What this trial measures

• Family Appraisal of Caregiving for Palliative Care (FACQ-PC)Baseline, 3-, 6-, and 12 month post-intervention

  The FACQ-PC is a 25-item measure consists of four theoretically derived subscales: (i) caregiver strain, (ii) positive caregiving appraisals, (iii) caregiver distress, and (iv) family well-being. Scores are from 5 = strongly agree to 1 = strongly disagree. Investigators will not calculate a Total score. On the subscale scores for positive caregiving appraisals and family well-being, higher scores mean better outcomes, i.e. greater positive caregiving appraisals or family well-being. On the subscale scores for caregiver strain and caregiver distress, higher scores mean worse outcomes, i.e. greater caregiver strain or caregiver distress. The FACQ-PC subscale scores will be computed by taking the mean of the items (score range 1-5). Some items are reverse scored, depending on how the item is phrased, so that higher scores = higher amount of the subscale being measured. So the minimum value for each subscale is 1 and the maximum value for each subscale is 5.

• Functional Assessment of Chronic Illness Therapy-Spirituality-12 Version 4 Expanded (FACIT-Sp-EX)Baseline, 3-, 6-, and 12 month post-intervention

  Assessed construct of spiritual well-being. Two subscales Meaning/Peace (7 items) and Faith (5 items) and Total score (12 items) were calculated. on a 5-point Likert scale from 0=not at all to 5=very much. Some items are reverse scored. See www.facit.org Meaning/Peace subscale score range from minimum value of 0 to maximum value of 32. Higher scores indicate better meaning/peace. Faith subscale score range from 0 minimum value to maximum value of 16. Higher scores indicate better meaning/peace. Total score range is from 0 minimum value to maximum value of 92. Higher scores indicate better spiritual well-being.

• Advance Care Plan for Child with Rare Disease Located in the Electronic Health Record (EHR).Baseline and 1 year

  Documentation of an advance care plan for child with rare disease in the Electronic Health Record and decisional preference - to continue all treatments, to continue all treatments with exceptions noted, to provide comfort care only.

• Child Healthcare Utilization: initiation of palliative care consultationsBaseline, 3-, 6-, 12-month.

  Using a standardized data abstraction form to count initiation of palliative care consultations during the study.

• Generalized Anxiety Disorder-7 (GAD-7)Baseline, 3-, 6-, 12-month

  Quality of life indicator with respect to emotional health-anxiety symptoms. 7 items. Higher scores indicate greater anxiety.

• Patient Health Questionaire-9 (PHQ-9)Baseline, 3-, 6-, 12-month

  Quality of life indicator with respect to emotional health-depressive symptoms. 9 items. Higer scores indicate higher symptoms of depression. A yes response to question 9 (self-harm) will trigger a referral.

• Child Healthcare Utilization: # of days in palliative care before death.Baseline, 3-, 6-, 12-month

  Using a standardized data abstraction form to count # of days in palliative care before death.

• Child Healthcare Utilization: # of hospitalizations during study participationBaseline, 3-, 6-, 12-month

  Using a standardized data abstraction form to count # of days hospitalized during the study.

• Child Healthcare Utilization: # of Emergency Department visits during study participationBaseline, 3-, 6-, 12-month

  Using a standardized data abstraction form to count # of days used Emergency Department during study.

• Child Healthcare Utilization: # of days in the Intensive Care Unit (ICU)Baseline, 3-, 6-, 12-month

  Using a standardized data abstraction form to count # of days was admitted to ICU during the study.

• Child Healthcare Utilization: # of surgeriesBaseline, 3-, 6-, 12-month

  Using a standardized data abstraction form to count # of surgeries during the study.