Jackelyn Boyden
University of Pennsylvania, PA·Medicine & Clinical Research·Early-career
About 698,000 children in the U.S. live at home with serious illness and significant care needs.
- Fields
Medicine & Clinical Research
Public Health & Epidemiology
- Topics
pediatric palliative care
children with serious illness
home-based care
- Grants
- 1 known grant, through Jun 2027
What they work on
- Evaluate whether a rapid digital feedback loop, which sends family-reported home care experiences to pediatric palliative care teams as they are submitted, is feasible and leads to clinical actions.
- Explore how families' home-based pediatric palliative care experiences relate over time to the physical, mental and social health of children living with serious illness.
- Explore how home-based palliative care experiences relate over time to family caregivers' physical, mental and social health, accounting for socioeconomic and environmental challenges.
More about the research
Their families depend on a patchwork of hospital and community services that leaves major gaps. Money troubles, material hardship, low social support and neighborhood conditions often add to the strain, especially in underserved communities. Pediatric palliative care (PPC) teams focus on comfort, quality of life and family support. They are well placed to help, but most are based in hospitals and provide care from a distance. As a result, they often lack information about families' daily experiences at home and whether care meets their changing needs.
Why it matters
Families caring for seriously ill children at home, especially in underserved communities, face gaps in services and social and economic hardships that harm their wellbeing. Giving palliative care teams real-time, family-reported information could help them tailor care to each family's needs. It could also help teams address these hardships and may improve children's and families' health. The project is also meant to inform future intervention studies.
Known grants
From NIH and NSF research grants. Labs often have other funding we can't see.
Closest labs
Virginia LeBaron
University of Virginia, VA·Medicine & Clinical Research
Develop digital phenotypes, distinctive data patterns of the advanced cancer pain experience at home, using smartwatch and environmental sensor data from the BESI-C system. The phenotypes will cover how often pain events occur, how intense they are, and how they affect quality of life.
Tianjing Li
University of Colorado Denver/Anschutz Medical Campus, CO·Medicine & Clinical Research
Identify barriers to and helpful factors in chronic pediatric uveitis care through focus groups with caregivers, clinicians and community partners.
Katherine Courtright
University of Pennsylvania, PA·Medicine & Clinical Research
Test whether an automated needs-based palliative care trigger in the electronic health record increases hospital-free days and palliative consults compared with usual care, in a cluster-randomized trial of over 64,000 patients at 9 hospitals.
The school
University of Pennsylvania: 90 labs on PI Pages, $2.2B a year on research, 750 research doctorates a year.
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