Recruiting
Phase 2

Photo-Narrative Communication

Sponsor:

Seattle Children's Hospital

Code:

NCT06208332

Conditions

Critical Illness

Neurologic Disorder

Eligibility Criteria

Sex: All

Age: 0+

Healthy Volunteers: Not accepted

Interventions

"What Is Important to Us" Communication Intervention

Study Details

Brief summary:

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.

Conditions

Critical Illness

Neurologic Disorder

Study ID

NCT06208332

Start date

Feb 10, 2025

Status verified date

May, 2025

Completion date

May 15, 2027

Anticipated

Primary completion date

Jan 1, 2027

Anticipated

Eligibility Criteria

Eligibility Criteria

Sex: All

Age: 0+

Healthy Volunteers: Not accepted

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

Study Design

Enrollment

160 participants

Anticipated

Allocation

Randomized

Intervention Model

Parallel Assignment

Primary purpose

Supportive Care

Interventions and Outcome Measures

Arms

experimental: "What Is Important to US" Communication Intervention

The "What Is Important to Us" intervention is a photo-narrative invention that prompts parents to select a total of 1-3 photos that are then displayed at their child's ICU bedside representing: 1) who is important in our family; 2) what strengthens us as parents; 3) how we know our child is feeling well; and 4) what makes our child's hospitalization easier. Parents are encouraged to discuss the pictures with clinicians caring for their child. Clinicians caring for the child are sent the photos electronically along with suggested discussion prompts to use with parents.

no intervention: Usual Care

Usual supportive care

Interventions

"What Is Important to Us" Communication Intervention

The "What Is Important to Us" intervention is a photo-narrative invention that prompts parents to select a total of 1-3 photos that are then displayed at their child's ICU bedside representing: 1) who is important in our family; 2) what strengthens us as parents; 3) how we know our child is feeling well; and 4) what makes our child's hospitalization easier. Parents are encouraged to discuss the pictures with clinicians caring for their child. Clinicians caring for the child are sent the photos electronically along with suggested discussion prompts to use with parents..

Primary outcome measure

  • Feasibility [ Time Frame: enrollment and PICU discharge (assessed up to 4 weeks) ]
  • Acceptability [ Time Frame: PICU discharge (assessed up to 4 weeks) ]

Central Contacts and Locations

Central contacts

Jori Bogetz, MD

206-884-0572jori.bogetz@seattlechildrens.org

Locations

Seattle Children's Hospital

Recruiting

Seattle, Washington, United States, 98105

Contacts

Jori Bogetz, MD

jori.bogetz@seattlechildrens.org

More Information

Sponsor

Seattle Children's Hospital

Last update posted

Feb 18, 2026

Last verified

May, 2025

Keywords

  • pediatric palliative care
  • communication
  • severe neurological impairment

Trial information was received from ClinicalTrials.gov and was last updated on 2026-09-10. This information was provided to ClinicalTrials.gov by Seattle Children's Hospital on 2026-02-18.