Implementation of the Dutch national guideline * perinataal beleid bij extreme vroeggeboorte* (perinatal practice in extremely premature delivery) : the importance of Prenatal Counseling
Substudy: Needs and preferences for prenatal counseling from experienced parents

In the recently updated Dutch national guideline *perinataal beleid bij extreme
vroeggeboorte* (perinatal practice in extremely premature delivery), the
gestational age (GA) at which resuscitation can be offered was lowered from
25+0 weeks to 24+0 weeks. Informed consent of the parents is required for the
decision whether or not to actively resuscitate the infant at 24+0 - 24+6 weeks
GA. This can only be obtained if parents have received adequate prenatal
counseling. The updated national guideline, however, does not provide
healthcare workers with instruments for adequate counseling. Consequently,
great heterogeneity in prenatal counseling exists.

We aim to investigate the current practice of prenatal counseling amongst
parents of extremely premature infants since the introduction of the new
guideline in 2010. We will explore the contents and the practical aspects of
the counseling. Additionally, the decisional conflict and the decisional regret
as experienced by parents will investigated. Furthermore, we aim to explore the
needs and preferences of these parents with regards to ideal counseling.
Finally we aim to develop a structured national multidisciplinary prenatal
counseling guideline based on preferences and needs of both professionals
(separate study) and experienced parents.

Observational study. Current practice among experienced parents (capable
adults) (cohort 01102010-01102013, approximately 150-225 parent couples) will
be evaluated using questionnaires. This survey will address the prenatal
counseling as experienced by the parents. Additionally, decisional conflict and
decisional regret will be explored using the validated questionnaires by
O'Connor and Brehaut respectively. Lastly, the preferences and needs for ideal
counseling based on their experience will be addressed as well.
The questionnaire was presented to the *Vereniging van Ouders van
Couveusekinderen* (Association for parents whose premature babies have been
admitted to the neonatal intensive care unit (NICU)) for evaluation and
adjusted accoridng to their advice.
At the end of the survey, parents will be invited to participate in a
structured interview for in depth exploration of their needs and preferences at
a preferred location. We aim to interview 10 - 20 parent(s). Data collection
will continue until data satisfaction is reached. Ideal counseling tools will
be developed based on information obtained from both experienced parents and
professionals (separate study) and will be tested in a feasibility study
(separate study).

Data analysis: the answers to the questionnaires will be descriptively analyzed
using SPSS. The interviews will be qualitatively analyzed using Atlas TI.
Analysis will be done independently by two researches. Discrepancies will be
resolved by discussion between the authors until consensus is reached.

The survey contains questions that will remind parents of an emotional period
in their lives. The questionnaire might therefore impose a psychological burden
on the participants. Parents are prepared for this burden in the introduction
letter that will be send to them. They can withdraw their participation at any
time. Furthermore, they can contact the researches and the independent doctor
if they wish to do so after filling in the questionnaire.