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Not just the baby: Holding parents in the neonatal surgical journey
H Wilkinson1, M Hotton2, K Damazer3
1Oxford Institute of Clinical Psychology Training and Research, Isis Education Centre, Warneford Hospital, Headington, Oxford, UK; University of Oxford, Oxford, UK.
Insights
Parents need better support during their baby's neonatal surgical journey. Enhanced preparation, communication, and psychological care are crucial for parental well-being.
Area of Science:
- Neonatal care
- Pediatric surgery
- Parental well-being
Background:
- Prenatal diagnosis of conditions requiring neonatal surgery causes significant parental stress.
- Understanding parents' experiences within the neonatal surgical pathway is essential for improving care.
Purpose of the Study:
- To explore parents' lived experiences of the neonatal surgical pathway.
- To develop evidence-based recommendations for enhanced parental support.
Main Methods:
- Qualitative study involving 24 parents via surveys and 9 via in-depth interviews.
- Reflexive thematic analysis was employed to identify key themes.
Main Results:
- Parents emphasized the need for thorough preparation, empathetic communication, and active involvement in their child's care.
- Valuable support included parent-to-parent mentoring, dedicated spaces for emotional expression, meeting physical needs, and access to psychological support.
Conclusions:
- The broader healthcare system's approach to supporting parents significantly impacts their well-being.
- Recommendations span universal, targeted, and specialist support levels, including antenatal counseling, peer support, and psychological interventions.
Introduction:
Parents experience significant stress when their baby receives a prenatal diagnosis that will require surgical treatment. This study aimed to explore parents' experiences of a neonatal surgical pathway and develop recommendations for support.
Methods:
Twenty-four parents completed surveys and nine parents were subsequently interviewed regarding their experiences of the neonatal surgical pathway. Themes were identified using reflexive thematic analysis.
Results:
Parents highlighted the importance of preparation, empathetic communication and involvement in their baby's care. Different levels of support that parents would find useful ranged from parent-to-parent mentoring, a space to discuss feelings in medical consultations, ensuring physical health needs were met, and access to embedded psychological support.
Conclusion:
The findings show that beyond the immediate stress of having an unwell child, the way in which the wider medical system holds parents in their distress has a major impact on parents' wellbeing.
Implications To Practice:
Recommendations to improve support are provided at universal, targeted and specialist levels. For example, it is advised that all parents receive preparation throughout different stages of the treatment journey through antenatal counselling, ward tours, and the opportunity to speak to former patients. Efforts should be made to solicit parents' feelings and concerns to enable them to feel heard and cared for. A number of parents may experience heightened levels of distress, for whom access to specialist psychological support may be indicated.
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