piatkat

I would like to introduce to you doctor Angela Gregoraci, a Spanish neonatologist, who has just completed a two-month observership in our NICU in Turku, Finland. Our unit here in Turku, is a tertiary center, with single-family rooms and- even more importantly- with families having the possibility to stay with and care for their sick or premature infant throughout the day and night. The objective of this short training was to learn how to facilitate the implementation of family-centered care in dr Gregoraci's unit in Spain. After the internship, she decided to describe her experiences in an essay and I'm grateful she gave me the permission to publish it also here. I hope that this well-thought and beautifully written text will warm your heart on this cold, fall evening. Enjoy the read! KP FROM TARREGA'S MEMORIES OF THE ALHAMBRA TO SIBELIUS' TUONELA SWAN: EXPERIENCE OF A SPANISH NEONATOLOGIST IN TURKU I remember very well the first time I heard about developmental and family-centred care, back in 2010, when I was just a neonatologist in training, looking in awe at the pictures of the Uppsala Unit. I knew then that this was the path I wanted to follow, although at that time it seemed utopian... Years later my boss and mentor, Dr. Perapoch, told me a similar anecdote when in 2003 his colleagues visited a Danish neonatal unit: that visit opened their minds. They were there to learn about CPAP and what they brought back with them was a discovery that had an equal or greater impact on the health of the infants and their families: the kangaroo care and the supportive environment. That was more than a decade ago and I am still walking in that direction, convinced, despite the obstacles, that there is no other possible horizon in modern Neonatology. In 2018, European expert group recommendations defined eight principles for newborn-centred and family-integrated care1 consistent with the European Research Network on Early Developmental Care (European Science Foundation)2. In Spain, there are two Newborn Individualized Developmental Care and Assessment Program (NIDCAP) training centres and seven neonatal units that include NIDCAP-certified professionals. Moreover, several units have started to work on different training programmes for developmental and family-centred care3. A survey examining the eight principles previously published was sent to all Spanish level-III public neonatal units in 2018. Results indicated that none of the Spanish NICUs surveyed had completely implemented the eight principles3. Principles related to the family (parental presence and psychological support) were implemented significantly more often in units with a greater number of very low birth weight (VLBW) infants. Free 24/7 parental access with no limitations is essential for a real infant and family-centred developmental care implementation. In Spain, free parental access was present in 11% of Spanish NICUs in 20064, which increased to 82% in 20125 and 95.4% in 20183. However, although most of the units defined themselves as having an open-access visitation policy for parents, many of them imposed restrictions so that access was not in fact unlimited6,7. Indeed, even if the number of neonatal units with 24/7 access has increased in the last decade, it is not enough. We should still make an effort to remove barriers and promote facilitators to encourage parents' presence and participation during medical procedures or ward rounds. Another unresolved key point, according to the survey findings, was the scarce availability of health care professionals to provide psychological support to parents during and after their infant's admission. Skin-to-skin contact was fulfilled by almost 70% of the NICUs3. I came to Turku determined to find a way to overcome these barriers, not knowing that what I would find would be the closest thing to l'isola che non c'é, by the Italian singer E.Bennato. It was as if I had returned to the future and found myself looking through the eyehole of the door at what I would like to be my NICU ten years from now at the latest. I was convinced that in order to achieve real and sustainable change in care, the intervention should aim to change the attitudes and beliefs of each professional who work with newborns and their families rather than aiming to change single care practices of the unit. Empowering professionals to empower families, that was the challenge. And here in Turku, they had achieved it, it was not a utopia! Sometimes it is enough to change the direction of your gaze to see more clearly, said the French writer Saint-Exupéry. It was as easy as looking for the pole star, guided by the Chariot, as Ulysses tried to do on his return journey to Ithaca, or where the moss grows, or where the compass tells you... north. During these two months in the NICU of the Turku University Hospital, I have had the opportunity to see with my own eyes the revolutionary power of critical training based fundamentally on practice and reflection to bring about change. Nine years after the group led by Sari Ahlqvist-Björkroth, Zack Boukydis, Anna Axelin, and Liisa Lehtonen successfully implemented and extended their training Close Collaboration with Parents Programme, the "revolutionary" idea that parents are the main facilitators of the proper development of their baby, whether healthy or sick or born prematurely, had become indisputable and inherent in the mindset of both professionals and families in this Finnish unit. I spoke with nurses, with paediatricians, with families, I observed the babies admitted there, and all of them transmitted me unequivocally the same mantra: the participation of families is indispensable in neonatal care, a critical stage of life for both newborns and parents. How to achieve this is perhaps the next biggest challenge and it is clear that Finland is one of the countries with the most supportive and enviable social policies to do so, but it is not the only thing that is needed. Teamwork, good communication, active listening, and respect for diversity and otherness among professionals and between professionals and families are essential. One of the biggest lessons I learned from humanitarian work is that the necessary ingredients for a successful action are: humility, respect, and collaborative work. Without asking beneficiaries about their real needs and capacities, without empowering the development of their skills and making them active subjects of intervention and care, aid will never be sustainable over time. As the indigenous activist and artist Lila Watson said: "If you have come here to help me, you are wasting your time. But if you come here because your liberation is bound up with mine, then let us work together". Moving from a care model centred on the professional who relates to the patient in a vertical way, seeing and treating them as vulnerable and lacking in decision-making capacity or autonomy, to a model centred on the patient (and family in the case of neonatal care) endowed with capacities and skills, who relates to the professional in a horizontal and collaborative way, is possible and imperative for all of us to enjoy greater physical and mental health. And Turku is a clear example that it is possible. In my personal journey to Ithaca I have been accompanied by extraordinary people: the nurses and Sanna and Helena, with whom I had the opportunity to get to know their training programme in depth, carrying out the individual practice sessions as bedside practice, and sharing their experience as trainer-mentors from the difficult beginnings in their own unit to their current challenge to continue extending to more Finnish and European units; the psychologist Sari, one of the promoters of the programme, with whom I shared knowledge and exercised the incredible and exciting art of critical reflection in a relaxed and, at the same time, professional atmosphere; the families of N. , S., J., O., who allowed me to enter and stir emotions, memories and thoughts at such a critical and difficult time in their lives, and who confirmed to me that parents also have a voice that wants to be heard, because we need them to take better care of their babies and they need us to be able to feel and act as parents. And finally my two bosses, the one over there (Josep Perapoch) and the one over here (Liisa Lehtonen) who gave me the chance to enjoy this experience in my own way and whom I deeply admire for their tenacity and love for Neonatology in general and for families and their babies in particular. All these people have facilitated (and I am sure that they will continue to do so with their example and support) my particular process of gestation as a neonatologist, woman, and mother, as well as that of all neonatologists, fathers, and mothers of the present and future, because utopia is not far away, as Galeano said, but is ever closer. Kiitos "In dark times we are helped by those who have been able to walk in the night, showing us that the obstacle does not prevent history. Only those who are capable of embodying utopia will be fit for the decisive combat, that of recovering what humanity we have lost" (Ernesto Sabato) Angela Gregoraci, Neonatologist Hospital Dr. Josep Trueta, Girona, Spain References: 1-Roué J-M, Khun P, Lopez-Maestro M,et al. Eight principles for patient-centred and family-centred care for newborns in the neonatal intensive care unit. Arch Dis Child Fetal Neonatal Ed. 2017;102(4):F364-F368 2-Research on Early Developmental Care for Extremely Premature Babies in Neonatal Intensive Care (EDC). Secondary research on early care for extremely premature babies in neonatal intensive care units (EDC). http://www.esf.org/index.php?xml:id=1514. Accessed October 10,2019 3- López-Maestro M, De la Cruz J, Perapoch López J, et al. Eight principles for newborn care in neonatal units: Findings from a national survey. Acta Paediatr.2020;109:1361-1368 4- Perapoch López J, pallás Alonso CR, Linde Sillo MA, et al. Developmental centred care. Evaluation of spanish neonatal units. An Pediatr (Barc).2006;64:132-139 5- López-Maestro M, Melgar Bonis A, de la Cruz-Bertolo J, Perapoch López J, Mosqueda Peña R, Pallás Alonso C. Developmental centred care. Situation in Spanish neonatal units. An Pediatr (Barc).2014;81:232-240 6- Raiskila S, Axelin A, Toome L, et al. Parents' presence and parent-infant closeness in 11 neonatal intensive care units in six European countries vary between and within the countries. Acta Paediatr.2017;106:878-888 7- Greisen G, Mirante N, Haumont D, et al. Parents, siblings and grandparents in the neonatal intensive care unit. A survey of policies in eight European countries. Acta Paediatr.2009;98:1744-1750

Recently I've participated in a small scientific meeting with the neonatal team from Uppsala, Sweden, and from what I understand they are trying to involve parents in a more meaningful way to care for their infants during therapeutic hypothermia. I know that so far they have published this qualitative study https://onlinelibrary.wiley.com/doi/10.1111/apa.15431 and a bit earlier this study https://pubmed.ncbi.nlm.nih.gov/31084824/ :"Being unable to hold the infant skin-to-skin during HT has been shown to be stressful [10], and although skin-to-skin contact has to be limited due to thermoregulatory constraints, infant holding is indeed feasible [23]." I hope this gives you some fresh perspective I have no idea if we have anybody from Uppsala here, @Stefan Johanssondo you maybe know?

@Stefan Johanssonshal we make a folder "Podcasts" in our Links directory?

Hi Tarek, I wish I had the knowledge and the experience to dispel your doubts here, but I can offer only a bit of text, sorry!😅 In the metanalysis Sucrose for analgesia in newborn infants undergoing painful procedures the Authors conclude : "Sucrose is effective for reducing procedural pain from single events such as heel lance, venipuncture and intramuscular injection in both preterm and term infants (...). Investigators should be cautious when utilising existing evidence to answer questions on efficacy in other painful procedures that have been minimally addressed to date (e.g. lumbar punctures, peripherally inserted central catheter insertions, endotracheal intubation, chest tube insertions)." So what I understand is that the sucrose (with or without pacifier) can be beneficial for heel lance, venipuncture and intramuscular injection, because when used, it was causing favorable changes in pain scores (I think that the highest quality of evidence comes from studies that used PIPP (premature infant pain profile, includes heart rate assessment, oxygen saturation, facial actions). "There was high‐quality evidence for the beneficial effect of sucrose (24%) with non‐nutritive sucking (pacifier dipped in sucrose) or 0.5 mL of sucrose orally in preterm and term infants: Premature Infant Pain Profile (PIPP) 30 s after heel lance WMD ‐1.70 (95% CI ‐2.13 to ‐1.26; I2 = 0% (no heterogeneity); 3 studies, n = 278); PIPP 60 s after heel lance WMD ‐2.14 (95% CI ‐3.34 to ‐0.94; I2 = 0% (no heterogeneity; 2 studies, n = 164). There was high‐quality evidence for the use of 2 mL 24% sucrose prior to venipuncture: PIPP during venipuncture WMD ‐2.79 (95% CI ‐3.76 to ‐1.83; I2 = 0% (no heterogeneity; 2 groups in 1 study, n = 213); and intramuscular injections: PIPP during intramuscular injection WMD ‐1.05 (95% CI ‐1.98 to ‐0.12; I2 = 0% (2 groups in 1 study, n = 232)." The question is- does the improvement in pain scores actually mean less painful stimuli for the brain. Or maybe what happens is that the baby just gets calmer, but the painful stimuli still harms the brain? Maybe some SENIOR physician could pitch in and let us know what is their practice When do you use sucrose and when you prefer to go with a painkiller? SO MANY QUESTIONS!

@Francesco Cardona and @Sutirtha Roy thanks!!! The number of people quoting yesterday the Cochrane metanalysis to me was TOO damn high! I get it, it is a high level of evidence, but these studies were (all or mostly all) looking at pain score scales! And somebody very wise once told me "If we have several scales to asses the same thing, it means that none of them is actually very good" 😅 I don't want to fight with windmills there, but I am going to just post this video and hoping I won't get assassinated in the comments section 😂

Great comment @bimalc! I have discussed this topic also with one of my very experienced coworkers. Since our hospital trains also pediatric trainees that then leave to work in rural areas, she was strongly leaning towards intubation being a mandatory competency. She motivated her point of view saying that somewhere up in the North there might be nobody else to perform the intubation, so the trainee has to be able to intubate. But then I asked, "is intubation the goal, or securing the airways?". I think we need a shift in thinking- intubation is not the only way to secure the airways. Saying that I know that not many colleagues in the unit have had experience with LMA (basically only those who have had some experience in the surgery dept.). We would need to change the way we think and we teach-but it might be that currently the teachers might not have enough experience with the LMA to act as confident instructors. Many things to consider!

Hi, I'm digging up this topic- yesterday I got myself into a conversation with some colleagues about soothing pain in neonates with glucose gel. Of course it's a widely spread method, and I am not questioning this practice here with this post. I remembered however some article claiming that although glucose was soothing the symptoms of pain, in the end it did not mitigate the brain alterations that happened in the brain during painful stimulis ( I think this was the article https://journals.lww.com/pain/Abstract/2018/03000/Procedural_pain_and_oral_glucose_in_preterm.14.aspx). Have you encountered more studies supporting this? I am wondering if this was the article I had read, because vaguely I remember the authors concluding that glucose is nice, but avoiding painful stimuli is even nicer. Or maybe it was all in my head 🤔

Great resources, thanks Vicky!!!

I think I found an interesting study about antepartum and intrapartum risk factors of neonatal encephalopathy. A bit old, but I think still very relevant when discussing the causes of hypoxic ischemic injury with parents! https://www.bmj.com/content/317/7172/1554.long https://www.bmj.com/content/317/7172/1549.long

Ooooh! Cool, thanks!!!

Hi, I would like to learn more about hypoxic-ischemic encephalopathy (HIE), can you recommend your favorite articles in the topic? I can totally read some reviews, or also original research papers if you think they are well written and relevant animal studies can also be interesting! Thanks!

@M C Fadous KhalifeWhat about the paper itself? How do you evaluate the evidence there?

@Vicky Payne- this is a really good question. It has reminded me of a blog entry I "committed" some time ago- not about intubation in presence of family, but about intubation on parent's chest 🔥🔥🔥 link is here below ⬇️⬇️ Of course, the level of evidence is anecdotal, but it's just a reminder for me that the impact on parents could be related to their very unique situation in the Unit. Are they only infrequent visitors there, or maybe primary caretakers? I think that might change their perspective a lot!