Parental visiting, communication, and participation in ethical decisions: a comparison of neonatal unit policies in Europe

M Cuttini; M Rebagliato; P Bortoli; G Hansen; R de Leeuw; S Lenoir; J Persson; M Reid; M Schroell; U de Vonderweid; M Kaminski; H Lenard; M Orzalesi; R Saracci

doi:10.1136/fn.81.2.F84

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Parental visiting, communication, and participation in ethical decisions: a comparison of neonatal unit policies in Europe

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Re: Parental participation in decision making
Marina Cuttini
Published on: 22 March 2016
Parental participation in decision making
HD Dellagrammaticus
Published on: 22 March 2016

Published on: 22 March 2016
Re: Parental participation in decision making
- Marina Cuttini, pediatrician
Dear Editor,
The rapid response from Dellagrammaticus and Iacovidou (17 May) provides interesting information and further support to the conclusion of our study (1): namely, that NICUs from Southern European countries (Italy, Spain and, according to Dellagrammaticus, also Greece) adopt parental visiting policies more restrictive than in Northern countries.
We agree that exploring the role of parents in deci...
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Dear Editor,
The rapid response from Dellagrammaticus and Iacovidou (17 May) provides interesting information and further support to the conclusion of our study (1): namely, that NICUs from Southern European countries (Italy, Spain and, according to Dellagrammaticus, also Greece) adopt parental visiting policies more restrictive than in Northern countries.
We agree that exploring the role of parents in decision-making is much more complex, and that data collected through a structured questionnaire completed by the unit coordinator represent only that unit's policy, "that is the intention and stance of each unit" towards the issue at hand. In fact, this was precisely the aim of our study: to describe and compare NICUs' policies in the various countries.
In a separate part of the EURONIC project we interviewed also individual staff members (both doctors and nurses), asking for their views and practices regarding parental involvement in decision-making: overall, results match quite closely with findings from the NICUs policy study.
It would be certainly very interesting to obtain the parents' views on the issue; however, results from interviews with parents carried out by Unit's staff during a baby's hospital stay should be interpreted with caution, given the understandable tendency of interviewed parents to comply with perceived wishes and ideas of the staff caring for their baby.
References
(1) Cuttini et al. Parental visiting, communication and participation in ethical decisions: a comparison of neonatal unit policies in Europe. Arch Dis Child Fetal Neonatal Ed 1999;81:F84-91
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Conflict of Interest:
None declared.
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Published on: 22 March 2016
Parental participation in decision making
- HD Dellagrammaticus
Editor,
We read with interest the paper by Cuttini et al (1). Although policy regarding parental visiting is a relatively easier issue to evaluate, parental participation in decision making, particularly in decisions with strong ethical overtones, is a much more complex issue. It is difficult to evaluate with accuracy with accuracy and by its nature much more controversial. The paper does not stress that data col...
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Editor,
We read with interest the paper by Cuttini et al (1). Although policy regarding parental visiting is a relatively easier issue to evaluate, parental participation in decision making, particularly in decisions with strong ethical overtones, is a much more complex issue. It is difficult to evaluate with accuracy with accuracy and by its nature much more controversial. The paper does not stress that data collected from each participating unit through a structured questionnaire completed by the unit co- ordinator, represent policies, that is the intention and stance of each unit towards the particular issue for evaluation. Data collected through questionnaires and interviews involving both unit staff and parents would have provided a better understanding of the actual practice of each participating unit.
No unit from Greece took part in the study by Cuttini et al (1) but Greece is briefly mentioned in the discussion, using results from a previous study (2) where in a sample of 38 units from 11 European countries it was shown that the 9 units imposing visiting restrictions were in France, Greece, Italy and Portugal.
We would like to provide further information regarding visiting policies in Greek NICUs. There are 15, two of which are private; twelve attached to maternity hospitals and the remaining three are in children's hospitals and accept distant referrals. In all but one (Aglaia Kyriakou Children's Hospital) visiting restrictions are imposed. These allow parents only and the usual practice is ½ -1 hour visiting time in the morning and afternoon (excepting lactating mothers). The most common reasons given for imposing restrictions are an increased danger of infection and a disruptive effect on the unit.
We conducted a survey through a questionnaire and an interview of parents whose baby has been cared for in another NICU imposing visiting restrictions before transfer to our NICU and / or parents who had a previous baby in another NICU imposing restrictions. The overwhelming majority (98.6%) said they preferred the liberal policy we have adopted with respect to visiting. One mother of preterm baby with bronchopulmonary dysplasia said that 'if I had delivered at term I would be with my baby, if I had not delivered prematurely I would also be with my baby (in my womb), now that I have delivered prematurely why can't I be with my baby?
We conclude that in Greece there is a demand for unrestricted parental visiting but most Greek NICUs do not meet this demand for reasons which are not based on medical or sociological evidence.
It is worth noting that, in Greece, infants beyond the neonatal period have been admitted to children's wards with their mothers for many years.
Dr H D Dellagrammaticas MD, FRCPCH
Dr Nicoletta Iacovidou MD
NICU, 2nd Department of Paediatrics
University of Athens
Aglaia Kyriakou Children's Hospital
115 27 Athens, Greece
References
1. Cuttini M, Rebagliato M, Bortoli P, et al. Parental visiting, communication and participation in ethical decisions: a comparison of neonatal unit policies in Europe. Arch Dis Child Fetal Neonatal Ed 1999;81:F84 - F91
2. Reid M, Andersen E, EC Study Group of Parental Involvement in Neonatal Care (Adam H, Cuttini M et al). Variations in family visiting policies in neonatal intensive care units in eleven EC countries. Pediatr Perinat Epidemiol 1994;8:41 - 52
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Conflict of Interest:
None declared.
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