Article Text

Download PDFPDF
Voices of experience: insights from Dutch parents on periviability guidelines and personalisation

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.

Statistics from Altmetric.com

Request Permissions

If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.

Linked Articles