Patterns and determinants of pathways to reach comprehensive emergency obstetric and neonatal care (CEmONC) in South Sudan: Qualitative diagrammatic pathway analysis

Background: Maternity referral systems have been under-documented, under-researched, and under-theorised. Responsive emergency referral systems and appropriate transportation are cornerstones in the continuum of care and central to the complex health system. The pathways that women follow to reach Emergency Obstetric and Neonatal Care (EmONC) once a decision has been made to seek care have received relatively little attention. The aim of this research was to identify patterns and determinants of the pathways pregnant women follow from the onset of labour or complications until they reach an appropriate health facility. Methods: This study was conducted in Renk County in South Sudan between 2010 and 2012. Data was collected using Critical Incident Technique (CIT) and stakeholder interviews. CIT systematically identified pathways to healthcare during labour, and factors associated with an event of maternal mortality or near miss through a series of in-depth interviews with witnesses or those involved. Face-to-face stakeholder interviews were conducted with 28 purposively identified key informants. Diagrammatic pathway and thematic analysis were conducted using NVIVO 10 software. Results: Once the decision is made to seek emergency obstetric care, the pregnant woman may face a series of complex steps before she reaches an appropriate health facility. Four pathway patterns to CEmONC were identified of which three were associated with high rates of maternal death: late referral, zigzagging referral, and multiple referrals. Women who bypassed nonfunctional Basic EmONC facilities and went directly to CEmONC facilities (the fourth pathway pattern) were most likely to survive. Overall, the competencies of the providers and the functionality of the first point of service determine the pathway to further care. Conclusions: Our findings indicate that outcomes are better where there is no facility available than when the woman accesses a non-functioning facility, and the absence of a healthcare provider is better than the presence of a non-competent provider. Visiting non-functioning or partially functioning healthcare facilities on the way to competent providers places the woman at greater risk of dying. Non-functioning facilities and non-competent providers are likely to contribute to the deaths of women. This research is part of a study that was conducted from 2010 to 2012 in Renk County to gain an in-depth understanding of access to maternal healthcare in South Sudan to inform local policy and practice [31–33]. Renk County is one of the 13 counties that constitute the Upper Nile State in South Sudan. It is located in the northern part of the state, close to the international border with Sudan. In the April 2010 census, the population of Renk County was 137,751 with 29,589 women of reproductive age (15–49 years) [34]. This qualitative research used two data collection methods: Critical Incident Technique (CIT) and stakeholder interviews. CIT was used to study incidents of maternal death (MD) and maternal near miss (MNM) cases that occurred within the past two years, to ensure the interviewees could still recall details of the incident and to minimise recall bias. CIT involves the use of a set of procedures to collect in-depth data on human behaviour and people’s experiences with regard to significant incidents [35], which in this study were MD and MNM cases. The method was used, through a series of in-depth interviews with witnesses or those involved, to systematically identify pathways to healthcare during labour, determinants and behavior associated with the events. CIT was conducted with selected events among women of different ages, parity and ethnic backgrounds in order to develop an understanding of their day-to-day activities and habits; how they perceive reproductive and family health in general with a focus on maternal health, labour and the challenges that arise resulting in maternal mortality or near miss. Their responses reflected culture, norms and beliefs providing a comprehensive overview to help understand the factors influencing their behaviours and decisions. These stories of maternal mortality and morbidity reflect the reality of community and health systems that shape maternal and infant care in a country affected by years of war. After conducting the CIT interviews, the research team conducted face-to-face interviews with relevant maternal health stakeholders. In this study, the term ‘stakeholders’ refers to individuals from different institutions and agencies that hold relevant official positions, or are perceived as having a role to play or a perspective on maternal health in Renk County [36, 37]. A critical case purposive sampling approach was employed to identify MD and MNM cases. Critical case sampling has been defined as a process whereby, “individuals, groups, or settings are selected that bring to the fore the phenomenon of interest such that the researcher can learn more about the phenomenon than would have been learned without including these critical cases” [38]. The few first events were selected purposively through village midwives and midwives working in Renk hospital who identified one or more events of MD or MNM. After one event was identified, a snowball technique was used to identify the other cases, by asking the interviewees to identify other ‘critical cases’ among their social networks including neighbours or relatives, who had a similar experience. Thirteen critical incident cases were identified and included in this study, of which five were MD and eight were MNM cases. A purposive sampling technique was used to identify, approach and recruit potential key informants. Following this, a snowball sampling technique was applied to identify and recruit further interviewees. Senior officers who hold relevant official positions in Renk County government and county health department were approached. Health personnel at Renk hospital, Jalhak health centre and Geiger health centre, who were involved in providing the service to pregnant women either directly or indirectly, were also invited to participate. Relevant NGOs, FBOs, and community and religious leaders were also identified. Other relevant key informants who were identified during the data collection stage were also included in the study. In total, 28 interviewees were identified and invited to participate (Table ​(Table1),1), all of them accepted and were included. Stakeholders interviewed After identifying a MD or MNM case, an appointment was made for the interviews when informed consent was verbally obtained. The interviews were scheduled at a time and venue chosen by each interviewee. KE, AAA, and AAR conducted the interviews in Arabic and Juba-Arabic (the local language). In each case, semi-structured interviews were conducted with all available witnesses of the critical case including the woman’s husband, mother, in-laws, sisters, the traditional birth attendant (TBA), the midwives and, in MNM cases, the woman herself. Some of the interviews were done on a one-to-one basis, where each respondent was interviewed separately and in other cases a group interview was conducted, depending on the preferences of the people involved. In the latter case, one participant in the group would give an overview of the event, after which each of the participants would be interviewed according to the described sequence of events. During the interview the researcher began by reintroducing the study, followed by ice-breaking questions and getting to know the interviewee. This led to personal and demographic data, background information about the family, details about the respondent and their relationship to the deceased mother in case of maternal deaths being collected. The main question was ‘what happened?’ The interviewee was enabled to speak about the event as much as possible. Then the researcher returned to the beginning of the story and began asking follow-up and probing questions in order to get as much detailed data as possible to understand the care seeking pathways. Depending on the specific event and interviewee, questions were also asked regarding past obstetric history, previous similar experiences, culture, beliefs and health-seeking behaviours. Interviews ended with questions as regards future resolutions, recommendations if any, and revisiting the answers of some questions that were not clearly answered. Interviewees were thanked for their full participation and help (Additional file 1). Once a stakeholder was identified, an appointment was made for the interview. The interviewees chose the time and venue. At the beginning of each interview, the researcher explained the purpose of the study and obtained verbal informed consent. The interviews were video or audio recorded and notes were taken during the interviews in a diagrammatic style (i.e. with key words and phrases recorded and linked). Although the research team prepared pre-planned questions to ask during the interview, they allowed questions to flow naturally, based on the respondent’s position and information provided. At the start of the interviews, participants were briefed and informed about their right to refuse to answer any question, which none chose to do. Then they were asked for background information and introductory questions about issues facing women in South Sudan. Following this, more focused questions were asked about issues related to acceptability, affordability, accessibility, availability and quality of healthcare. The interviews concluded with questions about their recommendations to improve women’s health in South Sudan (Additional file 2). Data generated from each case, comprising all interviews related to the event, was transcribed and translated into English. All transcripts related to each case were read through completely to familiarize the researcher with the content. A narrative was developed by summarising each event from all its related transcripts. The narrative was mapped by illustrating on paper the path of each incident that the patient followed from the onset of labour pains or of complications until she reached the final health facility. The mapping identified actors, decision makers, decision points, consequences, timeframe and geographical locations. This diagrammatic pathway analysis was done by the lead author (KE). This pathway analysis was then examined by other members of the research team (EB and DOD) to add to the rigor of the analysis. This method of analysis gave new insights into the data and helped to identify decision-making processes, delays in accessing healthcare, and referral patterns. Thematic inductive analysis was used to analyse data generated from stakeholder interviews. This identified key themes and analytic questions requiring further exploration. This approach was used to ensure that the identified themes were data-driven, without trying to fit it into a pre-existing coding frame. The five phases suggested by Braun and Clarke [39] were used for thematic analysis. These include data management and familiarisation, initial coding, identification of themes, reviewing themes, and defining and naming themes. NVivo 10 was used to manage, code and analyse data. The field research team consisted of the principal researcher (KE) and two research fellows (AAA and AAR) who were fully trained in advance of field work on dealing with sensitive topics. They were trained to pause during the interviews before dealing with particularly sensitive issues and remind participants of the option not to respond. Safeguarding measures were applied for psychological safety of people interviewed. The research team had to build trust and rapport with the families through visiting their homes several times. The first visit was spent sitting and talking with the family to explain the study and to sympathise with their pain and loss. Death is a sensitive issue, surrounded by many negative circumstances and incidents. Discussing this with relatives often brought back a wave of negative emotions. The interviewers had to probe sensitively, steer the interview so that it stayed focused, and at all times consider the interviewee’s comfort. Any cues or signals by which the interviewee was indicating distress were carefully observed. The interviewer gave the interviewees time to express significant emotion and advised them on relevant support services in the area to consult if they experienced distress either during or after the interview. Follow up visits were also arranged to meet with the family members.