We conducted a qualitative sub-study with participants enrolled in the Home-Based AIDS Care (HBAC) project in rural Eastern Uganda between September 2006 and June 2007. HBAC delivered free HIV and TB care and support services to the homes of approximately 1,000 participants in the project catchment area that covered a 100 km radius around Tororo town. Subsistence agriculture was the main livelihood of the people in the area; nearly half of them lived below the poverty line and the majority had not received education beyond primary school level (Uganda Bureau of Statistics 2003).
HBAC participants were recruited in 2003 from The AIDS Support Organisation (TASO), a non-governmental organization that has provided care and support services for HIV-infected people in Uganda and the Tororo area since 1987. TASO clients >18 years-old and with a CD4 cell count <250 cells/μL or in WHO disease stage 3 or 4 were offered first-line ART. HBAC study participants were enrolled at the HBAC study clinic between May 2003 and June 2006, and received ART and tuberculosis drugs at their homes on a weekly basis. No future routine clinic visits were scheduled but participants could come or be referred to the clinic or hospital for treatment of symptoms. Research counselors visited participants quarterly to collect behavioral data and to provide ongoing support on adherence to ART and sexual risk behavior. They also provided individual or couple home-based HIV counseling and testing to all household members of HBAC participants, including spouses. Confidentiality was emphasized in all counseling sessions.
Prior to HBAC, advice and counseling had been given by TASO on condom use as well as on abstinence as the most effective HIV transmission prevention strategies for sexually active persons. On joining HBAC, participants were provided again with information detailing a range of HIV risk reduction options including condom use, abstinence, partner testing, disclosure of HIV status to current or new/potential sexual partners, being faithful to one HIV-tested partner, reducing the number of sexual partners, reduced frequency of sex, alternative forms of sexual expression, and treatment of STIs. In addition, study participants were counseled at enrolment about the potential effects of ART on restoring health, fertility and sexual activity, and were referred to the hospital family planning (FP) clinic adjacent to the study clinic if interested in using FP other than condoms. The FP clinic provided standard FP counseling and FP services for as many clinic visits as necessary. Contraceptives were supplied by the Ministry of Health and included combined oral and progesterone-only pills, hormonal injectables and implants, intra-uterine devices and tubal ligation and condoms. Condoms were also available for free from the FP clinic as well as from all HBAC clinicians, counselors and home visitors, both at the study clinic and during home visits.
In-depth interviews were conducted among 29 HBAC women on ART and 16 of their partners to explore personal beliefs and experiences. Participants were purposefully selected to provide a range of views and were based on ART and pregnancy status in the last 12 months. In all they included: 21 women on ART who had become pregnant and/or had delivered or aborted in the last 12 months and 11 of their partners; and 8 women who had not become pregnant and 5 of their partners. In the quotes reported in the 'results section', participants (women and men) were labeled as either 'pregnant', 'not pregnant', 'aborted', or 'delivered'. Counselors attempted to locate all partners of women selected for the study, but not all women had partners able to participate. The 16 male partners interviewed were those who not only agreed to participate; but also were in an ongoing and/or stable relationship with their partners; and were available for the interviews. No women refused to be interviewed. Data responses for key themes reached saturation with the 45 selected respondents.
Interviews were carried out in the participants' native languages and lasted about 1 1/2 hours. Open-ended questions included: number of living children at home, desire for children and factors related to pregnancy, reactions to pregnancy, relationship with partner, experience with death of a child, relationship between ART and pregnancy, and experiences with family planning. In-depth interviews were transcribed, translated into English, and coded by an analysis team. Guidelines that included three distinct analysis stages were used for thematic coding as the primary analytic strategy [18
]. After reading two transcripts, the analysis team members collaboratively developed a codebook of themes based on the interview topics as well as those emerging from the data. Two more transcripts were then reviewed to include additional topic areas and themes. This process of thematic coding was repeated five times until the codebook reached a stage where no new themes or topic areas emerged [18
]. To ensure inter-rater consistency, the analysis team compared their individual coding of the same transcripts and a coding concordance was calculated. All transcripts were then coded using the final version of the codebook and merged using NVivo software (version 2.0, QSR International Pty. Ltd, Victoria, Australia). After coding, the merged project was transferred to NVivo version 7 for further management. Themes were summarized across participants, and analysis focused on identifying dominant explanations. Interactive discussions were held with the analysis team, who were from diverse backgrounds (physician, social scientists, counselors) to validate data interpretations and resolve any discrepancies.
The study was approved by the Institutional Review Boards of the Uganda Virus Research Institute, Uganda, and the Centers for Disease Control and Prevention, Atlanta, Georgia, USA. All clients provided written informed consent for interview and recording.