Subtheme 1: Stress from survival fears.

Several parents experienced worries and fears related to the survival chances of their infants. Parents feared and worried about whether their infants would survive. The poor state of the infant’s condition especially their small stature added to the stress. The uncertainty of the infant’s outcomes created anxiety and helplessness throughout the time of admission.

“It made me sad because my baby was premature and I was so worried because I thought my baby was going to die. I was worried because I gave birth at home…. I came here not expecting the baby to be alive because he got a lot of coldness ” (Mother, 31 years; caring for a preterm infant with low birth weight).

In some cases, the feelings of anxiety set in at the possibility of a preterm delivery, through the laboring process till admission of the infants to the neonatal unit.

“So, it was not even [time], and I don’t even expect her to deliver at that time.…they told me that……we are now waiting for the time to deliver. So, I was stressed because…I had not even prepared to receive a baby. So, I got stressed that day.” (Father, 35 years; caring for a preterm infant with jaundice).

Postpartum mothers who had a Caesarean section delivery and were admitted to a separate postnatal ward could not fully be with their infants in the neonatal ward. These mothers had limited interaction with their infants and experienced feelings of isolation. The early parental separation from their infants resulted in heightened feelings of uncertainty and worries related to the survival chances of their infants.

‘I went back to postnatal ward silently and weak but then I felt like I wanted to see my baby. I came back to look at my baby who was very small, [had] breathing difficultly and I thought this one wouldn’t come out into an adult. I was scared that when they gave me food, I had no appetite because I had a worry that any time, they are going to call me that the baby has passed on”. (Mother, 33 years caring for an infant with very low birth weight).

One mother, who had a Caesarean section, spent five days before joining to be with her infant:

“The situation hasn’t been good but you leave it all to God. I know it gets easier. The situation we went through, from day one. As I told you, I spent 5 days before I joined him.” (Mother, 32 years; caring for a preterm infant with low birth weight).

Parents had more worries following setbacks in the healing process and deterioration in the infant’s condition. Some parents contemplated and imagined the worst-case scenarios during this period.

“They started having hope of sending me home. Unfortunately, the child got infection. Almost he was going [to die]... Now the child stopped breathing. … the morale! I lost it completely…I had lost the morale, imagining of so many things…” (Mother, 33 years; caring for an infant with very low birth weight).

Subtheme 2: Stress from admission in the neonatal unit environment.

Admission to the neonatal unit was a source of stress for most parents. The emotional stress originated from the distressing unfamiliar neonatal standards and the infection and prevention practices. The infection prevention requirements like hand washing, wearing of masks, and prohibition of using casual clothes within the unit were identified to cause additional stress for parents in the neonatal unit. Restrictions in the number of visitors and the persons allowed in the neonatal unit made it more difficult for parents to share caregiving roles. This meant that a limited number of caregivers would be allowed in the unit at a time. Restricting the number of caregivers in the unit was especially challenging for mothers who were already frail and were trying to recover from the childbirth experience.

“…they don’t want visitors inside here because they are sure those visitors can bring diseases to babies. Now, when you have such a baby, you are supposed to be strictly two people. …[but] they don’t need more than one caregiver. So, things were hard for me in that way.” (Mother, 33 years; caring for an infant with very low birth weight).

Parents who struggled to adhere to these infection and prevention practices such as wearing masks experienced negative interaction from the hospital staff.

“Some of our healthcare staff, they are very harsh to us. They can chase you! Why don’t you have a mask? You go away….There is a lot of stress when you are inside here…”. (Mother, 24 years, caring for a preterm infant with low birth weight).

The neonatal environment itself was new, unfamiliar, and unsettling for the parents. The sight of infants on oxygen, and the sight of other infants passing was distressing for the parents.

“Too much worry. Because the environment was new to me. I’d never seen such before. I’d never seen children on oxygen. I see babies die all the time, all the time, all the time. And sometimes I get worried that, ah, will this one of mine survive?” (Mother, 33 years; caring for an infant with very low birth weight).

Parents recognised the need to monitor and be with their infants throughout neonatal admission. This made it difficult for the parents to leave their infants alone to go for food, while the restrictions to bring food into the unit made some parents go for long hours without food. Parents narrated about the overcrowding in the unit, the heat from the machines, and the sleeping difficulties amidst balancing their emotions with caregiving responsibilities. Parents narrated standing throughout the day and night. This was related to the limited resources such as insufficient beds for infants, restrooms, and facilities for sitting and sleeping. Altogether these experiences made it difficult for parents to care for their infants in the neonatal unit, while some parents had physical and mental health problems including swelling of legs and mental exhaustion.

…. It wasn’t easy because inside here… it’s really hot. Secondly, you don’t get a place to sleep, and thirdly food they don’t allow anything to be brought in. Now, all of that is not easy.” (Mother, 32 years; caring for a preterm infant with low birth weight).

One parent narrated the overcrowding in the unit and how it could cause cross-infection:

“I see the beds we are crowded together, one small bed and we put about four babies. This child’s disease can infect another eeeh the beds are not enough.” (Mother, 31 years; caring for preterm infant with low birth weight).

Subtheme 3: Stress from disrupted domestic duties.

Concerns for other children left at home, the family, and other responsibilities at home were also a source of emotional distress to most of the parents. It contributed to the persistent anxiety and emotional strain throughout the hospital stay.

“The other children, I think they miss seeing dad and mom. I’m sure they miss us because they stay with the grandmother. Now I don’t even know what they are, what they ate because I’m so far. It makes me feel bad; I want to see them. I live in worry, that what if my children are sick, whether they have eaten what there at home”. (Mother, 26 years; caring for a preterm infant with low birth weight).

Parents described that neonatal admission disrupted them from executing their job activities and domestic duties. This resulted from prioritising the child’s health amidst the challenges of balancing work and parenting responsibilities. Domestic duties were mostly disrupted during this time of admission.

“After all, jobs, etc. are ruined but I don’t mind because my son is fine and alive.” (Mother, 31 years; caring for a premature infant with low birth weight).

Neonatal admission disrupted social roles and responsibilities. Mothers were tasked with the caregiving roles, while fathers provided financial and emotional support.

“I have been here for a long time. I left home when I had grown my food there and now, I don’t know what it is like right now. If you are not there you cannot take care of them, you put the work aside and don’t care much about it. The money, the baby’s father goes and works and supports us, mother and child.” (Mother, 19 years; caring for an infant with birth asphyxia).

Subtheme 4: Stress from unexpected expenses.

Parents acknowledged receiving free medical services including consultation, support, and treatment for their infants in the neonatal unit. Medicines and other therapies were availed and administered at a free cost to everyone during the hospital stay. However, some parents described instances of unexpected expenses on specific drugs and supplements which were not available within the unit and they had to be bought from private pharmacies.

“They may tell you that there is no medicine and they have to prescribe for you to buy it and you don’t have money.” (Mother, 34 years; caring for twin infants with very low birth weight).

A parent narrated how costs related to acquiring food outweighed all the other expenses during admission. Besides, medicines and food, there were other expenses on small items like diapers, and infant clothing among others which contributed to the financial strain throughout the hospital stay.

“I’ve lost a lot. I’ve used a lot of money just buying some other small, small things. Like when you feel like to take some water, you go and buy water. So, in the village there, we don’t buy water. So, I realized from here that you have to buy even water.” (Father, 35 years; caring for a preterm infant with jaundice).

Some parents experienced financial hardships in covering for the many financial demands during the hospital stay. Some parents acquired financial assistance from the infants’ fathers, friends, and relatives while the little savings could not sustain them during the admission. Most parents resorted to selling mainly agricultural products to raise money to cater for neonatal admission.

“Even acquiring money is not easy. We farm and get something to eat or I sell my beans or vegetables and get some money to support myself.” (Mother, 31 years; caring for a premature infant with low birth weight).

Subtheme 1: Improvement in the infant’s condition.

Most parents experienced initial worries and doubts upon admission. However, emotions evolved from fear to hope as the infants’ conditions improved:

“At first, I was worried because I did not have hope that the baby would be treated and become fine. But with time as the child was improving, I became comforted”. (Mother, 32 years; caring for a preterm infant with low birth weight).

Parents expressed feelings of relief and gratitude during the whole recovery process of the infant, especially with signs of overall improvement such as weight gain, effective breastfeeding, and the reduced need for oxygen. These positive emotions were tied to the positive changes and improved health and well-being of the infant from a critically ill state up to discharge from the neonatal unit. Parents were also grateful for the support they received in the neonatal unit.

“I felt good because he has found peace, he has received good treatment and he has found life, he has no problems now. It made me feel good because they saved my child’s life. I have never had any problems in the time I have been there. They treated my son well, everything is okay”. (Mother, 23 years; caring for a preterm infant with low birth weight).

Parents felt good when their infant’s condition improved because most of them did not expect their infant’s condition to improve:

“But when I got here the health workers welcomed me and treated my baby and now, I feel so happy because they have sent us home. We are both going home alive which I did not expect.” (Mother, 31 years; caring for a premature infant with low birth weight).

The belief in God acted as a source of solace during the hospital stay. The recognition of the day-to-day positive changes in the infants’ condition kept the parents hopeful during admission.

“You have to endure as a person because I know what brought me here. As long as the baby has come out safely. I thank God because being here is not forever, you come and they treat the baby, they discharge you away and you go back.” (Mother, 32 years; caring for a preterm infant with a heart defect).

Some parents experienced positive feelings on admission to the neonatal unit because they perceived it as crucial for the survival of their infants. The positive emotions emanated from confidence in the services provided, and assurance that their infant would survive.

“I felt okay. Yeah, because I knew my baby is going to survive, I knew he is going to get all the services from here”. (Mother, 24 years; caring for a preterm infant with low birth weight).

Parents acknowledged that admission to the neonatal unit was a good thing for their infants. Because the neonatal unit was different from a home setting, it helped some of the parents to minimize the challenges they experienced while in the neonatal unit.

“As a person, it hurts, but you are brave because you want the child’s life. That’s what makes you more patient…It makes me feel better when you’re here; it’s better than when you’re at home.” (Mother, 31 years; caring for a preterm infant with low birth weight).

Subtheme 2: Positive interactions with healthcare providers.

Parents reported positive interactions with the staff during the hospital stay. The positive experiences with the healthcare professionals were perceived in terms of proper care and treatment for their infant in the neonatal unit.

“Our doctors and nurses are nice. They take care of us even if the room is hot. They live with us. They never leave us. They take good care of our children. Even if the child’s condition changes, they are almost available treating us well, so I haven’t seen a doctor treat us badly.” (Mother, 31 years; caring for a preterm infant with low birth weight).

Healthcare providers were a source of encouragement and support throughout the admission time with positive sentiments towards the nursing staff.

“Whenever the condition changes, the nurses, the doctors, they check the baby all the time. They give treatment without any payment. They have been very good people. They encourage you, and they tell you the child will be fine. They love my baby all the time.” (Mother, 32 years; caring for a premature infant with low birth weight).

Another parent described the interactions as good in that the healthcare professionals did not threaten, were unbiased, and did not segregate against them. The healthcare providers were noted to treat everyone equitably with collaborative efforts in the care of infants. The health workers were determined to provide good care, support, and guidance toward the well-being of infants as a common goal:

“Because they are not even threatening us, they just do their part. They don’t segregate. That was my happiness. Now, there is that tube, eh, used for feeding. So, the baby used to, to remove it. So, when you go there, the nurse might tell you that, ah, no, let us put another one. Don’t mind! Don’t mind! So, they used to help me.” (Father, 35 years; caring for a premature infant with jaundice).

In contrary, a mother narrated a form of interaction described as bad where the healthcare workers treated them harshly in the form of insults without assisting them on time. Mistreatment was experienced when parents asked for help in case the infant had a problem.

“Of course, they are very harsh to the mothers. Sometimes you find the baby has pulled out the nasogastric tube or the canula. But when you try to tell them, at times they can be harsh…” (Mother, 24 years; caring for a preterm infant with low birth weight).

One parent noted that the mistreatment occurred often at later times of the day when the staff got exhausted.

“And during evening time, the time they come, they are already tired. And when they are tired, they are tough. When they are tough, mostly they give attention to these babies who are just coming in.” (Mother, 33 years; caring for an infant with very low birth weight).

Subtheme 3: Adjusting and adapting to the neonatal unit.

Parents adjusted and adapted to the neonatal unit by participating in the caregiving roles. The caregiver roles included active involvement in basic care responsibilities of the infant which ranged from feeding (breastfeeding and or feeding using expressed milk), maintaining good hygiene, and routine tasks of changing diapers and clothing of infants. One parent mentioned that caregiving roles included kangaroo mother care and ensuring that the infant received the prescribed medication in the right time.

“Also, I do wash his clothes and so on. Keep watch and care after him during the day and night, give him milk in time after 2 hours, and chest contact. I have to make sure I take the file and the baby receives medicine.” (Mother, 32 years; caring for a preterm infant with a heart defect).

The parents admitted to having gained new and more knowledge related to caring for their infants as the healthcare professionals advised and guided them. This was mainly for the small infants that had special caring requirements.

“Now I have learned how they care for a small baby, how do you hold it, so the way you treat it is not like these nine-month-olds.” (Mother, 19 years; caring for an infant with birth asphyxia).

Parents described that decision-making concerning the infant’s care was limited to monitoring the infant’s condition and calling for help immediately from the healthcare staff in case of any problem. The parents entrusted healthcare personnel with the authority to make decisions and plans concerning treatment given their lack of expertise in healthcare matters.

“The part I take is me just to monitor the baby, How the baby is doing, in case the baby is not in a good situation, I call them and they find out what should be the problem.” (Mother, 32 years; caring for a preterm infant with low birth weight).

Prioritizing the health needs of infants ahead of their own helped parents to withstand the challenges in the neonatal unit. Challenges of lack of sleep, rest, and swollen legs were not of concern to most parents as long as the infant’s condition improved.

“Because of standing and sitting, you don’t even rest. You don’t sleep….. The legs started swelling me also. So, at the same time, I was…a patient…I just continue with the situation because I want to see that my baby will be okay. So, I was minding of my baby only. I don’t mind on my side” (Father, 35 years; caring for a premature infant with jaundice).

Another parent exemplified how they prioritized the health needs of their infant despite the challenges in the neonatal unit:

“Life is not easy but because you want the life of a child. Heat in the room, sitting in one position from morning till morning,…. I don’t see anything wrong because my child’s life is far better.” (Mother, 31 years; caring for a preterm infant with low birth weight).

Parents described that they had to adjust to challenges as part of the experience with patience and determination due to their desire for the infants’ lives. Adaptation to infant care involved techniques such as milk expression and chest-to-chest holding of the infants. Additionally, acceptance of admission in the neonatal unit as being a better environment for an infant compared to home gave them reasons to be patient and more resilient.

“…So, I came to learn that when you are in this place, you make sure by 6 am you run out very fast. You bathe, you take tea. By 7:30 am, you enter before our boss comes. So, when I got that experience a bit, I changed at least life.” (Mother, 33 years; caring for an infant with very low birth weight).

Adjusting to the neonatal environment also included knowing the schedules, policies, and practices in the unit. Parents devised mechanisms to abide by the infection and prevention practices in the neonatal unit through measures such as waking up early to clean up and prepare before the ward rounds start.

“In fact, the issue of locking us outside, you wake up at around 5:00am then you go out…So you time that early morning when the door is still open, you go out, you take a shower and come back. Then you remain now inside.” (Mother, 24 years; caring for a preterm infant with low birth weight).