'What Is Important to Us' communication program for families of children with severe neurological impairment in the ICU
Official title: The "What Is Important to Us" Communication Intervention Pilot Clinical Trial
Run by Seattle Children's Hospital · NCT06208332 · Data updated 2026-11-12
This intervention will try a photo‑narrative communication program with parents of children (6 months–25 years) who have severe neurological impairment in the pediatric ICU and their clinicians to see if it is feasible, acceptable, and helpful.
Quick facts
| Phase | Phase 2 |
|---|---|
| Study type | Interventional |
| Ages | 6 Months and up |
| Sex | All |
| Enrollment | 160 (estimated) |
| Sponsor | Seattle Children's Hospital Academic / other |
| Locations | 1 site (Seattle, Washington) |
| Status | Recruiting |
| Started | February 10, 2025 |
| Main results expected | January 1, 2027 |
| Study ends | May 15, 2027 |
| Registry record updated | February 18, 2026 |
| Trial ID | NCT06208332 on ClinicalTrials.gov |
Is this trial a fit for you?
✓Likely a good fit
Ideal candidates are parents/legal guardians and clinicians of children aged 6 months to 25 years who have had severe neurological impairment for more than six months and are admitted to the ICU, with parent caregivers who prefer English or Spanish.
✕Probably not a fit
Patients unlikely to benefit include those with expected hospital stays under two days, a life expectancy under four weeks, children who have never previously been home, or families who do not speak English or Spanish or who previously participated in the study.
A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.
What this trial studies
This is a pilot randomized controlled trial enrolling parents of children with severe neurological impairment and their ICU clinicians at admission. Participants complete baseline surveys before randomization; the intervention arm completes the "What Is Important to Us" photo‑narrative communication intervention while the control arm receives usual care. Post‑intervention surveys are completed within one week of ICU discharge, and semi‑structured interviews are done with intervention‑arm parents and clinicians to guide refinements. The trial measures feasibility, acceptability, and early signals of effect on communication and related outcomes.
Why it matters
Potential benefit: If successful, the program could improve clarity between families and clinicians about goals and priorities, reduce decisional stress, and help align care with what matters most to the child and family.
How similar studies have gone: Family‑centered and palliative communication interventions in ICU settings have shown promise for improving communication and satisfaction, but photo‑narrative approaches for children with severe neurological impairment are novel and only minimally tested.
Who can join: the full rules
Show full inclusion / exclusion criteria
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
Where it's running
-
Seattle Children's Hospital
Seattle, Washington, United States Recruiting
Study contacts
- Principal investigator: Jori Bogetz, MD — Seattle Children's Hospital
- Study coordinator: Jori Bogetz, MD
- Email: jori.bogetz@seattlechildrens.org
- Phone: 206-884-0572
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How to take part
- Review the eligibility criteria above with your treating physician.
- Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
- Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.