"Our goal was to find out if it the tools we've developed are feasible and not too burdensome for the caregivers of children and adolescents with rare diseases," says Maureen Lyon, Ph.D., a clinical psychologist at Children's National who leads the Family Centered Advance Care Planning Team (FACE) within the Center for Translational Research at Children's National. "Developing the tool with their needs in mind was crucial because these families are already doing so much -- including many tasks that used to be only done in a hospital-inpatient setting."
The approach was tested in a small sample of families whose children receive medical care through the Complex Care Program at Children's National. The findings from this preliminary study were recently published in the journal BMJ: Supportive and Palliative Care.
Intervention - Family - Feedback - Review - Patient
The intervention, which was guided by family feedback including review by the Patient and Family Advisory Council as well as families from the Leukodystrophy and Myelin Disorders Programat Children's National, includes two evidence-based modules:
An advanced care planning discussion, adapted specifically for families of children with rare diseases based on the validated Next Steps: Respecting Choices curriculum.
Modules - Sessions - Nurses - Population - Families
The two modules were delivered through four sessions led by two seasoned registered nurses who are familiar with the population. All families rated the sessions as useful and helpful, and while emotionally intense, not harmful in any way. In addition, feedback indicated that the last two sessions would be best served if they were combined into one longer session that coincided with an existing medical visit.
The adapted CSNAT needs assessment allowed the research team to collect some additional important information about the pressing needs and top priorities of the caregivers, which included:
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