Background
Although prevention of mother-to-child transmission (PMTCT) services have over the years been expanding dramatically with data between 2002 and 2013 showing that new infections among children dropped by more than 50%, there remains a treatment gap due to several reasons [
1]. The PMTCT cascade entails a chain of intricate steps such as counselling and testing, disclosure, and treatment. Furthermore, distance to health facility, stigma, food insecurity and negative attitudes of health services providers towards women act as barriers to recommended guidelines for women on PMTCT [
2,
3].
The World Health Organization (WHO) guidelines recommend lifelong ART (Option B+) to all HIV positive women who are pregnant or breastfeeding regardless of CD4 count or clinical staging to reduce vertical transmission. In 2013, Zimbabwe adopted Option B+ as a means of ensuring elimination of pediatric HIV infections. The percentages of pregnant mothers in the country who received ART to reduce the risk of mother to child transmission of HIV (MTCT) reached 93% in 2013 and 86% of babies born to HIV positive mothers were initiated on ART [
4]. Thus, with the newly recommended Option B+ regimen, Zimbabwe has seen an expansion in access to ART for pregnant women and breastfeeding mothers [
4]. With the demonstrated potential of Option B+ there are new challenges such as acceptability of ART, self and community stigma, inadequate counselling and non-adherence [
5,
6]. However, there is paucity of data on the experiences of mothers on PMTCT especially during the postnatal period in Zimbabwe. Although, the adoption by Zimbabwe of Option B+ is likely to see major strides towards the elimination of paediatric HIV infections, adherence to this new drug regimen and adherence to infant feeding guidelines by mothers during the postnatal period remains unclear. It is therefore critical to understand lived experiences of women on PMTCT to make informed policy decisions.
PMTCT programmes face a plethora of challenges which include access to health services, long waiting hours, community stigma, disclosure, and adherence which underscores the need to get a deeper understanding of how the women are receiving and experiencing the programme [
7‐
12]. This study therefore aimed to explore HIV infected breastfeeding women’s experiences of the PMTCT programme in rural Zimbabwe.
Methods
Research design
This paper reports results from part of a larger study on socio-cultural realities of following through with PMTCT in the Chiota rural community in Zimbabwe [
13,
14]. Results from this study were reported using the Consolidated Criteria for Reporting Qualitative Research (COREQ) [
15]. A descriptive phenomenological study design was used to understand the experiences of women living with HIV on the PMTCT programme. This design aims to offer insights into how people in given contexts make sense of a certain phenomenon which relate to experiences of personal significance. Qualitative methods were preferred for the study for their strength in providing rich data on lived experiences and taking cognizance of participants’ voices. The researchers engaged with breastfeeding women as they described their experiences of being on the PMTCT programme. The women were interviewed once by two interviewers in each session whilst the third interviewer took notes.
Participants and setting
The registers at two rural health facilities were used as the sampling frame targeting all postpartum HIV positive mothers. The two rural health facilities had a combined total of 108 women on PMTCT. The purposive sampling technique was utilized to recruit participants who were reported by the nurses to be having difficulties accepting their HIV status and adhering to Option B+. Purposive sampling has its focus on specific characteristics which in this study were rural health facilities that offered PMTCT and breastfeeding mothers who were facing challenges with regards to adherence to PMTCT. The selection criteria were based on having a baby who was at least 2 months, breastfeeding, able to give consent and not seriously ill. The nurses had initially identified 18 women who were having adherence challenges. Of the 18, 15 consented to the study, whilst two were lost to follow up and one woman declined to participate citing a busy schedule. Participation was voluntary and participants were recruited at two government primary healthcare facilities as they came to collect their monthly supplies of medication or when they came for the child welfare clinics. Stigma surrounding HIV and AIDS is still very strong in the area under study such that efforts to recruit mothers from the community became futile, hence the resolution to recruit from the health facilities [
13].
Authors’ positionality
The position of the researcher within the research process is vital. Authors were aware that as researchers they could shape the research process and their own experiences may have a bearing on the knowledge production and presentation. Data were collected by one male (JJ) and three female researchers (ZNJ, IC, EM) who had doctoral level qualifications in psychology, social science, pediatrics, and public health respectively. The researchers had sufficient understanding of the local context, recognized informal institutions which facilitated easy access into the community. They had also worked extensively in Chiota community and had established rapport and trust with the community members. They could easily interpret culturally coded observation. As women and mothers, the researchers were privy to the challenges that affect mothers during the postnatal period. The missing link could have been the experiences of living with HIV. The other male team member who was a psychologist, provided guidance in terms of conduct of the interviews, understanding the women’s behavior, emotions and offering counselling where it was needed. Using multidisciplinary researchers was also meant to enhance the reliability and validity of the findings. All the team members were conversant with the Shona traditions and the multidisciplinary team strengthened the data analysis. It should be acknowledged that subjectivity is always present in qualitative research. To minimize subjectivity, the researchers went into the field with as few preconceptions as possible. This enabled the researchers to conduct a reliable qualitative inquiry which was devoid of past experiences and prejudices.
Data collection
The purpose of the study was explained to the participants prior to data collection and they were asked to describe their experiences and subjective feelings following initiation on the Option B+ regimen. Data were collected through unstructured in-depth interviews where mothers narrated their experiences of being on the PMTCT programme. This method enabled the collection of personally salient data with some richness and depth. Interviews were conducted in the local Shona language and transcribed verbatim. Only the participants and the researchers were present during the interviews. Each interview lasted for an average of 45 min to 1 h. Data were collected over a period of 6 months.
Ethical considerations
The study protocol was reviewed and approved by both the Joint Parirenyatwa Hospital and College of Health Sciences Ethics Committee (JREC Ref 4/14) and the Medical Research Council of Zimbabwe (MRCZ/A/1819). Permission to carry out the study was obtained from the Ministry of Health and Child Care, Secretary for Health, Provincial and District Medical Health Directors of Mashonaland East and the Nurses in-charge of the 2 Chiota Rural Health Clinics who assisted in the identification of the mothers. The purpose of the study was explained to the participants. Written and verbal informed consent was given by all the participating mothers. The interviews were conducted in a private room. To avoid coercion, the health care providers did not directly participate in the study.
Data analysis
The conversations were tape recorded after obtaining the participants’ permission. The interview guide was created in English by the principal investigator (ZNJ) and the other researchers (JJ, IC and EM) revised it to ensure that it answered the research objectives. Since the interview was conducted in Shona, it was sent to the Department of Linguistics at the University of Zimbabwe for translation by a senior lecturer. The researchers who were the originators of the research had to back translate it into English to ensure that it retained its meaning (see Additional files
1 &
2). The tool was pretested at a health facility which was similar to the study areas. The pretest showed that the tool solicited the information that addressed the objectives of the study. One probe on cultural practices was included after the pretest. After data collection, the transcripts from the audio recordings were typed in Shona and then translated into English before coding and analysis was done. The authors are all fluent in Shona and they individually translated the transcripts and they exchanged their translations and reached consensus. The translations did not have any variations and this ensured that there was no difference in interpretation of the data. The authors also translated the excerpts in the results section. Pseudonyms were used when quoting information during data analysis to maintain anonymity.
Data were analyzed thematically [
16]. The first step was to summarize each participant’s story followed by analyzing their biographic data. This was followed by coding of significant statements. Three data coders coded the data. Emerging codes were catalogued and patterns in the codes were noted. This was followed by grouping the codes into themes. Quotable quotes were noted whilst continuously interrogating the data. Some emergent themes were further grouped into superordinate and subordinate themes with the final set of themes being summarized and tabulated with evidence from the text supported by quotes. The coded data were independently cross checked by two authors to ensure consistency. The preliminary findings of data were shared with participants.
Discussion
In this study the main question under discussion centered around understanding the lived experiences of breastfeeding women on the Option B+ programme in an economically disadvantaged rural setting. Our findings revealed that women had concerns with regard to stigma and discrimination, fears surrounding infecting their babies with HIV, strained marital relationships, and were uncertain about ART side effects.
In relation to stigma, the sentiments expressed by women in our study are a clear indication of internalized stigma, institutional and community stigma. This is similar to findings by Schechter et al. (2014) in Cote d’Ivoire and Uganda where it was shown that women experienced depression when they became aware of their HIV positive status [
6,
18]. A study in Mozambique reported unintentional biases among healthcare providers which were a frontier of stigmatizing HIV positive women a similar finding to our study which highlighted institutional stigma as a serious challenge for mothers on the PMTCT programme [
19]. A study conducted in Ethiopia further confirmed that stigma and discrimination by the health care providers was associated with poor adherence [
20]. Women in our study reported a sense of powerlessness which was compounded by unequal relations with the health care providers, a similar finding to a study in Tanzania by An et al. (2015) which found that women were not at liberty to opt out for compulsory testing [
21]. The fear of negative consequences and the stigmatization of HIV by the community were found to be a barrier to disclosure in our study which was also found in a systematic review on ART use among postpartum women [
22]. In Botswana, women also kept their HIV status as a well-guarded secret in the communities where they lived as they feared being stigmatized and discriminated against [
22,
23]. Community involvement in HIV and AIDS prevention efforts in our study was said to be lacking contrary to Campbell and colleagues in 2013 in Zimbabwe who postulated community involvement in HIV prevention and mitigation as a critical enabler of an HIV and AIDS response [
25]. Community readiness which include identification of existing obstacles to programme success should be prioritized in all HIV and AIDS programme interventions.
Other studies have also shown that women on the PMTCT programme experience fear especially relating to breastfeeding their babies and that healthcare providers oftentimes fail to adequately consider factors such as the women’s lived experiences, their preferences, social networks and lay knowledge, all of which have potential for inhibiting effective participation in PMTCT programmes [
25‐
27]. In a study that was conducted in Zimbabwe, HIV positive women were reported to suffer anticipatory grief especially when their child was also HIV positive [
28]. Additionally, the choice of feeding strategies like exclusive breastfeeding was found to be a cause of distress among women as it was susceptible to judgment and association with HIV and AIDS [
23,
24,
29]. The lack of economic empowerment also left women with no choice of giving their babies alternative feeds as they were not employed and they depended on their partners and extended family for sustenance.
Our findings also suggested that women felt that being HIV positive strained relationships within their marriages. Women faced a dilemma in disclosing to their partners and feared divorce and violence following disclosure. Disclosure of one’s HIV status can improve uptake and retention in PMTCT services, yet it has been found to be a serious challenge for most women. A systematic review which evaluated disclosure rates revealed that HIV serostatus disclosure ranged from 5.0 to 96.7% and women were more likely to disclose to their partners than to family members [
30]. Another study on non-disclosure of HIV status among Sub Saharan migrant women also identified sigma as the chief reason for non-disclosure [
31]. A study in Botswana revealed that women faced a dilemma of disclosing their HIV status especially to their partners and preferred to disclose to their own mothers and sisters [
23]. In Mombasa women were reported to have faced intimate partner violence and divorce after HIV disclosure [
29]. These findings relate to our study which found disclosure among HIV positive women to be one of the greatest challenges. The commonly cited barriers for non-disclosure of HIV status by women on the PMTCT programme included fear of abandonment by significant others and divorce by husbands a finding confirmed by Gari and Habte, (2010) in Ethiopia [
32]. Shamu and colleagues reported intimate partner violence following disclosure of HIV status among pregnant women in Zimbabwe [
33]. The narratives by Maman, Rooyen, and Groves, in South Africa on disclosure reported negative reactions from a partner upon disclosure which is congruent with our findings [
34].
Womens’ fear of the long-term effects of ART use found in a study was similar to that found in Nigeria [
35]. The introduction of the WHO recently recommended Option B+, for all pregnant and breastfeeding mothers irrespective of CD4 count and clinical staging was a cause of concern for mothers who were not sure of its sustainability and side effects.
Study limitations
The study was conducted at health facilities which could be intimidating for mothers to express especially the institutional challenges they were encountering. The study also focused only on women with challenges, calling for further studies to explore experiences of other women to draw comparisons. The study findings cannot be generalized due to the small sample size.