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Updated: Jul 4, 2025
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Clinical Practice Protocol of Creative Music Therapy for Preterm Infants and Their Parents in the Neonatal Intensive Care Unit
Published on: January 7, 2020
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Exploring Parent Experiences With Early Palliative Care Practices in the NICU.
Megan Quinn1, Sheila Gephart, Janice Crist
1Author Affiliations: Oregon Health Sciences University, Portland (Dr Quinn); and University of Arizona, Tucson (Drs Gephart and Crist).
Summary
Parents in the neonatal intensive care unit (NICU) benefit from early palliative care (PC) that supports shared decision-making and coping. Enhanced PC collaboration and peer support are crucial for improving parental experiences during infant critical illness.
Area of Science:
- Neonatal Intensive Care Unit (NICU) Care
- Palliative Care (PC)
- Parental Mental Health
Background:
- NICU admission of critically ill infants causes parental stress and anxiety.
- Early palliative care (PC) can support parents in the NICU.
- Key PC elements include shared decision-making, care planning, and distress coping.
Purpose of the Study:
- To explore parent experiences with early PC practices in the NICU.
- Investigated shared decision-making, care planning, and coping with distress.
Main Methods:
- Qualitative descriptive study with 16 parents.
- Interviews analyzed using conventional content analysis.
- Trustworthiness enhanced through reflexive journaling, peer debriefing, and data audits.
Main Results:
- Decision-making involved information gathering, emotional impact, and external influences.
- Care planning experiences included learning advocacy, role as spectator vs. participant, and communication.
- Parental coping themes were trauma exposure, survival mode, and evolving support networks.
Conclusions:
- Improve decision-making support and collaboration.
- Enhance parental engagement in care planning.
- Promote peer support in NICU and online communities.
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