Max Rady College of Medicine, Rady Faculty of Health Sciences, University of Manitoba Winnipeg, Manitoba, Canada
Background: Preterm neonates are a growing population of medically complex children whose care demands emphasize the need for enhanced support services. Objective: The aim of this study was to understand the supports that parents found helpful and those that they identified as lacking for preterm children one year after their NICU discharge. Design/Methods: The study team (including parents of preterm children) conducted semi-structured, one-on-one, online interviews of 26 mothers and fathers whose children were born < 32 weeks in Canada and were between 1-21years of age. Parents were recruited through the Canadian Premature Babies Foundation and social media outlets. Interviews were audio-recorded, transcribed, and analyzed using the Constructivist Grounded Theory. Results: We identified five key themes: medical, financial, behavioral, developmental, and educational supports. The medical supports encompassed substantial assistance from neonatology follow-up clinics and excellent support services in urban areas, yet parents faced challenges associated with: frequent and multiple appointments, care of infants dependent on medical technology, and limited access to supports in rural regions. The financial challenges included a lack of government support and financial resources for essential medical equipment, formula, parking, transportation for appointments, and childcare costs. Parents felt that the behavioral and emotional supports of their children with autism, ADHD, and anxiety were often unmet. Preterm children also faced substantial developmental challenges and the adequacy of such supports was inconsistent. The theme of educational supports was evident, with parents highlighting the receipt of individualized education plans, accommodations for learning disabilities, and specialized auditory and visual adaptations to address their preterm children's educational needs.
Conclusion(s): This study underscores the urgent need for comprehensive support systems to address the multifaceted challenges faced by preterm children and their families. It is clear that enhanced access to medical, financial, behavioral, developmental, and educational support services is vital to ensure the well-being and development of these vulnerable children. Policymakers and healthcare providers should collaborate to create more accessible and family-centered care options to facilitate the successful post-NICU journey of preterm children and their families.
