Parents' Prenatal, Onward, and Postdischarge Experiences in Case of Extreme Prematurity: When to Set the Course for a Trusting Relationship between Parents and Medical Staff

Abstract

Objectives This article aims to investigate the impact of prenatal counseling on subsequent parents' experiences during in-patient care of their infant(s) and whether feelings of parents with deceased infants are different in principle.

Study Design A questionnaire was sent to 99 families with a child born less than 26 weeks' gestational age at Medical School Hanover 2000–2008. Statistical analysis was performed using Fisher exact t test and chi-square tests in IBM SPSS Statistics for Windows, Version 20.0.

Results Response rate was 73%. Parents with solely surviving children significantly more often answered the questionnaire (p < 0.001). Regardless of the infants' outcome, parents who felt well involved in prenatal decision making significantly more often also felt adequately involved in postnatal treatment of their child (p = 0.006) and would again decide on life-sustaining treatment of an extremely premature infant (p = 0.007). Furthermore, they were significantly less dubious about the treatment of their baby (p = 0.013) than parents not feeling sufficiently involved. Significantly fewer parents with only surviving child(ren) decided to have another baby later than parents with at least one deceased child (p = 0.004).

Conclusion This study stresses the impact of prenatal counseling and shows that, regardless of outcome, the course of a trusting relationship between parents and health care team is already set before birth.

Keywords

limit of viability - decision making - life-sustaining treatment - ethics - parents' experiences

^* These authors contributed equally to the study

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