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"We Absolutely Had the Impression That It Was Our Decision"-A Qualitative Study with Parents of Critically Ill
Maria Florentine Beyer1, Katja Kuehlmeyer2, Pezi Mang1
1Division Neonatology, Department of Pediatrics, Dr. von Hauner Children's Hospital, LMU University Hospital, 80337 Munich, Germany.
Insights
Parents do not have a single preference for shared decision making (SDM) in neonatal intensive care. Individualized approaches to medical decision making (MDM) are valued, balancing parental autonomy and protection.
Area of Science:
- Neonatal Intensive Care Medicine
- Medical Ethics
- Parental Decision-Making
Background:
- Guidelines advocate for shared decision making (SDM) between neonatologists and parents regarding life-sustaining treatment (LST).
- Previous research indicated limited SDM in a German Neonatal Intensive Care Unit.
- Parental preferences for the extent of SDM in this context were previously unknown.
Purpose of the Study:
- To explore parental preferences for the extent of shared decision making (SDM) in neonatal end-of-life care.
- To understand parental experiences with varying levels of involvement in medical decision making (MDM).
Main Methods:
- Qualitative interview study with parents previously involved in SDM.
- Semi-structured interviews analyzed using qualitative content analysis (Kuckartz).
Main Results:
- Parental involvement in medical decision making (MDM) varied.
- Most neonatologist-parent dyads engaged in SDM to a limited extent.
- Parents valued their experiences regardless of involvement level; some preferred protection from decisions, while others valued fulfilling parental duties through participation.
Conclusions:
- Parental preferences for decision-making models in neonatal end-of-life care are not uniform.
- Individualized adaptation of SDM to parental needs for autonomy and protection is crucial.
- SDM should be a flexible guidance, not a rigid standard, in neonatal care.
Background:
Guidelines recommend shared decision making (SDM) between neonatologists and parents when a decision has to be made about the continuation of life-sustaining treatment (LST). In a previous study, we found that neonatologists and parents at a German Level-III Neonatal Intensive Care Unit performed SDM to a variable but overall small extent. However, we do not know whether parents in Germany prefer an extent of more or sharing.
Methods:
We performed a qualitative interview study with parents who participated in our first study. We analyzed the semi-structured interviews with qualitative content analysis according to Kuckartz.
Results:
The participation in medical decision making (MDM) varied across cases. Overall, neonatologists and parents conducted SDM in most cases only to a small extent. All parents appreciated their experience independent of how much they were involved in MDM. The parents who experienced a small extent of sharing were glad that they were protected by neonatologists from having to decide, shielding them from a conflict of interest. The parents who experienced a large extent of sharing especially valued that they were able to fulfil their parental duties even if that meant partaking in a decision to forgo LST.
Discussion:
Other studies have also found a variety of possibilities for parents to partake in end-of-life decision making (EOL-DM). Our results suggest that parents do not have a uniform preference for one specific decision-making approach, but rather different parents appreciate their individual experience regardless of the model for DM.
Conclusion:
SDM is apparently not a one-size-fits-all approach. Instead, neonatologists and parents have to adapt the decision-making process to the parents' individual needs and preferences for autonomy and protection. Therefore, SDM should not be prescribed as a uniform standard in medico-ethical guidelines, but rather as a flexible guidance for DM for critically ill patients in neonatology.
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