Experiences of parents with very premature-born children at risk of neurodevelopmental disorders: A qualitative study.

Background: Premature birth is a traumatic and stressful situation for parents who are immediately separated from their infant because of the newborn's need for specialized care. The staff of these units are in charge of following the principles of family-centred care and practices for neonates at risk of neurodevelopmental disorders, including providing training to the family during their hospital stay and after being discharged.

Aim: The aim of this study is to explore the perceptions of parents of premature children at risk of neurodevelopmental disorders in regard to care, interventions and assistance provided during the first months of their child's life.

Study design: A qualitative descriptive study was carried out through individual interviews. The data analysis was conducted through a thematic analysis. The methodology and results were reported following the standards for preparing qualitative research reports and recommendations.

Results: Twenty-one parents of premature children were interviewed. From these interviews, three main themes emerged: (i) parents' perspectives on preterm birth risk communication, (ii) navigating parental support and early interventions in preterm birth and (iii) perceptions of preterm birth protective and challenging factors.

Conclusions: The parents of premature children need to receive better communication about the care and interventions for their child, and it is necessary that health personnel are better trained in terms of management and administration of public resources. Strategies must be implemented that continuously guide parents on the follow-up and care of their premature child not only during their first moments of life but also after being discharged from the hospital.

Relevance to clinical practice: This study highlights the need to improve care for parents with premature infants at risk, emphasizing the necessity for health care system reforms and support structures, allowing health care professionals to enhance attention and care.