Barriers and facilitators for parents in end-of-life decision-making for neonates at the Neonatal Intensive Care Unit: A qualitative study

Veerle Piette, Laure Dombrecht, Luc Deliens, Filip Cools, Kenneth Chambaere, Linde Goossens, Gunnar Naulaers, Sabine Laroche, Luc Cornette, Eline Bekaert, Pauline Decoster, Kim Beernaert, Joachim Cohen

Research output: Contribution to journalArticlepeer-review

Abstract

BACKGROUND: Mortality and end-of-life decision-making can occur in newborns, especially within the Neonatal Intensive Care Unit. For parents, participating in end-of-life decision-making is taxing. Knowledge is lacking on what support is helpful to parents during decision-making.

AIM: To identify barriers and facilitators experienced by parents in making an end-of-life decision for their infant.

DESIGN: Qualitative study using face-to-face semi-structured interviews.

SETTING/PARTICIPANTS: We interviewed 23 parents with a child that died after an end-of-life decision at a Neonatal Intensive Care Unit between April and September 2018.

RESULTS: Parents stated barriers and facilitators within 4 themes: 1. Clinical knowledge and prognosis; 2. Quality of information provision; 3. Emotion regulation; and 4. Psychosocial environment. Facilitators include knowing whether the prognosis includes long-term negative quality of life, knowing all treatment options, receiving information according to health literacy level, being able to process intense emotions, having experienced counseling and practical help. Barriers include a lack of general medical knowledge, being unprepared for a poor prognosis, having an uninformed psychologist.

CONCLUSIONS: We found that clinical information and psychosocial support aid parents in decision-making. Information is best tailored to health literacy. Psychosocial support can be provided by experienced, informed counselors, social services and sibling support, distinguishing between verbal and non-verbal coping preferences, and calm, familiar architecture. Intense emotions may hinder absorption of clinical information, therefore interventions to aid emotion regulation and reduce cognitive load may be looked at in further research. Adjustment of the Situations, Opinions and Options, Parents, Information, Emotions framework based on our results can be evaluated.

Original languageEnglish
Pages (from-to)730-741
Number of pages12
JournalPalliative Medicine
Volume36
Issue number4
Early online date12 Feb 2022
DOIs
Publication statusPublished - Apr 2022

Bibliographical note

Funding Information:
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study is funded by the Research Foundation Flanders (FWO; G041716N to Joachim Cohen) and the special research fund of Ghent University (BOF; 01J06915 to Luc Deliens). Kim Beernaert is a Postdoctoral Fellow of the Research Foundation Flanders (FWO). The study sponsors had no role in study design, the collection, analysis and interpretation of data, the writing of the report and the decision to submit the manuscript for publication.

Funding Information:
We would like to thank all parents who participated in this study, as well as the neonatologists and neonatal nurses at the Neonatal Intensive Care Unit wards, in helping us with the recruitment of parents and providing rooms to conduct interviews. We would like to thank Mayke for transcribing the interviews, and Eline and Pauline for their coding perseverance in COVID-19 times. We thank the participating hospitals (UZ Gent, UZ Brussel, UZ Leuven, UZ Antwerpen, and AZ St Jan Brugge). We would also like to thank all our collaborators in the Neonatal Intensive Care Unit consortium. We would like to thank Helen White for her language editing. The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study is funded by the Research Foundation Flanders (FWO; G041716N to Joachim Cohen) and the special research fund of Ghent University (BOF; 01J06915 to Luc Deliens). Kim Beernaert is a Postdoctoral Fellow of the Research Foundation Flanders (FWO). The study sponsors had no role in study design, the collection, analysis and interpretation of data, the writing of the report and the decision to submit the manuscript for publication.

Publisher Copyright:
© The Author(s) 2022.

Copyright:
Copyright 2022 Elsevier B.V., All rights reserved.

Keywords

  • Neonatology
  • decision making
  • emotional regulation
  • intensive care units
  • neonatal
  • parents
  • qualitative research

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