End-of-Life Decision Making for Parents of Extremely Preterm Infants

Hendriks, Manya J.; Abraham, Andrea (2017). End-of-Life Decision Making for Parents of Extremely Preterm Infants Journal of obstetric, gynecologic, and neonatal nursing, 46(5), pp. 727-736. Elsevier 10.1016/j.jogn.2017.06.006

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OBJECTIVE To explore parental attitudes and values in the end-of-life decision-making process of extremely preterm infants (gestational age~\textless 28~weeks). DESIGN Hermeneutically oriented qualitative research design with in-depth interviews. SETTING Level III NICU in Switzerland. PARTICIPANTS Purposive sample of seven couples, five mothers, and one father (20 parents). METHODS Qualitative content analysis was used to categorize and interpret themes from parents' narratives. RESULTS Parents described factors that affected the decision-making process in satisfactory or unsatisfactory ways. Transparent information, empathy, and honesty enhanced communication between parents and the health care team. Lack of transparent information and continuous support decreased satisfaction. The level of involvement in decisions differed by setting. Most parents made decisions regarding lung maturation and/or initiation of care in the delivery room. Parent participation in the NICU was experienced differently. Contrary to the hospital's ethical model, few parents recalled being involved in the decision-making process. Some parents experienced a dissociative state of mind that hindered their involvement, whereas others felt actively involved. CONCLUSIONS Our results suggest the need for careful and continuous professional evaluation of parents' wishes about involvement in the decision-making process, along with descriptions of medical facts and treatment options. A lack of attentive listening and dialogue may cause paternalistic decision trajectories.

Item Type:

Journal Article (Original Article)


School of Social Work > Social Intervention focus area
School of Social Work


Hendriks, Manya J. and
Abraham, Andrea0000-0003-3116-465X


H Social Sciences > H Social Sciences (General)








Andrea Abraham

Date Deposited:

25 Nov 2020 14:38

Last Modified:

01 Dec 2022 21:46

Publisher DOI:






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