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.
"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
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