Living in a bubble with profound difficulties-parents' experiences of extremely preterm survivors.

Abstract

Aim: To analyse the challenges faced by parents of extremely preterm infants born before 24 weeks of gestation and the potential buffering effect of perceived resources on the family's health continuum.

Methods: The qualitative data were obtained from 70 parents of 70 infants born before 24 weeks of gestation, through open-ended questions in a survey. An inductive content analysis was conducted to identify themes and patterns in the parents' experiences. To enhance the understanding of the findings, salutogenic theory was incorporated to contextualise the emerging patterns of resources and deficits.

Results: Parents described the neonatal care as exemplary. However, the integrated results showed that parents reported profound difficulties characterised as 'living in a bubble' with comprehensive neonatal care and varied access to support and participation. In addition, the parents had to manage a preterm born child with medical complexities and encountered significant barriers between care levels.

Conclusion: The findings highlight the need to improve support systems and address challenges for families of preterm born children. Enhancing collaboration between healthcare providers and families, identifying and overcoming barriers during care, and providing comprehensive support services are crucial. Addressing the parents' experienced deficits may mitigate potential adverse effects on family health outcomes.