In March 2024, 20 subjects were approached, and they agreed to participate in this research (10 mothers, 5 pediatricians and 5 nurses). The interviews were conducted in a quiet consulting room in the hospital. The sociodemographic and physical characteristics of the mothers and their preterm infants and the demographic characteristics of the healthcare professionals are given in Tables 1 and 2, respectively. The mean maternal age was 30 years (SD=7); most mothers delivered by Cesarean section, and all were currently married. A majority (53.8%) of the preterm infants were born between 28 and <32 weeks of gestation. The pediatricians and nurses interviewed had 15 years (SD=3) and 8 years (SD=4) of experience, respectively, and 40% of these nurses had basic pediatric nursing qualifications.
Table 1: Sociodemographic and physical characteristics of the mothers and their preterm infants
Mothers
|
n(%)
|
Age; mean (SD)
|
30yrs (7)
|
Marital status
Currently married; n (%)
Single parent; n (%)
|
10 (100)
0 (0)
|
Mode of delivery
Cesarean section; n (%)
Vaginal; n (%)
|
8 (80)
2 (20)
|
Maternal medical condition
Pregnancy induced hypertension; n (%)
Malaria; n (%)
Others; n (%)
Nil known; n (%)
|
5 (50)
1 (10)
0 (0)
4 (40)
|
Type of pregnancy
Singleton; n (%)
Multiple; n (%)
|
7 (70)
3 (70)
|
Birth experience
First time mother; n (%)
Previous preterm birth; n (%)
Previous term birth; n (%)
|
7 (70)
1 (10)
2 (20)
|
Religion
Christianity; n (%)
Islam; n (%)
|
10 (100)
0 (0)
|
Preterm baby
|
n = 13
|
Gender
Male; n (%)
Female; n (%)
|
5 (38.5)
8 (61.5)
|
Gestational age classification of prematurity
Extremely preterm (<28 weeks); n (%)
Very preterm (28 to <32 weeks); n (%)
Moderate to late preterm (32 to 37 weeks); n (%)
|
4 (30.8)
7 (53.8)
2 (15.4)
|
Duration of NICU stay; mean (SD)
|
30 (15)
|
Table 2: Demographic characteristics of the health care professionals
Pediatricians
|
n= 5
|
Years of experience; mean (SD)
|
15 (3)
|
Gender
Male; n (%)
Female; n (%)
|
2 (40)
3 (60)
|
Nurses
|
n= 5
|
Years of experience; mean (SD)
|
8 (4)
|
Gender
Male; n (%)
Female; n (%)
|
0 (0)
5 (100)
|
Post basic nursing qualification.
Pediatric nurse; n (%)
Registered nurse; n (%)
|
2 (40)
3 (60)
|
Five major themes (with associated subthemes) were identified from the exploration of mothers’ and healthcare professionals’ experiences and challenges in caring for preterm infants: 1) experience spectrum, 2) coping, 3) supporting mothers, 4) meaning drawn, and 5) suggestions for improvement. Figure 1 is displaying the thematic analysis map, and the themes are described below.
Theme 1: Experience as a spectrum
This theme centered around the spectrum of experience and challenges of the study participants, as it relates to the care of preterm newborns spanning from a stay in the NICU to transitioning to a private ward where mothers nurse their preterm infants under nurses’ supervision to discharge home and encounters in the immediate post discharge weeks of life. This theme has 6 subthemes, each with various minor themes.
Subtheme i: Emotional roller coaster
Eighteen participants, including all mothers with 4 nurses and Pediatricians each, described their feelings of unease with preterm infants nursed in the NICU, with restrictions on caregiver access.
Just after the joy of safe delivery, I was told that I was going to leave my preterm twins in the NICU. I did not understand it because it was new to me… what was in my head was how I would leave my babies in the hands of strangers. I know it is a hospital, fine, but in hospitals, I know that you stay with your child to nurse the child so that is how I felt. It was not an easy decision. [M. El]
Therefore, it has been a roller coaster. The down times where we lose a preemie after bonding with them, that is very heart-breaking. Sometimes I cry. Even when I get home, I will be thinking about the baby, feeling down, you know. However, it is also a very nice experience. I feel happy when I see a NICU baby going home, a premature baby going home after all this rollercoaster, up and down and everything. Therefore, it has been a wonderful experience. [N. Je]
A total of ten mothers and two pediatricians reported the regular occurrence of mothers crying when they had their usual first and only opportunity to sight their preterm infants who were nursed in the incubator at the NICU. Certain mothers were moved to tears inside the NICU because they felt that the baby was too “tiny”.
Imagine, apart from the day of birth, I did not see her until four days after I left the hospital since I delivered through the emergency CS. The next time I saw my baby in the NICU, I cried because considering her weight at birth and seeing her now, she had already lost more weight. [M. Ta]
Two Pediatricians felt that the mothers cried because they were going through a lot, which is sometimes associated with emotional outbursts.
You see them crying. They can easily burst into tears, and they can easily pick offenses in nurses, nurses, nurses, doctors, or whatever. [D. Ke]
Six mothers felt guilty, imagining that preterm birth may have been their fault: some wondered what they would have done differently to avoid this prematurity, while others felt bad bringing forth a helpless baby just to face “punishment in life”.
He was so tiny; I could see his ribs from his skin, and I felt like why did I have to punish this baby like this? I just felt so guilty, like I brought him to be stressed, and he looked so helpless. [M. Tr]
This was a traumatizing experience for all mothers with preterm newborns for several reasons. Because caregivers have restricted access to their babies in the NICU, phone calls were made by nurses to the mothers to give updates and make requests for things such as expressed breastmilk, diapers, etc. Such calls were traumatic and greeted with fear of the unknown (M. Cy.).
Subtheme ii: Period of uncertainties
Thirteen participants described the mothers’ feelings of uncertainty expressed through numerous unanswered questions mostly bothering on chances of survival of their preterm infant.
The day the baby came forth, I was like, God, why did this happen to me? Like, is my world different? Is my world different? I was like, will the baby survive? Because I have not heard before that you can give birth to a 27-week baby, and it will survive. [M. Ju]
Other first-time mothers expressed their uncertainties and had questions about the fate of subsequent deliveries.
As a preemie mother, you get to think, if this is your starting point. You begin to worry for the next one. Therefore, I think that is the disadvantage I have. I will not say disadvantage, everything's an advantage that he came first. Now I'm thinking, is there something that might reoccur with the other ones, you know? [M. Tr]
Uncertainties related to the ability to take care of preterm babies were reported by 11 participants, including mothers and nurses. The fact that these babies are tiny and fragile evokes worry about the ability of mothers and nurses, who are the immediate caregivers, to handle them without causing harm. They fear that the baby may fall from their hand, or they may even break the baby’s bones.
At first, I was like, how will I carry her? She's too small. Ah, my baby is small. I was scared if she would fall from my hand. Or sometimes I would ask my nurses, how are you holding her? I cannot even carry her. [M. Ta]
Subtheme iii: Reality is different.
Because the reality of having a premature baby differs from what these mothers imagined prior to delivery, these mothers saw these differences as a new normal.
Five mothers revealed the difference between their intentions of exclusive breastfeeding and the reality of not keeping up with the demands of expressing breastmilk for the needed 2-hourly interval infant feeding.
I had the intention that I would do exclusive breastfeeding and brag about it. However, it is easier said than done. Because with my preterm baby, at the point, I was not lactating properly because of the stress and everything. So I had to switch to formula. However, that did not stop me from breastfeeding. I was still breastfeeding too, but not as much as before, and this was not what I imagined. [M. Ta]
The wealthier mothers had to come to terms with having their babies in Nigeria against their concluded plans for delivery abroad.
What I was thinking of spending a lot of money on was to travel and have him abroad. However, when the baby came very suddenly, traveling was not even an option. Now that we're putting him at risk, if we had to travel, so looking at how much we have spent, you know, it is nothing compared to him. [M. Tr]
Subtheme iv: Stressful moments
Three pediatricians reported different levels of stress, some related to their interaction with their mothers and others related to the medical care given to premature babies.
Therefore, in my experience, taking care of these babies, some of these babies have a smooth ride through their stay. Some also have very turbulent times. In addition, so of course, when it is turbulent like that, even for you, the healthcare worker, though you're not the mother. [D. Ch]
Some, for the late preterm ones, it could be a very happy one, a very pleasant experience. However, for extreme preterm infants, it could be very stressful for both healthcare workers and mothers while in the NICU and even thereafter. You can agree with me that the experiences differ from baby to baby, from mother to baby. [D. Nw]
Ten participants revealed that stressed mothers pass through to produce enough breast milk to feed their preterm babies. Additionally, coping with the two hourly feeding schedules with a cup and spoon was stressful for all the mothers.
One of my major challenges was the fact that I was not having, I was not truly letting milk like I did in my first pregnancy. I do not know if it is because of CS or because the baby is not being able to, I cannot put the baby to breast. [M. An]
While feeding my baby through using a cup and spoon, sometimes she has not even finished, and then there is another two hours turn for feeding. You will be feeding her two hours! [Exclaims] The nurses will say, it is time to feed baby. Another two hours, like, the world was like, sometimes I will cry myself. I will be like, hey, this job is not easy. I will ask myself questions. Why is all this happening to me? I will be crying. [M. Ju]
All the mothers complained that their sleep was adversely affected while caring for their preterm infant.
I had a challenge with waking up every two hours to feed my baby because I'm not that kind of person. I love my sleep. Therefore, she needs to eat to gain weight while trying to wake up every two hours. Honestly, waking up every two hours is stressful. [M. Cy]
Subtheme v: Personal health issues
Five mothers and a pediatrician reported that poor maternal health compounded the already challenging experience of caring for their fragile babies. Because most of them were delivered by Cesarean section, the occurrence of poor wound healing made the already stressful environment more stressful.
I had CS, so I was healing. I did not heal well, so I still got readmitted. [M. Tr]
Other ailments, such as the preexisting medical conditions that led to preterm delivery, were heath conditions that some of the mothers were battling with.
Apart from the emotional and physical stress associated with caring for their preterm birth, some mothers had preexisting medical conditions that led to preterm delivery. Since some were still hospitalized, having to come often to see their babies took a toll on their own health. [D. Ch]
Subtheme vi: Leaving the NICU
As part of the hospital protocol, when preterm babies stabilize to a certain weight, they leave the NICU to stay with mothers who are personally involved in the care process and are supervised ahead of their final home. Whereas the news of leaving the NICU is considered good news by all mothers, others were initially agitated about this but gained proficiency over time.
When we tell them we are bringing your baby out from the NICU to the ward, you hear the excitement in their voice. [N. Je]
Even at the time I left the NICU to the house yeah if I had the resources, I would have opted to pay for a home service nurse to follow me to the house to help me watch me for like a week or two to just see what I am doing. [M. Os]
Theme 2: How we copped
Different coping strategies were used by different mothers, some alone and others in combination. This theme has three subthemes: sources of strength, extended family support, and support from doctors and nurses.
Subtheme i: Sources of strength
Interestingly, all the mothers drew strength to cope through this stressful experience of caring for a preterm infant, albeit from different sources. Believing and claiming bible promises was a source of inspiration for most of them since all mothers in this study were of the Christian faith.
Therefore, I was comforting myself with the word of God [M. Ta].
I literally hear in my head in my spirit that she will be fine. That was great comfort for me. Therefore, I can say that God, one, I did a lot of praying and thank God for God's mercy. I prayed and got some relief, you know, before I could say that, okay, I felt better. [M. An]
Subtheme ii: Extended family support
Extended family support was reported by eight mothers. The support of spouses, grandparents and in-laws was a recurrent source of support through the challenging experience of preterm care.
I had a very strong support system. My husband was there. My mother-in-law was there. We made a good team. [M. Ta]
Subtheme iii: Support from doctors and nurses
A report from six of the mothers revealed that doctors and nurses caring for their premature infants were also very supportive of them.
…the helping hands, I got through nurses when I was in the ward. The teaching they gave me, it helped me a lot. In addition, I followed what they said. [M. Ju]
Theme 3: How we supported the mothers.
Nine healthcare professionals expressed how they supported these mothers through the stressful experience of nurturing a premature baby.
So personally, when I see the mothers are a bit scared, I tend to carry the babies and place them on the mother's chest. I do not mind sitting down with the mother and watch her feed for approximately 30 minutes. Just to enable her to know that these things are what she needs to do. [N. Cy]
Normally, we introduce Kangaroo Mother Care. Nature has its own, because the bonding, flesh to flesh, baby is lying on the mother's chest, there is this attachment. That, I believe, has contributed most to the bonding of the child. [N. Ke]
Theme 4: Meaning drawn.
Mothers’ lives influence their interpretation of the entire experience of having and caring for a premature baby. They saw and understood the realities of life in a new dimension and learned some virtues.
Subtheme i: Realities of life
Ten mothers drew lessons from the new realties and experiences in caring for their babies. Again, because all mothers studied are Christians, the reference to God’s preference for one’s proposal was a recurring theme.
What you propose for yourself may not be what God wants. He has given you what He wants, and it will be better. Therefore, you must be strong. [M. Ju]
Sometimes, how you think life should go is not with how it seems. You can plan your way, but God's plan for you is always different. Therefore, life happens, and you face it head on. Like they say, when life gives you lemons, make lemonade out of it. Therefore, you think it has happened, it has happened. Therefore, you do not have to face life squarely. [M. Ta]
Subtheme ii: Virtues learnt.
Nine mothers discussed virtues they had taken from the experience of caring for their preterm newborns. Seven of the mothers explained that the virtues of patience and optimism were nonnegotiable in caring for special gifts such as preterm babies.
Being with a preterm baby is all about patience. You need patience with them… you need more patience and diligence to be able to handle them because they are special. They are very special from God, and you need patience to handle them. [M. Ta]
Now I know I can go through anything with a positive mind and scale through it. In my wildest dream, I never imagined I will give birth and spend weeks in the hospital and go through all the processes of the NICU, having to go home and come back. My first child was… she was 4.2 kg, she was big, we went home, and the next day, we started feeding, unlike this patient. [M. El]
Theme 5: Suggestions for improvement
Since all participants had their own share of challenges with caring for preterm infants, they had suggestions that would improve their care experience for the mother-infant dyad.
Subtheme i: Improved communication and focused enlightenment
Eighteen participants stressed the need for improvement in the existing practice of communication between the healthcare team and the mothers of preterm infants, as this may be appropriate.
…what I'm still saying is that communication, letting them know what they are expected to do. …if you are communicating with them and allowing them also to express their mind, their feelings, their unsaid fears, and concerns, and being able to put them through based on the information. [N. Ke]
Subtheme ii: Need for mental health support.
The need for mental health support was echoed by 12 study participants due to the prolonged use of an emotional roller coaster, the reality of depression among them and the fact that the experience itself is traumatic.
Therefore, I think mental support is very, very needed because sometimes mothers are depressed. Yes. You're depressed and you're thinking about yourself. Your CS scar is not healing, and you are thinking about your baby's pain at that point in time. Therefore, I think mental support from healthcare professionals is very, very important for mothers. Yes. [M. Ta]
Then, I was away from people for a long time. I for me, it was more like, I'm just trying to be sane. Like I went through something traumatic. In addition, it is not everyone you can tell that this is what happened. Therefore, the wisdom to even manage that is stressful. [M. Tr]
Subtheme iii: Enabling ecosystem.
Two of these mothers wish that employers of labor understand that the duration of maternity leave for preterm births should be longer than what is available for term deliveries.
I think that Nigeria needs to have like a rule that protects mothers who have premature babies, maybe an extended period from work because our cases are different. Therefore, the few months that you would normally give mothers of term babies will never be enough for a mom who has a premature baby because our time is different; the way we count it, the actual dates are completely different. [M. Tr]
Interestingly, there is a need for a community of mothers who have successfully cared for a preterm baby, as this will encourage the sharing of experiences and serve to encourage new preemie mothers.
Another thing that I think can be helpful is to have a vocal preemie mom community in Nigeria. Therefore, many people end up feeling alone through the process because everybody is hiding what they went through. It would have been nice if there was a community of mothers who had gone through it. Therefore, nothing would seem, you would be more relaxed because you would see evidence that you can go through it and come out fine. [M. Tr]
Subtheme iv: Empathy from the healthcare team
Six mothers cited the need for a supportive and encouraging attitude of nurses to help them sail through the challenging experience of caring for a preterm newborn.
Because the nurses, like I'd stop them when you need something and sometimes I wish they would view it from this angle of “I'm new to this”, “I do not know anything”, I'm not just trying to make you repeat yourself, I just would rather be safe and have my baby alive even if it means I have to ask you a million and one questions”. [M. Tr]
I feel it boils down to the attitude of the health care worker in terms of friendliness and empathy. [N. Ke]