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.
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Family Appraisal of Caregiving for Palliative Care (FACQ-PC)
Timeframe: Baseline, 3-, 6-, and 12 month post-intervention
Functional Assessment of Chronic Illness Therapy-Spirituality-12 Version 4 Expanded (FACIT-Sp-EX)
Timeframe: Baseline, 3-, 6-, and 12 month post-intervention
Advance Care Plan for Child with Rare Disease Located in the Electronic Health Record (EHR).
Timeframe: Baseline and 1 year
Child Healthcare Utilization: initiation of palliative care consultations
Timeframe: Baseline, 3-, 6-, 12-month.
Generalized Anxiety Disorder-7 (GAD-7)
Timeframe: Baseline, 3-, 6-, 12-month
Patient Health Questionaire-9 (PHQ-9)
Timeframe: Baseline, 3-, 6-, 12-month
Child Healthcare Utilization: # of days in palliative care before death.
Timeframe: Baseline, 3-, 6-, 12-month
Child Healthcare Utilization: # of hospitalizations during study participation
Timeframe: Baseline, 3-, 6-, 12-month
Child Healthcare Utilization: # of Emergency Department visits during study participation
Timeframe: Baseline, 3-, 6-, 12-month
Child Healthcare Utilization: # of days in the Intensive Care Unit (ICU)
Timeframe: Baseline, 3-, 6-, 12-month
Child Healthcare Utilization: # of surgeries
Timeframe: Baseline, 3-, 6-, 12-month