Mothers’ experiences of participating in the care of their babies
As shown in the conceptual diagram (Fig. 1), mothers’ participation in the care of their newborn baby was driven by an underlying fear of losing theirchild. This fear also shaped their experiences and was demonstrated in their actions.
Mothers’ experiences are presented under three main thematic areas: Mothers’ perception of care in the NCU, the NCU space, and the family support system. In the following section, we provide a detailed description of the themes and sub-themes.
Mothers’ perception of care in the NCU
Confidence in medical care provided
Mothers were concerned about the quality of care their babies received, because they needed them to stay alive and were aware that it depended on the care they received. They were generally confident about the care their babies were receiving, mostly because of their observation that both their own and other people's babies improved after treatment. Mothers whose babies had improved frequently shared the success stories of their babies' recovery, which provided confidence to those whose babies were still critically ill and/or mothers of newly admitted babies.
I recall how we arrived here; he was so small that he couldn't even cry or move. Within a few hours of being cared for, he began moving his hands and crying. And now you can see that he is gaining weight, that he is getting bigger, that the medicine is working. (Mother of one, 20-year-old).
Even though most mothers were confident, mothers whose babies deteriorated or did not improve quickly expressed a loss of confidence in the care received. Most mothers had witnessed a baby's death in the NCU, which heightened their anxiety and lack of confidence. It is important to highlight that the babies who were deteriorating often required more interventions, and mothers frequently questioned the necessity of the numerous procedures and occasionally worried that these interventions might be harming their babies.
Yes, I am concerned. Although the baby has little blood, the HWs are constantly pricking and drawing blood, and the condition remains unchanged. The baby started convulsing the other day after receiving a lot of drugs. The baby has been given so many drugs that it is now weak; they must have given it a lot of medication. I am sceptical of the care provided in this hospital. (Mother of two, 25-year-old).
Mother’s appreciation of HWs responsiveness
The mothers' perception of how responsive HWs were in times of emergencies was another aspect connected to their fear of losing their babies. Whenever a mother believed that their baby was experiencing a life-threatening medical emergency, they would call a HW for assistance. Some of the incidents commonly reported by the mothers were convulsions and babies gasping for air. Most HWsreacted swiftly to the mother's call for help, which was highly valued. Mothers were very appreciative of the HWs who, despite being quite busy, would occasionally stop what they were doing to answer an urgent call.
When compared to other wards I have visited, the NCU's HWs are quick to respond. Perhaps this is why my baby is still alive. When I told them (the HWs) that my baby was having a problem, they rushed over to help. When I told them my baby was convulsing, they acted immediately. Even when I informed them that the oxygen was not flowing, they rushed to assist. (Mother of three, 27-year-old)
However, mothers also interacted with unresponsive HWs. When called upon, these HWs, would either not reply or would promise to come but never actually show up.
These HWs here! The other time my child convulsed, I ran and told them to come and help; they said they were coming but then went about their business. I was terrified that my baby would die, but God came to my rescue. (Mother of five, 32-year-old)
We also noticed that some mothers believed that some babiesreceivedspecial treatment from HWs in terms of responsiveness to their needs and time spent withthem.
In this unit, some babies get a lot of attention. Perhaps their mothers bribe the HWs? They (HWs) are constantly checking on the baby, and whenever the mother calls, the HWs rush to see the baby. Meanwhile, they take up to an hour to arrive for me. (Mother of six, 36-year-old)
Mothers' dedication and focus on "doing" things that aid their baby's survival
Mothers felt a duty to make sure that their babies survived, and they therefore actively participated in their care. The activities mothers participated in included those that are routine like breastfeeding, cleaning the baby, and carrying the baby to the nurse for medication. Checking oxygen flow, removing the baby from oxygen when the power goes out because the supply is also cut off, and nasal gastric tube (NG tube) feeding were some of the tasks performed that needed a certain level of skill (As shown in Table 2).
Table 1
A table showing sociodemographic of mothers who participated in the study
| | | N = 16 |
| Age range | 19 or less | 4 |
| | 20–24 | 4 |
| | 25–30 | 5 |
| | 30 or more | 3 |
| Marital status | Never lived with a spouse | 3 |
| | Living with spouse | 10 |
| | Separated | 3 |
| Level of education | No education | 4 |
| | Primary level | 4 |
| | Secondary level | 5 |
| | Above secondary level | 3 |
| Number of children | 1–2 | 4 |
| | 2–3 | 5 |
| | 3–5 | 5 |
| | 5> | 2 |
| Employment status | Profesional with formal employment | 4 |
| | Small business owner | 4 |
| | Unemployed | 8 |
Table 2
Activities mothers participated in while in the NCU
| Routine interventions | More complex interventions: |
| • Removing baby off oxygen when the power goes • Checking to see if oxygen is flowing in the prongs • Notifying HWs when a baby has a danger sign • Feeding in Nasal gastric tube o Expressing milk o Using syringes to feed through the NG tube | • Breastfeeding • Wiping baby-bathing • Reminding nurses to give their babies medication • Taking babies for medication • Watching over the baby |
| *Medical interventions: these are typically done by HWs and require a level of medical judgment to be performed satisfactorily * The non-medical interventions are those that mothers typically do are non-invasive HW = Health worker |
When you conceive and carry a pregnancy for nine months, it is your baby and your responsibility. I need to be involved in his care so that he can survive and live. That is my obligation as a mother and a woman; I cannot delegate it to anyone else, not even HWs. So, I do whatever needs to be done. (Mother of five, 32-year-old).
The fact that there were very few HWs in the NCU further catalyzed the mother’s need to take part in their baby’s care. The HWs also encouraged mothers to help by taking time to train them on how to performvarious tasks
The health workers are too few and the babies are just so many! They try to take time to empower us to look after our babies in a simple way. The nurses trained me how to express milk and the mills [amount] you are supposed to give the baby. I was also told that before expressing the milk, I need to wash my hands, then wash the cup with hot water, wash the syringe and they dry very well. (Mother of four, 40-year-old mother).
Mothers stated that their main concern was helping the baby stay alive and leave the NCU. They appeared to be trying to avoid developing emotional attachments to their babies. Since the babies were so young, they hoped that they would have time to form a close bond with them later.
Of course, I want my baby to recognize and bond with me as her mother. But that is not possible right now. It is not a priority; the baby needs to stay alive first. I am optimistic, because he is young, and when we get out of the hospital, we will bond, and she will recognize me as hismother. I had the opportunity to love, carry and breastfeed my previous babies, but not this one. She is on oxygen. She feeds through a tube (mother of three, 29-year-old mother).
Mother’s interaction with HWs: Need for empathy
Regarding their interection with HWs, the desire for empathy emerged as the overarching issue for mothers. We observed that in the NCUs, HWs focused on the babies and paid little attention to the mothers, including those who were visibly ill. Most mothers were aware that the NCU was there for the babies and never raised concerns about their own well-being. This was true even though most mothers looked sick and probably needed medical attention, while others had not rested since giving birth.
Although mothers prioritized their babies and did not object to the NCU HWs’ focus on the babies, they expressed a desire for empathy because they were in what they termed as a "fragile" state. They were healing from giving birth and dealing with the unexpected experience of having a sick baby. The lack of empathy was reflected in the negative response by HWs when mothers, who were asked to carry out some tasks related to the care of their babies, were slow in doing so because of their condition.
The HWs need to stop being angry at us. They should understand our situation. They should talk to us well because we are all human beings. Even if they instruct you to do something and you do not do it, they should understand. We are tired and sick as well! (Mother of two, 25-year-old)
On the contrary, there were various occasions when HWs showed empathy to the mothers by paying attention to them, offering them words of encouragement, and being patient with them when they, for instance, did not bring their children for medication.
I cried a lot. I had lost hope. The HWs comforted me and encouraged me to be strong. I was overwhelmed by thoughts. The HWs strengthened me. You cannot handle this period without someone to encourage you. Of course, for me, it was much better when the encouragement came from HWs as they know better (mother of six, 32-year-old)
There were several times when the mother reported that HWs were rather cruel in the way they treated them. We observed that HWs frequently shouted at mothers for not following NCU practices. Many mothers reported similar events. This happened to a great extent at night when HWs were few and wanted to go to sleep.
I was tired that day and went outside to rest on a mat; by the time I got up, it was after midnight, and the baby had missed his medication. I arrived just as the nurse had finished administering medication to the babies and had gone to sleep. I attempted to awaken her, but she refused. I was outside knocking, but she didn't seem to hear me. She later came out and inquired as to who was knocking. And I came over to explain myself. "Where were you?" she demanded angrily. I told her I had gone to bed because I was tired. She first argued, saying, "Will I always be there waiting for your babies?” (Mother of two, 25-year-old)
The NCU space: feeling unsafe
The NCUs are dormitory-like rooms with around 30 baby cots, three to four beds for Kangaroo Mother Care mothers, and a few chairs for mothers to sit on. Even though the nurses insisted that only mothers should stay in the NCU since they are breastfeeding the babies, additional family members were frequently present. Consequently, NCUs were often congested.
Mothers expressed worry that the environment was not safe. They were concerned that someone might steal their babies in this uncontrolled space. As a result, they were constantly nervous.
I could not sleep because I had to keep an eye on my baby. I have not slept in days as you can see, I am exhausted. I could not go out to wash my clothes or bathe. There are so many people here, you cannot know their intentions. The mothers tell many stories of babies being stolen; it is very frightening (mother of three, 28-year-old mother).
As mentioned in the theme of mothers' perceptions of care, mothers felt it was their obligation to protect their babies, so theyresponded to their fear of having their baby stolen by always ensuring that a family member stayed to watch their baby whenever they left the NCU for any reason.
Besides the fear of babies being stolen, examples were given of theft of property in the NCU.
There are no cameras. They steal everything. We are so many of us; you cannot differentiate who is a thief and who is not a thief. For example, they stole my money, and my phone. The man who stole it came and sat on a chair and I assumed he was someone’s husband. When I went out to the pharmacy, upon returning he was not there, and my phone was gone. Imagine some people send you money on the phone; I suffered with eating that whole week (mother of five, 40-year-old)
Support system: Dependency on family
Mothers described the process of caring for the baby in the NICU as financially and physically draining. The common expenses included paying for medicines and laboratory tests that were not available in the hospital, buying food and tea, and sometimes extra baby clothes. Typically, it was the role of the spouse to take care of expenses. The provision of finances seemed to be what mothers primarily expected from them. We observed that some men were involved in other activities like watching over the baby in the NCU or washing clothes, but this was rarely mentioned by the women themselves as the financial role seemed more relevant. It was common that the spouse would not have all the money to cover all costs, so he got support from his family.
My husband buys whatever is needed like diapers. Sometimes he fails to get all the money, his relatives support him. He is a teacher in a government school, and, understandably, he cannot raise all the money we need here. All his brothers and sisters have been very supportive (mother of one, 21-year-old)
We noted from interviews that families that could afford these costs were happy to incur them and it was a source of satisfaction for the mothers, because then they felt that they did what was necessary to save their babies. However, it was challenging for those who couldn't afford it, who often felt bad about it, and their babies frequently missed treatment.
I feel happy, we (her family) could afford to buy drugs and whatever is needed at NCU. I have made work easy for the HWs but also, I feel glad that I can provide everything needed for my baby to survive. I am lucky God has provided the money. I see other mothers struggling (mother of four, 30-year-old)
Mothers also mentioned that caring for babies was physically exhausting. They did not rest much, andwhen they needed to rest, there were no beds in the NCU. They often had to go outside the NCU, or they slept on the floor at night. To cope with the demands, mothers depended on their families. Typically, the mother-in-law, sisters, sisters-in-law, and mothers entered the NCU to help with day-to-day care. They stayed at the hospital and supported mothers by watching over the baby, washing clothes, and going out to buy food or any other requirements.
For mothers who had no support from family, HWs would mobilize resources to support them. The HWs encouraged mothers to share resources.
The other day I had spent all my money, I could not afford the medicine I needed to buy, and I had no food. The nurse asked one of the mothers who had an extra dose of medicine to give me, and she did. That nurse also asked all women to give me some food and tea that day. I was so thankful because my hands were tied that day. I was completely stressed out. (27-year-old mother)