Interviews were conducted with 10 mothers and 2 fathers, and lasted 27 to 65 minutes. Eight of the mothers delivered at the hospital and two at health centers.
Sixteen staff interviews were undertaken; 4 doctors, 7 nurses, 3 cleaners and 2 allied health professionals.
Themes identified from parental interviews were their general impression and their severe stress. From staff interviews, themes that emerged were inadequate nurse staffing, their role as a constant presence and educators. Discharge home was a major concern for both. Both groups were asked about their attitude to performing additional tasks.
Almost all of the mothers expressed favorable views, “My impression was good because I find that the staff here really takes care of the babies.” Nine of the ten participants stated the medical staff provided proper care for their babies. Even a mother who had lost her baby the night before, said: “Any child that dies, it is not because nothing was done, but because he was destined to die because they gave everything that needed to be given to my baby. I would tell a future mother to hurry up and bring her baby here because there is real rescuing here.” Mothers said they placed all hope in God, and trusted the medical team.
In relation to the mother’s perception of their role in the neonatal unit, feeding was seen as a major role. “My day is filled with breastfeeding from morning to night, that's what I do.” ‘There is breastfeeding every 3 hours, changing his clothes when he has peed or pooped and laundry to clean the baby's clothes to avoid infections.’ Some of the mothers were also feeding via a nasogastric tube.
Although visiting rights were fully granted to mothers, it seemed restrictions applied to others. One mother testified “for the baby’s mother, yes, she can stay as long as she wants. They don't refuse for the father; however, they don't accept that he stays too long. But when visitors come, then it's complicated. They don't want them to come or stay long.” On father reported “It is not allowed to stay long because we prevent the babies from breathing. We consume their air.”
Only 30% of the mothers had an introductory tour of the unit; one mother said “Yes, I would have wanted that but I ended up doing the tour all alone”. Only 30% were told how to produce breastmilk and maintain their baby’s hygiene; the remainder said they were given no instructions.
Mothers reported issues with the level of communication with health care workers. Seven of the mothers said they had not been informed what was wrong with their baby and none said that they knew what treatment their baby was receiving. Only half reported being told about their baby’s current health once or twice a day. Mothers felt it was challenging to ask for information, although many reported that it was easier to talk to the pediatrician when she did her rounds. This was also observed by the researchers.
Four of the mothers were providing intermittent KMC, but none had its purpose explained by a health professional. One hypothesized “the baby gains in warmth and weight”, another “maybe she could, then, breathe well” and another mother said “when the mother’s heart beats it helps the baby feel better”.
High levels of stress and anxiety were reported by all the mothers. A range of factors contributed to these feelings.
i) Fear of their baby dying. Mothers reported being extremely anxious about the possibility of their baby dying. “What worries me the most is to see some deaths around here. I know that maybe the next baby could be mine”. During this study, 4 babies died. Prior to this hospitalization, 3 mothers had personally experienced loss of a child.
Oxygen therapy was associated by some of the mother’s with death. A mother described her most distressing moment, “I could only be worried because from the moment the baby was placed on oxygen, I was afraid, I told myself that maybe things were not going well. […] That she could die.” Faith and belief in God helped mothers cope and maintain hope. One declared: “I can only praise God because my baby that is still alive has nothing special that the other one doesn't have”.
ii) Concern about their own health. Some of the mothers had concerns about their own health. “What worries me the most is my own health. I have had surgery, and the after-surgery is still painful”. This was an issue particularly if they were not well enough to go to the neonatal unit after the delivery. A mother who was hospitalized in maternity for 24 hours reported that this meant her baby had not been fed. They expressed concern that unless they were present in the neonatal unit their baby was not fed and they were not informed about their baby’s wellbeing.
iii) Isolation and loneliness. Long travel distance of 1 to 5 hours or expense limited visits by family members. Only 2 fathers visited, 7 others were reported to be unable to come as they were needed at home. “Because of poverty, my husband cannot find the ticket (transportation fare) to come visit me every day. My father is too old to move around. My mother is no longer.” Another mother said “I am not married. I had the baby with a man who disappeared. My first baby's father is in jail. I came here alone, my parents have died.”
iv) Meeting their own needs. Obtaining food was a major source of anxiety for most of the mothers, as no food is provided and shops are some distance away. “We have to fight to find food”. “Some mothers do not have families who can bring them food. It's really hard to cope around here.”
They also complained that whilst their baby was in the neonatal unit there was often insufficient place to rest and sleep at night, and insufficient bedding, so they just had to find somewhere in the hospital to sleep. There was also a lack of facilities to eat and store things, and no clothes lines to hang their baby’s clothes.
v) Financial worries. Fear of hospital bills was a big worry “as a poor person my worry is how I will pay the medical expenses for my baby. […] I know it is cheaper with the mutuelle (health insurance) paying most of the costs, but it also depends on how long you stay.”
vi) Mental health. When asked what helped them cope, the majority of mothers responded that it was the attention staff gave to their baby or assurance when seeing their baby improving. They also reported good collaboration with other mothers. They lent each other basins, shared food and water (for washing), and helped each other cope.
However, some concerning behaviors regarding mental health were observed on the unit. Several mothers displayed expressions of deep sadness, looking lost in deep thought, isolation and apathy. One mother was observed to handle her baby inappropriately. One of the fathers commented “there should be a team to comfort mothers because many of them arrive depressed and they don't know how to pick themselves up.”
Inadequate nurse staffing. This was perceived as the central issue by all the staff, and the reason for the nurses being unable to provide the care they would like. During the study period the bed to nurse ratio varied from 7:1 to 31:1. There was a focus on technical tasks and some staff acknowledged their neglect of parents’ needs. “Because of many patients, one nurse, so there are some practices that we don’t do because we are overwhelmed, so sometimes we don’t do”.
Role of nurses. A strong theme around the role of the nurse was that they are a constant presence, ever-watchful and vigilant at the side of the patient. This contrasted with the doctors who were perceived as transient, “doctors they are just seeing the baby, writing what to do and then they leave, so, because nurses are there from the first minute to the last minute, the first person who is important for babies… to be alive, or to becoming in good life is nurses”.
The importance of the mother’s presence for her baby was generally recognised by nurses. “Mothers are most of the time here. We need them… we are giving treatment…but they are bathing them, they do hygiene for them…In feeding also… they are helping”.
However, the necessity of the mothers participating in the care of the babies was not viewed as entirely beneficial, because of the need to protect the babies from outside infection. Visitors were viewed by some staff as a source of infection, and sometimes not allowed in the unit.
The role of staff as educators of ‘correct’ ways of caring was emphasised as a way of protecting babies throughout their hospital stay and after discharge. “Fighting hypothermia, feeding on time, giving the right dose of medication at the right time, that’s what we need. And, it’s the role of the nurse”. There was strong mistrust by staff of “traditional ways” of caring for babies, as learnt from family or community. “It’s the role of the nurse to educate the mother how to take care of the baby”.
Education was also seen as important so that staff avoided blame if the baby died. Frontline participants described their emotional toll when a baby died, but emphasised the importance of overcoming their feelings to be professional, “we try to talk to the mother before the death, so the mother knows we are trying our best. And after death would not blame anybody. Say well they tried their best, so we have not to blame them”.
Potential extension of parent’s role
The possible extension of mothers’ role in caring for their babies was explored with both parents and staff.
The majority of mothers doubted their ability to perform clinical tasks because they believed their social role/status did not provide them with the level of literacy and training required. When asked if she would take her baby’s temperature, one mother said “No. The nurse does that. If I am not taught how to do it, I don't see how I would be able to. For those who are illiterate, it could be difficult.”
Overall, mothers preferred not to be asked to perform activities that they perceived as the tasks of nurses, especially recording results involving writing, because they were already tired, preoccupied with other things, and not trained. One explained “we have many things on our mind, many problems, especially thinking about things at home or family problems, then sometimes it is difficult to do some activities that we are asked to. However, when we are free and relaxed, then, we can do it”.
Staff differed in their opinions as to whether parental participation was desirable or whether it was a way of dealing with staff shortages. Staff perceived that mothers understood the benefits of KMC and enjoyed practicing it, but its implementation was difficult because of competing demands on the mothers’ time. “It’s not easy because sometimes they don’t have any help, sometimes she has to leave the baby for cooking, seeking food, and laundry, so it’s not always possible to have twenty-four hours with them.
Concern about care after discharge
A contrast emerged between the staff’s way of looking after babies, compared to the care that babies would receive at home. Mothers trusted the staff to care for their babies, but staff were concerned that mothers could not provide the care their babies needed. “People from the community don’t know how to care for the babies, but, if you are educating more and more they can know how to keep their babies in good health” .“When a baby is discharged home mothers don’t care of them as well as in hospital… and once discharged they, start… to do other things, look for food, and so on, so the baby can be sick again and can come back to hospital because of lack of appropriate care. So, we should do more than we do now, and follow those babies at home and see how they are”.