A total of 21 interviews were conducted (Table 1), 19 (90.5%) were female and age between 20 and 65 years. 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.
Demographic characteristics of participants
Age (n = 19)
Newborn’s outcome at discharge
Distance to hospital
< 1 hour
> 1 hour
Reason for admission
Low Birth Weight
*Other: asphyxia, congenital malformation, jaundice, not sucking on breast, respiratory distress, cord bleeding
Participants shared four overarching themes about their experience of having their newborn hospitalized in NCU at Ruli DH. Theme one consists of parental experience, perception, and adaption to the NCU environment. The second theme describes the parental interactions and experiences with healthcare providers and other mothers in the NCU. The third theme covers the parental experience and perceptions of the regulations, policies and procedures of NCU. And the fourth and last theme covers the financial challenges of affording NCU care and the support received from the hospital.
Theme 1. Adapting to the NCU Environment
Parents shared fear and many 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. The fear that their children may die caused them sadness, uneasiness, hopelessness, disturbance and anxiety.
“There was no other way I could understand it... I didn’t even feel hopeful because the baby was too premature. I was just waiting for what God was to give me. My baby only weighed 1.2 kg. I felt hopeless and feel the healthcare providers were struggling for nothing.” (Mother, age 36).
Several mothers reported a very emotional response to their newborn’s admission:
“I felt very sad and I am telling you that I would suddenly burst into tears. I was alone with the baby always expecting to be discharged the following day. I felt disturbed, wept repeatedly, then breastfeed the baby but suddenly find myself crying.” (Mother, age 28).
“I cried. Other mothers used to say that no other person enters in there [NCU]. I felt like it was over for me when I saw myself referred there. I thought that I would not leave soon and I imagined that my baby would eventually die. The place [NCU] is strange. Before this time, we used to bring food to mothers whose babies would be hospitalized in the NCU. We would not get in contact with them [other mothers]. We would see them from a distance, and you could not see their babies. When I realized that it was my turn to go there, I felt very sad, and it was hard for me to accept the situation” (Mother, age 25).
Many 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. A father managed to trespass into the NCU and described how he felt when he saw his fifth newborn in the NCU 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:
“I was stressed because I was thinking that she (my baby) would not survive. I saw that my baby was on oxygen, and another noisy machine, I lost hope because the baby spent the whole week in the incubator. When I arrived at the hospital, I was so worried that my baby would not make it.” (Mother, age 35).
In addition to the emotions parents felt in the NCU, parents reported the NCU to be cold and crowded. 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. The death of a fellow mother’s newborn was also another source of stress for the rest of the mothers in the NCU.
“Cold... ohhhh, it was too cold. Our babies were freezing and were losing weight. The room was freezing.” (mother, age 44).
Additionally, parents feared that their newborn may be hurt by the care provided in the NCU.
“He [a nursing student] held it [a needle] and pierced without first looking for where the vein was, and he attempted three times. The third time, I told him to stop paining my baby.” (Mother, 32).
Some mothers felt stressed by not being able to care for their newborns, or provide sufficient breastmilk. They also lacked means to follow up on their own health because they were usually 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).
Despite the many stressful aspects of the NCU, other mothers reported the environment to be safe, clean and quiet which provides a sense of comfort and positive feelings.
“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 2: Experiences with Other People in NCU
Caregivers 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 for each other.
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.
“There was one woman [healthcare provider] who used to talk to us. She would say, ‘Do you have any questions?’, and we often responded, ‘no’. She would then ask us what she would have taught us. We were more comfortable with that healthcare provider.” (Mother, age 28).
“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, age 33)
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.
“It was my first time to see such kind of disease [jaundice], my first time to hear of it. I had a hope that he will get well soon. After they [healthcare providers] explained the condition to me, I felt ensured that the child shall get cured and I had no problem. In fact, because the healthcare provider explained the baby’s condition to me, I did not ask again. However, before explaining to me, I was very curious to know what caused the disease but they gave me explanations.” (Mother, age 22).
“When I arrived, they [healthcare providers] examined the baby, looked at her vomiting and the problem in her eyes and they comforted me saying it would go away little by little. They advised me how to position my baby while breastfeeding and it decreased gradually. Gradually as they talked to me and comforted me, I regained the mood.” (Mother, age 28).
However, some healthcare providers were reported to have a bad attitude which made the NCU stay stressful and challenging for some mothers.
“Whenever healthcare providers entered, I felt fear because they entered speaking roughly, except that you ought to get used to it. Once, when the baby was inside a machine, they wore only pampers because they were naked inside the machines. I went outside immediately after breastfeeding. A few minutes after, when I came back the baby had passed stools. The healthcare provider immediately talked to me in a rude voice. I tried to explain that I was there with my baby a few seconds ago. She refused to understand and roughly said I should look after my baby at every moment.” (Mother, age 22).
“They yelled at me asking me why I had not yet bought clothes for my baby. I begged and told them that I could not afford to buy the clothes because I am poor. She rudely replied that poor people do not go to seek care at Ruli hospital.” (Mother, age 36).
Blaming parents for the newborn’s condition was another attitude repeatedly reported by parents.
“My baby had a fever and was vomiting. I called the healthcare provider who was on day duty and she said that it was because of me that I was not holding my baby well.” (Mother, age 22).
“They [healthcare providers] kept telling me that I had refused to go to seek care in Kigali when I was referred. I told them that I had no means.” (Mother, age 36).
Most of the parents interviewed expressed high levels of trust in healthcare providers, including those whose newborns died prior to discharge. Parents reported that they trusted that providers were doing their best to save the newborns.
“I wished to be involved, but I did not decline any treatment because I could see them coming to treat my baby and I felt that because they are healthcare providers my baby would be cured.” (Mother, age 33).
“I felt that because my baby is in the hands of healthcare providers, she would be fine. They would comfort us saying that no baby would die anymore, and we felt hopeful. After that, they took an exam and the result was good and I was very happy that my baby was fine. They took care of my baby. They tried whatever possible.” (Mother, age 25).
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 care attendant 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:
“We had to transmit the information to the mothers who were new and did not know these instructions because healthcare providers were not always in [a] good mood of communicating.” (Mother, age 25).
“There were mothers without care attendants. They go into the eating hall to see if someone can give them food. We do share food with them because one cannot finish it. I have noticed that people help each other because of the service that takes place at the hospital. When you see how healthcare providers try to support us, and you wonder how we cannot support each other's mothers as well.” (Mother, age 28).
Theme 3. Experience of the strict regulations, policies, and procedures of NCU
Caregivers reported some regulations that were positive – such as uninterrupted access to their newborn but other regulations of no visitors, no care attendants, and no eating inside the ward stressed mothers. The procedures of always cleaning hands, changing shoes, putting on different clothing (aprons) are a source of stress to some mothers even though a some mothers appreciated them due to the resulting calmness in NCU. Caregivers stress was worsened by insufficient induction contributing to a lack of understanding of NCU rules and procedures.
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 the situation.
“Of course, we, as mothers, feel very stressed. However, the healthcare providers told us, there was no problem, 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).
The fathers were the only caregivers other than the mothers reported to have some access into the NCU, though they had limited visiting hours and were not allowed to touch or hold the newborns. Other visitors were not allowed into the NCU. Mothers expressed the challenges and stress related to not having their husbands be able to see their newborn, especially if they had no hope that the newborn would survive.
A mother reported 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 the permission so that my husband could visit my baby.” (mother, age 35)
Parents did not appreciate the way they were not provided initial orientation so that they can consciously abide on the NCU regulations. They would find themselves frustrated from the things which they should have been informed about at admission.
“She [healthcare provider] asked me why I had violated the rules [allowing the father of the baby to visit]. I responded that I had read that fathers are allowed to come and see the baby. She replied that I should not allow him in without telling her first. I told her that I had read the regulation but did not know that I should get approval from her before bringing him inside.” (Mother, age unknown).
“They [healthcare providers] should explain to the mother where they were taking the baby and explain the life there. For instance, after I arrived, nobody explained the rules and regulations of the place except reading it for myself. None told me the procedure of things in the unit. They should improve that. There are people who made mistakes because they were not told before.” (Mother, age 25).
Theme 4. Financial aspects of the care in NCU and support received
Many mothers and fathers said 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.
“I was wondering how I would get money to pay the invoice that was 99 times more than my salary. People told me that I must sell the land to pay medical invoices. I was scared. I was wondering how I will survive when I go home because I had already sold my land in order to buy clothes [for the baby]. I was speechless and there were times when I did not have breast milk because of problems.” (mother, age 44).
“I was stressed because of the 30,000 RWF medical bill for spending a week and three days in the hospital. I was wondering where I would get the money if I had to spend one more week in the hospital. I was confused but I was also ready to sell my house to be able to pay the medical bill.” (Mother, age 34). She eventually sold her land to pay the bills.
Even sometimes when the NCU was not as expensive as expected, the thought of the potential cost caused a lot of stress.
“When we went to the hospital, we wondered how we could pay the bill. We ask ourselves so many questions. I was afraid that I would not get enough money to pay the medical bills and would be held in custody at the hospital. But, luckily, I was not charged a lot of money because I had health insurance. I did not have to sell any of my goods.” (mother, age 35).
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. They do whatever possible.” (mother, age 36).
“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).