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Background: Knowledge of HIV status is crucial for HIV prevention and management in marital relationships. Yet some marital partners of people living with HIV decline HIV testing despite knowing the HIV-positive status of their partners. To date, little research has explored the reasons for this. Methods: An exploratory qualitative study was undertaken in Lusaka, Zambia, between March 2010 and September 2011, nested within a larger ethnographic study. In-depth interviews were held with individuals who knew the HIV-positive status of their marital partners but never sought HIV testing (n = 30) and HIV service providers of a public sector clinic (n = 10). A focus group discussion was also conducted with eight (8) lay HIV counsellors. Data was transcribed, coded and managed using ATLAS.ti and analysed using latent content analysis. Results: The overarching barrier to uptake of HIV testing was study participants’ perception of their physical health, reinforced by uptake of herbal remedies and conventional non-HIV medication to mitigate perceived HIV-related symptoms. They indicated willingness to test for HIV if they noticed a decline in physical health and other alternative forms of care became ineffective. Also, some study participants viewed themselves as already infected with HIV on account of the HIV-positive status of their marital partners, with some opting for faith healing to get ‘cured’. Other barriers were the perceived psychological burden of living with HIV, modulated by lay belief that knowledge of HIV-positive status led to rapid physical deterioration of health. Perceived inability to sustain uptake of life-long treatment – influenced by a negative attitude towards treatment – further undermined uptake of HIV testing. Self-stigma, which manifested itself through fear of blame and a need to maintain moral credibility in marital relationships, also undermined uptake of HIV testing. Conclusions: Improving uptake of HIV testing requires a multi-pronged approach that addresses self-stigma, lay risk perceptions, negative treatment and health beliefs and the perceived psychological burden of living with HIV. Strengthening couple HIV testing services, including addressing conflict and addressing gendered power relationships are also warranted to facilitate joint knowledge, acceptance and management of HIV status in marital relationships.
This was an exploratory qualitative study nested within a larger 18-month ethnographic study on factors influencing uptake of HIV testing, non-initiation of and retention in ART care. This study design was suitable for identifying and eliciting in-depth insight into factors hindering uptake of HIV testing by individuals who knew the HIV-positive status of their marital partners. In this study, marital partnership referred to a man and women who were officially married whether under statutory or customary law, and were living together as husband and wife. The study was conducted in a low-income, high-density urban setting, located about 10 km south of the Business District in Lusaka, the capital city of Zambia. Based on field observations, common physical features of the study setting are a crowded mix of formal and informal housing structures, shops and market stalls, one main tarred road with adjoining dusty, unlabeled roads that become water-logged and muddy during the rainy season, and poor solid waste disposal facilities. The majority of the residents have developed both strong kin and non-kin social network relationships. Most of the households are large, in part due to the negative impact of HIV, with some individuals growing up as orphans under the care of extended family members. Although not all family members live together, they still maintain reciprocal social and economic support ties. Other social network relationships are a product of religious affiliations and occupational and social lifestyle activities. Public social amenities are non-existent in the area. Social life often revolves around spending time in the bars, night clubs and make-shift drinking places; these places often serve as one source of sexual network relationships. Economically, the living conditions of local residents are mixed. Some people are formally employed in government and the private sector. The majority of the people earn their living in the informal sector of the economy, mostly as traders selling fruits, vegetables, meat products, fish, charcoal and second-hand clothes in the city centre markets, other markets within Lusaka, and in the open-air local markets. The unemployment situation is further exacerbated by rural–urban migration, as people move into the city in search of job opportunities and a better life. Health services are mainly accessed from a public health centre. The health centre has an out-patient unit, an in-patient unit with female and male admission wards, ‘opt-in’ HIV counselling and testing (HCT) unit, an Antiretroviral Therapy (ART) unit, a Maternal and Child Health (MCH) unit which provides antenatal and postnatal health services, and a Tuberculosis (TB) screening and treatment unit. In addition, mobile HCT services in the area are periodically provided by non-governmental HIV service providers. HCT and ART services are provided free of charge. Free couple HCT services are provided at the MCH unit and the opt-in HCT unit of the health centre. The health centre also previously housed a couple HCT project implemented by a local organisation called Zambia Emory HIV research project (ZEHRP). By March 2010, when this qualitative study started, the public health centre had more than 5,000 people on ART and more than 5,000 on pre-ART. There is also a plethora of privately owned clinics and drug stores. Other health service providers in the area include herbalists, traditional doctors and faith healers, some of whom advertise their services, including ‘cure’ of HIV and sexually transmitted infections (STIs). Tied to healing is Christianity, which is the dominant religion in the area, with a myriad of charismatic evangelical Pentecostal churches, some of which provide faith healing sessions for people suffering from different health conditions, including HIV. Marital partners of PLHIV were identified, contacted and recruited through their marital partners receiving ART care at a local health centre. A two stage-recruitment strategy was used to recruit this group of study participants. First, ART clinic staff purposively identified PLHIV who disclosed their status to their marital partners but whose partners opted not to seek HIV testing. Second, PLHIV were then asked to recruit, on behalf of the study, their partners for interviews. Only those spouses who agreed to participate were contacted by the research team to schedule time and location for interviews. Using snowball and opportunistic sampling techniques, health care workers (nurses and lay HCT counsellors) who were involved in the delivery of HCT and ART services were identified and recruited from the various units of the public health centre. Data was collected between March 2010 and September 2011 as part of the first author’s doctoral studies in epidemiology. To ensure consistency in the administration of the research tools, all interviews were conducted by the first author, a social scientist with extensive experience in designing and conducting qualitative research. Thirty-eight (38) PLHIV and receiving ART at the local public health center were approached to recruit their marital partners for the study. Thirty-four (34) agreed to talk to and recruit their spouses for the study, out of which thirty (30) participated in open ended, face-to-face, audio-recorded in-depth interviews. The first author lived in the study setting for the entire period of data collection (18 months) and this enabled him to win the trust and confidence of the study participants, thereby enabling them to open up and share their perspectives. In addition, in-depth interviews were held with health care workers involved in the provision of HCT and ART services (n = 10). One focus group discussion (FGD) was also conducted with the health facility-based lay HCT counsellors (n = 8). Five (5) of the HCT counsellors were women and the rest were men. No repeat interviews or FGDs were conducted with study participants. The main research question asked was: “What are the reasons for not seeking HIV testing despite knowing the HIV-positive status of your/their spouses?” Interviews with health care workers and FGD with HCT counsellors were conducted in English while interviews with spouses of PLHIV were conducted in Nyanja – the local language mainly spoken in the area. The in-depth interviews lasted between 30 and 45 min and the FGD with HIV counsellors lasted about an hour. Data collection and preliminary data analysis was a cyclical process. The data collection tools were first piloted and fine-tuned. During actual data collection, interview data informed ensuing interviews and data collection was ended when emerging data became repetitive. All interviews conducted in local language were translated and all interviews were transcribed verbatim. The transcripts were then entered into, and organised and managed using, ATLAS.ti version 6. The data was then coded inductively. The first author developed the coding framework and coded all the data, which were reviewed and approved by the other authors. Team meetings were used to discuss and resolve differences regarding the coding framework and the codes and themes generated. Qualitative latent content analysis [26] was used to analyse and interpret the data. Latent content analysis involves an analysis of the relationship aspects of the textual data and an interpretation of the underlying meaning of the text, referred to as the latent content [26]. All interview and FGD transcripts constituted our unit of analysis. Unit of analysis refers to all words and phrases of the interview and FGD transcripts [26]. They were read several times to create a sense of the whole data [26, 27]. Within-case and across-case analysis [28] of the interview transcripts was undertaken to inductively generate concepts across the individual interviews. For each interview transcript, we conducted within-case analysis and retrieved and coded reasons for not seeking HIV testing despite knowing the HIV-positive status of a marital partner. Thereafter, we conducted across-case analysis by comparing and contrasting participants’ reasons. Similar codes were then put together to form categories. A category is therefore a group of content that shares a commonality; it is a thread throughout the codes [26]. Themes were then developed by interpreting categories for their underlying meaning. The themes are, therefore, the expression of the latent content (underlying meaning) of the textual data [26]. For instance, codes such as ‘feeling healthy’, ‘not sick’, ‘nothing wrong in the body’ were categorised as ‘state of physical health’ as described in the results section of the paper. The theme generated from this is ‘lay wellness and illness beliefs.’ These themes are described in the discussion section of the paper. Three reference points were used to identify emergent themes: recurrence, repetition and forcefulness of ideas within the interview data [29]. Through this analytical strategy, we were able to identify themes that cut across study participants but were still grounded in individual perspectives [28]. Lastly, we selected interview and group discussion excerpts that best illustrated these themes. Arising from the rapport and relationships created with study participants during ethnographic fieldwork, emerging findings were shared with study participants. The study was approved by the Ethics Committee in Basel (Ethik-Kommission beider Basel) and the University of Zambia School of Humanities and Social Sciences Research Ethics Committee, as part of the research project ‘Improving equity of access to HIV care and treatment in Zambia’. Written informed consent was obtained from all study participants. To ensure confidentiality, interviews and FGD with health centre staff took place in private spaces of the health facility while interviews with marital partners of PLHIV took place at locations of their choice. Some preferred to be interviewed at home, in the absence of their spouses; others preferred to be interviewed at neutral locations such as private spaces at public health centre and homes study participants’ friends and relatives. To protect the identity of study participants, all identifying information was excluded from the interview transcripts. Study participants were given a reimbursement of ZMK50.00 (about US$10 at the time) as compensation for their time. In addition and when appropriate, study participants were provided with refreshments and given transport reimbursement of ZMK50.00 (about US$10 at the time) when interviews were conducted outside their homes.
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