Transcript for
The lived experience of infants in neonatal intensive care – part one
Dr Natalie Duffy (00:00):
As the health professionals to not only think about the physical health of the baby and of the parent, but also to think about everybody’s emotional and relational health, and really harness the power of relationships and harness the power of connection because we know how important that relationship is for growth and for well-being, not only when we’re with us, but for the rest of the family and the baby’s lives.
Narrator (00:27):
Welcome to the Emerging Minds podcast.
Vicki Mansfield (00:33):
Hi, I’m Vicki Mansfield, and you’re listening to an Emerging Minds podcast. Before we start today’s episode, we would like to pay respect to the traditional custodians on the land on which this podcast is recorded, the Wurundjeri people. We also pay respect to all Aboriginal and Torres Strait Islander peoples, their ancestors, and elders past, present, and emerging from the different First Nations across Australia.
(01:01):
Welcome, everyone, to part one of this two-part podcast on the lived experience of the infant in the neonatal intensive care unit. It’s my pleasure today to be talking with Dr. Natalie Duffy, whose work within neonatology and infant mental health provides amazing insights into the lived experience of the infant and how to observe, listen, and respond to what infants are communicating. Welcome, Natalie.
Dr Natalie Duffy (01:27):
Hi, there. How are you doing? Thanks for having me.
Vicki Mansfield (01:30):
And, Natalie, just for our audience to have a little bit of a sense of who you are and what is it that you do in your work.
Dr Natalie Duffy (01:38):
Yeah, so I’m Nat. I’m a neonatologist and I’m also a teacher with the NBO Australasia and a researcher. As a neonatologist, I work in a neonatal intensive care unit, so I look after babies who are born either prematurely or medically unwell who need specialist care and attention straight from birth.
(02:00):
I mentioned that I’m a teacher, so I have a role with NBO Australasia where I teach the Newborn Behavioural Observation system to clinicians from across lots of disciplines. And then finally, I’m also a researcher. I’m in the final year of my PhD where I’m looking to try and understand from the infants themselves what it’s like for them being in hospital. So what’s their lived experience of hospitalisation in the neonatal intensive care unit?
Vicki Mansfield (02:27):
And to clarify for our audience, NBO means the Newborn Behavioural Observation tool. And to set the context for our audience, can you tell us a little about what the neurodevelopmental vulnerabilities for pre-term babies are?
Dr Natalie Duffy (02:42):
Absolutely. I think in my work as a neonatologist, I get the privilege to stand beside babies and incubators and machines every day. And the care and the technology is incredible, but I also see the hidden challenges for the babies and their families, and that relates to their emotional well-being and also their neurodevelopment. We know that the brain grows rapidly during pregnancy, infancy, and beyond. And in fact, we know that a brain is 90% of adult size by the time you’re three.
(03:16):
And for the infants and the families that I’m looking after, some of those critical stages of brain development are happening in the NICU. And we do our best to make it as nurturing and as supportive a place as we can be, but we all know that it’s loud, there’s alarms. The babies are experiencing painful procedures, separation from their families, just the environment and the technology can be quite overwhelming and that can impact on how they’re developing.
(03:44):
So the literature or the research tells us that for hospitalised babies, not only are you at risk of physical health problems in later life, but you can also be prone to challenges with your social, emotional, cognitive, and relational well-being just because of some of these early stressful experiences that you’re having when you’re growing.
Vicki Mansfield (04:09):
It’s a bit of a shock to the system for both children and parents by the sounds of it, initially.
Dr Natalie Duffy (04:14):
Yeah, absolutely. I think when a newborn baby comes into the world, we all think about connection, being together, cuddling, touching, quiet, soft environment. And as I say, that’s not really what the NICU is. It’s loud, there’s alarms, there’s bright lights, and we do everything in our power to try and create a healing environment.
(04:36):
And miracles happen every day in the NICU, and it’s another fantastic opportunity and privilege to watch, but there’s definitely strains on the relationship. And that happens because of, as I say, the separation, the medical complexity, and the emotional toll for both the babies and their parents.
Vicki Mansfield (04:55):
And I imagine for parents it would be quite an unexpected event often and quite an adjustment for them as well.
Dr Natalie Duffy (05:01):
Yeah, absolutely. I suppose anecdotally, talking to the parents that I’ve had the privilege to work with and walk on the journey beside, their bravery and their honesty tells me about the difficulties that they’re facing. And then we also know it from the research and evidence tells us that parents are experiencing a vast array of emotions, so sadness, fear, grief. Some parents are even traumatised, maybe they’ve had this journey before, or it’s bringing back memories of other ill health that they’ve experienced. So they have a really emotional rollercoaster to deal with. And the babies too are actually experiencing this really complex rollercoaster of emotions also.
(05:44):
So then it means that perhaps the babies struggle to send the signals that they need and the parents might struggle to respond to those signals or not notice them because there’s just so much complexity around the whole thing. But then that’s our job as the health professionals who work within NICU to not only think about their physical health of the baby and of the parents, but also to think about everybody’s emotional and relational health and really harness the power of relationships and harness the power of connection and do everything that we can to bring that dyad back together, be together because we know how important that relationship is for growth and for well-being, not only when we’re with us, but for the rest of the family and the baby’s lives.
Vicki Mansfield (06:34):
What stands out for me there is that often when we think of a neonatal intensive care unit, we probably are thinking of all of the physical aspects. So hearing about the importance of relationship and the importance of supporting relationship is maybe something that doesn’t always come to our practitioners’ minds, but it’s something that’s really as important as physical health by the sounds of it.
Dr Natalie Duffy (07:00):
Yeah, absolutely. I think our clinical skills keep babies alive, the technology, everything that we’re doing, everything that we learn in medical school and the anatomy and the physiology, et cetera, but our relational skills, they help to build futures and they help the families come together. And that’s what we want families to have been together through a time of struggle, but we’ve supported them to go out stronger, happier, healthier, and connected.
(07:29):
So it’s a balance, and we can’t separate. We are looking after this one thing because development, as we all know, it’s all happening at once. So our physical health impacts on our emotional and relational health and vice versa. So we really need to be aware of that in NICU, and we have to be looking after and nurturing relationships at the same time as we’re looking after all of the different physical complexities that a pre-term baby or a medically vulnerable baby may need.
Vicki Mansfield (08:01):
And I’m curious about the resilience at that time as well because you said that there are vulnerabilities, but are there any themes of resilience that you observe in your work with parents and infants?
Dr Natalie Duffy (08:16):
Yeah, absolutely. Every time you walk through the doors of whichever NICU you may be in, you are struck by, yes, there are a lot of medically vulnerable babies, but there’s just this also a remarkable sense of caring and of strength and of resilience. And we see the resilience not only in the babies, but also in their parents. So if we think about the baby first and foremost, they’re kind of thrown into this world. They weren’t prepared for it. They weren’t ready for it. Their lungs may be immature, their nervous systems are maybe dysregulated by the environment, and their development is interrupted or disrupted.
(08:57):
But babies are incredibly adaptable and they adapt to this environment. Their brain is able to grow, it’s able to rewire and connect to support their growth and development. And even in times of injury, the brain has incredible reserves of strength. So we think about every moment of connection, every skin-to-skin time that the baby may have. That kind of power of connection is helping a baby to stabilise, to regulate, and to thrive. And then we talked a little bit about parental mental health. So the parents are also thrust into this experience, an experience of grief, sadness, perhaps even fear, and they’re having to show up every day to this world that doesn’t make sense to them. And they’re having to learn to be parents in a place that they never expected to be. So they’re incredibly brave also.
(09:55):
They’re learning a new language, so the medical language so that they can advocate for their babies. They are perhaps holding, singing, reading books against the backdrop of all of our machines. Moms are expressing breast milk and doing that with such love and devotion. And their bravery and their resilience is just quite incredible to see. And we probably don’t talk about it enough just about how, it’s not loud, and I suppose it’s not flashy, but their bravery and their devotion is just so incredibly important. And us, as health professionals, have to harness that. We have to support it. We have to nurture them. We have to tell them just how incredible a job they’re doing and how important they are in the life of their baby so that everybody is healing together, growing, and thriving.
Vicki Mansfield (10:45):
So really acknowledging and validating how much they’re drawing on their own reserves to show up moment to moment, day to day, yeah.
Dr Natalie Duffy (10:54):
Showing up when probably there’s days where they just don’t feel like doing it. But the admiration I have for the families that we look after, because they dig deep, they do it, they come every day, they sit by the incubator for hours. And I think everything that we can do as a system, the doctors, the nurses, all the allied health professionals to help them to keep showing up because it’s important for them and it’s incredibly important for the babies.
Vicki Mansfield (11:22):
I’m wondering if you can explain in family-centred care and how that approach of family-centred care supports parents and the infant within a NICU.
Dr Natalie Duffy (11:33):
I think that family-centred care is one of the most transformative approaches that we have in neonatal medicine today. It shifts us from a place of a clinical setting to an environment of collaboration and nurture. We partner with families, we partner with the parents. We repeatedly tell them how important they are, and we don’t want them to ever feel like bystanders in their child’s care. We want them to feel like equal partners.
(12:07):
We want to foster an environment where they feel safe because if they feel safe, the baby feels safe, the parent and the infant are then able to come together, and then that is really protective for everybody’s well-being, baby and family, and actually also for the staff. The literature tells us that if we collaborate with families, we create these nurturing, healing environments, everybody’s mental health benefits, and it takes away some of the stress and the strain of the job that I do. It’s a privilege to do my job, but I’m sure everybody can understand that it’s hard.
Vicki Mansfield (12:44):
When you’re talking about that being a collaboration and the importance of collaborating and walking alongside families, what would that look like?
Dr Natalie Duffy (12:54):
I think if we’re walking beside the families, I think if we take a step back from that, the first thing is about the baby. So you’re completely right that the hospital systems, we talk about patient-centred care and patient-focused care, but in our world, we have to probably go one step further than that, and we have to because our patients communicate in a different way to the majority of everybody else’s parents.
(13:23):
Our babies don’t use words, but that doesn’t mean they can’t communicate. So they communicate with us through their behaviours, and it’s our responsibility to attune to those behaviours, slow down, understand them, and connect with the baby so that we know that we’re being truly infant-centred or patient-focused. Once you connect with the baby, you realise, they need that person, don’t they?
(13:47):
They need their primary caregiver or their parent to help them to heal, but also to help them to grow and develop. So then it’s about relationships with parents also. So there’s this kind of triad of, “I’m working with the baby, but I’m also working with the parent.” And then I love it when baby and parent come together. And that’s what we’re trying to do every day in NICU, is to use relationships for the power of healing, for the power of growth, and to help everybody get out of NICU that little bit more connected and that bit stronger.
Vicki Mansfield (14:18):
So as the practitioner, you are holding both baby and parent and fostering that relationship.
Dr Natalie Duffy (14:24):
Holding both their experiences in mind and helping in any way we can to bring them together, always, I think, trying to act with that exact question, “What can I do right now in this moment to make this experience better for you and better for your parent?”
Vicki Mansfield (14:41):
Which sounds so powerful and important. And I have heard a little bit about your PhD in the past, so I’m super excited to share with our audience because you’ve undertaken your PhD into the lived experience of the infant in the neonatal intensive care unit. Can you explain to us why and tell us a little bit about that?
Dr Natalie Duffy (15:06):
Yeah, I’d be delighted to talk about my PhD. It’s called the experience study, so exploring the early lived experiences of infants in neonatal intensive care. It’s a labour of love. I’m nearly there and I’m at this exciting point of the journey where now we’re going to take all of this rich data that we’ve collected. But I suppose if I go back to the beginning, it all started when my career as a early or a fellow in neonatal intensive care where I intersected with the infant mental health team. So I had the privilege of working in a hospital where the infant mental health team would come and visit the babies and visit their families, and they were very welcoming and allowed me to join in their ward rounds. And I saw how they approached the baby and their family with a slightly different lens.
(15:56):
They talked about the baby’s individuality, their strengths, their capabilities. And although they saw the vulnerabilities in the babies, they talked about them as caregiving needs in a strength-based way. And I suppose at that time, I was really concentrating on being the best medical neonatologist that I could be. And what that means is that sometimes a pathology-driven lens kind of comes over amongst the acuity and the complexity of NICU. And those principles of infant mental health are almost, not put to the side, but they don’t maybe get the exact attention that they really, really deserve. So it got me thinking and wondering, “We have all these models of care and we talk about family-centred care, but in amongst all of those models, where is the baby’s voice?” And the infant mental health team taught me that babies have a voice, not words, they use their behaviours, their cues, their states of alertness to communicate what they’re thinking and feeling.
(16:56):
So I kind of had an idea of, “Well, why don’t we just ask them? Why don’t we trust in their voice, trust in their language, and see what it’s like to be the patient in ICU because then maybe we’ll understand it on a deeper level and we’ll be able to come up with practical approaches as to how we can help improve the care that we deliver every day?” So that’s where the experience study came from. And it’s been an incredible journey, and I’m so honoured to have shared in the experiences of the babies, and I am very privileged to have had the opportunity to open a whole other world to neonatal medicine. In terms of the practicalities, do you want me to talk about what I actually did?
Vicki Mansfield (17:39):
How are you capturing their voice? As you said, not words, but they’re communicating with their behaviour and their states?
Dr Natalie Duffy (17:45):
Yeah, sure. My research is all qualitative, and we used a research paradigm called phenomenology, which focuses on a person’s lived experience. So it thinks about how and what was experienced by a person privileging their experience and what they communicate of that experience because they’re the ones that are trying to understand their world. So we applied that paradigm to answer our question of what is it like to be in ICU? So we held the baby’s experience at the centre of everything or the centre of all of the data collection, but we looked at it from as many possible lenses as we could to generate really rich data.
(18:30):
So we start with the babies. We start with me watching the babies, joining in their journey, seeing firsthand every day just by sitting at the bedside and watching, “What is this world like? What does it sound like? What does it feel like? What are your behaviours communicating to me? Who’s interacting with you?” And I just sat and watched and watched the everyday activities and the hustle and bustle of NICU unfold in front of my eyes, but was always internally asking, “What was that just like for you?” For times when I wasn’t there, the babies had a diary where people were able to enter what things had been happening, activities and experiences.
(19:10):
And then I also had the privilege to use the Newborn Behavioural Observation system, so the NBO, which is a relationship-building tool. So I carried out NBOs with the babies, their parents, and myself, and we were able to, through the baby’s behaviours, understand the baby’s individuality and their caregiving needs. And it gave me the opportunity to connect with these babies who were sharing so much with me. And then to triangulate what I had seen and what the babies were telling me, we interviewed all the important adult caregivers in their life. So first and foremost, their parents and then members of their healthcare team, and we sensitively, but specifically asked, “What’s it been like for your baby to be here or your patient, their experience, not the adult’s experience?”
Vicki Mansfield (20:00):
So you’re asking the family and the healthcare professionals to imagine and get a sense of what it’s like for their baby.
Dr Natalie Duffy (20:07):
Yeah, to reflect on the experiences that their baby is having or their patient is having, and have a think, and we did it very sensitively in interview, have a think about what that might have felt like or been like for the baby. Obviously, everybody, the emotions were somewhat intertwined, but we always tried to circle back to the baby’s experience being at the centre.
Vicki Mansfield (20:31):
Thanks, Nat, for sharing with us today such a comprehensive overview of how you centre the infant patient’s needs. In our next episode, we’ll be hearing more specifically about what you’ve discovered about infants.
Narrator (20:47):
Visit our website at emergingminds.com.au to access a range of resources to assist your practise, brought to you by the National Workforce Centre for Child Mental Health, led by Emerging Minds. The Centre is funded by the Australian Government Department of Health and Aged Care under the National Support for Child and Youth Mental Health Program.