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Original research
Voices of experience: what Dutch parents teach us about values and intuition in periviable decisions
  1. Angret de Boer1,2,
  2. Lien De Proost3,
  3. Marieke de Vries4,
  4. Marije Hogeveen2,
  5. Martine C de Vries3,5,
  6. E J T (Joanne) Verweij1,
  7. Rosa Geurtzen2
  1. 1 Department of Obstetrics, Leiden University Medical Center, Leiden, The Netherlands
  2. 2 Department of Neonatology, Radboudumc Amalia Children's Hospital, Nijmegen, The Netherlands
  3. 3 Department of Ethics and Law, Leiden University Medical Center, Leiden, The Netherlands
  4. 4 Institute for Computing and Information Sciences (iCIS), Radboud University, Nijmegen, The Netherlands
  5. 5 Department of Pediatrics, Leiden University Medical Center, Leiden, The Netherlands
  1. Correspondence to Angret de Boer; a.h.a.de_boer{at}lumc.nl

Abstract

Objective When extremely premature birth at the limits of viability is imminent, shared decision-making with parents regarding the infant’s treatment is widely recommended. Aligning decisions with parental values can be challenging. So, this study aims to get insight into (1) what values parents considered important in their decision, (2) whether their decision was based on intuition and/or rational analysis and (3) parental suggestions on how to help explore and articulate values during prenatal counselling.

Design A qualitative study was performed among Dutch parents who experienced (imminent) extremely premature birth. Diversity was aimed for through purposive sampling. Semistructured interviews were conducted until saturation was achieved. Transcripts were coded and themes were derived from the data.

Results Nineteen interviews were performed. Results show what parents considered important in their decision, such as the infants’ future, family life and ‘giving a chance’. Most parents made their decision more intuitively rather than rationally, for others both coexisted. Particularly fathers and parents who opted for palliative comfort care experienced the decision as rational. Parents would have liked to explore values, but found it challenging. They suggested strategies and conditions to help explore and articulate their values during counselling, such as a multidisciplinary approach.

Conclusions Various considerations and underlying values were found to be important. Parents recognise the influence of emotions and intuition in decision-making and struggle to articulate their values, emphasising the need for guidance. Healthcare providers should engage in open, personalised discussions to facilitate value exploration, enabling informed decisions aligned with parental values.

  • Ethics
  • Intensive Care Units, Neonatal
  • Neonatology
  • Qualitative research
  • Resuscitation

Data availability statement

Data are available upon reasonable request. The data that support the findings of this study are available from the corresponding author (AdB) upon reasonable request.

https://doi.org/10.1136/archdischild-2024-327400

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    Data availability statement

    Data are available upon reasonable request. The data that support the findings of this study are available from the corresponding author (AdB) upon reasonable request.

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    Footnotes

    • Contributors AdB took part in designing the study, collected the data through focus group interviews, carried out the initial analyses of the data and wrote the initial draft of the manuscript. LDP designed the study, collected the data, carried out the initial analyses together with AdB, and reviewed and revised the manuscript. MdV, MCdV and MH made a substantial contribution to the analyses and interpretation of the data by participating in the discussions about the data, and critically reviewed and revised the manuscript in multiple rounds of feedback. EJTV and RG conceptualised and designed the study, contributed to and supervised the analyses of the collected data, and critically reviewed and revised the manuscript. AdB was the guarantor of the overall content. All authors approved the final manuscript as submitted and agreed to be accountable for all aspects of the work.

    • Funding J(E)JTV was funded by ZonMw Clinical Fellowship programme (90719039).

    • Competing interests None declared.

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.

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