Children's National Research Institute
The palliative care needs of family caregivers of children with rare diseases and their children are largely unmet, including the need for support to prepare for future medical decision making. This trial will test the FACE-Rare intervention to see if investigators can identify and meet those needs; and if FACE-Rare effects family caregivers' quality of life and child healthcare utilization. Finally, investigators will determine if the intersectionality of child-sex, family-race, Federal poverty level, and social connection influences family quality of life and child health care utilization longitudinally.
Pediatric patients with rare diseases experience high mortality with 30% not living to see their 5th birthday. Families are likely to be asked to make complex medical decisions for their child. Pediatric advance care planning involves preparation and skill development to help make future medical care choices. Children with rare disorders are a heterogeneous group, resulting in their exclusion from research. Available research on families of children with rare diseases lacks scientific rigor. Although desperately needed, there are few empirically validated interventions to address these issues.…
Child inclusion criteria: * ≥1.0 years and \<18.0 years at enrollment. * Unable to participate in end-of-life care decision-making. * Has a rare disease as operationally defined by NIH's Genetic and Rare Diseases Information Center (GARD). * Not under a Do Not Resuscitate Order or Allow a Natural Death Order. * Not in the Intensive Care Unit. Family caregiver inclusion criteria: * \> 18.0 years at enrollment. * Child's family caregiver/legal guardian. * Not known to be developmentally delayed. Support person inclusion criteria: * \> 18.0 years at enrollment. * Chosen by family caregiver.…
Child with rare disease who is unable to participate in medical decision making/family caregiver/support person triads will be randomized at a 1:1 ratio to one of two study arms, either the 3 session FACE-Rare intervention or the enhanced Treatment as Usual. Assessments will be completed at baseline, 3, 6 and 12 month outcomes.