Table 3.
Illustrative quotes
| Pregnant women | Partners | Healthcare providers | |
|---|---|---|---|
| Disease burden | |||
| Maternal factors | |||
| Facilitators | In my case, this condition started with high blood pressure and swelling of body parts. It affected me so much that I was admitted to intensive care unit (ICU). This condition is related to high blood pressure (Zambia) | Mother may have fits, haemorrhage (India) | I have seen eclampsia, I have seen HELLP syndrome, I have seen pulmonary edema. I have seen stroke, I have seen a massive IC bleed three weeks back. Because of the severe pre-eclampsia we lost the mother (Obstetrician, India) |
| Barriers | Is pre-eclampsia connected to sexually transmitted diseases? (Zambia) | It could be, maybe you are giving her too much pressure at home that’s why that blood pressure keeps on going up (Zambia) | We need to sensitise them. Because mostly, you would ask the woman if at all she has heard of that condition. And she will be so surprised, asking how come it’s high, that condition, or where the BP has come from (Midwife, Zambia) |
| Infant factors | |||
| Facilitators | I also know one woman who had high BP and got fits. Her baby died but she is fine (India) | I have not seen but heard about it. In fact, it happened with one of my relatives. That mother’s BP was very high and baby died inside the womb (India) | They could have…the baby could die whilst in utero because of the raised BP, and they could have a baby with severe asphyxia because of their condition (Neonatal nurse, Zambia) |
| Barriers | Baby will not put weight if it is born early (India) | Mother may have fits and stroke. Baby’s growth will be restricted because of adverse effect of high BP (India) | And also the risk of sepsis is also very high. Because in our set-up, if the baby is shifted to the mother’s side, her handling is more by the attendants. Improper handling. So they won’t do hand washing and things. So the risk of sepsis is very high (Paediatrician, India) |
| Health system factors | |||
| Facilitators | This is what I can say about the dangers of high blood pressure, my sister in-law passed on due to this condition and they only managed to save the child….. So I think from this example, we can see how dangerous this condition is (Zambia) | I know one woman who got seizures in pregnancy due to high BP. She was admitted to hospital. Baby died but mother survived (India) | Quite frequently, exactly. Yeah. Almost every week we have most attention from complication from pre-eclampsia. There are those that go for severe form, they go for dialysis. They have some renal injury as well, you know (Junior doctor, Zambia) |
| Barriers | If woman has high BP then she may not understand what to do!!! (India) | They delayed in bringing this lady to the hospital and by the time she was brought in, the placenta had burst and the baby died in the womb as a result (Zambia) | Sometimes the challenge is that despite being told antenatally, these mothers who experience headaches, they remain at home until that headache is very persistent that they even fail to sleep or do anything. That’s when they come to the hospital. Sometimes it’s late, yes (Midwife, Zambia) |
| Current management | |||
| Maternal factors | |||
| Facilitators | And also maybe the swelling of the body, usually it is the legs, the hands….(Zambia) | I have an in-law who had high blood pressure and swelling of the body whilst she was pregnant with twins. She underwent forced labor and that’s how she was saved (Zambia) | First thing, I hope, first thing when they come, we give an IEC. That is heath talk. We talk to our women every day. So the health talk include danger signs in pregnancy, and what to prepare (Midwife, Zambia) |
| Barriers | Family member will decide whose life is important and who should be saved i.e. mother or baby (India) | Some children born early at 7th and 8th months will survive and some will not survive. My child did not survive. I feel it the destiny which decides the fate of each child. (He laughs in pain) Life and death is in the hands of god (India) | They are told at home no, you don’t have to agree to induction. You don’t have to agree to this. So they follow that. And they would rather follow what their parents or their relatives tell them not do it (Midwife, Zambia) |
| Infant factors | |||
| Facilitators | At 34 weeks the baby is strong and big enough to be delivered. Overall, this will save the lives of both the mother and child. I once gave birth at 36 weeks and the baby weighed 3.8 kg (Zambia) | Both mother and baby will survive. Even the baby is small we can take care of baby so that it can have normal development (India) | I mean, as I said, between 34 and 37 weeks, babies are normal with none of these co-morbidities. Outcome will be good with monitoring (Paediatrician, India) |
| Barriers | Baby was very small so kept in the incubator. The cost of treatment was very high so could afford to keep baby in NICU for 4 days and then took the baby home against medical advice. In home they tried to take care of baby. They used Hot water bottle to keep baby warm. Baby survived for 21 or 27 days and then died (India) | Baby may require more care and medication. Apart from this, I do not know much (India) | Okay. So there are some things that I think…of course we are professional, but you may know them when you are in the shoes of the patient. So for example I think it is easy as a doctor to say give the baby medicine three times a day, but you don’t know the actual struggle that the mother goes through to make those babies swallow that medicine (Junior doctor, Zambia) |
| Health system factors | |||
| Facilitators | So I think they want to deliver you before you get to the stage were you might start fitting and the like (Zambia) | I tell people who had high BP to go to hospital early and deliver early by caesarean section or else mother will die (India) | Gestational hypertension means only the high BP. Then pre-eclampsia means they’ll have all the categories. They have proteinuria, pedal enema, it may have abdominal wall oedema. They have them (Community healthcare worker, India) |
| Barriers | Just to add a few words, sometimes when we pregnant women go for antenatal clinics, they tell us medical terms that we can’t understand (Zambia) | If it is indicated to deliver it is better to deliver and if you delay in such condition people will scold you (India) | Because the few vents, we have like four vents on the unit. And if I have six babies, obviously two babies won’t be put on the vent, and then they actually end up dying (Paediatrician, Zambia) |
| Acceptability | |||
| Maternal factors | |||
| Facilitators | We would be able to save the life of the mother and the baby (Zambia) | On my own behalf, rather than losing my spouse I would say anyway, just do false labor (Zambia) | Okay. First of all we are going to preserve the mother’s life, we are going to prevent her from tipping into severe PE. Yeah (Midwife, Zambia) |
| Barriers | Urban people cannot tolerate labour pain so they prefer to deliver by caesarean section (India) | Then on the disadvantages I think it’s the actual forcing of labor before it’s due. Like everything else that’s forced, this in itself is a disadvantage. For example, in forced labor medicine is used to induce it, these medicines have side effects. God himself meant for pregnancy to last for 9 months before labor can start, but before that time you force it (Zambia) | So they tend not to understand the dangers of the condition that they have. So most of them request to go home, “sister, I want to be discharged” (Midwife, Zambia) |
| Infant factors | |||
| Facilitators | Baby will have advantages. Baby will have less complications (India) | Delivering early is okay because by waiting, an expectant mother might die with the pregnancy or the child might die. The risks are just too many, so it’s better to deliver this person and save both lives (Zambia) | Actually I’m treating pre-term, I am really comfortable. Rather than severe asphyxia. You can’t do anything (Paediatrician, India) |
| Barriers | Maybe my worry is, I am not too sure if they are some conditions on developmental milestones that these children go through as a result of having been born too early (Zambia) | The baby might not have grown properly so it may have some problems (India) | So the thing is, when you deliver a baby at 34 weeks, obviously they are not yet mature. There are a few complications that the baby may suffer as a result of prematurity, for example physiological jaundice, their immunity’s not yet as strong, they may have to undergo septic screenings (Junior doctor, Zambia) |
| Health system factors | |||
| Facilitators | The Doctor has the authority to save you because they have been trained to do so. This is why in the first place we go to them (Doctors) because if you did not want to be saved, you would not have come (Zambia) | Doctors are god so whatever they suggest we will agree for that (India) | Because there are those who start antenatal from the clinics, and the follow-up is not that very good. There are times when the BPs are high at the clinic and they don’t refer them, they refer them quite late at the hospital (Midwife, Zambia) |
| Barriers | If we have saving we will spend it if not we will ask any known person for help. If the patients are very poor they will sell their assets like Gold and bear the expenses of hospital in emergency to save mother and child (India) | We will borrow money from friends. If we have save money, we can use that. There are no insurance schemes right now to pay for expenses of pregnant woman (India) | One more challenge I would… many times the parents are not willing to keep the baby for such a long time. Because they feel that, I mean, the time spent, the amount and the revenues spent on these babies is not good (Paediatrician, India) |