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

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

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.

Pilot randomized controlled trial of the "What Is Important to Us" communication intervention. Parents of children with severe neurological impairment in the ICU and their clinicians will be enrolled at the time of the child's ICU admission (baseline) and complete pre-intervention surveys before randomization. Intervention-arm parents and clinicians will complete the "What Is Important to Us" intervention. Post-intervention (within 1 week of ICU discharge) surveys will be completed by parents and clinicians. The control-arm parents will receive usual care (including standard psychosocial supports such as social work). Control-arm parents and clinicians will complete study surveys at the same timepoints. Semi-structured interviews will be completed with intervention-arm parents and clinicians following survey completion to guide further intervention enhancements and future work.

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