Why don’t illiterate women in rural, Northern Tanzania, access maternal healthcare?

Background: In 2017, roughly 540 women in Sub-Saharan Africa died every day from preventable causes related to pregnancy and childbirth. To stem this public-health crisis, the WHO recommends a standard continuity of maternal healthcare, yet most women do not receive this care. Surveys suggest that illiteracy limits the uptake of the recommended care, yet little is understood about why this is so. This gap in understanding why healthcare is not sought by illiterate women compromises the ability of public health experts and healthcare providers to provide culturally relevant policy and practice. This study consequently explores the lived experiences related to care-seeking by illiterate women of reproductive age in rural Tanzania to determine why they may not access maternal healthcare services. Methods: An exploratory, qualitative study was conducted in four communities encompassing eight focus group discussions with 81 illiterate women, 13 in-depth interviews with illiterate women and seven key-informant interviews with members of these communities who have first-hand experience with the decisions made by women concerning maternal care. Interviews were conducted in the informant’s native language. The interviews were coded, then triangulated. Results: Two themes emerged from the analysis: 1) a communication gap arising from a) the women’s inability to read public-health documents provided by health facilities, and b) healthcare providers speaking a language, Swahili, that these women do not understand, and 2) a dependency by these women on family and neighbors to negotiate these barriers. Notably, these women understood of the potential benefits of maternal healthcare. Conclusions: These women knew they should receive maternal healthcare but could neither read the public-health messaging provided by the clinics nor understand the language of the healthcare providers. More health needs of this group could be met by developing a protocol for healthcare providers to determine who is illiterate, providing translation services for those unable to speak Swahili, and graphic public health messaging that does not require literacy. A failure to address the needs of this at-risk group will likely mean that they will continue to experience barriers to obtaining maternal care with detrimental health outcomes for both mothers and newborns. During design, data collection, and analysis, this study adhered to the consolidated criteria for reporting qualitative research (COREQ) when possible as outlined in Additional file 1: Appendix [38]. This research was conducted in Misungwi District located in Mwanza Region of Tanzania’s Lake Zone (Fig. 1). Misungwi District is rural, located 45 km from Mwanza city and at last census (2012) had a population of 351,607 [39]. Administratively, the district is sub-divided into 4 divisions, 20 wards, and 78 villages. In 2019, 91% of households in Misungwi District were ethnically Sukuma [15]. The Sukuma are a patrilineal society in which women are expected to take care of their husbands and children [40]. Those individuals included in this study were low-income, living in villages scattered throughout flatland terrain, and subsisting via the cultivation of maize, millet, rice, sweet potatoes and vegetables, cattle grazing on communal lands, and fishing. Most households surveyed in 2019 reported using firewood (83%) or charcoal (14%) for cooking fuel [15]. Sixty-eight percent of households owned livestock and 62% owned agricultural land [15]. Thirteen percent of households were connected to electricity, 57% owned a bicycle, and about 10% owned a mechanized form of transport [15]. Piped water, and advanced sanitation facilities are not common. Each of the four villages considered in this study had a primary school and attendance in primary school in Tanzania is compulsory. It is in school that students are taught to speak, read, and understand Swahili. While Swahili is the official language of the Tanzanian government and healthcare providers [41], it is the second language of most in Tanzania and is mainly learned at school, especially in rural communities. Despite the fact that primary school is compulsory in Tanzania, the country has a lack of a quality, formal education, especially in rural regions where the long distances to schools and insufficiently qualified and motivated teachers, a lack of teaching materials, textbooks, basic technology, and required financial contributions [42] are disincentives for some students [43, 44]. Additionally, Tanzanian girls are more likely to drop out of school than are boys due to their caretaking responsibilities [45]. In 2019, Misungwi District had 48 formal health facilities providing services for women giving birth. The district, along with others in the Lake Zone, has amongst the worst maternal, newborn, and child health indicators in the country [13], and is prioritized by government for maternal newborn health programming. Misungwi District map. This map is our own creation The study used Criterion-i [46], purposive sampling [47] to identify two rural divisions in Misungwi District. Purposive sampling is used in qualitative research for the identification and selection of information-rich cases [47]. Criterion-i, or criteria of inclusion sampling, is a purposive sampling strategy in which the sample is selected based on the assumption that they have knowledge and experience with the phenomenon of interest (i.e., accessing maternal healthcare) and will consequently be able to provide information that is both detailed and generalizable [46]. Villages were thus selected for inclusion by first ranking the four Misungwi District divisions surveyed in 2016 [15] on the basis of accessing antenatal, birth and postnatal care services, then selecting the two divisions, Mbarika and Inolelwa, with the lowest overall rates of accessing care. Four wards within Mbarika and Inolelwa were randomly selected for inclusion in this study [48] and within each ward, one village was randomly selected, for an overall total of four villages. The illiterate women of reproductive age were recruited by first explaining the purpose and methods of the study to the village leaders and the village-based, community health workers (CHWs), then asking them to identify households most likely to have illiterate women of reproductive age. The village leaders and CHWs knew all residents of households in their catchments and had a sense of their literacy status. A second meeting was then held with all members of the village who wished to attend the focus group discussions (FGDs) to explain the purpose and methods of the study. Subsequently, the households of potential research participants were visited by field researchers (DM, PN, VY, EN, & ZM) who explained the project. For those pregnant women or mothers of reproductive age who agreed to continue after learning more about the project, literacy was assessed by a standardized protocol [49]. Only women who could not read at all were eligible to participate in this study. This process was continued to attain a minimum sample size of 20 women in each village. A total of 81 illiterate women who were either pregnant or had children and seven influential people, described below, were selected for inclusion in this study. Of these women, 7 (9%) were pregnant and had no children under-five years of age, 27 (33%) had one child under-five, 36 (44%) women had two children under-five, 9 (11%) had three children under-five, and no data on the number of children were available for 2 (3%) of the women. None of these women had attended school beyond the primary level. Thirteen in-depth interviews (IDIs) were conducted with the illiterate women and seven key-informant interviews (KIIs) were conducted with members of these communities who have first-hand experience with the decisions made by illiterate mothers concerning maternal and infant care. Of the 13 women who participated in the IDIs, all had attended at least one ANC and 11 had given birth with a skilled birth attendant. Interviews were conducted in the informants’ native language, Sukuma. All participants signed informed consent forms. No incentive was provided to the participants, other than refreshments, unless the participant incurred transportation costs to attend the interview(s), in which case transportation costs were refunded. Those perceived to have some knowledge of women’s decisions concerning antenatal, birth and postnatal care services were also invited to participate in order to triangulate experiences of the women [50, 51]. These included opportunistically recruited CHWs and other healthcare providers in each of the four villages. CHWs are community members selected by their communities, trained using a national curriculum, and expected to voluntarily provide health promotion education and support emergency referral care to households in their community, especially to pregnant women and those who recently gave birth (e.g., if a CHW identifies an at-risk mother needing health care, the CHW would ‘refer’ the mother to a health facility). Furthermore, CHWs are neighbors, peers, and confidants of many of the women in their communities. Healthcare providers selected for interviews included nurses and clinical officers providing antenatal, birth, and postnatal services at health facilities. They were included as they have first-hand experience with decision making by women in the communities they serve. Potential CHWs or healthcare providers were excluded from participation in this study if they had not been active in their roles in the community for at least the prior six months. A total of two influential individuals were sought in each village. The field researchers met this goal in three of the four villages but were able to recruit only one influential individual in one of the villages. This study is exploratory and utilizes a phenomenological approach to describe the lived experiences of illiterate women with regard to maternal healthcare [52–54]. Data were collected July–September, inclusive, 2018, in FGDs, IDIs and KIIs. In IDIs and KIIs, interviewers engaged in a probing conversation with the interviewee [55, 56] and used a single, semi-structured facilitator guide to maintain consistency across FGDs, IDIs, and KIIs (Additional files 2, 3 and 4: Appendices 2, 3 and 4) [57]. The only non-participants present in the FGDs or IDIs were infants of some of the participants. No non-participants were present during the KIIs. To ensure guiding questions resonated with participants, the facilitator guide was piloted twice in two similar villages in Tanzania’s Misungwi district. Questions and probes were refined after the pilots to better reflect the context of the region [58]. The morning after the women were selected for the study, FGDs were held with these women to gain an understanding of factors influencing their maternal healthcare-seeking decisions [59, 60]. FGDs were held in a community space chosen by the women. In FGDs, field researchers took a peripheral role to facilitate a group discussion between participants. Later that day, IDIs were held with individual, illiterate women selected at random from those who participated in the FGDs, to explore topics mentioned in the FGD in more depth [61]. As well, KIIs were held with the CHWs and healthcare providers. IDIs and KIIs were held in a location selected by the informant. FGDs, KIIs, and IDIs were audio-recorded. Field researchers, comprised of a moderator, note-taker, and an observer, all fluent in Sukuma, facilitated the interviews. FGDs generally lasted 1–2 h; IDIs and KIIs lasted 45–60 min. Overall, 8 FGDs, two in each of the four villages, composed of 10–11 women each, for a total of 81 women, were conducted with follow-up IDIs completed with 13 (16%) of these women. Seven KIIs were conducted: 3 with CHWs and 4 with healthcare providers. Recorded Sukuma interviews were transcribed and translated directly and verbatim into Swahili as Swahili is the primary language of the Tanzanian team members. Transcriptions and translations were checked for accuracy by four of the Tanzanian researchers, fluent in Sukuma and Swahili, who did not conduct the original interviews or transcription/translation. Two additional Sukuma speakers conducted Sukuma source transcripts quality checks. Resulting Swahili transcripts were then translated to English by Tanzanian researchers fluent in English and Swahili. Interview data from FGDs, IDIs in the four communities with illiterate women, and KIIs with CHWs, and healthcare providers in the four communities were combined in the analysis and interpretation for two reasons: 1) each of these cohorts was asked the same questions and 2) this facilitated triangulation of the data from all four cohorts [51]. To provide a systematic account of the observed phenomena and transform interviews into a set of cohesive and meaningful categories, data were coded in four steps using NVivo (v. 12) [62] and, in step five, the credibility and validity of the findings were assessed. In step one, four randomly selected transcripts, including one IDI, one KII and two FGDs, were used to develop a coding template. Here, each of these transcripts was coded individually and the final codes subsequently agreed upon by DM, PN, and VY. In step two, four additional transcripts were selected at random and new codes were added if they did not fit with the initial codes. Step two resulted in the final codebook for the study. In step three, 18 additional transcripts were coded for a total of 26 (8 FGDs, 11KIIs and 7 IDIs) of the 28 transcripts coded, after which it was determined that saturation was reached; that is, new themes or sub-themes were unlikely to emerge from analysis of additional transcripts [63]. In step four, thematic analysis was used to collapse the codes into basic themes and subthemes [64]. In step five, data from FGDs and IDIs with the women, and IDIs with CHWs and healthcare providers in all four communities were triangulated to increase the credibility and validity of the findings [51].