Background
Methods
Study setting
Sampling
Selection of district hospitals
Deliveries per annum | Number of neonatal beds | Rural/Urban | KINC Score at midpoint/88 | Reason for selection | |
---|---|---|---|---|---|
Hospital 1 | 3750 | 11 | Urban | 72.0 | Overall highest QoC score at midpoint |
Hospital 2 | 3500 | 11 | Rural | 66.4 | Second highest QoC score at midpoint |
Hospital 3 | 2750 | 8 | Rural | 61.6 | Biggest improvement in QoC score from baseline to midpoint |
Hospital 4 | 3000 | 9 | Rural | 60.3 | Second biggest improvement in QoC score from baseline to midpoint |
Hospital 5 | 3500 | 11 | Rural | 53.5 | Least improvement in QoC score from baseline to midpoint |
Hospital 6 | 5500 | 17 | Urban | 42.3 | Second least QoC score at midpoint AND lowest improvement in QoC score from baseline to midpoint |
Hospital 7 | 2500 | 11 | Rural | 39.2 | Overall lowest QoC score at midpoint |
Selection of mothers and HWs
Data collection
Ethics
Data analysis
Results
MOTHERS | n = 24 |
---|---|
Age Group | |
15–20 years | 5 |
21–25 years | 8 |
26–30 years | 8 |
31–35 years | 3 |
Race | |
African | 23 |
Indian | 1 |
Baby Information | |
Pre-Term | 10 |
Post-Term | 2 |
Full-Term | 12 |
HEALTH WORKERS | N = 20 |
Age Group | |
Younger than 30 | 3 |
30–40 years | 5 |
40–50 years | 10 |
50–60 years | 2 |
Race | |
African | 15 |
Indian | 2 |
White | 1 |
Cadre of HW | |
Doctor | 7 |
Professional Nurse | 12 |
Unspecified | 1 |
KINC Training | |
Yes | 9 |
No | 11 |
Mothers’ perceptions of care
Observed care
When mothers observed HWs soothing their babies when they were upset, rather than leaving them to cry, or calling the mothers when the baby needed the nappy changed, this made the mothers feel that babies in the neonatal unit were cared for.MOTHER: do you see those machines that they use? You sometimes see that they are all plugged next to your baby’s bed, then you see them removed because your baby is better, that is what I have seen and I like. And there are always staff there, busy treating our babies (Hospital 7).
In contrast a few mothers expressed dissatisfaction with the quality of care when they observed health workers failing to provide care timeously or leaving the baby to cry.MOTHER: I can say that they take good care of the baby because sometimes when I go there to breastfeed I find that the baby was crying and the sister has him, quieting him. I can say I really like that (Hospital 4).
MOTHER: (what I don’t like) is that if we are not present and the baby is crying, he just cries until he stops especially when it’s not the time for us to go in the nursery (Hospital 7).
Communication
Mothers described important topics for information sharing in relation to the clinical condition and progress of the baby, the mother’s own role in caring for her baby on the neonatal unit, and information about tests or procedures to be undertaken on the baby.MOTHER: As you know they take shifts, so you find that some (nurses) talk nicely and some don’t talk. She (nurse) would keep quiet until she goes (home). She doesn’t say a thing, she doesn’t tell you if, maybe, the baby’s amount of feed intake has increased. When the right one arrives, she asks you if you saw that the doctor wrote that the weight has increased and how much is it? I would say “no I did not know I’m still giving him the same amount of feed”, then I increased it after I’ve been told by the nurse who was off for 7 days (Hospital 4).
Mothers reported that when there was open information sharing and consultation between HWs and mothers regarding the baby’s health, they felt included in the baby’s care. Further, several mothers mentioned that when HWs were supportive in their communication, the mothers, in their turn, felt able to ask questions, raise concerns, and take a strong role in the baby’s care. Thus, effective communication from HWs led to a two-way dialogue between HWs and mothers, which helped mothers participate in the care process, and assist in the caring for the baby in a way that was an empowering and positive experience (Fig. 1).MOTHER: What I like the most is that the nurses are always close to the babies, they never lose sight of them and they always tell you should there be any changes on the baby. Even when they were inserting drips they explained to us that drips do cause swollen skin but should it happen that it gets swollen, they will be there to take it out. They even explain to us how the drip functions (Hospital 2)
When HWs involved the mothers in the ongoing care of the baby, the mothers described feeling less anxious, more involved in the decisions and satisfied that the baby was receiving correct care. Several mothers described instances where they had informed HWs about changes in the baby’s condition or reminded the nurses about the baby’s medication.MOTHER: So they speak nice, they explain to you that as the baby has jaundice, it is something that will end. I must make sure that I feed him and make sure that the umbilical cord is clean all the time. They are alright, they don’t have a problem because when I missed the time to wake up, they come and wake me up and I go to feed him. (Hospital 4)
In contrast, some mothers reported that HWs were often rude and disrespectful to them. ‘They (nurses) sometimes yell at us, and they don’t check how the baby is’ (mother, Hospital 7). This was confirmed from the observations where HWs were frequently seen to be disrespectful and discourteous in the way that they spoke to mothers, and to speak loudly about the baby’s condition without consideration for privacy or confidentiality. This made the mothers fearful of asking questions about their baby’s condition, and damaged the relationship between mothers and HWs, making communication difficult.MOTHER: When they forgot to give me medication I would go and remind them and the response that they would give me are polite and usually they will say ‘thank you for reminding us’. They will say ‘I will give you I have forgotten’, that makes it easy for you to approach them (Hospital 5).
Mothers also described that HWs did not listen to them, treat them with respect, or respond to their concerns. Observation findings also highlighted several occasions where mothers raised concerns and these were ignored or not addressed. Several mothers described occasions where HWs used their authority over mothers to make them wait for care or accept poor care. In some cases, this led to care being withheld from the baby (Fig. 2), and to serious incidents of mismanagement, as described here by a mother who returned with her baby in an ambulance from the referral hospital and was refused a bed in the neonatal unit because an administrative process had not been completed.MOTHER: Because if I were to go to the sister and I tell her she forgot to give me medication for the baby and she shouts at me, I would not be confident to go to her the following day to remind her, I would be quiet (Hospital 5).
MOTHER: I came at night and the baby had to get some warmth; so she (nurse) said on the letter she couldn’t find the other form that should accompany it. So, she instructed me to go and ask for it on the admin department. I had put the baby on the bed but she said beds were not available at the moment. It was raining hard and there was thunder. I walked out with the baby and that did not sit well with me, it hurt me. Even today, when I think about it I get hurt. I then went to ask for that letter and they said they can keep her (the baby) because she comes from (referral hospital). I then went back to her to tell her that and she started preparing the bed for us.
INTERVIEWER: So they made you walk with the baby in the rain?
In addition, mothers often said that, although the care of the baby was good, the HWs did not consider them as important in the care. ‘They do not pay attention to you as a parent, they do not care if you know or you do not know’ (mother, Hospital 6). Mothers also reported that they did not feel able to ask questions about the condition of the baby.MOTHER: Yes, it was a thunderstorm and it was at night. (Hospital 5)
MOTHER: If you ask (questions) you become annoying (to the doctor). He just came now and took blood but he did not tell me what it is for. Maybe I must ask him again. At times they do have the care, but to a parent they do not do follow-up to make you understand what is happening. Even when a person from home is phoning to ask about the problem, how is the baby, you will say the baby is growing because the weight is increasing, but you don’t know what is going on with the baby (Hospital 6)
It was important to mothers that the reasons for the rules they were asked to follow in the neonatal unit were explained, for example hygiene practices or not placing items for their baby in the incubator. Many mothers reported that HWs did not clearly explain to them the reasons for particular actions required of them or their role in caring for their babies. As a result, mothers did not understand their role, and felt anxious and uncertain how to behave while in the neonatal unit, often relying on the support of other mothers to assist them in caring for the baby ‘I would also watch how other mothers do things, then I will do like them’ (mother, Hospital 5). Mothers also described that HWs shouted at them for doing the wrong thing, even when they had not been given appropriate explanation or instruction.MOTHER: I’m the one who puts the milk in the syringe, it’s because she’s still a bit small to breastfeed. So the nurse showed me and she told me if I have a problem…I should alert her, she will help me and I shouldn’t do anything I’m not sure about (Hospital 5).
MOTHER: Eish you don’t feel free [at peace], because they do not explain exactly why you should only change the baby’s nappy and not do anything...because I came to change a nappy only, they do not explain to you why you should not feed or why should not touch the baby (Hospital 6).
MOTHER: Even yesterday he (doctor) called me and told me they need to draw ‘water’ on the spine.
INTERVIEWER: The baby’s?
MOTHER: Yes, he drew ‘water’ from the baby’s spine and again he asked for my permission
INTERVIEWER: Okay how does that make you feel, the fact that they ask you for permission?
In contrast, some mothers described that when they were not given information and HWs undertook procedures on the babies with no explanation, made them feel anxious, vulnerable and disempowered ‘It is difficult when someone does something to your baby without telling you’ (mother, Hospital 7). In four hospitals it was observed that doctors carried out ward rounds when the mothers were not present, or without speaking to the mothers even when they were present. Several mothers described instances of non-consented care and this was observed in several hospitals. Overall there were many mothers who stated that, although the baby was well cared for, they felt excluded from the care of their child.MOTHER: It makes me happy because it’s really hard if someone does something to your baby without notifying you (Hospital 5)
MOTHER: As I mentioned they take a very good care of the baby. The only thing that is undesirable is that they do not inform the parent. They do not inform the parent but they take good care of the children because every time when there is something that they don’t understand, they take blood and check what is the problem, they go for x-ray, ultrasound, they follow everything to the baby (Hospital 6)
Health worker perspectives
INTERVIEWER: how do you as doctors cope with that (mothers not complying with instructions)..?
HWs expected mothers to take an active role by asking about the progress of the baby. In particular, nurses expected mothers to ask about their baby’s health from the doctor to demonstrate their interest in the health of the baby but mothers appeared unaware of this expectation. During observations it was noted that nurses became annoyed when mothers only asked about the baby’s health after the doctor was gone, and at times nurses ignored the mother’s questions and told her she should ask the doctor when he/she next came around. However, when asked directly, HWs were able to explain this behaviour in terms of the African culture, where asking questions may indicate a lack of respect. ‘with the African culture I think it’s that respect, part of respect for them (mothers) is to not question anything, not to ask anything, just to accept whatever is being done’ (doctor, Hospital 6)DOCTOR: Well, unfortunately we can’t play PI (private investigator) all the time, you know, but what we try to do is to make sure that the baby that is in the nursery is taken care of, as possible as we can. If the mother is not playing her part, we take the responsibilities away from her and we try and take care of the baby (Hospital 5)
In addition, in several hospitals HWs described mothers giving incorrect and misleading information about the health and progress of their babies. This was interpreted by HWs as the mothers ‘lying’ about the condition of the baby in hope of being discharged sooner from the hospital.DOCTOR: It’s still a situation where you actually have to call the mother, explain things to her because they would not ask things especially to us doctors. Sometimes…sisters will overhear them (mothers) talking …then they will start complaining about what they don’t know and all their fears, so they won’t talk to you, they will talk to each other (Hospital 6).
In one case, a doctor described how mothers smuggled in formula milk to the neonatal unit to feed their babies, and pretended that it was expressed breastmilk.Nurse: I think the problem is they want to go home. I think if they express their feelings, their problems, that will cause them to stay in the hospital for long time do every time, (so) they just say no, no problem (Hospital 2).
DOCTOR: it’s because when they walk in, you see all of them walking in and you aah “but you went from no milk to now so much milk and it’s so white”. And we actually found out that, no, they (are) actually sneaking in formula (milk), so now we have asked them to express when they’re here so that we can actually see them, so now they have to express in the ward that’s why we started with that rule (Hospital 5)