PhD Scientific Days 2023

Health Sciences II.

The Experiences of a Longitudinal Study on Decision Making in Neonatal Care in Hungary

Text of the abstract

Introduction: The parallel increase in survival chances of premature babies with technological advances raises ethical and legal dilemmas in everyday care. The EURONIC (1996/97) and HUNIC (2016/16) studies looked at the opinion and the change of opinion of healthcare workers regarding the involvement of parents in end-of-life decisions and limitations of intensive care in fatally ill newborns in Hungarian Neonatal Intensive Care Units (NICUs).

Aims: Presentation of the two previous studies on parental involvement in end-of-life decision-making and limitation of care. In addition, the presentation of the currently ongoing research based on the previous two studies.

Methods: A comprehensive, quantitative sociological survey with self-completed anonymous questionnaires (N=728) was performed at two different time points in Hungarian NICUs. Data analysis included cross-tabulation analysis, Pearson chi2 test, and multivariate serial logistic regression.

Results: Most of the healthcare workers in NICUs think that it is important to include parents in the decision-making process. It also shows in the answers, that sometimes certain patients are treated too aggressively, which is mainly a concern in tertiary NICUs, as this is mainly an issue these centres face. Answers stating that it might be necessary to set limits of intensive care in some cases, have increased, given both by doctors and health care professionals on these wards. The view that parents are not able to understand these decisions raises the question of the lack of communication between parents and carers.

Conclusion: Preliminary studies suggest that contrary to the current legislation, healthcare workers in NICUs believe that in some cases patients are treated too aggressively and it would be justified to put limitations in place. In addition, the majority believe that parents have a place in the decision-making process. To examine the parent's viewpoint and their mental load, which has not been examined before, there is a study currently running nationwide in Hungary in tertiary NICUs. This study will recognise the social challenges and challenges in communication, and coping mechanisms and limits.