Menu
Menu
Menu
Menu
Background: Swaziland has one of the highest HIV prevalence rates in sub-Saharan Africa, 26 % of the adult population is infected with HIV. The prevalence is highest among pregnant women, at 41.1 %. According to Swaziland’s prevention of mother-to-child transmission (PMTCT) guidelines, approximately 50 % of pregnant women are eligible for antiretroviral therapy (ART) by CD4 criteria (<350 cells/ml). Studies have shown that most mother-to-child transmission and postnatal deaths occur among women who are eligible for ART. Therefore, ensuring that ART eligible women are initiated on ART is critical for PMTCT and for mother and baby survival. This study provides insight into the challenges of lifelong ART initiation among pregnant women under Option A in Swaziland. We believe that these challenges and lessons learned from initiating women on lifelong ART under Option A are relevant and important to consider during implementation of Option B+. Methods: HIV-positive, treatment-eligible, postpartum women and nurses were recruited within maternal and child health (MCH) units using convenience and purposive sampling. Participants came from both urban and rural areas. Focus group discussions (FGDs) and structured interviews using a short answer questionnaire were conducted to gain an understanding of the challenges experienced when initiating lifelong ART. Seven FGDs (of 5-11 participants) were conducted, four FGDs with nurses, two FGDs with women who initiated ART, and one FGD with women who did not initiate ART. A total of 83 interviews were conducted; 50 with women who initiated ART and 33 with women who did not initiate. Data collection with the women was conducted in the local language of SiSwati and data collection with the nurses was done in English. FGDs were audio-recorded and simultaneously transcribed and translated into English. Analysis was conducted using thematic analysis. Transcripts were coded by two researchers in the qualitative software program MAXqda v.10. Thematic findings were illustrated using verbatim quotes which were selected on the basis of being representative of a specific theme. The short-answer interview questionnaire included specific questions about the different steps in the woman's experience initiating ART; therefore the responses for each question were analyzed separately. Results: Findings from the study highlight women feeling overwhelmed by the lifetime commitment of ART, feeling "healthy" when asked to initiate ART, preference for short-course prophylaxis and fear of side effects (body changes). Also, the preference for nurses to determine on an individual basis the number of counseling appointments a woman needs before initiating ART, more information about HIV and ART needed at the community level, and the need to educate men about HIV and ART. Conclusion: Women face a myriad of challenges initiating lifelong ART. Understanding women's concerns will aid in developing effective counseling messages, designing appropriate counseling structures, understanding where additional support is needed in the process of initiating ART, and knowing who to target for community level messages.
The study was conducted in the four regions of Swaziland: Shiselweni, Lubombo, Hhohho, and Manzini. Study sites with the highest number of annual deliveries in both urban and rural locations were purposively selected. The study participants included nurses and HIV-positive, postpartum women who were eligible for ART during their pregnancy under Option A (CD <350 and/or WHO Stage III/IV disease). The study recruited both women who did and women who did not initiate ART during their pregnancy. Nurses who participated in the study were employed in the maternal and child health unit for a minimum of 1 year. Data with the HIV-positive, postpartum women were collected through individual interviews and focus group discussions (FGDs) in the local language of SiSwati and FGDs with nurses were conducted in English. The study originated after review of routine program M&E data by the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF) which showed that HIV-positive ART-eligible pregnant women were not initiating ART. The study was designed to answer the main question of why women were choosing not to initiate ART when they understood that it would prolong their lives and potentially prevent transmission to their unborn infants. A free listing of potential reasons was made by the study team and health care providers were consulted to ensure all critical topic areas were included. The data collection tools were then drafted and piloted at non-study sites to ensure that questions were correctly understood and to estimate the time to complete the interviews and FGDs. Short-answer questionnaires were used to conduct individual interviews with women in the maternity ward after they had delivered their child and before being discharged. Since many women do not return for post-natal care (especially those who did not initiate ART), interviewing women in the maternity ward provided an opportunity to interview more women who did not initiate ART. Considering that these women had recently given birth, the study team did not feel it was appropriate to administer an in-depth interview and instead opted for a short answer questionnaire which would take less time to answer the priority research questions. The short answer questionnaire included a combination of open- and closed-ended questions to understand women’s individual trajectories from learning their HIV status to deciding whether or not to initiate ART, with a focus on potential barriers to initiation of ART. The closed-ended questions included yes/no questions, multiple choice and Likert scale questions. The closed-ended questions were primarily used to gather demographic data, information about when women learned their HIV status, if/when they initiated ART, whether ART was provided at their facility or they had to be referred and who they consulted before initiating ART. The Likert question asked on a scale of 1–5 how difficult it was to initiate ART. The opened ended questions were used to gather information about messages they heard at the facility, what information was unclear, why they decided to initiate or not initiate ART, what challenges they faced initiating ART and what were the anticipated challenges with continuing medication and returning to the facility. Convenience sampling was used to select participants in the maternity ward. From July to September 2011 all eligible women at the selected study sites were invited to participate in the study. Nurses were trained by the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF) staff to identify eligible women, obtain written informed consent, and conduct interviews. Women who participated in the FGDs were recruited from the child welfare clinics when they returned for the child’s immunization visit at 6 or 10 weeks. These time periods were selected to reduce recall bias and due to high drop-out rate for the third immunization visit at 14 weeks. Post-delivery is a common drop-off point in the PMTCT cascade therefore the study sought to gather the perspectives from multiple time points (immediately following delivery, 6 and 10 weeks). Convenience sampling was also used to recruit women for the FGDs. Between January to March 2012 all eligible women who attended the child welfare clinics at the selected sites were invited to participate in the FGDs. Nurses were trained on participant eligibility criteria and referred all eligible women to onsite RAs who enrolled them in the study. Those who participated in the FGDs were told a day and time to return to the facility to participate in the FGD. The FGD used a semi-structured guide with open-ended questions to facilitate a discussion about the barriers and facilitators faced by women when deciding to initiate ART under Option A. All FGDs were conducted by EGPAF staff trained in qualitative data collection. All FGDs had 5–11 participants, were conducted with one moderator and one note taker, and were audio-recorded. Purposive sampling was used to recruit nurses for FGDs between January to March 2012. Nurses were recruited for FGDs by EGPAF regional PMTCT coordinators in collaboration with the regional clinic supervisors. Given the small number of nurses who provide services at these facilities, all eligible nurses providing services in each of the four regions of Swaziland were invited to participate, and this did not exceed the maximum number of FGD participants. The regional coordinator informed the participants about the time and day the FGD would be conducted. FGDs with nurses were similarly conducted using a semi-structured guide with open-ended questions focused on barriers and facilitators to women initiating ART, as perceived by nurses. The nurses who participated in the FGDs were not the same nurses who interviewed patients, as the FGD participants were recruited from the maternal and child health units, and nurses who conducted interviews were based in the maternity ward. Prior to implementation all study materials were reviewed and approved by the Swaziland Scientific and Ethics Committee. Individuals who participated in the interviews provided written informed consent, while FGD participants provided verbal consent. All efforts were made to protect participant privacy by limiting collection of any identifiable information, limiting access of study data to study staff, and using study ID numbers instead of names when conducting FGDs. Audio-recordings of the interviews and FGDs with the women were transcribed and translated into English simultaneously. Data were analyzed using thematic analysis [14]. After transcription, a master list of all findings was assembled, and codes were determined when a finding was seen to reoccur throughout the data and was relevant to the research questions. Related codes were grouped into overarching themes. The codes and themes were used to create a coding framework. The FGDs were coded in the qualitative software program MAXqda v.10 by two members of the study team who designed the study. Thematic findings were illustrated using verbatim quotes which were selected on the basis of being representative of a specific theme. The short answer questionnaire included specific questions about the different steps in the woman’s experience initiating ART; therefore it was more appropriate to analyze the responses for each question separately. Responses for each question were compiled and examined for similaries and differences among the responses and compared to the FGD data.
N/A
