6: Inclusion in co-designing and decision-making for parent-related NICU policies

(e.g., infection control, response planning) including NICU family partners and advocates.

“the impact of the language and tone made me feel defensive and small”

Chapter 6 Key Points

Awareness

  • Families offer lived expertise vital to policy change
  • Co-design ensures equity, relevance, and sustainability
  • Parents must help shape systems that affect them

Assessment

  • Are parents represented on policy committees?
  • Is input sought early and continuously?
  • Do family voices influence final decisions?

Action

  • Include parents in policy and program design
  • Provide orientation, mentorship, and compensation
  • Commit to shared leadership and transparency

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Authors

Lily Lou, MD, FAAP

Morgan Kowalski, BA

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DISCLAIMER
Readers are advised to adapt the guidelines and resources based on their local facility’s level of care and patient populations served and are also advised not to rely solely on the guidelines presented here.