When women deliver at home with no one present: Are health care systems in Uganda driving women away?

Background Uganda’s maternal mortality remains unacceptably high, with thousands of women and newborns still dying of from Despite the fact that over 95% of women in Uganda attend at least one antenatal care (ANC) visit, over 30% of women still deliver at home with no skilled birth attendant, many choosing to come to hospital after experiencing a complication. We explored barriers to women’s decisions to deliver in a health care facility among postpartum women in rural southwestern Uganda, to ultimately inform interventions aimed at improving skilled facility births. Methods Between December 2018 and March 2019, we conducted in-depth qualitative face-to-face interviews with 30 post-partum women delivering at home or health facility in rural southwestern Uganda. The purposeful sample was intended to represent women with differing experiences of pregnancy, delivery and ANC. Women were recruited from 10 villages within 20km of a referral hospital. Interviews were conducted and digitally recorded in a private setting by a trained native speaker. Translated transcripts were generated and coded. Coded data was iteratively reviewed and sorted to derive descriptive categories using grounded theory methodology. Results Regardless of where they decided to give birth, women wished to deliver in a supportive, respectful, responsive and loving environment. The data revealed six key barriers to women’s decisions to deliver from a health care facility: 1) Fear of unresponsive care, fueling a fear of being neglected or abandoned while at the facility, 2) fear of embarrassment and mistreatment by health care providers, 3)low perception of risk associated with pregnancy and childbirth, 4) preferences for particular birthing positions and their outcome expectations, 5) perceived lack of privacy in public facilities, and 6) perceived poor clinical and interpersonal skills of health providers to adequately explain birthing procedures or support expectant or laboring women and their newborn. Conclusion Anticipation of unsupportive, unresponsive, disrespectful treatment, and a perceived lack of tolerance for simple, non-harmful traditions prevent women from delivering at health facilities. Building better interpersonal relationships between patients and providers within health systems could reinforce trust, confidence, improve patient-provider interaction, and facilitate useful information transfer during ANC and delivery visits.

information transfer during ANC and delivery visits.

Introduction
Of the estimated 300,000 women who die each year from preventable causes related to pregnancy and childbirth, over 99% occur in low and middle income countries ( 1-3).Uganda has one of the highest maternal mortality and perinatal mortality ratios in the world, with over 360 for every 100,000 women and over 40 perinatal deaths per 1000 births respectively ( 4).
Antenatal care (ANC) prevents perinatal and maternal morbidity and mortality by promoting detection and treatment of prenatal complications, and identifying high-risk women to ensure delivery in skilled settings (5)(6)(7)(8)(9). ANC also provides an opportunity to support women, families, and communities at a critical time in the course of a woman's life ( 7). However, utilization of perinatal services in Uganda remains low. Despite the fact that over 95% of pregnant women in Uganda attend at least one ANC visit, only 58% of expectant mothers attend at least four ANC visits (of the recommended eight by WHO) and most women attend a first ANC visit at five and a half months ( 4,10). Although 15%-20% of all deliveries require emergency obstetric care ( 11,12), over 30% women deliver at home alone, or in the presence of an unskilled birth attendant, with many choosing to come to hospital only after experiencing a life-threatening complication ( 4,13). Maternal and perinatal death rates therefore remain unacceptably high despite the Ugandan government's effort to improve access to maternity services, partly through removal of user fees.
Previous scholars have documented barriers contributing to low utilization of skilled facility services by women in low income countries as: (1) distance/inaccessibility to health facilities and or services, and/or (2) lack of adequate information on pregnancy and birth ( 14,15). Factors influencing women's decisions to engage in unskilled home deliveries have not been well studied. We conducted a qualitative study to identify and describe barriers to facility-based delivery on the part of pregnant women in rural southwest Uganda, to ultimately inform the development of a patient-centered intervention to improve ANC utilization and facility deliveries in Uganda.

Study Design
This study used qualitative research methods to explore pregnant women's choice of unskilled home delivery in rural southwestern Uganda.

Study Settings
The study was conducted between December 2018 and March 2019 in the rural southwestern Uganda's Mbarara district, with a projected population of 524,400, 17 sub-counties, 83 parishes and regional referral hospitals, general district hospitals and four levels of community health centers. At the county level are health center IVs (HCIV), sub-county level are health center IIIs (HCIII), the health center IIs (HCII) at the parish level and village level (HC1) that is operated by Village Health Teams (VHTs). The VHTs are community volunteers identified by their community members and are given basic training on major health programs so they can in turn mobilize and sensitize communities to actively participate in utilizing the available health services ( 17). According to the Uganda Ministry of Health, VHTs also act as an important link between the communities and health facilities, and can provide treatment of uncomplicated diseases like malaria, pneumonia, worm infestations, diarrhea and mass drug administration for Neglected Tropical Diseases. VHTs mobilize communities during specific health campaigns and community disease surveillance activities through active data collection and reporting. Staffing and available services vary across the four levels: HCIII and HCIV should offer Emergency Obstetrics Care (EMOC), whereas HCI and HCII serve as low resource referral units which are not able to provide EMOC and have no ambulances and blood transfusion services ( 18). In total, there are about 10 public facilities within a 20km radius from Mbarara Regional Referral Hospital, the main teaching hospital for Mbarara University of Science and Technology. Private providers operate in parallel to the public system to provide maternal health care.

Sampling
A purposeful qualitative sampling strategy was used to construct a sample of postpartum women with varied knowledge and experiences of pregnancy, antenatal care and childbirth. The sample included 15 women who had delivered from their homes and 15 who had delivered from a health facility.
Women were recruited from the 10 villages within 20 km from Mbarara Regional Referral Hospital with the help of existing Village Health Teams. Eligible women were: 1) adults of childbearing age (18-49 years), 2) had delivered a child in the previous three months, 3) had access to a mobile phone, and 4) were able and willing to give informed consent.

Data collection
Data collection consisted of individual, open-ended interviews with each of the study participants (N=30 interviews). A preliminary interview guide was developed and pilot tested by the primary author amongst women in one of the 10 participating villages. The guide was revised based on the results of the pilot test. Topics included in the final version of the guide were: (1) perceptions of pregnancy and childbirth, (2) experiences of previous pregnancy or pregnancies, (3) experiences of ANC, (4) engagement with health care providers within a facility, (5) social support and, (6) childbirth experiences. Individualized probes were used to elicit details corresponding to each topic. As the interviews were conducted, emerging content was continuously reviewed by the primary and senior authors to sharpen the interview questions and identify new probes. Demographic information (e.g. age, occupation, educational background) was collected using at the outset of each interview.
All interviews took place in a private location mutually agreed upon by the participant and the interviewer. Interviews were conducted in the local language (Runyankole), and digitally recorded.
Interviews lasted 60-90 minutes. Qualitative interviews were digitally recorded with the participant's permission and transcribed. A Ugandan research assistant transcribed the interviews from the local language directly to English.
Data analysis and interpretation. The aim of this qualitative data analysis was to inductively construct categories describing barriers to facility-based delivery. Analysis began with repeated review of transcripts to identify relevant content. The identified content served as the basis for developing a coding scheme. Coding was done in three stages namely: 1) open coding to identify and describe women's ideas, meaningful expressions, phenomena or incidents highlighting their experiences during pregnancy and childbirth, 2) axial coding to relate and label codes or data that shared concepts, dimension and properties (relationship identification), and 3) selective coding to delimit coding to the identified core variables/concepts from the data (Strauss and Corbin, 1998).
Data were coded with the aid of the qualitative data management software, NVivo10 (Melbourne, Australia).
Coded data were iteratively reviewed and sorted to identify themes (repeated patterns in the data).
Categories were then developed to describe each identified theme. Categories consisted of descriptive labels, elaborating text to define and specify each category's meaning, and illustrative quotes taken from the qualitative data. Data analysis was done jointly by ECA, EA, CO, JN and GRM.

Results
A total of 30 study participants with differing experiences of pregnancy and antenatal care; 15 women who delivered from their homes and 15 who delivered from a health facility were purposively selected from the 10 villages within 20 km from of a referral Hospital with the help of existing village health teams and interviewed (Table 1)

Qualitative Results
Regardless of where women decided to give birth, a l l of the women (3 0 ) wished to deliver in a supportive, respectful, responsive and loving environment. All women independently chose or were encouraged by their peers to deliver from a location they trusted to offer them a good birthing experience, where they would be helped unconditionally, and be treated with dignity within a friendly and private environment. Our qualitative data revealed six key and repetitive barriers to women's choices to not deliver from a facility: 1) perceived unresponsive quality of care, fueling a fear of being desire for privacy, support and mutual respect generally seemed to greatly influence women's, trust and perception of the quality of care provided at a health facility. Each barrier is described in more detail below.
Perceived unresponsive quality of care Women who believed facility personnel were unsupportive and or unresponsive to their needs were inclined to prefer home delivery. Such fears mainly seemed to evolve from women's previous individual birthing experiences or interpersonal shared birthing experiences from other women.
Expectations of unresponsive care often fueled a fear of being neglected or abandoned while at the facility, causing many women to opt to stay away especially if they felt they had nothing to "tip" some health care providers to attend to them quickly,. According to a 32 year old mother of three, Women who were poorly prepared for birth often dreaded seeking care at facilities because they feared health care providers would reprimand, embarrass or unfairly judge them. These women tended to opt for the "friendly" home birth. According to a 34 year old mother of three, "I only went to that facility once to obtain an ANC visit card because if you don't have one in the event that you get a problem and you want to go to hospital, you will be abused, reprimanded, embarrassed, chased or can even be left there by yourself…it's like that [ANC] card is the passport to get to be attended to by anyone at the center and that is not fair".
A 27 year old mother of three added,

Perceived lack of privacy in public facilities
Women's descriptions of their intimate parts being rudely and publicly exposed in front of others, with midwives offensively instructing their caretakers to hold their legs above their head on a delivery bed placed in an open area as a routine practice, left them feeling 'embarrassed' and 'ashamed'.
Women were thereafter unsure of how their significant-others perceived them as sexual partners especially since culturally, men never ordinarily see women's genital areas. Moreover, they felt physically and emotionally insecure around their caretakers, who in most cases were their immediate relatives. This discomfort after being literally exposed lingered on well way after delivery. These experiences crushed their confidence, especially after a difficult birth. The desire to have a good experience and trusting someone to support and not shame them was key to birth location choices.
These choices in most cases hinged on individual's or other peoples' experiences within the community or at a certain health facility. A 27 year old mother of four said, "All these health centers and hospitals have no private area to deliver from. We just deliver from the general wards or a labor ward packed with other different people, young and old.

Individual's perception of risk associated with pregnancy and childbirth
Women's understanding of pregnancy and childbirth as well as their perceptions of death, risk, threat, and or their current health status influenced women's decisions to opt for skilled facility or unskilled home-based delivery. Women who had previous birth complications, bad experiences delivering at home, or an existing chronic medical condition such as HIV, hypertension or diabetes opted to deliver from skilled facilities "at any cost". However, this awareness of one's health status and the risks associated with pregnancy and childbirth seemed to be influenced by continuous interaction of women with their health care providers, especially during ANC visits. These supportive relationships seemed to play an important role in tackling women's concerns, overriding the perceived negativity and misconceptions about pregnancy and childbirth. For example, the fear of losing a child, a pregnancy or their lives and their expectations of a facility to help them deliver "safely" within their "risky" condition drove these women to engage and optimize/internalize benefits of seeking skilled help against all odds and challenges of these community based health facilities. One of the 32 year old mother of two said,

Discussion
We conducted a qualitative study to identify and describe barriers to facility-based delivery on the part of pregnant women in rural southwest Uganda. Regardless of where they decided to give birth, women wished to deliver in a supportive, respectful, responsive and loving environment. Qualitative data showed that the interaction and engagement of patients and their health care providers within health care systems greatly influenced individuals' understanding of childbirth, birth preparedness, their ability to evaluate risks and or birthing outcomes and trade-off health facility challenges and barriers to seek and experience a dignified skilled birth amongst these adult postpartum women.
Qualitative data revealed six key repetitive barriers to women's choices and/or decisions to deliver from a facility: 1) perceived unresponsive quality of care, fueling fear of being neglected or abandoned while at the facility, 2) fear of embarrassment and mistreatment by health care providers, Previous studies have outlined people's need to have a good, private, dignified and consented experience, free of abandonment, discrimination, abusive and disrespectful care within institutional care provisions (19)(20)(21)(22)(23). According to other scholars, satisfaction was the most common measure of individual's health care experience ( 24,25).
Women perceived maternity care from formal facilities as unresponsive, with perceived possibility of abandonment or being ignored whenever in pain or in need. Our data also showed that some women stayed away from some formal facilities and opted for alternative home births in fear of "unnecessary" caesarian section whenever their labor did not progress well due to perceived inadequate care or health-care provider engagement at these facilities. Just like our study, other scholars have reported perceptions on caesarian sections in some communities as socially or culturally unacceptable and a limiting factor to how many children one was destined to have (26)(27)(28)(29).
Other women in other settings were said to stay away from hospitals for fear of 'being trained on' by medical students at certain hospitals, and that surgery acceptance, appreciation and positive feedback to the community eventually improved through adequate information sharing that progressively created trust within the community ( 30). Previous studies have documented pregnancy and natural childbirth to often be regarded as a sign of courage, strength and endurance in some settings and therefore carried out in a private and solitary environments ( 31). These expectations encourage and or propel women to exercise home or natural birth as a better way to experience natural and divine birthing experience. It was also important to note that although public facilities are supposed to be free of charge ( 4), the frequent stock outs of some vital supplies could mask or facilitate the reported unresponsiveness or user fees asked from women by health care providers to be attended to quickly especially in instances where women or their caretakers had no funds or were poorly prepared for birth. This consistent asking for "tips" at health facilities to access care may have eventually lead to perceived unresponsiveness at these facilities and eventual low maternity service utilization among some women who chose to stay away and opt to deliver at home.
Perceived high quality of maternity care and experience in the health care system, including health provider support can lead to patient engagement in health care utilization, especially where women do not feel maltreatment from health care providers and user fees are exempt or affordable ( 21,(32)(33)(34) According to other scholars, women's perceived need for facility-based delivery is also shaped by their perception of care quality and type in health institutions and their previous birthing experience ( 22,35,36). Many women in our study who had had a bad birthing experience and seemed unsure of the critical benefits of facility delivery did not seek care in the available health facilities. Without much confidence, trust, fear of being embarrassed, insulted or mistreated, many women were unwilling to seek facility delivery and deliberately delivered at home or "elsewhere" away from these facilities. On the contrary, women who had a good birthing experience worked harder to ready themselves for birthing in skilled facilities, by saving or mobilizing the needed support to help them overcame several financial or social barriers to accessing the needed skilled maternity care within their communities.
Supportive relationships and engagement with a health provider through ANC and delivery affected women's awareness, discussion on birth goals, preparedness as well as understanding and internalization of benefits of skilled delivery. In our study, women were motivated to engage with their health providers, mainly dependent on providers' clinical and interpersonal skills and relationships. Previous studies have reported that the strained health facility/ provider relationship including perceived or actual discrimination, accelerates negative maternity experience, patient disengagement from health care and thus low rates of health seeking especially in facilities where providers are reportedly rude, unwelcoming or authoritarian ( 31,37,38). The positive interpersonal interactions and relationships during ANC on the other hand has been documented to provide an opportunity to discuss birth/care goals, support, educate and motivate women, families, and communities at a critical time in the course of a woman's life, including birth preparedness and tackling important concerns that debunk misconceptions about pregnancy and birth, promote detection and treatment of prenatal complications and identifying social problems and high-risk women to ensure delivery in skilled settings (5)(6)(7)(8)(9)39). Data from our study showed that this consistent engagement in ANC and at a time of delivery enabled women to comply, understand, internalize, prepare and take charge of their birth processes and birth decisions, which improved their pregnancy and maternity care experiences. Previous studies have also argued that this health facility birth engagement by either or both couple has potential to reduce all the three phases of delays to access skilled care; delay in decision-making to seek health care, delay in reaching a health facility and delay in obtaining appropriate care upon reaching the health facility ( 30,37,40,41). These delays can also be substantially reduced through involvement of social networks to support and mobilize resources for health care ( 7).
According to Mosh and colleagues, low risk perception of pregnancy and childbirth interfered with use of skilled birth attendants directly, as women become negligent and take risks of delivering at home, or indirectly through influencing poor or limited resource mobilization needed for facility birth ( 37).
Our data revealed that women had varied perceptions about pregnancy and childbirth, as well as death, risk and threat that seemed to influence their decision to choose skilled facility or unskilled home-based delivery. The lack of active support from such important social networks such as health providers has also previously been documented to affect individuals ability to sustainably overcome many structural, psychological and social barriers to utilize and or adhere to such scheduled routine care goals ( 42,43). In other studies, individual's decisions to seek particular care was influenced by sharing health information within their networks, on their perceived healthcare quality, risks, benefitsto-care through evaluation of previous care at similar locations and their willingness to recommend a certain location or facility to others that previously offered them or their significant others a good experience (44)(45)(46).
This study was one of the first attempts to understand the contribution of health care systems in Uganda in unskilled home deliveries in Uganda. The study documents women's experiences, perceptions and choices of home-based versus skilled facility delivery amongst recent postpartum women in South-western Uganda. This analysis can inform the design and implementation of patientcentered interventions that reinforce trust, social support, respectful care and women's birthing experiences within health facilities. This data can also inform interventions aimed at improving women's engagement/interaction with their health providers to increase uptake of ANC and facilitybased delivery services in an area with relatively low utilization. This study also has some limitations, as it utilized only qualitative methods and purposive selection of the study sample. This approach allows for limited generalization of study findings. However, like most qualitative studies, the goal of this study was not to generalize but rather to provide a deeper contextualized understanding of the rationale and choices for home-based versus skilled facility delivery amongst recent postpartum birth parents in South-western Uganda.

Conclusions
It is important to understand the extent to which anticipation of unsupportive, unresponsive, disrespectful treatment, and a perceived lack of tolerance for simple, non-harmful traditions prevent women from delivering at health facilities. Definitive study outcomes of such unfriendly health care systems and negative childbirth experiences will need to be evaluated within the context of stagnating maternal mortality rates in Uganda. This study also highlights the critical importance of building better interpersonal relationships between patients and providers within health systems that could facilitate useful information transfer and motivate women to deliberately and promptly make Availability of data and materials: All interview guides developed specifically for use in this study are available. The original verbatim from which the conclusions were drawn are readily available. No