Background Pediatric patients with rare diseases experience high mortality. Pediatric advance care planning (pACP) has been proven to improve communication and spiritual and emotional well-being. Few empirically validated interventions exist to provide psychosocial support to help parents make medical decisions for their child.
Methods Consultation with families of children with rare diseases and with the National Organization for Rare Disorders revealed that basic palliative care needs should be addressed prior to a pACP intervention. Thus, we beta tested the innovative FACE-Rare intervention with 7 families of children with ultra-rare diseases, integrating two, previously adapted for pediatrics, evidence-based interventions: Carer Support Needs Assessment Tool pediatric (Sessions 1 & 2) plus Respecting Choices (Sessions 3 & 4). Using a two-armed randomized clinical trial design we are pilot testing a further adapted 3-session FACE-Rare intervention with 30 family caregivers of children with rare diseases for acceptability, feasibility, safety, and initial efficacy on 3-month outcomes including family’s appraisal of caregiving.
Results We reached out to 74 families. 47 did not respond. To date 28 family caregivers have been consented and undergone secondary screening. 23 family caregivers (19 dyads with at least one eligible caregiver) completed the baseline visit and 15 dyads completed the 3- month follow-up. Sessions were conducted using Telemedicine. Interim analysis revealed racial differences in spirituality and caregiving appraisal at baseline with non-white families reporting greater spiritual quality of life and more positive appraisals of caregiving, compared to white/Caucasian families. FACE-Rare families prioritized financial, legal, or work issues, 83%, over other palliative care needs for their child and themselves. Video clips will be presented.
Conclusions Initial findings suggest prioritizing meeting the financial, legal, and work needs of families of children with rare diseases through social work or case management services, prior to addressing traditional palliative care needs. pACP is acceptable and feasible.
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