A qualitative study to explore the experience of parents of newborns admitted to neonatal care unit in rural Rwanda

Background Neonatal Care Units (NCUs) provide special care to sick and small newborns and help reduce neonatal mortality. For parents, having a hospitalized newborn can be a traumatic experience. In sub-Saharan Africa, there is limited literature about the parents’ experience in NCUs. Objective Our study aimed to explore the experience of parents in the NCU of a rural district hospital in Rwanda. Methods A qualitative study was conducted with parents whose newborns were hospitalized in the Ruli District Hospital NCU from September 2018 to January 2019. Interviews were conducted using a semi-structured guide in the participants’ homes by trained data collectors. Data were transcribed, translated, and then coded using a structured code book. All data were organized using Dedoose software for analysis. Results Twenty-one interviews were conducted primarily with mothers (90.5%, n = 19) among newborns who were most often discharged home alive (90.5%, n = 19). Four themes emerged from the interviews. These were the parental adaptation to having a sick neonate in NCU, adaptation to the NCU environment, interaction with people (healthcare providers and fellow parents) in the NCU, and financial stressors. Conclusion The admission of a newborn to the NCU is a source of stress for parents and caregivers in rural Rwanda, however, there were several positive aspects which helped mothers adapt to the NCU. The experience in the NCU can be improved when healthcare providers communicate and explain the newborn’s status to the parents and actively involve them in the care of their newborn. Expanding the NCU access for families, encouraging peer support, and ensuring financial accessibility for neonatal care services could contribute to improved experiences for parents and families in general.

Comments are in black and the feedback in a different color. The article present important and interesting data that will be useful for researchers and clinicians. However there are important methodological flaws that author should clarify to consider publication in PlosOne. Please take in consideration the commentaries of reviewer 2 and I also strongly recommend to use the COREQ checklist for reporting of qualitative studies. Please also justify and make a major revision of the results section of the manuscript.
Thank you for this feedback. We have included the COREQ checklist (on the last page of this document) with our response to comments. Other feedback to the comments can be found down below. 1.Please ensure that your manuscript meets PLOS ONE's style requirements, including those for file naming. The PLOS ONE style templates can be found at https://journals.plos.org/plosone/s/file?id=wjVg/PLOSOne_formatting_sample_main_bo dy.pdf and https://journals.plos.org/plosone/s/file?id=ba62/PLOSOne_formatting_sample_title_aut hors_affiliations.pdf We have updated the formatting throughout the manuscript to comply with the guidelines of PLOS ONE.
2.Please include additional information regarding the survey or questionnaire used in the study and ensure that you have provided sufficient details that others could replicate the analyses. For instance, if you developed a questionnaire as part of this study and it is not under a copyright more restrictive than CC-BY, please include a copy, in both the original language and English, as Supporting Information.
A semi-structured in-depth interview guide was developed for this study. We have attached the Kinyarwanda (the local language) and English versions of the semistructured interview guide as a supplementary material. 3.In your Methods section, please provide additional information about the participant recruitment method and the demographic details of your participants. Please ensure you have provided sufficient details to replicate the analyses such as: -the recruitment date range (month and year) -a description of any inclusion/exclusion criteria that were applied to participant recruitment -a table of relevant demographic details -a statement as to whether your sample can be considered representative of a larger population -a description of how participants were recruited -descriptions of where participants were recruited and where the research took place. a.Thank you for the suggestion. We have added the recruitment date and inclusion and exclusion criteria in our methodology section as recommended. Now it read as (p.8): Parents or primary caregivers of neonates discharged from the NCU between September 2018 and January 2019 (three months prior to data collection) were included in the study. To ensure that parents and caregivers had been amply exposed to the NCU experience, we only included those whose newborns were admitted to the NCU for at least three days. While some mothers and caregivers were aged below 18 years, we excluded them since their experience tends to be unique because of stigma associated with teenage pregnancy in Rwanda [31]. The acquisition of consent for the participants aged below 18 is additionally different. To ensure diversity and a mix of experiences, we purposively stratified the samples by distance (living within and more than 1-hour walking distance from the facility), by admitting diagnosis (prematurity and other reasons), and outcome (died or alive at discharge).
b.We have also inserted a paragraph on recruitment procedure to describe how and where participants were recruited (P. 9): The recruitment took place between December 2018 and January 2019. After acquiring the approval to access data from Ruli District Hospital leadership, we made the list of eligible potential participants and their geographical locations from the NCU registry. We contacted the nearby Community Health Worker (CHW) to request permission on our behalf and book us an appointment to the potential participants' homes. On the appointment date, the interviewer was accompanied by the CHW to the potential participant's home which is where the data collection took place. c. We have included the table of demographics d.We have made clear the issue of representativeness among our limitations. (p.25): This study has some limitations. Most respondents in our study were women, and insights from fathers were relatively limited. The current study was conducted in a district hospital that receives support from a few non-government organizations. Not all Rwandan hospitals receive such support, thus the findings may not be generalizable to other Rwandan health facilities. 4.Please provide additional details regarding participant consent. In the ethics statement in the Methods and online submission information, please ensure that you have specified whether consent was informed.
We have inserted the consent process in the data collection tool and procedure section, now it reads as (P. 9): The study was approved by the Rwanda National Ethics Committee (No. 107/RNEC/2019) and the Institutional Review Board for the University of Global Health Equity. Ruli District Hospital provided approval for NCU data access and participants signed informed consent prior to the beginning of the interviews. To protect the participants' confidentiality, we de-identified all quotes included in the results by removing the names, and details that could lead to identify the individual participant or their healthcare provider. 5.We note that you have indicated that data from this study are available upon request. PLOS only allows data to be available upon request if there are legal or ethical restrictions on sharing data publicly. For information on unacceptable data access restrictions, please see http://journals.plos.org/plosone/s/data-availability#locunacceptable-data-access-restrictions.
In your revised cover letter, please address the following prompts: a)If there are ethical or legal restrictions on sharing a de-identified data set, please explain them in detail (e.g., data contain potentially identifying or sensitive patient information) and who has imposed them (e.g., an ethics committee). Please also provide contact information for a data access committee, ethics committee, or other institutional body to which data requests may be sent. b)If there are no restrictions, please upload the minimal anonymized data set necessary to replicate your study findings as either Supporting Information files or to a stable, public repository and provide us with the relevant URLs, DOIs, or accession numbers. Please see http://www.bmj.com/content/340/bmj.c181.long for guidelines on how to de-identify and prepare clinical data for publication. For a list of acceptable repositories, please see http://journals.plos.org/plosone/s/data-availability#locrecommended-repositories. We will update your Data Availability statement on your behalf to reflect the information you provide. The interview transcripts are all available should they be needed. 6.Your ethics statement should only appear in the Methods section of your manuscript. If your ethics statement is written in any section besides the Methods, please delete it from any other section. The ethics statement is in the method section (P.9). The study was approved by the Rwanda National Ethics Committee (No. 107/RNEC/2019) and the Institutional Review Board for the University of Global Health Equity. Ruli District Hospital provided approval for NCU data access and participants signed informed consent prior to the beginning of the interviews. To protect the participants' confidentiality, we utilized participant numbers in the transcripts instead of their names, and we de-identified all quotes included in the results by removing details that could lead to the recognition of the individual participant or their healthcare provider. 7.Please include your tables as part of your main manuscript and remove the individual files. Please note that supplementary tables should be uploaded as separate "supporting information" files.
We have placed all of the tables within the text where they are referenced.

Background
Neonatal mortality makes up nearly half of all deaths among children under five years of age [1]. It is estimated that nearly 1.9 million newborn deaths can be averted by 2025 if quality maternal and newborn care interventions were implemented [2]. Expansion of access to specialized neonatal care units (NCUs) for sick and small newborns is one of the global priorities to reduce neonatal mortality [1]. Despite the tremendous benefits of NCUs in achieving better neonatal health outcomes, studies exploring the experience of parents in NCUs have shown it to be a stressful experience for families [3][4][5][6][7][8].
While there is a large body of literature regarding parental experience in NCUs in western countries, very little is known in Sub-Saharan Africa [9,10]. A small number of studies in South Africa showed that parents often experience negative emotional feelings and various challenges in NCUs [8,11]. Many parents expressed depressive symptoms and inability to bond with their newborns [12][13][14][15][16]. Some newborns were abandoned in the NCU, and this disruption of parental care can contribute to inferior early child development outcomes, lower educational attainment, and poorer lifetime economic earnings [17]. However, the findings and recommendations from South Africa -a high middle-income country, are difficult to transfer to other Sub-Saharan African nations -predominantly low-income countries [18].
Between 2005 and 2015, Rwanda has documented a rapid decline in under-five child mortality from 152 to 50 deaths per 1,000 live births and neonatal mortality from 37 to 20 deaths per 1,000 live births [19]. Despite such tremendous progress, neonatal deaths still contribute to 40% of all under-five deaths in Rwanda [19]. In order to accelerate the reduction in neonatal mortality, the Rwandan Ministry of Health launched the National Neonatal Care Protocol in 2012 addressing the gaps directly related to clinical neonatal care [20] and scaled-up hospital Page 5 of 34 level neonatal care countrywide. However, other than for skin to skin care, the protocol does not integrate parents into the NCU environment [21,22]. One quantitative study found high stress score and the predominant stressors were the babies' appearance and behavior among parents of newborns admitted to NCU in an urban tertiary hospital [23].
Quality healthcare requires both the provision of evidence-based clinical care to newborns and also ensuring a positive experience of the newborn and their families [24]. High quality care cannot be fully achieved unless the experience of care meets the needs of families, which requires knowing their experiences, and designing appropriate interventions [24][25][26].
Accordingly, this study explored the experience of parents whose neonates were hospitalized and discharged from the NCU in a district hospital in rural Rwanda. The results of this study can add to the existing literature on the experience of parents with newborn children in the NCU in lowand middle-income countries in the sub-Saharan Africa region.

Setting
This study was conducted in the catchment area of Ruli District Hospitala rural public hospital located in Rwanda's Northern Province. With 10 beds and 5 incubators, Ruli District Hospital's NCU also serves as a referral site for hydrocephalus surgical treatment. In 2017, there were 459 NCU admissions [27].

NCUs at District hospital levels in Rwanda
NCUs at the district level in Rwanda provide preventive, curative, and rehabilitation care to the small and sick newborns, and those at risk for complications [28,29]. The majority of babies who are referred to the district level NCUs are usually those born too early and/or too small (with weight below 2.5 kg), but occasionally too big (above 4 kg); babies with birth asphyxia; and babies with risk for infection as stated in the national clinical guideline (including but not limited to babies born at home, from mothers who presented with a fever during labor or 24 hours after delivery, or rupture of membranes 18 hours before delivery) [28,30].
District level NCUs exist as a separate unit from maternity even though they work closely together. They treat newborns from both the health centers of the hospitals' catchment area and the hospital maternity. Babies born at home are automatically referred to the NCU for risk of infection, and while those born at the health centers and the hospital maternities are evaluated for any necessity to refer to them to the NCU. If transferred to the NCU, hospitals' procedures vary but at Ruli DH, the baby's mother or closest relative accompany the baby inside the NCU [28].
NCUs in Rwanda provide care at varying capacities yet the health service package for public health facilities determines that they should be able to offer supportive oxygen to babies with birth asphyxia, continuous positive airway pressure to premature and term babies with respiratory distress, antibiotic therapy, thermal regulation support, fluid and electrolytes when necessary to name a few [29]. Specialized neonatal care is usually absent at district levels and newborns who require it are sent to referral hospitals' NCUs.
Page 7 of 34

Design
We used qualitative descriptive and contextual approach. Semi-structured interviews were conducted to understand the experiences of parents having a newborn hospitalized and discharged from the NCU.

Study Participants
Parents or primary caregivers of neonates discharged from the NCU between September 2018 and January 2019 (three months prior to data collection) were included in the study. To ensure that parents and caregivers had been amply exposed to the NCU experience, we only included those whose newborns were admitted to the NCU for at least three days. While some mothers and caregivers were aged below 18 years, we excluded them since their experience tends to be unique because of stigma associated with teenage pregnancy in Rwanda [31]. The acquisition of consent for the participants aged below 18 is additionally different. To ensure diversity and a mix of experiences, we purposively stratified the samples by distance (living within and more than 1hour walking distance from the facility), by admitting diagnosis (prematurity and other reasons), and outcome (died or alive at discharge).

Recruitment procedure
The recruitment took place between December 2018 and January 2019. After acquiring the approval to access data from Ruli District Hospital leadership, we made the list of eligible potential participants and their geographical locations from the NCU registry. We contacted the nearby Community Health Worker (CHW) to request permission on our behalf and book us an appointment to the potential participants' homes. On the appointment date, the interviewer was accompanied by the CHW to the potential participant's home which is where the data collection took place.

Data collection tool and procedures
Interviews were conducted using a semi-structured interview guide that included questions related to the parents' and caregivers' feelings on neonatal admission and their experience in the NCU, the quality of communication with healthcare providers, their involvement in the newborn's care, and the support received from the hospital staff, relatives, or others during the stay. We developed the interview guide in English and translated it to Kinyarwanda -the local language for conducting the interviews.
The interview guide was pre-tested and piloted on two parents before the actual data collection.
The pilot did not lead to changes in the protocol hence its participants were included in the analysis. Two female data collectors who were not healthcare providers nor worked in the study district were trained to conduct the interviews. Husbands and wives were interviewed separately.
The interviewer provided information about the study to the participants and clarified that participation was voluntary. Those who accepted to take part in the study provided written informed consent before the interview begins. The interviews took place the quiet place at the participants homes. The study participants received a gift consisting of a baby hat and a bar of soap. The Principal Investigator listened to the interviews at the end of each data collection day to determine if the saturation was reached.

Data analysis
The interviews were transcribed and translated, then coded by two independent investigators. We explored the literature on the experience of parents in typical low-income settings' NCUs and used it to create the preliminary codebook. The codebook was amended using pilot interviews.
The independent coders met with the Principal Investigator to resolve any discrepancies by discussion and revision of the definition of the codes. The transcripts were coded then grouped into themes. We used Dedoose software to organize data for analysis.

Ethics
The study was approved by the Rwanda National Ethics Committee (No. 107/RNEC/2019) and the Institutional Review Board for the University of Global Health Equity. Ruli District Hospital provided approval for NCU data access and participants signed informed consent prior to the beginning of the interviews. To protect the participants' confidentiality, we utilized participant numbers in the transcripts instead of their names, and we de-identified all quotes included in the results by removing details that could lead to the recognition of the individual participant or their healthcare provider.

Results
A total of 21 interviews were conducted (Table 1). Participants were aged between 20 and 56.
Nineteen (90.5%) were female participants. Seventeen (80.9%) of the participants were married and 4 (19.0%) were single. Nineteen (90.5%) had children who were alive, while 2 (9.5%) died prior to discharge from NCU. Eight (31.0%) lived within an hour walking distance to the Page 10 of 34 hospital while 13 (61.9%) had to either take the bus or a motorcycle or walk for more than an hour to the hospital from their homes. Prematurity (42.8%) and infection risk or fever (14.2%) were the most common reasons for admission. All participants had health insurance.
Four overarching themes were generated from the interviews with parents regarding their experience of having their newborn hospitalized in NCU at Ruli DH. Theme one consists of parental emotional adaptation to the newborn care in the NCU. The second theme describes the parental adaptation to the NCU environment which includes the physical environment and rules and regulations of the NCU. The third theme covers the experience of parents with other people in the NCU and the last theme discusses the Financial aspects of the care and support received at Ruli DH.

Stress due to the visual sight of the baby and the NCU
Many parents reported negative feelings caused by the look at the different tubes and wires attached to the newborns inside the incubators, the sound of the equipment and sometimes the care provided to the newborns. While the fathers were not allowed into the incubator room part of the NCU, one father reported managing to trespass into that room and described how he felt when he saw his fifth newborn in the incubator for prematurity: "I felt scared to see the machines. You say, look at these machines, and the baby is lying in them naked. I was not sure that my baby would survive." (Father, age unknown).
Another mother shared:

Theme 2. Parental Adaptation to the NCU Environment
Parents reported some regulations that were positivesuch as uninterrupted access to their newborn but other regulations of no visitors, no caregivers, and no eating inside the ward stressed mothers. The procedures of always cleaning hands, changing shoes, and putting on different clothing (aprons) are a source of stress to some mothers even though some mothers appreciated them due to the resulting calmness in NCU. Caregiver's stress was worsened by insufficient induction to the NCU contributing to a lack of understanding of NCU rules and procedures.

Being part of the baby's care
Mothers reported that having full access to the newborn any time throughout hospitalization, even when the newborns were inside incubators or on phototherapy, brought them comfort.
Having some responsibility for the care of their newborns, ranging from paying the bills, to bringing required materials, to feeding or bathing their newborn, improved their feelings about Page 14 of 34 the situation even though the part of responsibility was occasionally a source of stress to parents who were unable to bring fulfill all their responsibilities (Paying bills, providing newborn materials such as clothes, bringing hygiene materials and so on).
"The healthcare providers told us, we could go at any time to have a look at our babies.
They told us to be close to our babies. We hence used to come look at our babies and [go] back whenever." (mother, age 35).

"They [nurses] told me to go and breastfeed my baby anytime I wanted. I felt no problem
because I was free to go and see the baby anytime." (mother, age 22). While mothers rejoiced in being able to access their newborns at any time, the adaptation and stay was deranged when mothers were unable to care for their newborns such as lacking breast milk. The stay was additionally unpleasant for some mothers who lacked means to follow up their own health because they were still sick when the newborns were transferred to the NCUs.
"What stressed me is when they told me to express breastmilk for my baby. The baby stayed in the machines on oxygen, and when it was time to start pumping breast milk for the baby, I could not get it." (mother, age 36).
"Because of taking care of the baby while I was still sick, I became sicker and felt as if I was dead. I did not know what I was sick of but when I went to seek care I had high fever and was shivering." (mother, age 33).

Access to their babies
The fathers were the only caregivers other than the mothers reported to have some access into the general room (Kangaroo Mother Care Unit), though they had limited visiting hours and were not allowed to touch or hold the newborns, or see them if they were in the incubators' room. Other Page 15 of 34 visitors were not allowed into the NCU. The mothers felt very sad when the newborn passed away without having the father see them.
A mother reported her feeling that the father did not see their newborn before she died: "I told one of the other mothers in the NCU that I was very sad because my baby was going to die before her father could at least see her. The mother told me that I should have requested it before, and I told her that nobody advised me to ask a healthcare provider for permission so that my husband could visit my baby." (mother, age 35)

Orientation to the NCU
Parents did not appreciate the fact that they were not provided a rigorous initial orientation so that they consciously abide by the NCU regulations. They would find themselves frustrated by the things about which they should have been informed at admission. Most of quarrels between parents and healthcare providers resulted from the tendency of mothers to bring visitors to the NCU. In addition to the stressors from the NCU regulations, mothers reported the NCU interior to have low temperature which make it chilly. They even feared that the coldness they felt affected the babies as well. Additionally, the nature of the NCU care makes mothers unable to rest as many of them had to watch over their newborns day and night.
"Cold... ohhhh, it was too cold. Our babies were freezing and were losing weight. The room was freezing." (mother, age 44).
Despite the many stressful aspects of the NCU, mothers reported the environment to be safe from disorder and robbery, clean and quiet which provides a sense of comfort and positive feelings. Some mothers reported appreciating the safeguard put in place to minimize visitations explaining that such measures allow the NCU environment to remain clean, and silent which they thought is good for the sick newborns.
"I thought the place would be smelling bad. I, however, found it different. They [healthcare providers] teach them [mothers] morning and evening to have hygiene so that even newcomers can be informed about hygiene." (mother, age 43).
"I was very happy with the hygiene of the NCU. I was happy with the way they restrict the access into the Unit where there are babies born with problems. You see, allowing many people inside would cause the room of sick babies to be stuffy. They avoided that.
The way they prohibit the entry of shoes from outside is good." (mother, age 27) "You enter and you can even make a prayer silently in your mind to avoid making noise.
You make sure there is no noise in the NCU, no one is allowed to scream, the people inside are so quiet. It is not authorized to make phone calls or other devices that may produce noise." (mother, 35).

Theme 3. Experiences with other people in NCU
Parents reported having both positive and negative interactions with healthcare providers, and an overall strong sense of trust for healthcare providers. Other mothers in the NCU were reported to be a consistent source of support (emotional and material) for each other.

Interactions with healthcare providers
A mix of healthcare provider attitudes, some positive and others negative, were reported by parents. They were appreciative of the healthcare providers who explained the care their newborns received, provided guidance and updates on the newborn's condition, and encouraged them to ask questions. "We would joke with healthcare providers and occasionally forget that our babies are hospitalized. They would come and comfort us telling us that our babies would get cured.
You could notice that they were doing whatever possible to converse with us." (Mother, The provision of information about the findings of assessments contributed to the parent's understanding of the newborn's condition and was one key factor to the positive feelings and comfort to the mothers in the otherwise hopeless conditions. However, some healthcare providers were reported to have a bad attitude which made the NCU stay stressful and challenging for some mothers. Parents reported a negative experience of interacting with some healthcare providers who spoke in a rude tone, provided no guidance or information, and showed no empathy while requesting newborn care materials from parents. Blaming parents for the newborn's condition was another attitude repeatedly reported by parents.
In most cases, the parents reported that healthcare providers blamed them for not taking good Most of the parents, including those whose newborns died prior to discharge, trusted that providers were doing their best to save the newborns.

Interactions with other parents
In addition to turning to their partners, family, and relatives for support at the time of admission and during the stay, fellow mothers in NCU provided emotional and material (food, clothes, and other consumables) support which was a great comfort for many.
"Other mothers are the ones who helped me feel better. When I looked at their babies and they told me that their babies were sicker when they arrived than [at] that time, I felt better." (mother, age 27).
Page 20 of 34 "There was another woman next to me, who had also given birth to twins and whose caregiver was her mother. They used to lend me materials and because she also came from far, when they would have brought them food they cooked and shared with me. I did not have people who could bring me food, so I survived because there were people of goodwill at the hospital." (mother, age 25).
Other mothers also helped explain the situation of the NCU to others when healthcare providers did not:

Theme 4. Financial aspects of the care in NCU and support received
Many mothers and fathers reported that the financial burden due to NCU admission was challenging and was a stress for them. They had difficulty in paying many of the NCU requirements such as specific clothing, basins, flasks as well as the hospital fee. Despite all participants having health insurance, many could not afford the co-payment. Two interviewees reported they had to sell a portion of their land to pay for the NCU costs. The cost of hospitalization was a major source of stress, and any forms of intermittent support they had received from others, like porridge and food received from the Catholic sisters or university students supporting the hospital were very much appreciated by the parents.
"Every morning they [healthcare providers] bring the porridge and bread. I cannot blame them for anything. The healthcare providers bring the hungry people food from the Sisters.
"The most important thing that they helped us with was the free porridge in the morning.
It was very impactful because a mother cannot breastfeed the baby without eating the porridge. It is the best help they gave us. We ate the porridge happily with the peace of mind." (mother, age 25).

Discussion
Parents shared both positive and negative aspects of their experience inside the NCU in rural Rwanda's district hospital. The parents highlighted common experiences and difficulties adapting to the NCU environments both emotionally and physically, and financial barriers but also unique positive features of the NCU in Rwanda such as high levels of trust of parents for the healthcare providers, and uninterrupted access of mothers to their newborns.
The parents in our study shared similar experiences as reported in other previous studies in generalwhen their newborns were hospitalized, parents were understandably stressed and worried about their newborn's condition [7]. Consistent to other studies, inclusion in the provision of care contributed to parents' comfort, hope and confidence to keep caring for the newborns even after discharge [7,26,32]. According to other studies though, parents not only should be involved in the care, but also in the decision making about the newborn's care [33,34].
However, in our study, parents did not complain about not being involved in the decision-making for their newborns' care. On the contrary, many placed high trust in their healthcare providers. This could be due to many reasons. Parents may not feel sufficiently informed to make the decision, hence leaving it up to the healthcare providers to decide what is best for the newborn.
The parents reported that they trusted the healthcare providers were providing the best possible treatment. There is a need for further research on the parental involvement in decision making in the NCU and other healthcare settings.
Having non-restrictive access to their newborns was one of the positive experiences for mothers. Such access, however, is not always allowed in many NCUs [23] and even other NCUs in Rwanda have restricted access [35]. Limited access to the NCUs for fathers and other family Page 23 of 34 members or caregivers was a source of concern for the parents in our study. Restricted NCU access is usually justified as necessary for infection control, however, studies present controversial evidence. One study in the United Kingdom found that restricted access was associated with a significant decline in respiratory infections [36], while another study in India showed that allowing parents in the NCU to directly participate in their newborn's care did not increase in hospital acquired infections [37]. NCU access restrictions have particularly been adopted during the COVID-19 pandemic where Neonatal Intensive Care Units that preserved the 24/7 parental presence decreased from 83 to 53% according to a global survey [38]. In all cases, education on hygiene practices are essential for all parents, visitors and providers. In the instances when the parents' full access to the NCU is scientifically justified as harmful to the newborn's health, an open and ongoing communication, emotional support, and the discussion on keeping the newborn connected to parents is needed [39].
Little involvement of fathers in newborn care has particularly been a source of negative experience for mothers and fathers. The lack of father involvement in the newborn care could reduce father's role to merely providing financial support. Studies have shown that little or no involvement of fathers in NCU caused the fathers to be scared of their preterm newborns, affected their early bonding, and eventually father-child relationships [3,40]. Recognizing the importance of parental access to newborns, some healthcare providers break the rules and allow occasional visitationsleading to some reports of "good nurses" and "bad nurses" [41].
Hospitals should reconsider the NCU visitation policy, and aim to deliver family-centered care to promote the best experience for the families and their newborns.
The quality of communication between caregivers and providers greatly impacted the experience of parents in the NCU. When NCU staff provided information about the newborn's Page 24 of 34 condition and showed a caring attitude, parents felt more hopeful, understanding, confident and a will to trust healthcare providers. Similar to the literature, our study highlighted that poor communication and blame by healthcare providers are a source of stress for parents [42].
The parental interactions and peer support were a source of positive experience for parents and should be encouraged. A systematic review has shown that informal or formalized peer support could improve the experiences and well-being of parents [43]. Such findings further reinforced the importance of clear communication from healthcare providers. When healthcare providers gave parents proper and clear orientation and instructions, such messages will be passed along among other parents.
Almost all respondents in our study mentioned the cost was a great source of stress. In Rwanda, 78.5% of the population were enrolled in the Community Based Health Insurance (CBHI) in 2019 [44]. Basic drugs and medical services are covered by CBHI. However, patients or their families are often required to pay for more specialized services and diagnostics. And if medication stock out occurs, they must purchase the medications for outside the hospitals. All these can contribute to extra financial burden. Additionally, indirect medical cost like transportation, food, and time from work are all imposing significant financial cost to the families. Similar to other studies, the cost of the NCU care, materials needed for the care, transportation, and food are serious challenges [45]. Studies to assess the cost related to NCU admission, and potential catastrophic out of pocket expenditures, should be investigated to inform policy makers if advocacy for expanding insurance coverage is needed.

Page 25 of 34
This study has some limitations. Most respondents in our study were women, and insights from fathers were relatively limited. The current study was conducted in a district hospital that receives support from a few non-government organizations. Not all Rwandan hospitals receive such support, thus the findings may not be generalizable to other Rwandan health facilities.

Conclusion
The admission of a newborn into the NCU is a source of stress for parents. Their stress is

Consent for publication
All co-authors read and approved the final manuscript.

Availability of data and materials
Not applicable

Competing interests
The authors declare that they have no competing interests.

Funding
Page 27 of 34 The study was conducted with support from Grand Challenges Canada Saving Lives at Birth as part of the evaluation of the All Babies Count initiative. UGHE covered the cost of Dedoose software utilized in the analysis.

Authors' contributions
SB contributed to the study design, data collection, analysis, and writing the manuscript.
CK and RW contributed in the study design, data analysis and writing the manuscript.

Background
Neonatal mortality makes up nearly half of all deaths among children under five years of age [1]. It is estimated that nearly 1.9 million newborn deaths can be averted by 2025 if quality maternal and newborn care interventions were implemented [2]. Expansion of access to specialized neonatal care units (NCUs) for sick and small newborns is one of the global priorities to reduce neonatal mortality [1]. Despite the tremendous benefits of NCUs in achieving better neonatal health outcomes, studies exploring experience of parents in NCUs have shown it to be a stressful experience for families [3][4][5][6][7][8].
While there is a large body of literature regarding parental experience in NCUs in western countries, very little is known in Sub-Saharan Africa [9,10]. A small number of studies in South Africa showed that parents often experience negative emotional feelings and various challenges in NCUs [8,11]. Many parents expressed depressive symptoms and inability to bond with their newborns [12][13][14][15][16]. Some newborns were abandoned in the NCU, and this disruption of parental care can contribute to inferior early child development outcomes, lower educational attainment, and poorer lifetime economic earnings [17]. However the findings and recommendations from South Africa -a high middle-income country, are difficult to transfer to other Sub-Saharan African nations -predominantly low income countries [18].
Between 2005 and 2015 , Rwanda has documented a rapid decline in under-five child mortality from 152 to 50 deaths per 1,000 live births and neonatal mortality from 37 to 20 deaths per 1,000 live births [19]. Despite such tremendous progress, neonatal deaths still contribute to 40% of all under-five deaths in Rwanda [19]. In order to accelerate the reduction in neonatal mortality, the Rwandan Ministry of Health launched the National Neonatal Care Protocol in 2012 addressing the gaps directly related to clinical neonatal care [20] and scaled-up hospital level neonatal care countrywide. However, other than for skin to skin care, the protocol does not integrate parents into the NCU environment [21,22]. One quantitative study found high stress score and the predominant stressors were the babies' appearance and behavior among parents of newborns admitted to NCU in an urban tertiary hospital [23].
Quality healthcare requires both the provision of evidence-based clinical care to newborns and also ensuring a positive experience of the newborn and their families [24]. High quality care cannot be fully achieved unless the experience of care meets the needs of families, which requires knowing their experiences, and designing appropriate interventions [24][25][26].
Accordingly, this study explored the experience of parents whose neonates were hospitalized and discharged from the NCU in a district hospital in rural Rwanda. The results of this study can add to the existing literature on the experience of parents with newborn children in the NCU in lowand middle-income countries in the sub-Saharan Africa region.

Setting
This study was conducted in the catchment area of Ruli District Hospitala rural public hospital located in Rwanda's Northern Province. With 10 beds and 5 incubators, Ruli District Hospital's NCU also serves as a referral site for hydrocephalus surgical treatment. In 2017, there were 459 NCU admissions [27].

NCUs at District hospital levels in Rwanda
NCUs at the district level in Rwanda provide preventive, curative, and rehabilitation care to the small and sick newborns, and those at risk for complications [28,29]. The majority of babies who are referred to the district level NCUs are usually those born too early and/or too small (with weight below 2.5 kg), but occasionally too big (above 4 kg); babies with birth asphyxia; and babies with risk for infection as stated in the national clinical guideline (including but not limited to babies born at home, from mothers who presented with a fever during labor or 24 hours after delivery, or rupture of membranes 18 hours before delivery) [28,30].
District level NCUs exist as a separate unit from maternity even though they work closely together. They treat newborns from both the health centers pf of the hospitals' catchment area and the hospital maternity. Babies born at home are automatically referred to the NCU for risk of infection, and while those born at the health centers and the hospital maternities are evaluated for any necessity to refer to them to the NCU. If transferred to the NCU, hospitals' procedures vary but at Ruli DH, the baby's mother or closest relative accompany the baby inside the NCU . [28].
NCUs in Rwanda provide care at varying capacities yet the health service package for public health facilities determines that they should be able to offer supportive oxygen to babies with birth asphyxia, continuous positive airway pressure to premature and term babies with respiratory distress, antibiotic therapy, thermal regulation support, fluid and electrolytes when necessary to name a few [29]. Specialized neonatal care is usually absent at district levels and newborns who require it are sent to referral hospitals' NCUs.

Design
We used phenomenological qualitative descriptive and contextual approach in this qualitative study of parent's lived experiences [31]. Semi-structured interviews were conducted to understand the experiences of parents having a newborn hospitalized and discharged from the NCU.

Study Participants
Parents or primary caregivers of neonates discharged from the NCU between September 2018 and January 2019 (three months prior to data collection) were included in the study. They had to be at least 18 years of ageTo ensure that parents and caregivers had been amply exposed to the NCU experience, we only included those and with newbornswhose newborns were admitted to the NCU for at least three days. While some mothers and caregivers were aged below 18 years, we excluded them since their experience tends to be unique because of stigma associated with teenage pregnancy in Rwanda [31]. The acquisition of consent for the participants aged below 18 is additionally different. To ensure diversity and a mix of experiences, wWe purposively stratified the samples by distance (living within and more than 1-hour walking distance from the facility), by admitting diagnosis (prematurity and other reasons), and outcome (died or alive at discharge).

Recruitment procedure
The recruitment took place between December 2018 and January 2019. After acquiring the approval to access data from Ruli District Hospital leadership, we made the list of eligible potential participants and their geographical locations from the NCU registry. We contacted the   nearby Community Health Worker (CHW) to request permission on our behalf and book us an appointment to the potential participants' homes. On the appointment date, the interviewer was accompanied by the CHW to the potential participant's home which is where the data collection took place.

Data collection tool and procedures
Interviews were conducted using a semi-structured interview guide that included questions related to the parents' and caregivers' feelings on neonatal admission and their experience in the NCU, the quality of communication with healthcare providers, their involvement in the newborn's care, and the support received from the hospital staff, relatives, or others during the stay. We developed the The interview guide in English was translatedand translated to it to Kinyarwanda -the local language used for conducting the interviews..
The interview guide was pre-tested and piloted on two parents before the actual data collection.
The pilot did not lead to changes in the protocol hence its participants were included in the analysis. Participants who fulfilled the selection criteria were identified via the NCU register and were contacted through their respective Community Health Workers and were invited to participate in the interviews. Interviews were conducted at the participants' homes on the appointment dates until saturation was reached. Two female data collectors who were not healthcare providers nor worked in the study district were trained to conduct the interviews.
Husbands and wives were interviewed separately. The interviewer provided information about the study to the participants and clarified that participation was voluntary. Those who accepted to take part in the study provided wWritten informed consents were obtained before the interview beginss. The interviews took place the quiet place at the participants homes. The study

Data Analysisanalysis
The iInterviews were transcribed and translated, then coded by two independent investigators.
We explored the literature on the experience of parents in typical low-income settings' NCUs and used it to create the preliminary codebook. The codebook was amended using pilot interviews. The independent coders met with the Principal Investigator to resolve any discrepancies by discussion and revision of the definition of the codes. The codebook was created based on the literature, and the pilot interviews. The transcripts were coded then grouped into themes. The data analysis was conducted using Dedoose Software.

Ethics
The study was approved by the Rwanda National Ethics Committee

Results
A total of 21 interviews were conducted (Table 1). Participants were aged between 20 and 56.
Nineteen (90.5%) were female participants. Seventeen (80.9%) of the participants were married and 4 (19.0%) were single. Nineteen (90.5%) had children who were alive, while 2 (9.5%) died prior to discharge from NCU. Eight (31.0%) lived within an hour walking distance to the hospital while 13 (61.9%) had to either take the bus or a motorcycle or walk for more than an hour to the hospital from their homes. Prematurity (42.8%) and infection risk or fever (14.2%) were the most common reasons for admission. All participants had health insurance.   1.1. Stress due to baby's condition shared fear and emotions while they were adapting to an unfamiliar care environment in the NCU. They shared challenges with the cold temperature of the NCU, but also reported the NCU to be clean and calming.
Many parents reported feeling fearful when they were informed that their newborn required admission to the NCU. They feared that their the children child may could die and that caused them sadness, uneasiness, hopelessness, disturbance, and anxiety.

Physical environment of NCU
In addition to the stressors from the NCU regulations, parents mothers reported the NCU interior to have low temperature which make it chilly be cold. They even feared that the coldness they felt affected the babies as well. Additionally, the nature of the NCU care makes mothers unable to rest as many of them had to watch over their newborns day and night.
"Cold... ohhhh, it was too cold. Our babies were freezing and were losing weight. The room was freezing." (mother, age 44).
Despite the many stressful aspects of the NCU, other mothers reported the environment to be safe from disorder and robbery, clean and quiet which provides a sense of comfort and positive feelings. Some mothers reported appreciating the safeguard put in place to minimize visitations explaining that such measures allow the NCU environment to remain clean, and silent which they thought is good for the sick newborns. You could notice that they were doing whatever possible to converse with us." (Mother, The provision of information about the findings of assessments contributed to the parent's understanding of the newborn's condition and was one key factor to the positive feelings and comfort to the mothers in the otherwise hopeless conditions.

Interactions with other parents
In addition to turning to their partners, family, and relatives for support at the time of admission and during the stay, fellow mothers in NCU provided emotional and material (food, clothes, and other consumables) support which was a great comfort for many.
"Other mothers are the ones who helped me feel better. When I looked at their babies and they told me that their babies were sicker when they arrived than [at] that time, I felt better." (mother, age 27).
"There was another woman next to me, who had also given birth to twins and whose caregiver was her mother. They used to lend me materials and because she also came from far, when they would have brought them food they cooked and shared with me. I did Other mothers also helped explain the situation of the NCU to others when healthcare providers did not:

Theme 4. Financial aspects of the care in NCU and support received
Many mothers and fathers said reported that the financial burden due to NCU admission was challenging and was a stress for them. They had difficulty in paying many of the NCU requirements such as specific clothing, basins, flasks as well as the hospital fee. Despite all participants having health insurance, many could not afford the co-payment. Two interviewees reported they had to sell a portion of their land to pay for the NCU costs. The cost of hospitalization was a major source of stress, and any forms of intermittent support they had received from others, like porridge and food received from the Catholic sisters or university students supporting the hospital were very much appreciated by the parents.
"Every morning they [healthcare providers] bring the porridge and bread. I cannot blame them for anything. The healthcare providers bring the hungry people food from the Sisters.
"The most important thing that they helped us with was the free porridge in the morning.
It was very impactful because a mother cannot breastfeed the baby without eating the porridge. It is the best help they gave us. We ate the porridge happily with the peace of mind." (mother, age 25). The parents in our study shared similar experiences as reported in other previous studies in general -: when their newborns were hospitalized, parents were understandably stressed and worried about their newborn's condition [7]. Consistent to other studies, inclusion in the provision of care could contributed to parents' comfort, hope and confidence to keep caring for the newborns even after discharge [7,26,32]. According to other studies though, parents not only should be involved in the care, but also in the decision making about the newborn's care [33,34].
However, in our study, parents did not complain about not being involved in the decision-making for their newborns' care. On the contrary, many placed high trust in their healthcare providers.
This could be due to many reasons. P The parents may not feel they were sufficiently informed to make the -decision, hence leaving it up to the healthcare providers to decide what is best for the newborn. The or they parents reported that they trusted the healthcare providers were providing the best possible treatment. There is a need for , or the local culture does not normally encourage such practice which makes parents unaware of the option to inquire and contribute to the discussion. Ffurther research on the parentals' involvement in decision making should be conductein the NCU and other healthcare settingsd. Having non-restrictive access to their newborns was one of the positive experiences for mothers. Such access, however, is not always allowed in many NCUs [23] and even other NCUs in Rwanda have restricted access [35]. Limited access to the NCUs by for fathers and other family members or caregivers was a source of concern for the parents in our study. Restricted NCU access is usually justified as necessary for infection control,. H however, studies have present conflicting controversial resultsevidence. One study in the United KingdomUK found that restricted access was associated with a significant decline in respiratory infections [36], while another study in India showed that allowing parents in the NCU to directly participate in their newborn's care did not increase in hospital acquired infections [37]. NCU access restrictions have particularly been adopted during the COVID-19 pandemic where Neonatal Intensive Care Units that preserved the 24/7 parental presence decreased from 83 to 53% according to a global survey [38]. In all cases, education on hygiene practices are essential for all parents, visitors and providers. In the instances when the parents' full access to the NCU is scientifically justified as harmful to the newborn's health, an open and ongoing communication, emotional support, and the discussion on keeping the newborn connected to parents is needed [39]..
Little involvement of The exclusion of fathers ifathers in the newborn care hasn particularly been was a source of common negative experience shared by our study participantsfor mothers and fathers. Such exclusionThe lack of father involvement in the newborn care could reduce father's role to merely providing financial support. Studies have shown this that little or no involvement of fathers in NCU could leaveleave the fathers feeling scared of their their preterm newborns, affect early bonding, and father-child relationships [3,40].
Recognizing the importance of parental access to newborns, some healthcare providers break the rules and allowed occasional visitationsleading to some reports of "good nurses" and "bad nurses" [41]. Hospitals should reconsider the NCU visitation policy, and aim to deliver familycentered care to promote the best experience for the families and their newborns.
The quality of communication between caregivers and providers greatly impacted the experience of parents in the NCU. When NCU staff provided information about the newborn's condition and showed caring attitude, parents felt more hopeful, understanding, confident and a will to trust healthcare providers. Similar to the literature, our study highlighted that poor communication and blame by healthcare providers are a source of stress for parents [42].
The parental interactions and peer support were a source of positive experience for parents and should be encouraged. A systematic review has shown that informal or formalized peer support could improve the experiences and well-being of parents [43]. Such findings further reinforced the importance of clear communication from healthcare providers. When healthcare providers gave parents proper and clear orientation and instructions, such messages will be passed along among other parents.
Almost all respondents in our study mentioned the cost was a great source of stress. In Rwanda, 78.5% of the population were enrolled in the Community Based Health Insurance (CBHI) in 2019 [44]. Basic drugs and medical services are covered by CBHI. However, patients or their families are often required to pay for more specialized services and diagnostics. And if medication stock out occurs, they have to purchase the medications for outside the hospitals. All these can contribute to extra financial burden. Additionally, indirect medical cost like transportation, food, and time from work are all imposing significant financial cost to the families. Similar to other studies, the cost of the NCU care, materials needed for the care, transportation, and food are serious challenges [45]. Studies to assess the cost related to NCU

Limitations
This study has some limitations. Most respondents in our study were women, and insights from fathers were relatively limited. The current study was conducted in a district hospital that receives support from a few non-government organizations. Not all Rwandan hospitals receive such support, thus the findings may not be generalizable to other Rwandan health facilities.

Conclusion
The admission of a newborn into the NCU is a source of stress for parents. Their stress is exacerbated by the environment including barriers to access by fathers and other family members, high-cost of neonatal care, and negative interactions with healthcare providers.
However, the experience of care is improved by unrestricted access to the newborns by mothers as well as good communication with and trust of healthcare providers. Health facilities should also consider expanding the NCU access, encouraging peer support and actively involving parents in the care of their newborns. Further work is needed to understand the financial barriers for accessing NCU care.