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Updated: Jun 11, 2025
Assessment and Evaluation of the High Risk Neonate: The NICU Network Neurobehavioral Scale
Published on: August 25, 2014
Experiences of parents with very premature-born children at risk of neurodevelopmental disorders: A qualitative study
Carmen Ropero-Padilla1,2,3, Miguel Rodriguez-Arrastia1,2,3, José Enrique Bernabé-Zuñiga1
1Department of Nursing Science, Physiotherapy and Medicine, Faculty of Health Sciences, University of Almeria, Almeria, Spain.
Insights
Parents of premature infants need clearer communication and ongoing support for their child's care. Health systems require reform to better train staff and provide continuous guidance for families navigating the challenges of preterm birth.
Area of Science:
- Neonatal care
- Developmental pediatrics
- Parental support systems
Background:
- Premature birth presents significant stress and separation anxiety for parents.
- Family-centered care is crucial for neonates at risk of neurodevelopmental disorders.
- Post-discharge support and training are vital components of neonatal care.
Purpose of the Study:
- To explore parental perceptions of care, interventions, and assistance for premature infants.
- To understand the experiences of parents with children at risk of neurodevelopmental disorders.
- To identify parental needs during the initial months of a premature infant's life.
Main Methods:
- Qualitative descriptive study utilizing individual interviews.
- Thematic analysis was employed for data interpretation.
- Reporting followed established standards for qualitative research.
Main Results:
- Three key themes emerged from interviews with 21 parents.
- Theme 1: Parental perspectives on risk communication for preterm birth.
- Theme 2: Navigating parental support and early interventions.
- Theme 3: Perceptions of protective and challenging factors in preterm birth.
Conclusions:
- Enhanced communication regarding infant care and interventions is essential for parents.
- Healthcare professionals require improved training in resource management for neonatal care.
- Continuous guidance and support strategies are needed for parents, both in-hospital and post-discharge.
- Healthcare system reforms and enhanced support structures are necessary to improve care for parents of premature infants.
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.
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