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The "What Is Important to Us" Communication Intervention Pilot Clinical Trial

Who can join

6 Months · All sexes

Children with SNI

Inclusion

* Hospitalized at study sites
* Ages 6 months through 25 years old
* Has had SNI for \>6 months, defined as permanent static or progressive central nervous system injury resulting in motor/cognitive impairment and medical complexity

Exclusion

* Has never previously been home/discharged
* Has an expected hospital length of stay \<2 days
* Has a life expectancy of \<4 weeks
* Previous study participation

Parents

Inclusion

* Parent/legally authorized representative of an eligible child with SNI
* Preferred language of care English and/or Spanish

Clinicians

Inclusion -Licensed physicians, nurses, advanced practice providers, respiratory therapists at study site

Exclusion

-Previous study participation

About the study

The objective of this study is to conduct a pilot randomized controlled trial (RCT) of a photo-narrative communication intervention developed by our study team with patients/parents of children with severe neurological impairment (SNI) and their pediatric intensive care unit (PICU) clinicians to assess feasibility, acceptability, and early efficacy.

What is being tested

• "What Is Important to Us" Communication Intervention (behavioral)

Sponsor: Seattle Children's Hospital · Participants: 160 · Started: Feb 10, 2025

Contact the study team

• Jori Bogetz, MD · Phone: 206-884-0572

Official record on ClinicalTrials.gov — NCT06208332

Locations in the U.S.

Conditions

• Critical Illness
• Neurologic Diseases

From ClinicalTrials.gov, data retrieved Sep 30, 2026. Each study sets its own eligibility; the study team decides who can join.