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.

1.1. Stress due to baby’s condition.

Many parents reported feeling fearful when they were informed that their newborn required admission to the NCU. They feared that the child could die and that 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 felt 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 found myself crying.” (Mother, age 28).

“I cried. Other mothers used to say that no other person enters there [NCU]. I felt like it was over for me when I saw myself referred to there. I thought that I would not leave soon and I imagined that my baby would eventually die. I felt very sad, and it was hard for me to accept the situation” (Mother, age 25).

1.2. 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:

“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).

1.3. Stress due to that fear the baby is being hurt during care.

Additionally, parents feared that their newborn may be hurt by the care provided in the NCU. The fear was particularly higher when the parents thought the provider was not experienced enough (student for instance) to care for the sick baby.

“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).

2.1. 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 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).

The mothers rejoiced in being able to access their newborns at any time, but the inability to care for their newborns such as lacking breast milk was the source of stress. 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).

2.2. 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 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)

2.3. 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.

“She [healthcare provider] asked me why I had violated the rules [allowing the father of the baby to visit]. 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.” (Mother, age 25).

2.4. Physical environment of 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. In the NCU, the mothers had a responsibility to look after their babies, day and night ensuring their cleanliness, nutrition, changing diapers and clothes… These responsibilities made the mothers unable to rest adequately and it was an additional challenging experience for them.

“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).

3.1. 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.

“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 a disease [jaundice], my first time to hear of it. I had hoped that he would 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.” (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. 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.

“Whenever healthcare providers entered, I trembled because they entered speaking roughly, except that you ought to get used to it. Once, 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 before. 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. In most cases, the parents reported that healthcare providers blamed them for not taking good care of their babies or not fulfilling their responsibilities (such as providing needed materials for newborn care) hence leading to worsening of the condition.

“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).

Most of the parents, including those whose newborns died prior to discharge, trusted that providers were doing their best to save the newborns.

“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).

3.2 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 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 caregivers. 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.” (Mother, age 28).