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Original research
Voices of experience: insights from Dutch parents on periviability guidelines and personalisation
  1. Lien De Proost1,
  2. Angret de Boer2,3,
  3. Eduard Verhagen4,
  4. Marije Hogeveen3,
  5. Rosa Geurtzen3,
  6. E J T (Joanne) Verweij2
  1. 1 Department of Ethics and Law, Leiden University Medical Center, Leiden, The Netherlands
  2. 2 Department of Obstetrics, Leiden University Medical Center, Leiden, The Netherlands
  3. 3 Department of Neonatology, Radboudumc Amalia Children's Hospital, Nijmegen, The Netherlands
  4. 4 Department of Pediatrics, Beatrix Children's Hospital, University Medical Center Groningen, Groningen, The Netherlands
  1. Correspondence to Angret de Boer; a.h.a.de_boer{at}lumc.nl

Abstract

Objective To investigate the perspectives of experienced parents regarding guidelines and personalisation for managing imminent extremely premature births (22–26 weeks gestational age (GA)) . The study examined four scenarios: no guideline, a guideline based on GA, a guideline based on GA plus other factors and a guideline based on a calculated prognosis.

Design Nineteen semistructured qualitative interviews were conducted with Dutch parents who experienced (imminent) extremely premature births between 23+5 and 26+2 weeks of gestation. Diversity was aimed for through purposive sampling from a database created prior to this study. Four of the parents opted for palliative care. Among the parents who chose intensive care, in nine cases the infant(s) survived.

Results All participants acknowledged the necessity of having a periviability guideline because it would provide valuable decision-making support, and counterbalance decisions solely based on parental instincts to save their infant. Parents preferred guidelines that considered multiple prognostic factors beyond GA alone, without overwhelming parents with information, because more information would not necessarily make the decision easier for parents. Personalisation was defined by parents mainly as ‘being seen and heard’ and associated with building relationships with healthcare professionals and effective communication between them and professionals.

Conclusions The results underscore the importance of having a periviability guideline including multiple prognostic factors to assist parents in making decisions at the limit of viability, and the importance of a personalised care approach to meet parental needs in the context of imminent extremely preterm birth.

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

Data availability statement

Data are available upon reasonable request. The data that support the findings of this study are available from the corresponding author, LDP, upon reasonable request.

https://doi.org/10.1136/archdischild-2024-327398

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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, LDP, upon reasonable request.

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    Footnotes

    • LDP and AdB are joint first authors.

    • Contributors LDP 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. AdB designed the study, collected the data, carried out the initial analyses together with LDP and reviewed and revised the manuscript. EV 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. J(E)JTV and RG conceptualised and designed the study, contributed to and supervised the analyses of the collected data, and critically reviewed and revised the manuscript. LDP is 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 ZonMW: On the limits of perinatal viability: ethical challenges of personalised counselling and the artificial placenta (40-00703-97-19039), MRACE Erasmus MC.

    • 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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