Stephanie Kukora, MD (Host): Welcome to the Pediatric Ethics Podcast Series sponsored by the Children's Mercy Bioethics Center at Children's Mercy Kansas City. I'm your host, Stephanie Kukora, a Bioethicist and Neonatologist here at Children's Mercy, and today I'm speaking with Dr. Mahlet Abayneh and Redeat Workneh, two colleagues, collaborators, Bioethicists, and longtime friends from Addis Ababa, Ethiopia.

You may recall that I recently interviewed another friend and colleague, Dr. Bedlehem Kassa, who was a pediatric critical care physician in Ethiopia about the ethics education clinicians received there. Today we're taking a different focus to hear about some of the challenges in providing clinical care to families in the NICU. My guest, Dr. Mahlet, today is an Associate Professor in Pediatrics and Child Health and Neonatologist at St. Paul's Hospital Millennium Medical College. She studied medicine at the University of Gondar, completed her residency at Addis Ababa University, and neonatology fellowship at St. Paul's Hospital Millennium Medical College in collaboration with St. John's Medical College in Bangalore. She is one of only a few trained neonatologists in the entire country and is one of the most prominent figures in newborn advocacy, driving policy, training, and quality of care in Ethiopia. She has served as the Director of the Neonatal Intensive Care Unit for the past four years and was integral in its development from a level two to a level three NICU.

She also leads the Neonatal Fellowship Program and has played a major role in developing national neonatal care training manuals and technical guides for the NICU and kangaroo mother care. Dr. Mahlet established the Ethiopian Neonatal Network in collaboration with the Ethiopian Pediatric Society and the Vermont Oxford Network. She also consults as part of the technical working group for the Federal Ministry of Health for Newborn and Child Health.

My other guest today, Redeat Workneh, is a lecturer and clinical nurse educator at St. Paul's Hospital Millennium Medical College in the School of Nursing, Department of Neonatal Nursing, and in the Department of Pediatrics and Division of Neonatology. She teaches undergraduate and postgraduate nursing students. This position is not well appreciated in Ethiopia at this time and she is one of the pioneers in this role. Teaching is her passion and she's involved in different teaching and training activities focused on neonatal health. She holds degrees in neonatal nursing and sociology and has a master's in public health from Addis Ababa University.

She has post graduate training in clinical nursing education with a program between St. Paul's Hospital and Boston Medical College. Redeat has been involved in providing neonatal curricula to many of the nurses and midwives in Ethiopia, especially around essential newborn care and helping babies breathe. She's also a member of the content expert groups of the Global Neonatal Advocacy Committee team and the American Academy of Pediatrics.

Also, a little background about St. Paul's. St. Paul's Hospital is a large referral center in Addis Ababa, the capital and largest city in Ethiopia, and one of only a few NICUs in Ethiopia with mechanical ventilation capability. Because of this, complex neonatal patients and their families are referred from all over the country.

Thank you both so much for speaking with us today. First, I'd love if you would tell me a little bit about the diversity of the patients you see at St. Paul's.

Mahlet Abayneh, MD: Thank you, Dr. Kukora. So, Mahlet speaking. At St. Paul Hospital, we have an admission rate of 260 to 300 neonates per month in the NICU, and 80 percent of the admissions are from in born, and 20 percent are out born. So, in borns usually come from the town, Addis Ababa, where most of their parents are educated.

And also speak the language that is a national language, that is Amharic. And the 20 percent are from outside, outside rural or urban areas, which are like nearby or sometimes even throughout the country. And even in the delivery room, for the 80 percent of the inborn admissions, in the delivery room we have booked and unbooked deliveries.

 Most of the unbooked deliveries happen from, for emergency referrals from, again, primary hospitals or health centers in and outside of Addis Ababa, the capital. And the leading causes of admissions are prematurity, infection, neonatal hyperbilirubinemia, birth asphyxia, and also like congenital anomalies are the leading cause of admission to the NICU. So those are the diverse cases that we see. And there are also other diverse conditions like in their language, culture, religion, that the patients and the have. Thank you.

Host: Wow. So what are some of the challenges posed by serving such a diverse population?

Redeat Workneh, RN, BA, MPH, CNE: So, we actually face some difficult challenges in our unit and trying to provide neonatal care. And these challenges arise from the nature of the country being a very diverse population and culture in norms and values and religion. So, as my colleague mentioned, the catchments are around from all parts of the country with diverse population.

So it means they come from different cultural backgrounds, different values and norms, religions, and also different traditional practices, especially around their health beliefs. So, like, some of the examples could be around newborn health is like you have a sick baby, like a sick newborn; medical considerations or why the baby got sick in terms of medical understanding is not something that comes in the first place to most of our population because they think that if a newborn is sick, it's something related to, you know, your practice or your culture or your religion, like it's a curse or a sin.

So we really face quite a challenge in some of these cases. And, in doing that, we sometimes find it very hard to communicate with families about the medical conditions of the newborns. So the cultural differences, for example, and that go with some of the traditional practices, call it harmful or good especially we can mention some of the traditional practices we had around cord care, like, we know how we teach about how clean cord care should be provided.

And then there are some traditions who put some dung or some soil on the cord. And they consider that as their traditional practice, and we really find it hard to communicate that this was something wrong that they did, and trying to balance that with their traditional beliefs and practices.

And this is also the same with prelactal feeding. For example, most of our cultures and most of the regions, it is considered that you first have to throw away the first milk, what we call the colostrum. You don't have to feed that and where in science or in our practice in medicine we say how important it is to feed the colostrum.

So we can mention so many examples where we have some challenges because of the cultural beliefs and the traditional practices among the society or in our population. The other thing could be related to health literacy. So our community, especially those who came from the rural area are not well aware about this health education is not well given.

And this could be because of the access to information because they don't have a good access to information, and they don't even have the access to go to the health facilities to get those information. So even if there are some initiatives that are being done to address at the community level, still the health literacy is somewhat very low and it needs to be done. Some efforts need to be done.

So, because of having a poor health literacy, we face some challenges like, you know, families, the outcome expectation among our families who admit their babies or who admit their newborns into the NICU would have two ways. The first thing is, like, outcome expectation, I mean, it could be positive or negative. The first thing is, it's very hard to get the newborn admitted because if a newborn is that sick, then everybody thinks, like, it's not going to survive. So there's no need to admit the baby to the NICU, it's just sick, and we just have to wait and see. But on the contrary, if they do bring the baby to the NICUs or if to health facilities, then there is this expectation that, you know, a physician or the health professionals in the hospital can do anything, like everything, to expect a full recovery. And sometimes, you know what, we have an outcome in medical practice. And when we have, especially in bad outcomes, we really find it very hard to communicate about the clinical course of the baby. And this sometimes can have an impact on the trust between we have, between the health professional, between the health institution and the society and the population.

Host: Wow yeah.

Mahlet Abayneh, MD: Yeah. The other is about the language. Like there, we have diverse population in Ethiopia, in language. Ethiopia has like over 70 people, Ethiopia's population speak over 70 languages. And dominantly for patients coming to St. Paul, we have two languages, the Amharic and Oromifa. And most of our patients coming from outside of Ethiopia, Addis Ababa, they speak Oromifa, and the staff, especially the clinicians, speak Amharic, and the other support staff speak either Amharic and Oromifa. And most of our patients speak a single language. So this is another problem that we have, like sometimes we are not able to communicate with the patients. It's the same thing.

There is no also medical translators. There is no one to help on the translation, so we have to ask for a clinician who is bilingual, who can speak two or more languages, and we have to ask them to translate. Or sometimes there could be a parent or a family who is bilingual, and we have to ask for favor to translate, to communicate with our patients.

And sometimes we ask other support staffs for the communication. So language is one of the challenges that we have in working in St. Paul and this is what we need to tackle that problem.

Host: So it sounds like a lot of challenges and you guys have also talked a little bit about what exists there to sort of help bridge the barriers and the challenges that you just have with some of the limitations to some of the resources that you have. I know that there's also currently some conflict between ethnics, ethnic groups in Ethiopia. Can you tell us briefly a little about what the situation is and how this impacts your provision of neonatal care?

Mahlet Abayneh, MD: Yes, recently there are several times there are places where there is internal unrest and there are different traveling groups. And these traveling groups are mainly based on ethnic background and there are problems against the government and also against each other. And so there are different problems that the population is suffering.

Sometimes roads are blocked and they cannot get the facilities that they have to get mainly hence their access to their health facilities will be blocked, to schools, and also to public institutions, like they can't, children cannot go to school, and also people cannot work, cannot do their farming, and it has a lot of impacts.

And also, sometimes, when an ambulance is being referred, roads could be blocked, and they cannot come to the city, and also patients who have completed their treatment in St. Paul, they cannot go back home on time. And this is creating a lot of issues. So there are a lot of unrest and problems in the country going on.

And it has affected a lot, especially mothers, pregnant mothers. We have our NC rate is coming down. And there is also difficulty in delivering health facilities. People are afraid to get out to the hospitals, health centers and come to the cities to deliver and get service. So there is higher rate of home deliveries.

And uncounted and unintended neonatal and maternal mortality. There is increased maternal mortality in those areas where there is a problem and there is also like delayed referral. Even if they are given the referral, they have no way to come to the hospitals. The roads are blocked. They are risky to their life. There could be some problem, their fight gun fight. Gunshots could be there, so they don't want to come to the cities. And the other is decreased vaccine coverage, increased childhood malnutrition. And also as I have said earlier, whenever someone has completed treatment in our hospital, in our district, it would be difficult to go back to their home and continue their routine because the roads are blocked and also there is no easy access for public transportation.

And after discharge also we give follow up to refill their drugs or just to check for the growth or development of newborns, but for similar problems parents are not able to bring their kids to Addis. . And the other thing that we used to do, as you mentioned earlier, there are like few neonatologists who are centered in Addis and our job is to do supportive supervision to the peripheral hospitals, training of staff in the peripheral hospitals. But because of similar issues, they cannot come to us and we cannot go to them. So this has also another impact.

Host: Yeah, no, that's really awful to think about all those patients, you know, all over the country who are struggling to have care. So how do you all as clinicians address some of these many challenges that you've told me about? Is there anything that, you do? Any, strategies at your disposal? Any approaches that seem to work? I think practicing, and there are some things that we here in the U.S. have similar challenges with and there are clearly some things that we don't experience at all.

Redeat Workneh, RN, BA, MPH, CNE: Yeah, so it really makes it difficult not to have a formal system to address this challenge or so. We tend to focus on, on informal ways of tackling these problems, even if we try and push and insist into the formal ways to get heard, to get priority, to give attention to maternal and newborn health in the country.

So it's like we try and use what we have available. And like, how my colleague mentioned, for example, when we have a language barrier, we can't ask for a medical translator, which is something that does not exist in the country. So we try and use the staff and family members, because it's, you know how these days we use Google Translator, but that is not even functional to some of some countries with the local languages. You can translate Amharic to English, but you can't translate Amharic into other languages. Where it would have been nice to have this artificial intelligence to support these things, but so we use what we have.

And sometimes we arrange public transport like, sometimes we even use the ambulance. So if the ambulance brings one baby, like if the baby is referred in, into the hospital, then we ask the same ambulance to take one baby who's going to be discharged. So, even if with this conflict, sometimes they have, they allow the ambulances to pass through.

So we kind of use that kind of system. And it's very hard to continue. It was very challenging to continue doing trainings and education and mentorship to the sites, to the other NICUs, to the other regional hospitals that we used to mentor, to supervise and support. So we do some personal communication, like communication at the personal level, and we do phone consultation, phone communication.

And with this conflict and unrest in the country; the access to electricity, the access to network, like internet connection, can be quite challenging in most of the regions. So, we used to do some Zoom meetings, like online meetings, online consultation, but that really is not consistent because of the access issues.

And sometimes, when we talk about resource, we mainly talk about financial constraints. So, we do have so many cases in our unit where family could not afford to continue to provide care for their babies, for their moms. So sometimes we go beyond the limit. We go beyond the line and we do some charity activities to help patients from our own pocket.

So we might gather up and say, look, we got this problem. So can anybody help? And so people would contribute something and then we could provide with medications, with foods, and with anything, especially with basic needs that our patients need. And lastly, sometimes we do and try with every possible opportunity that we get, especially in the meetings; we try and convince and insist and explain the situations that we're having to the higher officials like people in the Ministry of Health, people in politics, and it's really important to have these role models or people of influence to help and support to bring to address these challenges.

So these are some of the things that we use, but we still demand, we still see the need to have a formal and a sustainable system to address these challenges because the informal ways might not sustain for so long.

Host: So I know you guys mentioned some times where cultural beliefs were challenging to navigate. And I know that lots of cultures have different beliefs about what newborn illness is and what has caused it and how to treat it. And so I was wondering, if you could expand a little bit more on what kinds of cultural beliefs you see and how it impacts neonatal care and particularly how it impedes your ability to connect with families to provide these newborns the care that they need.

Mahlet Abayneh, MD: Yes, so there are different cultures and beliefs towards newborn health in our country. One most important thing is when families are told that the baby needs admission to neonatal ICU, there is this tradition that we call it a warming role. So parents don't think that, or families don't think that, the baby is critically sick, because whoever is referring will tell them to take the baby to the warming room. That is our naming for neonatal ICU. We call it Mugat Kepelen Angarik, or the warming room in English. So, they will say, like, after three hours, four hours, like, the baby should be warm and go back to his mother. And this is not the scenario.

Baby could be preterm, low birth weight, asphyxia or sepsis, and he may need longer period of time. So when we tell them this, they don't usually agree. Like, they don't consider the baby will survive. And they want to take the mother home, with the baby or without the baby. So, like, if the newborn is really sick, if we, when we tell them the newborn is really sick and needs oxygen and other treatment, IV lines for fluids in the leg, they will feel that the baby will not survive.

And they want to take the mother home and she would have the extra support, that one, better support. In our society, like mothers who gave birth recently, there are different cultural things that will be done. She will be supported by the family and she has to be in the bed 24 hours and she needs all the care.

So if you tell her to stay in the hospital, nobody in the family will support that. So because she was like nine months pregnant, and now is the time to take care of her, and there is no time that she would be in the hospital, which is like not comfortable. There is no comfortable bed for postnatal mothers in the hospitals. There is no good food that we provide, the hospital provide. So the family will say no, she's not going to stay. We are not sure that the baby will survive and she don't have to suffer. So this is one challenge that we have. So that will compromise the baby's care, access for breastfeeding, access to his mom, and the like.

And the other thing is sometimes the mothers would be sick and you may want the fathers to take the role of taking care of the baby. And in our tradition, taking care of babies is mainly mother's role. So the fathers doesn't want to come into the NICU, care their babies, do kangaroo mother care and the like, would be impossible. And mostly what the father suggests is either they will bring their sister, or they will bring any grandmother of the baby, or they will bring any female relative who is willing to take care of the baby while the mother is sick. So this is one of the cultural challenges that we have.

Most of the care is responsibility of the mother than the father. So this is one cultural issue that we have. And the other thing is like you are keeping the baby in the NICU more than a week, two weeks, and the like. So every day the family, the father will complain that she has to go home and to take care of the other kids.

So like we cannot sacrifice three, four babies for this baby that is not going to survive. This is our day-to-day challenge. So this is another cultural thing. So the society has no trust that babies admitted to the NICU will survive. Even if they survive; they don't think that they will be like competent and will survive to their full development.

And the other thing that we have is like in our tradition, as I have mentioned earlier, the postnatal period, it's to take care of the mother. And then most of the time mothers will be kept in a separate darker room so that to avoid evil eyes and other like traditional things. And most of the time, babies will be undetected by the family when they get to jaundice.

And we see babies who are come in with severe hyperbilirubinemia. So this is one of our cultures for postnatal period. So there are different cultures and beliefs that the society do, which affects the immediate postnatal period care for both the mother and the newborn.

Host: Thank you. What if any strategies from a public health standpoint that St. Paul's has been using or The Ministry of Health has been using to provide education about newborn health and NICU care to the Ethiopian community have been helpful. How have these strategies worked? Are there still gaps that remain?

Redeat Workneh, RN, BA, MPH, CNE: Yeah so, St. Paul's is one of the public institutions providing neonatal care, has been using different strategies, like, to mention some of them is like health education and promotion around newborn health through different government and non government organization to address the public. And we also have our hospital's social media where we advocate about newborn health, about different cases.

We use different educational materials to provide to the public. So, that can be addressed only to the people living in the urban setting, so we're not that sure or certain that this addresses the whole population of the country, especially with all the challenges that have, that we have tried to mention earlier.

And sometimes, especially with the small and sick newborns, we try and use mothers, like model mothers who had survived, who had their preemie babies graduated from the NICU and are doing well. We try and use those moms to give health education, to support the moms who are currently in the unit trying to provide the same care.

So, we try and use some model moms and this very recently we have tried to involve some of the good figures in the country, like, famous people, like artists, as an ambassador to promote for preterm babies to promote for a newborn health and we're just starting to try out that and we'll see how that will go in the future.

And the other thing that St. Paul's is really involved in is in supporting other primary hospitals, including health centers which are nearby and referring health centers. Especially, we try and see our data and we kind of sit in a team and say, who's referring the most cases? Who's referring the most serious cases?

Why are these institutions having these cases? What can we do to help them? So can we try and do some trainings or education, see their system? And so we try and do education, on site trainings, mentorship, and we also allow the health professionals, including some of the admin people to come and benchmark in our hospitals. So the gaps related o all this is, whenever you try and initiate some good things like call it a project, call it a mini project; there is a huge gap in terms of fundings or financial gaps. So it's very challenging to ask funding from the public, from the government. So we have to try and do some fundraising activities, which we're not that good at.

And we had some, quite a big challenge around funding. And the other challenge is sustainability. You know, we try and start an initiative and due to many reasons, maybe because we are few in number at St. Paul's, and you cannot reach to every facility that is in need. So some of the programs might not be sustained to bring the outcome that we intended bring.

And we have some gaps in terms of doing research, you know, how important it is to support your assessment with numbers, with data, with evidence. And we really have to do a lot in terms of research and studies; because if we don't do that and if we don't get the numbers that is generalizable to the whole population, you cannot just do and convince people with the numbers that you have in some local context like.

You can do things around St. Paul's and the surrounding, but this does not represent the situation in the country at large. So research and addressing the population, addressing the large community is one of the gaps that we have, and that still is being challenged with all going on. Things going on beyond health, like how we've mentioned the conflicts, the resource limitation, the cultural beliefs, the health literacy, the health seeking behavior, all those things can compromise some of the initiatives that we're trying to do.

And lastly, I think it needs to be monitored and evaluated. So monitoring and evaluation is very important to sustain some of the initiatives that we are trying to do.

Host: Yeah, so in an ideal world where you had limitless resources at your disposable, or at your disposal what initiatives would you suggest to address these gaps?

Mahlet Abayneh, MD: One most important thing is educating the community about newborn health, newborn problems, and that will be one important thing that we have to do. We have to educate our community. Most of the time, when you give counseling for a mother, she wouldn't accept your word, or our word, for granted. They will not say why.

So we need mothers who ask why. Why does my baby have this? What is your plan of management? And then, who are very adherent to the suggestions that we give. So, to bring that, we need to educate the community. Educating the community and empowering mothers and families is one important thing that we have to do to address the gaps on newborn health.

And the other thing is like we have issues locally. Everyone cannot come to the center and the center people cannot go to the periphery. So we need to narrow the gap by training low and mid level health workers. So training, we have an initiative to do community newborn health through health extension workers.

So we need to strengthen that. At least health workers who identify early and refer these newborns. And also manage problems which they can manage locally. So those are some of the things that we have to do. And the other thing that we have to do is to build the capacity of the local staff. We need more neonatologists.

We need more neonatal nurses. And to do this, we need collaboration. Partnership and collaboration is important. So that we can have more health workers who are capable of treating newborn issues. So, those are the others. The other is like, bringing volunteers which can teach the local staff, both in nursing and physicians, and also creating other, like, health advocates, social workers, mother support groups, who can support the mothers in this difficult time. So these are some of the things that we can do.

Host: Okay. So to wrap us up do you guys have any other thoughts you'd want to share perhaps to other clinicians practicing in settings with diverse patient backgrounds or limited resources?

Redeat Workneh, RN, BA, MPH, CNE: I think we pretty much have said it all, but just as a final comment, I think the first thing, because we're talking about resource limited settings is they need to identify what they have and then efficiency comes next. Because you have to try and increase utilization of what you have to the best level that you can.

And in other ways, you have to try and work to minimize waste, because if you analyze it very deeply, there are some things that we really do waste, and we don't use to the maximum capacity of even the limited resource that we have. So identifying what resources you have and try and work to increase efficiency is one of the things that needs to be focused.

The other thing in doing in, in, in such situations or in such setup would be understanding the situation, like what is going on there? What is acceptable? What is not acceptable? Trying to do some situational analysis of the hospital or of the setup, like including the cultural beliefs, the healthcare belief, healthcare practice, and an overall situational analysis needs to be done before trying and putting into an effort and an action in that place.

And the most important thing I would say is try and invest in the actors, in the actual people that do the work. Sometimes you come up with a very good plan, you come up with a very good strategy, but you don't know where to implement it, or you take it to the wrong people, to the wrong organization.

So I think it would be very wise to work or invest on the actual implementers to bring in, to see the change. And the other two points that are very important is try and be inclusive from the beginning. From, it can start from even the planning phase and try to include the higher officials, the local governments, and you just go and how the system allows you in that situation and try to include everyone because in that way, you would have a very good buy-in about this, about your project or about your plan, about your strategy to improve the quality of care given to mothers and newborns.

So inclusiveness is very important. And lastly, the main problem or the main gap that we have is the issue of sustainability. So there really needs to be a great discussion or a huge discussion that involves everyone. A discussion that includes the actual implementers, which usually are left out in those discussions to plan and have come up with a good strategy to how to sustain this change to bring in the quality of care. So these are some of the things that I wanted to add. Thank you.

Host: Okay. Well, thank you both so much for joining me on this podcast. And thank you to everyone who's listening. Again, this is the Children's Mercy Bioethics Center and this is the Pediatric Ethics podcast. Please join us next time as we continue to discuss interesting topics with interesting people.

Thank you.