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Challenges of parenting children born before 24 weeks of gestation
Aldina Pivodic1,2, Malin Hansson3,4, Chatarina Löfqvist1,3
1Department of Clinical Neuroscience, Institute of Neuroscience and Physiology, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.
Insights
Parents of extremely premature infants (<24 weeks gestation) face challenges including decreased satisfaction and fatigue. Long-term, family-centered support is crucial for infant development and parental well-being.
Area of Science:
- Neonatal care and developmental pediatrics.
- Parental well-being and healthcare experiences.
Background:
- Extremely premature infants (<24 weeks gestation) require specialized, long-term care.
- Parental experiences and child development outcomes are critical in this cohort.
Purpose of the Study:
- To assess parental experience of care, parental well-being, and child development.
- To evaluate outcomes in extremely premature infants born <24 weeks gestation in Sweden (2007-2018).
Main Methods:
- A survey utilizing multiple questionnaires was administered to parents.
- 124 out of 349 (35.5%) parents of extremely premature infants completed the survey.
Main Results:
- Parents reported high initial healthcare satisfaction, which declined post-discharge but remained high.
- Significant developmental concerns were identified: 84.3% met criteria for suspected developmental deviation, 55.6% for avoidant restrictive food intake disorder, and 47.9% for visual perception problems.
- Parents experienced severe fatigue (48.6%) despite strong social support; 30.6% received economic support, and 37.9% of children received habilitation services.
Conclusions:
- Parents of extremely premature infants face significant challenges, including reduced satisfaction after discharge and persistent fatigue.
- There is a critical need for comprehensive, family-centered support systems.
- Long-term, multi-professional follow-up care is essential for these families and children.
Aim:
To 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.
Methods:
A survey based on multiple questionnaires answered by 124/349 (35.5%) parents.
Results:
The 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.
Conclusion:
This 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.
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