Too afraid to go: Fears of dignity violations as reasons for non-use of maternal health services in South Sudan

Background: South Sudan has one of the worst health and maternal health situations in the world. Across South Sudan, while maternal health services at the primary care level are not well developed, even where they exist, many women do not use them. Developing location specific understanding of what hinders women from using services is key to developing and implementing locally appropriate public health interventions. Methods: A qualitative study was conducted to gain insight into what hinders women from using maternal health services. Focus group discussions (5) and interviews (44) were conducted with purposefully selected community members and health personnel. A thematic analysis was done to identify key themes. Results: While accessibility, affordability, and perceptions (need and quality of care) related barriers to the use of maternal health services exist and are important, women’s decisions to use services are also shaped by a variety of social fears. Societal interactions entailed in the process of going to a health facility, interactions with other people, particularly other women on the facility premises, and the care encounters with health workers, are moments where women are afraid of experiencing dignity violations. Women’s decisions to step out of their homes to seek maternal health care are the results of a complex trade-off they make or are willing to make between potential threats to their dignity in the various social spaces they need to traverse in the process of seeking care, their views on ownership of and responsibility for the unborn, and the benefits they ascribe to the care available to them. Conclusions: Geographical accessibility, affordability, and perceptions related barriers to the use of maternal health services in South Sudan remain; they need to be addressed. Explicit attention also needs to be paid to address social accessibility related barriers; among others, to identify, address and allay the various social fears and fears of dignity violations that may hold women back from using services. Health services should work towards transforming health facilities into social spaces where all women’s and citizen’s dignity is protected and upheld.

A qualitative study was conducted; data was collected through focus group discussions (FGDs) and semi-structured interviews (SSIs) conducted with a variety of purposefully selected informants, as detailed in Table 1. Following sections further explain the sampling and recruitment principles and processes. Overview of study participants and data collection aParticipants were either In Union or Not In Union at the time of the study. Relationship status is presented this way because in Wau people say they are married only if the relationship was formalised either in a traditional ceremony, or in the church – even if they cohabit. For convenience we use the terms married/unmarried in the paper Topic guides for FGDs and SSIs were developed using de Francisco et al.’s (6) conceptual framework. According to the framework, individuals and social groups occupy positions of relative advantage or disadvantage with respect to their access to resources (social and material), within overlapping spheres of influence: the household, community, larger society, and the political environment. Individual’s and social groups’ position and relations in these overlapping spheres of influence shape their SRH related decisions and actions. Topic guides for community members included questions exploring people’s expectations from, and reasons for (non-)use of maternal health services. The topic guides for health and other workers included questions on the same lines, but with a view to explore their perspectives on the (non-)use of maternal health services. The FGD and SSI topic guides for community members were prepared in English and translated into the local language, Wau Arabic. The topic guides were defined further during the initial stakeholder workshops, pre-tested in the study site, and were adapted iteratively as the study progressed. The study was conducted in Wau County of WBeG State of South Sudan. While South Sudan is home to more than 50 ethnic groups, in WBeG, the Fertit, an agriculturalist people, predominate. Two locations in Wau County were selected based on the homogeneity of the residents (all Fertit). Both locations were within walking distance of functioning maternal health services – this was important as health service coverage (geographical) is poor in many parts of WBeG. In both the locations, maternal health services were provided in a primary care facility staffed by one clinical officer, one nurse, 1–2 midwives and a pharmacist. In both facilities, the staff were a mix of locals, and returnees who originally hailed from WBeG. The two locations represented two different settings in Wau County – Wau town and the other a rural area. However, in both settings the socioeconomic situation was similar, with most people engaged in subsistence farming or informal manual labour. The assumption behind choosing these two locations was that perhaps within the same ethnic group, depending on the setting, the decisions and decision-making processes around whether or not to use maternal health services, might be moderated differently. Details of study participants are presented in Table 1. Community members were purposefully selected with the assistance of village elders, health workers from a local NGO and the county health department. The assistance was limited to guiding the researchers to the village and to making introductions; the actual selection was done by the researchers themselves. Amongst community members, only those of age 18 years and above were included in this study. We purposefully categorized participants into those between 18 and 35 years and those above 35 years with the assumption that the two age groups might have different health seeking behaviors. Data collection began with FGDs amongst community members, followed by SSIs to obtain more in-depth understanding. FGD participants were homogenous in terms of ethnicity, age and marital status, yet diversity was sought in terms of social and economic status (criteria included ownership of assets like bicycles, and level of education). Health facility personnel responsible for maternal health in facilities close to the study sites were included as participants. Individuals with active maternal health related role within the county and state health system i.e. traditional leaders, traditional birth attendants, SRH service managers, and representatives of NGOs working on maternal health, were also included as key informants. Data were collected from October 2014 to April 2015, over 3 visits to Wau. FGDs and interviews with community members, traditional leaders and traditional birth attendants were conducted by research team members who hailed from the study area, were fluent in Wau Arabic, and had experience with conducting qualitative research. Data were collected till analytical saturation was reached, and no new insight emerged; this was possible to assess, as at the end of each day of data collection, the research team debriefed and discussed the emerging findings. In total 5 FGDs (with 38 participants) and 44 SSIs were conducted. SSIs and FGDs were digitally recorded, translated from Wau Arabic into English (where applicable) and transcribed verbatim. An inductive thematic analysis of the transcripts was conducted [17]. Analysis began with an initial thorough reading of transcripts by three researchers (SK, MR, MK) to identify broad themes about the reasons for use or not of maternal health services. The guiding principle in this process was to identify the various reasons that were important to participants and to ascertain that the chosen themes captured the main aspects of participants’ reasons behind using or not using SRH services. The next step involved moving from these themes to an interpretation of the broader significance of and meanings attached to these themes, and the implications of these themes; in parallel, and iteratively through this process, the identified themes were reviewed, refined, and named. The NVivo 11 software was used to code all transcripts and to run queries on the dataset. Findings from the preliminary analysis were refined through follow up interviews with 2 participants in each study site (n = 4), one traditional leader, one local resource person, and through a workshop involving community health workers, health facility personnel and SRH services managers (n = 13). Informed consent was given by all study participants; for those who could not read, the consent form was read out to them and their consent was recorded. Confidentiality was maintained throughout, and steps were taken to anonymise the data and to minimise risk of accidental disclosure and access by unauthorized third parties. Since the study included questions about the local health services and the responsiveness of providers, special care was taken to ensure that identities of participants were not revealed to the local health workers. All participants were explicitly informed of their right to refuse to participate and to not answer questions they might find to be intrusive. Keeping in mind the possibility of some participants being reminded of traumatic experiences, medical referral services and counselling support were made available. No such situation requiring referral emerged during data collection or in the period after the study.

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