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

Abstract

ObjectiveTo 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.DesignNineteen 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.ResultsAll 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.ConclusionsThe 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.