Top 10 Things NICU Parents Wish You Knew (With Insights to Guide Your Practice) – From the Parent Voices Webinar Series
By Jaylee Hilliard, VP of Clinical Strategy & NICU Parent, AngelEye Health
NICU parents walk an emotional tightrope—grappling with uncertainty, fear, hope, and fatigue as they navigate their infant’s care. Their stories are more than emotional narratives; they’re roadmaps for improvement. In the recent AngelEye Health Parent Voices Webinar Series, families shared what they wish NICU teams better understood about their experiences. These voices highlight the opportunities and responsibilities for NICU leaders to create a more family-centered care model. Below are 10 insights, in their own words, paired with practical suggestions for your team.
1. “I didn’t know I was allowed to touch my baby.”
“Even though I was physically in the room every single day, transitioning from just being present to actively participating in my baby’s care was a big challenge for me.” – Catherine Nettleton, mother to William, former 28-weeker
The Heart of the Message:
Many families report feeling uncertain or even afraid to participate in caregiving, especially in the early days. Without explicit guidance, they may interpret silence as discouragement.
Why It Matters:
Parental involvement supports infant development and builds long-term caregiving confidence. Failing to encourage this involvement early may contribute to long-term anxiety and disengagement.
Leadership Reflection:
Evaluate how your team sets the tone around parent participation. Are families proactively invited into care tasks from the beginning? Standardized language during admission and orientation can ensure every family receives a consistent, empowering message.
2. “I felt rushed through discharge and didn’t absorb everything.”
“Discharge was all within what felt like the blink of an eye… I believe receiving information gradually… would have helped me absorb it much better.” – Sharisha Davis, mother of Amari, former 23-weeker
The Heart of the Message:
Discharge often feels like a whirlwind despite weeks or months in the NICU. Parents describe information overload and confusion, with limited time to ask questions or process instructions.
Why It Matters:
Poor discharge preparation can impact infant health, increase readmissions, and erode parent confidence. Gradual, structured education improves both outcomes and family satisfaction.
Leadership Reflection:
Discharge planning should start early and follow a scaffolded, milestone-based approach. Consider tools or workflows that introduce discharge topics well before the final days and ensure parents absorb key information over time.
3. “Help me feel like I’m part of the team, not a visitor.”
“I want to feel supported and have the space to ask questions without hesitation… Help me build the confidence to speak up.” – Sharisha Davis
The Heart of the Message:
Families want to be involved but often feel unsure of how to engage. Parents may retreat instead of speaking up when care teams are rushed, busy, or use clinical jargon.
Why It Matters:
Active parent participation improves bonding, reduces stress, and promotes better outcomes. Creating psychological safety is essential to empowering families in the NICU.
Leadership Reflection:
Assess how your team responds to parent questions. Are they met with patience and validation? Empower staff with communication strategies that promote shared decision-making and reduce unintentional hierarchies.
4. “Please don’t use terms that make it sound like my baby is failing.”
“I’ll never forget how they kept calling them ‘failed trials.’ I felt so bad for him and for us… he wasn’t failing; he was trying.” – Catherine Nettleton
The Heart of the Message:
Clinical language can unintentionally wound. Terms like “failed extubation” or “incompetent cervix” may be routine for care teams, but they can be deeply upsetting for families.
Why It Matters:
Language shapes perception. Thoughtful, person-centered language preserves dignity, fosters trust, and reassures families that setbacks don’t define their baby’s progress.
Leadership Reflection:
Review your unit’s most frequently used clinical terms and consider creating a “family-friendly” alternative glossary. Offer training on language sensitivity and model reframing—e.g., saying “not ready yet” instead of “failed.”
5. “Changes feel huge when you’re already on edge.”
“Even routine changes—like moving a baby—can feel overwhelming, especially without a heads-up or immediate explanation.” – Catherine Nettleton
The Heart of the Message:
NICU parents operate under a constant baseline of stress. Any change—whether in care plans, room assignments, or routine—can provoke anxiety if not explained ahead of time.
Why It Matters:
Surprises, even minor ones, can erode parent trust and safety. Clear communication, especially during transitions, supports emotional regulation and reinforces partnership.
Leadership Reflection:
Implement proactive “change alerts” for parents. Include anticipated care changes in shift updates or bedside huddles. Empower nurses to anticipate questions and reassure families during transitions.
6. “We needed preparation for what life would be like at home.”
“At home, you’re expected to wear every hat—parent, nurse, even first responder if anything goes wrong.” – Lenda Cruell Sanchez, mother to Noah, former 24-weeker
The Heart of the Message:
Discharge brings sudden role expansion. Parents feel unprepared for emergencies, medication administration, feeding challenges, and coordinating complex care.
Why It Matters:
Preparing families for the intensity of post-NICU care prevents avoidable harm and supports caregiver well-being.
Leadership Reflection:
Offer simulation experiences or “rooming-in” scenarios that mirror real-life situations. Include emotional prep—not just technical instructions—in discharge planning protocols.
7. “I wish I had trusted my instincts more—but I needed help to do that.”
“I wasn’t ready, and I didn’t think he was ready to go home.” – Lenda Cruell Sanchez
The Heart of the Message:
Even when parents have doubts, they may feel silenced or intimidated by the authority of medical professionals. Later regret can lead to long-term guilt and distrust.
Why It Matters:
Empowering families to voice concerns supports safety and reinforces their vital role as advocates.
Leadership Reflection:
Create intentional pauses during rounds and discharge planning to ask, “Do you feel ready?” Ensure parents know that hesitation is not just okay—it’s expected and taken seriously.
8. “Multilingual, bite-sized information would have made all the difference.”
“Receiving information gradually… would have helped me absorb it much better.” – Sharisha Davis
The Heart of the Message:
Exhaustion, stress, and language barriers make traditional education methods ineffective. Long pamphlets or technical briefings often go unread or misunderstood.
Why It Matters:
Accessible, digestible education improves retention and confidence—and honors diverse learning styles and backgrounds.
Leadership Reflection:
Invest in multilingual educational content and mobile-friendly materials. Make resources accessible on demand, and check comprehension regularly using “teach-back” techniques.
9. “I didn’t know where to turn for answers.”
“You know to stay off Google, but it’s difficult when you don’t know where else to turn…access to [relevant information] would have been a gamechanger.” – Sharisha Davis
The Heart of the Message:
Families often struggle to find trustworthy, understandable information. Without vetted resources, many turn to the internet out of desperation.
Why It Matters:
Misinformation can harm both infants and families. Providing curated, easy-to-access information builds confidence and reduces anxiety.
Leadership Reflection:
Ensure parents have access to meaning and appropriate education at the right time in their journey, remote provider communication, and timely daily updates. Make sure it’s easy for families to access despite their location and native language.
10. “Being away from the NICU was heartbreaking—we needed better ways to stay connected.”
“It was a roller coaster—completely exhausting and the emotions were overwhelming.” – Sharisha Davis
The Heart of the Message:
Parents juggling home, work, and other children often miss out on crucial NICU moments. The emotional toll of separation is compounded when updates are infrequent or inconsistent.
Why It Matters:
Connection is critical. When parents feel informed and engaged—even remotely—they cope better, bond more easily, and feel respected as integral to their child’s care.
Leadership Reflection:
Leverage technology like secure messaging, daily photo/video updates, or live-streamed bedside cameras to keep families connected. Use digital tools to close the emotional and informational gap between home and hospital.
NICU parents are not just caregivers—they are critical members of the care team. By listening to their voices and translating their needs into system-level change, we can foster trust, improve outcomes, and build a more compassionate, connected model of neonatal care. Importantly, supporting parents and improving communication does not have to mean more work or emotional strain for care teams. When systems support family engagement, nurses and staff often experience greater satisfaction and fewer miscommunications and disruptions. As leaders, we have the power—and the responsibility—to make their voices heard and their experiences better. If you want to hear more from the Parent Panel that participated in the AngelEye Health Parent Voices Webinar Series, click the link to access all the webinars on-demand: https://www.angeleyehealth.com/media-room/#pr