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The “Grey Zone” in Hungary – How can the European Standards of Care for Newborn Health (ESCNH) help to move neonatal care in Hungary forward?

2022-12-14

Conference report by Lívia Nagy Bonnard, founding member of “Melletted a helyem Egyesület” – “Right(s) Beside You Association” in English – and a member of the Parent, Patient and Public Advisory Board of the ESCNH as well as a member of the Parent Advisory Board of EFCNI.   ——–   Delivery room: “Hello doctor! A woman, 22+6 weeks pregnant, arrived in the delivery room with regular contractions and a dribbling amniotic fluid. What should we do? Should we start tocolysis? Start her on antibiotics? Do we start steroid prophylaxis? Please come down, the obstetrician is waiting!”  Doctor: “I’m coming, I’m in a hurry…”  Do we really know what is needed in Hungary today to properly care for an unborn 23-week-old premature baby? Do we have the right equipment? Do we have enough nursing staff that is also well-trained to receive such a baby? What should the obstetrician communicate and what should the neonatologist’s position be? How do we involve the parent in the decision-making? Where is the intersection between medical decisions, ethics, and law? How do we manage the experience of loss for parents and carers? What happens to such a child when he or she survives and grows up? What will happen to his or her family?   © Livia Nagy Bonnard   During a conference on the topic of the “Grey Zone”, our invited speakers tried to answer these questions and encouraged participants to think together during the conference, which took place on 15 October 2022, the World Day of Perinatal Bereavement, in Kecskemét, Hungary. The conference was organised by the Hungarian Society of Neonatology and “Melletted a helyem Egyesület” (“Right(s) Beside You”), Hungarian patient association. The “grey zone” was defined as a situation in which medical evidence is so ambiguous that healthcare professionals do not have clear guidance on what kind of treatment would be the best option for the patient. The concept also considers the often-complex relationships between various members of the medical staff, parents, and the patients themselves which underwrite an already challenging decision-making process. The conference presentations were logically linked to each other and covered all areas of the “Grey Zone”, understanding the situation of the obstetrician, neonatologist, and intensive care nurse in the given situation, but also included the perspectives of a psychologist dealing with grief and a lawyer covering questions of medical ethics. Together, the presenters worked towards an approach to handle instances of the “Grey Zone” in hospital settings in Hungary when preterm births are concerned. In the final part of the conference, during the roundtable discussion, participants reflected on the stories of parents who have been involved in the issue and touched on all aspects of the “Grey Zone”. Participants agreed that the situation requires a solution and suggested the development of a national guideline on how to handle the “Grey Zone” in Hungarian hospitals. The “European Standards of Care for Newborn Health” could provide a good framework for this undertaking. © Livia Nagy Bonnard © Livia Nagy Bonnard

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Welcome to our newest experts – great to have you!

2022-12-12

We are happy to share that the European Standards of Care for Newborn Health (ESCNH) have three new Chair Committee members: Dr Britta Hüning, from Germany, is the new co-chair for the Topic Expert Group (TEG) Follow-up and continuing care. Foteini Andritsou, from the United Kingdom, is the new co-chair for the TEG Care procedures. Assoc. Professor Anna Axelin, from Finland, is the new co-chair for the TEG Infant- and family-centred developmental care. Our new Chair Committee members are renowned experts in their fields, meaning that the ESCNH as a whole stand to benefit from their skills and knowledge. We are sure that our newest additions to the Chair Committee will enrich the conversations about how to improve neonatal care in Europe with their insights and expertise.   © Pixabay / Pexels   At the same time, sincere thanks go out to our former chairs, Dr Aleid Leemhuis (former co-chair for the TEG Follow-up and continuing care), Odile Frauenfelder (former co-chair for the TEG Care procedures), and Dr Björn Westrup (former co-chair for the TEG Infant- and family-centred developmental care). Their dedication and hard work in the previous years shaped the ESCNH in lasting ways. They also helped significantly in advancing new approaches to neonatal care across Europe.   © This is Zun / Pexels   Besides changes in the Chair Committee, we are excited to announce that the Parent, Patient and Public Advisory Board (PPPAB) was newly elected as well. It consists of the following members: Mandy Daly, Stephanie Ernst, Paula Guerra, Vilni Verner Holst Bloch, Gigi Khonyongwa-Fernandez, Livia Nagy Bonnard, İlknur Okay, and Dr Eleni Vavouraki. The PPPAB represents the voices of patients, affected parents, and the general public, and ensures that their needs and interests are considered at all times in the making and shaping of the ESCNH.   We thank our former members of the PPPAB for being such tireless advocates on behalf of families everywhere: Dr Tomasz Makaruk (Poland), Dr Gert van Steenbrugge (the Netherlands), Yannic Verhaest (Belgium), and Mónica Virchez (Spain).   For more information about who steers the ESCNH, please visit our Chair Committee page.

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First digital implementation workshop of the European Standards of Care for Newborn Health: Exchange of Italian and Portuguese partners

2022-11-14

This November, the first digital implementation workshop of the European Standards of Care for Newborn Health (ESCNH) took place with two of our best practice countries Italy and Portugal, which have made extraordinary efforts to implement the ESCNH in their country such as translating the entire set of standards, in the case of Italy (for more information regarding the translation please read our news article). The aim of the workshop was first and foremost to create an international and interdisciplinary platform for exchanging experiences in order to learn from one another and to reflect on and strengthen the national implementation strategies. Both countries were represented by their national neonatology associations, NIDCAP representatives, and nurse associations as well as national parent organisations. In total, 24 individuals including three representatives from EFCNI took part in the interdisciplinary workshop. © EFCNI Content of the workshop: After a first introductory round, the Italian implementation Task Force of the ESCNH (for more information regarding the Task Force please see our guest article) represented by Dr Gina Ancora (SIN, NIDCAP Rimini) shared their past and upcoming implementation activities. This presentation was followed by the Portuguese working group represented by Estela Coutinho (XXS), Paula Guerra (XXS), Lídia Videira (APEPEN), Dr Gabriela Mimosa (SPN), Dr Rosalina Barroso (SPN) and Dr Carmen Carvalho (SPN), who presented the Portuguese approach. The exchange of the national implementation strategies was subsequently intensified in a breakout session where expected challenges and lessons learnt from previous activities were discussed in smaller groups lead by Silke Mader (EFCNI) and Professor Luc Zimmermann (EFCNI) before sharing the overall results of the sessions with the entire group. As host of the workshop, Silke Mader gave insights during the virtual gathering into best practice examples and implementation activities from Dr Carmen Pallas Alonso, Head of neonatal unit at University Hospital 12 October, Asta Speicyte Radzeviciene, CEO of Neišnešiotukas – the Lithuanian parent organisation and Vilni Verner Holst Bloch, Board member of Prematurforeningen – Norwegian parent organisation. Up next was an introduction to change management models and selected activities to implement change by Isabel Geiger, the coordinator of the ESCNH and Senior Project Manager at EFCNI. Last but not least, EFCNI’s plans for an implementation manual were shared and the content of the manual was discussed with the workshop participants. Overall, the workshop can be seen as a great success and we warmly thank all parties involved for their vivid discussions and active participation – we are already looking forward to our follow-up meeting next year.   Upcoming workshops in 2023 If you are interested in participating in our next digital implementation workshop, please send us an email at standards@efcni.org.

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