Challenges of parenting children born before 24 weeks of gestation

Abstract

AimTo assess experience of care, well‐being of parents and children's development in a cohort of extremely premature infants born <24 weeks of gestation in Sweden from 2007 to 2018.MethodsA survey based on multiple questionnaires answered by 124/349 (35.5%) parents.ResultsThe median age of parents and children was 43 and 9 years, respectively; 74.2% were mothers. Parents expressed high healthcare satisfaction. Following discharge from neonatal care, the satisfaction with the infant's treatment, support from personnel and being respected as a parent significantly declined but remained high. The criteria for suspected developmental deviation according to the screening test early symptomatic syndromes eliciting neurodevelopmental clinical examinations‐questionnaire was fulfilled by 84.3%, 55.6% had suspected avoidant restrictive food intake disorder and 47.9% had visual perception problems. Parents experienced severe fatigue (48.6%) despite strong social support and family self‐efficacy. Economic support was provided to 30.6%, and 37.9% of children were enrolled in habilitation services.ConclusionThis study highlighted the substantial challenges faced by parents of infants born before 24 weeks of gestation, including decreased satisfaction post‐discharge, fatigue and concerns about children's well‐being. The findings underscore the need for comprehensive family‐centred support and long‐term multi‐professional follow‐up centres.