'What Is Important to Us' communication program for families of children with severe neurological impairment in the ICU
The "What Is Important to Us" Communication Intervention Pilot Clinical Trial
PHASE2 · Seattle Children's Hospital · NCT06208332
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 | PHASE2 |
|---|---|
| Study type | Interventional |
| Enrollment | 160 (estimated) |
| Ages | 6 Months and up |
| Sex | All |
| Sponsor | Seattle Children's Hospital (other) |
| Locations | 1 site (Seattle, Washington) |
| Trial ID | NCT06208332 on ClinicalTrials.gov |
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.
Who should consider this trial
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.
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.
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 performed: 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.
Eligibility criteria
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 this trial is running
Seattle, Washington
- 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
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.
Conditions: Critical Illness, Neurologic Disorder, pediatric palliative care, communication, severe neurological impairment