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[Parents' experiences with life-and-death decisions concerning their premature infants]
Berit Støre Brinchmann1, Reidun Førde, Per Nortvedt
1Senter for medisinsk etikk Universitetet i Oslo Postboks 1130 Blindern 0318 Oslo. berit.stoere.brinchmann@hibo.no
Insights
Parents of premature infants in neonatal units often feel overwhelmed by life-and-death decisions. They prefer healthcare professionals to lead, valuing clear communication and being taken seriously over making the final choice.
Area of Science:
- Neonatal care
- Pediatric ethics
- Parental decision-making
Background:
- Focuses on parents' experiences with life-and-death decisions for premature infants in neonatal units.
- Investigates parental attitudes toward involvement in these critical decisions.
Purpose of the Study:
- To explore parental perspectives on decision-making in neonatal intensive care.
- To understand the psychological impact of life-and-death choices on parents of premature infants.
Main Methods:
- Utilized qualitative comparative methods, specifically grounded theory.
- Conducted 20 qualitative interviews with 35 parents of 26 infants between 1997-2000.
- Analysis occurred concurrently with data collection.
Main Results:
- Parents experience significant mental pressure, leading to ambivalence and a desire to avoid ultimate responsibility.
- Most parents do not desire the final say in life-or-death decisions for their infant.
- While avoiding the final decision, parents strongly wish to be informed and have their input seriously considered.
Conclusions:
- Parents prioritize effective communication and information from healthcare professionals.
- Parental autonomy and the right to choose are valued less than being informed and respected in the process.
Background:
The study is concerned with parents' experience with life-and-death decisions concerning their premature infants in hospitals neonatal units. What are parents' attitudes towards their being involved in such decision-making?
Material And Methods:
During the 1997-2000 period, 20 qualitative interviews with 35 parents of 26 children were made. A qualitative, comparative method (grounded theory) was used for the analysis, which was carried out in parallel with data collection.
Results:
Parents are exposed to great mental pressure, which may bring about a sense of ambivalence and a wish to avoid responsibility. Most parents do not wish to have the final word in decisions concerning their infant's life or death. Such a responsibility is likely to make parents feel guilty and puts too heavy a burden on the parents, but parents wish to be informed and taken seriously in the decision making-process.
Interpretation:
Parents value health professionals' communication and information more than parent autonomy and right to choose.