a. Female role inside the home to bear and raise children within the familial structure.

In most cases, the mother was the primary caregiver to nurse the newborn; therefore, she noted deviations from her neonate’s normal state, including breathing difficulties, skin color change, vomiting, fever, fits, body swelling, feeding challenges, or over-crying.

“She was all fine and we went back home after the delivery. It’s been three days since the baby had not been feeling well (from Day 14). She could not drink milk. She had shortness of breath. There was an unusual voice coming out from her nose. She also had a thick stool. Some people said she had pneumonia, so we went to the hospital. She has a chest infection and abdominal issues. Also, she got a severe temperature. My husband said we go to ATH. It’s a good hospital.” (Mother, Battagram, 7)

Along with the local purdah (women seclusion) custom, females typically stayed at home, responsible for house chores and childbearing, without much focus on education.

“[Are you working or housewife?] Housewife. We are Pashtuns, we don’t go outside home”. (Mother, Battagram, 7)

“I went to school for 15 days only. My brothers were strict saying we are Syeds (descendants of the Islamic prophet Muhammad, expected to be Muslim role model families), didn’t allow me after that. But I really wanted to study and (remembered) little bit of words I learned. Now I have kids and send them to read (She was married at 14).” (Mother, Mansehra, 6)

Daughters-in-law were expected to have male children, reflecting the local belief that boys are the heirs of the family and land, and become breadwinners to help with their kin-group finance, whilst girls will leave the family on marriage, with parents’ carrying the burden of dowry payment (bride payment) on their daughters’ marriage.

“My brother-in-law died so my in-laws wanted to have a grandson as soon as possible. He died after 10 days of my daughter’s delivery and death. So, they said do not take any gap and conceive within that month.” (Mother, Mansehra,14)

Infertility could threaten the position of the daughter-in-law in a familial structure; a staff member shared a story of a desperate woman who stole a baby from the hospital.

“A woman came to kidnap a baby. We still have CCTV cameras in the nursery. She came with a handbag and shawl in it, to wrap the baby. There was no strictness in the nursery at that time. She wrapped the baby and was about to leave. She was captured at the last moment. Later on, she started saying, it’s been so many years of my marriage and I don’t have kids. My husband will divorce me and he will do this and that....” (Staff, 25)

b. Male decision making outside the home without involvement in women’s business.

Male figures in families were not directly involved in newborn care at home; however, they were responsible for decisions to seek medical attention outside. Women are required to be accompanied by male family members when it is necessary to go out.

“The baby was delivered at night. I was discharged next morning. They kept the baby in a glass (incubator) for three days. Then we spent nine days at home. And last night we came to ATH. The baby turned yellow as she had jaundice. We placed the baby in the sunlight and the skin turned extremely yellow. My husband decided to go to the hospital. He came back from Lahore the next day he was born. We took local transport. My husband and his brother accompanied, and we stay outside in the hospital.” (Mother, Battagram, 11)

Male members were also expected to provide money for transport and hospital expenses for patients and attendants to stay; however, it is not easy to save funds for the future when feeding a large family.

“ [Who delivered the baby?] No, no, at home. There was my wife and some other woman at home…[How and why this decision was made?] I did not decide that. It was nighttime, the pain started at 9 pm as I told you, so there were no arrangements for cars. So, we thought if something happened, we would go in the morning. The time we prayed for Fajar (first of the daily five Muslim ritual prayer, performed from dawn to sunrise) and prepared to go (to the hospital), we were informed that the baby had been delivered. Or else, we were about to come to the hospital…[Have you planned earlier for the delivery like the transport cost and other costs?] No, how can we save money, 14 people eat (dependents), and all this money (for newborn’s admission) was borrowed from people. We did not know that we would face this hurdle”. (Grandfather, Battagram, 18)

Pregnancy and childbirth were regarded as women’s business, and males were not usually involved in discussions until the last moment. Communication was delicate, based on each family structure.

“[Who do you consult during pregnancy?] I didn’t tell anybody, not even my husband. When I need to go to hospital, then I tell my mother-in-law.” (Mother, Battagram, 13)

a. Lack of early initiation and exclusive breastfeeding.

There was a rampant myth that breastmilk only comes out a few days after childbirth, with reluctance for early initiation. Mothers typically started breastfeeding two to four days after delivery. Interim feeding varied from formula milk, cow/goat milk, kahwa (tea), and infant drops. Mothers’ attitudes toward exclusive breastfeeding varied.

“I give formula milk because my own is very little. One day I gave him kahwa (tea). It is good for chest issues, cough issues. The other day I gave cow’s milk mixed with water. One portion of milk, two portions of water.” (Mother, Kohistan, 4)

“On the first day mother goes through so much labor pain. On the second day I felt right then breastfed the baby. (On the first day) I gave goat’s milk, because if I had given her formula milk then she would be on it completely.” (Mother, Mansehra, 9)

Distrust of her own breastmilk was narrated by one mother; this was further provoked by surrounding female family members.

“Three of my daughters who died used to cry so much. People said it is because my milk is not good for their health. How I came to know this is by putting ants in my breastmilk. I put some ants in my breastmilk and the ants immediately died. My girls used to cry every day and they did not have any other disease, so I assumed that my milk was dangerous for their health. People also said that your milk has germs in it and the way it is not good for ants, similarly it is not good for your babies, either.” (Mother, Mansehra, 6).

One staff member explained the vicious cycle wherein newborns started with bottle feeding, with soft bottle teats easier to suck than breast. It is therefore challenging for them to shift to direct breastfeeding, and they ultimately miss the colostrum.

“Those (mothers) who feed without feeder (milk bottle) they give colostrum, those who use feeder they don’t (give colostrum). Human is lazy by nature. Babies don’t need to suck it from the feeder, so when they go on breastfeeding, the duration of three days would have passed already. Mothers are more concerned about their pain (than early breastfeeding initiation). I think they don’t even know the importance of their milk.” (Staff, 23)

Discarding colostrum, and giving prelacteals to newborns, was also common. Mothers were typically advised by in-laws, but one mother changed behavior by learning from other mothers in the hospital.

“For my boy (firstborn), on the second day I gave breastmilk. First day I didn’t have milk in my breast. First milk was greenish color, and I didn’t give that. I wasted away. Then I gave normal milk. The first time, my family members, sister-in-law, said to put out this milk and don’t give it to the baby. But this time, I gave it after 10 minutes. There were other women, who put their milk in the jug. So, I thought I should also put my milk in the jug. I am breastfeeding, I can’t buy formula milk.” (Mother, Battagram, 7)

One grandfather mentioned that his daughter-in-law focused on breastfeeding according to the doctor’s advice, but he was not sure about colostrum.

“She was in pain, so when she became conscious her elders told her to breastfeed the baby. Some said, give him kahwa (tea), and goat’s milk but we said no. Once a doctor told us that mothers’ milk is good… [The first milk that came to her breast after the delivery, was greenish in color?] I don’t know about it... I was told by a doctor that you people give cow’s milk to the babies for three days, don’t do it. Give mother’s milk immediately.” (Grandfather, Battagram, 18)

Ghutti/tahnik (first sweet feed) is the Islamic ritual of rubbing the palate of a newborn baby with dates or honey, from the elderly, before breastmilk, so that the good attributes will be transferred to the baby. In Pakistan, there are two types of ghutti in relation to prelacteals; the other will be described later.

“On the first day when we went home, we tried to give him anything. My mother-in-law gave him ajwa date (dates from holy Medina town, Saudi Arabia), and tea with a spoon but I think he didn’t take it. I don’t know about it, but they tried.” (Mother, Mansehra, 14)

Kahwa (tea) is ordinarily administered for prevention and treatment of the common cold in the region for all generations. Alarming situations for infants were noticed, as milk bottles filled with kahwa (tea) were seen by some staff. The ingredients are often green tea and sugar, with or without some herbs/spices, boiled together. Some caregivers may use locally available poppy tea for infants as a local remedy for cough or crying; this was reported by several staff members as opioid overdose cases.

“There is a conception if they give kahwa (tea) they will not get a respiratory infection. More they (babies) drink, more they lose weight. Muscles are wasted because they are not proteins. There is only sugar maintaining for brain. Doesn’t have any nutritional value. Sometimes they come back with too much kahwa (tea) and opioid poisoning. There is naloxone as antidote. We use them. We explain them the problem you are giving kahwa (tea) and this is causing him. He is floppy and not responding. Sometimes they understand, sometimes they don’t. We cannot interpret after they go home. I have seen twice opioid poisoning…Although parents didn’t tell their kahwa (tea) ingredients, adding opium seeds have been practiced since long, and (empiriacal) Naloxone treatment worked well.” (Staff, 19)

Commercial probiotic products claiming effectiveness for infant abdominal pain are often used by families. This is also called ghutti (marketed infant drops) in Pakistan, but differs from the ghutti used in the traditional ritual of the first ever sweet feed for newborns, as illustrated above. One mother reported that it had also been used in the local hospital where she delivered the baby.

“For the three days I had no breastmilk. Even though I was giving it to baby but there was no milk in it. For the three days the baby was eating ghutti (marketed infant drops). It’s liquid. Gave it to the baby in the hospital, too.” (Mother, Mansehra, 12)

Calming down a crying baby seemed a priority to caregivers. As the case reported, the juice had been used for quick relief.

“Patients came to the nursery, they were drinking juice and feeding it to the baby as well on the way to the hospital. They said they thought they should give it to the baby because he was crying.” (Staff, 25)

b. Suboptimal bathing, wiping, wrapping, and umbilical cord care.

Hygiene/sanitation is another challenge in rural and remote areas. Many caregivers reported that they had not yet bathed the newborn. With temperatures dipping to sub-zero levels in winter in the area, caregivers were afraid to bathe newborns. Yet, newborns were not wiped daily either, which suggested that minimal hygiene was not maintained.

“We haven’t given a bath yet (Day 22). We wiped after four days he was discharged (Day 8).” (Mother, Battagram,13)

“No, there was too much cold, so because of that fear, did not bathe him.” (Grandfather, Battagram,18)

Different kinds of topical agent application for umbilical cord care were described by both mothers and staff. They included spirits, Polyfax (pharmaceutical brand antibacterial ointment), mustard oil, ghee (clarified butter), kajal/kohl/surma (blackish eye cosmetic), turmeric (spice), clay, and ash, to name a few. Whilst the effectiveness of folk remedies has mixed reviews, umbilical cord infection cases were noticed by staff.

“I put kajal (blackish eye cosmetic) on umbilical cord, which was told by the elderly people.” (mother, Battagram, 7)

“Those who come to us from rural areas, have usually used kajal/kohl (blackish eye cosmetic) and turmeric (spice) on it. Those who delivered here only use spirit but those who come from outside use kajal/kohl (blackish eye cosmetic), especially who are delivered at home. When they go home and then come back, baby is all blackish. When we open the baby, it smells so bad, we see it’s infected. The majority have an omphalitis.” (Staff, 21)

“I noticed at home they use mustard oil, different other types of oil, and Dalda oil (refined oil brand). And by the way, I think healing gets fast with oils like Dalda and all. I myself have witnessed this in rural people. I have also seen they even use ashes. It works as antibiotic. It’s very rare but I have seen it with my own eyes.” (Staff, 22)

“At home people usually use mustard oil. I haven’t seen cords infected by the agent, but I have seen cords infected because it is covered with the diaper. If it is outside the diaper, then it is not infected. Some cases came upon admission, we have seen kohl (blackish eye cosmetic) and henna (herbal dye) used on their umbilical cords. Afghani people use henna on umbilical cords and genitalia, maybe because of its antibiotic properties.” (Staff, 25)

The risk of hypothermia and the struggle for temperature control in neonates were a concern of many staff.

“Their elders wear jackets, coats, and shawls but they bring baby naked. Without any protection and warm clothes. Sometimes they bring the baby in a single shawl of the mother. Baby should be warmed up and clothes properly.” (Staff, 21)

“Wrapping is OK, but they tie too much.” (Staff, 20)

c. Influence of local/traditional family experiences.

Knowledge and practice of newborn care were strongly influenced by local, traditional, and family norms and experiences. Most newborns were not given the zero dose (birth dose) vaccination for polio and tuberculosis. Usually, parents need to take the newborn to the nearest vaccination center within a few days of birth; however, access to facilities and lack of consent from the elderly were obstacles.

“Elders did not give it attention so I could not ask them to take the baby for injections.” (Mother, Battagram, 7).

One staff member pointed out that, overall, newborn care was not updated from the parents’ generation, due to lack of information from outside the home and family hierarchy, or obedience to elders.

“They are good in family support. But medically they are zero, to be honest…We don’t have access to social media awareness thing. Instead, we watch commercials of biscuits and chocolates and so on. We don’t see commercials which shows how to take care of babies and mothers. In India, there are many short films, and they are posting in facebook. In Pakistan, I didn’t see any of it…. If you bathe a child, he becomes sick. Baby is OK not to bathe 2-3 weeks. I think they are trying to follow from parents. They are not willing, but parents are willing.” (Staff, 19)

The health literacy of the elders’ generation impacted decision making on whether to seek medical care. While one mother appreciated the absence of influence from elders at home, another mother explained that her mother-in-law would not agree to going to the hospital despite a medical emergency.

“There is no elder person in our home, so we go to hospital.” (Mother, Mansehra, 8)

“Last time we could not come (to hospital for delivery) and even this time, we were not coming if I had not been bleeding at that time, delivery would have happened at home. My mother-in-law was saying it’s not your time when I was bleeding. She did not trust me that I am feeling labor pain. I said, take me to the hospital. Then, my aunt’s daughter-in-law said that she was bleeding so take her to the hospital immediately. Then they took me to the hospital.” (Mother, Mansehra, 15)

a. Home treatment by family knowledge and experience.

Some families attempted home treatment, such as direct exposure to sunlight for jaundice, as quoted previously in Theme1(b), and kahwa (tea) for chest infection and fits.

“We brought him to hospital because he had a fever and was having some fits… We gave kahwa (tea) with sugar just a little, not much, because foam was coming from his mouth.” (Father, Battagram,16)

b. Custom to seek moluvi (local Islamic preacher).

Other families took the sick newborn to the local moluvi (Islamic preacher), who they believed could heal patients religiously by giving or selling amulets.

“Initially, he was fine, he had no issues and we went back to our area. Next day he turned yellow for which we did some medicine and Taweez (amulet) for him, and he became fine with that. Then he developed a chest infection. He was unable to cough easily. We took him to the private clinic and then to the government hospital. But no betterment was seen in him. After 22 days (from birth) we brought him here.” (Mother, Kohistan, 1)

c. Distrust/quality of rural health facilities.

Often after failure of home and religious remedies, families sought medical care. Some attempted nearby clinics and were then referred or self-referred to bigger hospitals. Others traveled straight to the tertiary care hospital. In any case, underlying limited capacity and distrust of local rural health facilities were visible.

“He was badly crying one night so took him to the nearby hospital but there were no doctors, so we came here.” (Mother, Mansehra, 5)

“They were saying leave him here (local hospital) and he will become okay. There was no proper management of oxygen. Even if the baby dies there, they will not tell you to take him back that is why babies get destroyed there.” (Mother, Kohistan, 1)

a. Short duration of postnatal stay in health facility.

Mothers were often discharged on the same day of normal vaginal delivery, and two to three days after cesarean section. Obviously, there is not enough time for postnatal observation, examination, health education, and counselling before discharging home.

“After one hour from delivery I was discharged (from district headquarter hospital). No health education, PNC reminder was given to me. It (delivery)was nighttime and there was no doctor, only nurses were there.” (Mother, Kohistan, 4)

b. No reminder of regular PNC and immunization.

Most mothers narrated that they did not return or were not even reminded to come back for regular PNC or routine immunization by healthcare providers, other than mothers coming for removal of sutures from a caesarean section.

“(Did anyone tell you to come back for PNC?) No. I wanted to check up on the kid, but they said your baby is alright and there is no need for checkup.” (Mother, Kohistan,1)

One mother returned for suture removal late due to financial constraints, but used the opportunity to report a newborn feeding issue. It implies that she did not have anyone or anywhere nearby to seek help for her newborn’s condition.

“The doctor said, come to me after one week and I will unstitch your stitches. But I did not go to her for 10 days. We borrowed money and then went to her. I told her it’s been two days since my baby had not drunk milk.” (Mother, Mansehra, 2)

c. Limited/ineffective health education/counselling.

There was a discrepancy regarding health education between service providers and recipients. Whilst staff indicated that they do provide health education, or at least try to, including that on breastfeeding, hygiene care, or family spacing, mothers and families rarely recalled health education or counseling during ANC or admission to health facilities.

“[PNC] They said if you feel any issue then come for check-up but I was fine and my daughter was also fine, so I didn’t go… [Health education such as danger signs] The doctors didn’t tell me such things but the Lady Health Worker (community health worker) told me about these issues, and told me to consult a doctor if I face any such issues.” (Mother, Mansehra, 8)

Staff members implied that mothers’ and families’ availability and time constraints hindered their ability to provide adequate health education.

“Basically, we try to educate. You have to stimulate before you start pumping. I encourage them to breastfeed. There is a lactation nurse now. Whenever they come, I try to encourage. If you don’t give, child gets sick, infectious diseases. Obviously, they get burping, but it is normal. I try to clear all misconception but too many people so I can’t talk to them all. Mostly, they are fine when I talk, they agree to do it…. It is time issue. Although I have allocated time to communicate with all the parents, sometimes we call them on phone, phone is busy.” (Staff, 19)

a. Maternal Malnutrition.

Among the 18 newborns’ mothers, eight experienced pregnancies five or more times, and among them five had given birth five or more times. The earliest age at marriage was 13, although remote women did not remember their exact age. Frequent pregnancies with short intervals and poor nutritional intake for pregnant and lactating women were demonstrated in our study.

One mother mentioned that she did not eat meat during her entire pregnancy, due to poverty and advice from religious preachers and doctors, but it is not clear who she referred to as doctors.

“They say, doctors and moulvi (local Islamic preacher), said you shouldn’t eat chicken because you have germs in your body. For 10 months I ate only okra (lady finger). I am poor and I chose to be patient. I just wanted to have a baby.” (Mother, Mansehra, 2)

The nutrition of mothers was not a priority for some in-laws, reflecting the lower hierarchy of daughters-in-law, as a staff member noted.

“Some mothers-in-law come to postnatal ward and don’t take care of their daughter-in-law, neither give them breakfast on time, nor dinner or lunch, so we then tell them.” (Staff, 24)

b. Poor understanding of complications.

Preterm birth can occur spontaneously, but one mother narrated that her preterm birth at eight months was triggered by intercourse. It was not clear if the husband knew or understood the doctor’s instruction.

“First one was a girl who died after birth. It was preterm at seventh month. She was born alive, lived for six hours and then died. I didn’t have any idea in my first delivery, I literally had no idea at all. And for this delivery, I didn’t have any idea, but the doctor had prohibited us from having intercourse. But my husband at night (did it). On the same night the labor pain started. It was not with much force but (pain started after the intercourse).” (Mother, Mansehra, 14)

c. LBW and VLBW babies cared for at home.

In our study, four newborns below 2 kg had been cared for at home (1.1 kg, 1.5 kg, 1.6 kg, and 1.7 kg). It was revealed that some birth facilities did not refer LBW babies to higher levels of care, and even those who were admitted to the newborn care unit could be discharged before recovery, due to bed control and the hospital environment for attendants.

“I have twin babies, one boy and one girl. He was fine for 27 days. Yesterday, he vomited through his nose. The vomit was yellow in color. He was fed formula milk. Now doctors have taken out yellow water from his stomach. I don’t know the boy’s weight but maybe 1kg [medical record indicates 1.1kg].” (Mother, Mansehra, 6)

“Because of cross infection babies get sick. We tell them to take the baby from here. Those whom we don’t want to send back, they say we are taking the baby back. And those to whom we tell that the baby is better and take care of him at home, get infections here from other babies.” (Staff, 21)

“Smallest one was 0.9kg. I didn’t discharge him, but they wanted. Unfortunately, he died after three days, they told me. They were so tired. They stayed here more than a month. No place to feed, no place to stay. They are from Mansehra. They wanted to go home. I discharged with nasogastric tube so that he can take proper amount of feed, all the supplement, all the preterm probiotics, vitamins, as he was not taking orally. But still, he didn’t survive.” (Staff, 19)

In contrast, one staff member shared a success story of a 0.9 kg VLBW baby who was discharged from the birth facility at less than 1 kg but was followed up closely on an outpatient basis.

“One patient was about 0.9 kg weight…He was admitted with me for two or three days in the hospital. Then I counselled about care at home. He was regularly followed up with me (as an outpatient), I counselled about home care, what you will do, about complications, how to manage. And he survived. He is 6-7 years old…He survived without any disability, any complications. Preterm, LBW, many complications…VLBW babies, you have to work a lot, regular follow-up, regular follow-up. People are, attendants are uneducated. I mentioned every aspect in this case. I had a weekly baby check with attendants….Breastfeeding and feeding in this case.” (Staff, 20)