Complications Clinical Trial
Official title:
Prenatal Counseling in Extreme Prematurity: Parents' View
This study is part of the PreCo study, evaluating Dutch care in (imminent) extreme preterm
birth including current and preferred counseling, barriers and facilitators for preferred
counseling from both obstetricians and neonatologists, as well as parents' views on this.
Since 2010, intensive care can be offered in the Netherlands at 24+0 weeks gestation (with
parental consent) but as some international guidelines, the Dutch guideline lacks detailed
recommendations on organization, content and preferred decision-making of the counselling.
The anticipated delivery of an infant at the limits of viability presents parents and
professionals with medical, ethical and emotional issues; especially when a decision on the
initiation of care has to be made. Since the first publication in 2002 by the American
Academy of Pediatrics several (albeit different) guidelines and recommendations on
periviability counseling have been published. However, there is no universally accepted way
of performing prenatal counseling and, consequently, studies describe heterogeneous
counseling practices worldwide.
Some guidelines on resuscitation at the limits of viability include recommendations on the
parental involvement in the decision-making. Nevertheless, the extent of involvement and the
gestational age (GA) at which parents should be involved varies. In 2010, the Dutch
guideline on perinatal practice in extremely premature delivery lowered the limit offering
intensive care from 25+0 to 24+0 weeks GA. Just as some international guidelines include a
role for parents at the limits of viability, the Dutch guideline states that at 24 weeks GA
informed consent of parents is required when initiating intensive care28. Although the
guideline acknowledges the importance of prenatal counseling, recommendations on
organization, content or decision-making of the counseling are very limited.
Although recommendations on counseling do exist, they may not be generally applicable in the
Netherlands since cross-cultural differences in perinatal practices, healthcare
organization, and physician and patient views are likely to exist. To compose a national
framework on prenatal counseling at the limits of viability, the nationwide PreCo study
(Prenatal Counseling in Prematurity) was designed, examining both professional and parental
views. High quality of care originates when no differences exist between preferred and
current counseling with uniformity between the involved caregivers (obstetricians and
neonatologists) and specified to the needs of those receiving counseling, being the parents
The PreCo study amongst parents has three major aims
1. to find initial preferences among Dutch experienced parents on prenatal counseling at
the limits of viability (quantitatively)
2. to evaluate decision-making among Dutch experienced parents at the limits of viability
(quantitatively)
3. to perform in-depth exploration of counseling preferences amongst Dutch parents
(qualitatively)
;
Observational Model: Cohort, Time Perspective: Cross-Sectional
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