Centre (CTC) and Voluntary Counselling and Testing Centre (VCTC) for HIV and AIDS, inaugurated in June 2006, receive continuous support from both national and international stakeholders. Among the over 6 300 patients registered at the CTC in 2008, approximately 69% were female, and a total of 3 700 patients were enrolled on ART. To follow the national guidelines on ART and to ensure adherence (NACP 2005), the CTC staff request disclosure by patients to one person of their choice (a ‘clinic companion’), who should accompany them to the mandatory adherence counselling classes that are a prerequisite for ART eligibility. In May 2008, in the middle of our research project, a new policy required mandatory membership for patients to either the Tanga AIDS Working Group (TAWG) — a non-governmental organisation involved in HIV and AIDS care at the hospital compound — or the Red Cross, which led to forced disclosure in many cases. Most of the patients deferred to this policy submissively, with very few refusing, since they were threatened with a cessation in their medication supply if they failed to comply. However, soon after its initial zealous implementation, the rule was less strictly followed by hospital staff. The permanent research team for the study comprised the principal investigator (PI; first author), two female Tanzanian interviewers and two translators whose mother tongue is Kiswahili. Assistant medical officers (AMOs) were trained to conduct the recruitment of research participants and interviewers received training in qualitative research methods before data collection. During the course of the study, the research team faced several challenges. For example, participant observation at the department was an unprecedented experience, not only for the patients but also for the hospital staff. Observed staff seemed to fear judgment of their work performance. The emphasis on transparency with regard to the study procedure, however, soon led to trust in and acceptance of the research team as part of the department. A further challenge was the provision of an interview room on the same floor as the department, to ensure confidentiality and to avoid involuntary disclosure of the HIV-serostatus of patients visiting the hospital. The hospital staff generously provided a storeroom, which was furnished accordingly with the help of the janitor. As AMOs received no payment during the recruitment period and already carried a heavy workload due to the hospital being understaffed, constant motivation of the AMOs to recruit research participants posed a further challenge. Finally, a few patients — even though they had been fully informed about the study — were afraid of being secretly videotaped during the interview session, and of being broadcast on either radio or TV, which led to inhibited behaviour. After further elucidation of the study procedures, tension usually eased, giving way to curiosity and trust. Following a pre-test study in March 2008, final data collection was conducted from 15 April to 15 July 2008. A multi-method cross-sectional pilot approach was chosen,
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within which a total of 61 audio-recorded interviews and questionnaires with HIV-seropositive women, extensive participant observation, informal interviews and expert interviews were conducted. Data presented here derive from participant observation and questionnaires and related interviews with a total of 59 HIV-seropositive women on ART (2 interviewees were excluded from the analysis since they were not on ART). Ethical statements and protection of human research participants The study was conducted in accordance with the Helsinki Declaration (WMA 2008) and was approved by the Commission of Science and Technology (COSTECH) and the National Institute of Medical Research (NIMR) in Tanzania, as well as the Ethical Committee of the Göttingen University Medical School, University of Göttingen, Germany. All research assistants were informed about the study procedures and asked to provide written confirmation that they would ensure the confidentiality of the research participants before the study started. The study was explained to all staff members at the department, they received a clearance and consent form, and were asked for their approval before the beginning of the participant observation. The interviewed female HIV-seropositive participants received a clearance and consent form translated into Kiswahili, which was read out to them (this was due to the 33.5% illiteracy rate among Tanzanian women (UNAIDS/ UNICEF/WHO 2004). The women received an explanation about the use of the voice recorder during the interview and of the possibility to withdraw from the interview at any time. The interviews were conducted at CTC in a separate room to protect participants from involuntary disclosure to other hospital visitors, and for anonymity to ensure confidentiality of all data obtained. To ensure voluntary participation, no monetary incentives were given to either the patients or the recruiting AMOs during the time of data collection. Patients were offered a soda and a snack, worth approximately US$0.50 (600 Tanzanian shillings [TZS]), as a minor compensation. The recruiting AMOs did, however, receive approximately US$100 (TZS120 000) as an unexpected monetary compensation after completing data collection. Study participants Every female patient who consulted a doctor at CTC and who fulfilled the recruitment criteria was asked to participate in the study by an AMO who was randomly chosen for this task at the beginning of the day. Recruitment rules included that the participant be female, over 18 years of age, enrolled at CTC, had tested HIV-seropositive no earlier than at the last visit to CTC, be in a stable health condition to undergo an interview, and be willing to give written or finger-ink printed informed consent before the study started. A total of 104 female patients were asked to participate, of whom 59.6% agreed. A total of 61 interviews were conducted with female patients (excluding 1 drop-out), 59 of whom were enrolled on ART. Only one patient did not want us to record the interview due to fear of being broadcast, but consented to being included in the analysis. The study focussed exclusively on women for several reasons. First, women are particularly vulnerable to
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contracting HIV (ASAP/UNAIDS 2008, UNAIDS 2010), with a 2.5 times higher prevalence rate in the Tanga region than men had (ASAP/UNAIDS 2008). It is not only the biological reasons (Piwoz and Bentley 2005) that contribute to this imbalance, but also socio-economic and gender-related reasons, which affect patterns of condom use and caring practices for the sick. Second, as over twice as many women as men were enrolled at the CTC before the study began, recruitment of exclusively female participants had an organisational advantage. Third, a homogenous study population simplifies generalisation, while randomly chosen patients might have automatically led to an overrepresentation of women. Questionnaire and interview guidelines A questionnaire focusing on socio-demographic data, medical history, data on disclosure, and treatment with and adherence to ART was followed by a semi-structured guideline interview in Kiswahili. The questionnaire contained a detailed list of the possible significant others that respondents might inform about their HIV-positive status. Interviews were slightly modified according to the answers given in the questionnaires and covered several core topics: 1) mode of infection; 2) condom use; 3) verbal disclosure/non-disclosure to significant others; 4) reasons for disclosure/non-disclosure; 5) reactions to disclosure; and 6) detailed questions on ART. Partial disclosure was defined as disclosure to at least one person, but not to all of the possible persons to whom the respondent might disclose. Data collection and analysis The pre-tested interviewer-administered questionnaires, containing 34 questions, were read out by the interviewer to the interviewees in Kiswahili. A semi-structured interview followed, enlarging upon the answers received in the questionnaire. The mean duration of interviews was 27 minutes, with a maximum of 47 minutes. The voice-recorded interviews were then processed using the open source audio-editor software Audacity 1.2.6a (The Audacity Team; Dominic Mazzoni and Roger Dannenberg, Pittsburgh, USA). Transliteration rules designed by Kallmeyer and Schütze (1976) and Kuckartz (1999) were slightly modified and the audio-transliteration software F4 (Dr Dresing & Pehl GmbH, Marburg, Germany) was used. To ensure fluency in reading, the transliteration notes have been omitted from the quotations in this article. Where necessary for comprehensiveness of the quotations, additional information has been added in square brackets. Finally, interviews were translated from Kiswahili into English by independent translators. To ensure validity of the translations of the questionnaire responses and interviews, transcripts were translated into English, and then back-translated into Kiswahili for comparison. All interviews were thoroughly reviewed by the PI and discussed with the interviewer. Before analysis of the questionnaire with SPSS 15.0 for Windows (SPSS Inc., Chicago, USA), groups of significant others to whom women disclosed their status were identified. Decisions about group classification were influenced by the answers given by our interviewees during the
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interviews, which were in turn influenced by the distribution of responsibilities and trust in the context of disclosure and caring for the sick. The categories were created to achieve a clear overview of the many different people/groups being informed. Interviews were analysed by the PI according to the structural content analysis approach, as defined by Krippendorff (2008), with the qualitative text analysis software MAXQDA 2 (VERBI GmbH, Berlin, Germany). To ensure validity of the sub-codes, in vivo codes (Miles and Huberman 1994) were used in exceptional cases. Before final coding, inter-related reliability of the codes was ensured through the external coding of 7 randomly chosen interviews (12%) by an independent coder (Mayring 2000). Following this, the code guideline was finalised and all interviews were coded again. Coded data material was transferred from MAXQDA 2 to the statistics software SPSS 15.0, which calculated the frequencies of statements given. Multiple answers given to one category and the sub-categories of interest were respected. However, multiple identical answers within one category and the sub-categories were not taken into account. Results Description of the study sample The female study participants had a mean age of 39 years. Of all participants, 74.6% were Muslim and most (83.1%) lived in an urban area at the time of the interview. Participants belonged to a total of 20 different ethnic groups, with the Wasambaa, Wadigo and Wabondei — all originating in Tanga region — representing the majority (18.6%, 16.9% and 11.9% respectively). Among the remaining 17 different ethnic groups (n = 31; 52.7%), another 5 groups (10 women) originated in regions bordering Tanga region. However, more than half of the ethnic groups represented in the sample (12 different ethnic groups; n = 19) did not originate from areas bordering Tanga region, leading to the assumption of a relatively high intra-national migration rate among our interviewees or their families. In 2002, among the total population of the region, 64.1% had attended primary school, 5.3% secondary school, and 29.4% had never been to school (URT 2006). Taking gender and regional differences into account (URT 2006), our study sample seems to roughly equal the expected average of school education among women in Tanga region, with 78% of our participants having attended primary school. Most were working in the informal sector (45.8%), with a mean income per household per month of US$52. Another 13 women (22%) indicated that they were employed, while 30.5% were unemployed and responsible for the household and education of the children. A total of 19 participants were either married or living in a relationship at the time of the interviews; 36 women had once been married or had lived in a relationship in the past; and a further 4 women clearly indicated that they were single. Among our female interviewees, living conditions differed. However, responsibilities, duties and dependencies within relationships showed similar patterns. The married
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women usually lived together with husband and children. According to the women, the husband/male partner was (ideally) responsible for providing monetary support for the household. The women were responsible for educating the children and maintaining the household. Additionally, many of the women contributed to living expenses by maintaining their own livelihood with a small business in the informal sector; only a few were formally employed. Women often claimed additional economic dependency and needed support provided by their grown-up children or family of origin. In particular, during serious hardship, such as separation or severe sickness, a shift in dependencies was observed, with women moving back to their family of origin or relying on the help of immediate family members or their grown-up children (Dilger 2005, 2010). While healthcare support was provided by female family members, the main economic support was often facilitated by male family members. For the study participants, the mean time since receiving their HIV-seropositive diagnosis was 1.9 years, with a minimum of 20 days and a maximum of 10.9 years. Among the 45 women who could indicate the exact date of treatment commencement, the mean time on treatment was 1.2 years (minimum 14 days, maximum 2.9 years). All other women (n = 14) could only estimate their time on ART, leading to similar results, with a mean of 1.3 years (minimum 14 days, maximum 3 years). Of the women interviewed, a total of 45 had received voluntary counselling before and after testing, while 14 did not provide us with an answer. Of those who were counselled, 29 were counselled individually, six received couple counselling with partners, and 10 women were counselled in a group. Adherence counselling, which occurs after testing and is an additional requirement at the research location for eligibility to start ART, was received by 47 women (79.7%). Table 1 presents the socio-demographic characteristics of the 59 women included in the data analysis. Quantitative data on disclosure Among our participants and according to our definition, all women had partially disclosed their HIV-serostatus (n = 59; 100%), with 54 (91.5%) disclosing to more than 1 person. Twenty-four women (40.7%) experienced disclosure without consent, while 25 (42.4%) did not experience involuntary disclosure. Disclosure rates presented here also include disclosure to one mandatory clinic companion (see Table 2). Nearly half the interviewees informed immediate members of their family of origin, such as parents and siblings, summarised as the core family (n = 49; 83.1%), with another 27 women (45.8%) disclosing to their children. A total of 29 women (49.2%) had disclosed to their husband or partner, while 13 (22%) had intentionally not done so. Only 6 of the women (10.2%) had fully disclosed to their more extended relatives; 31 women (52.5%) had partially disclosed to their extended relatives and another 20 women (33.9%) had not disclosed at all (2 of whom [3.4%] either had no extended relatives or had no contact with or were unable to disclose to them). Additionally, 32 women (54.2%) indicated disclosure to a ndugu, a term in Kiswahili used to refer to people to whom one generally feels closely tied though not necessarily through a sanguine relationship,
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such as (distant) extended family members or friends. Partial disclosure to others (i.e. friends) was indicated by 45 women (76.3%), with 11 participants (18.6%) having not disclosed to others at all. Qualitative data on disclosure experiences Most women decided to take the HIV test due to ongoing sickness. While some acted on the advice of a third person, others claimed to have been motivated by a personal need to understand the reason for their persistent ill health. Some women informed significant others before testing, others tested in secret.
Table 1: Socio-demographic characteristics Variable Age
