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Principal Investigator: Jackelyn Y Boyden
Organization: UNIVERSITY OF PENNSYLVANIA
Fiscal Year: 2024
Award: $167,407
Funding agency: National Institute of Nursing Research
Project Summary/Abstract: An estimated 698,000 children in the U.S. live with serious illness and significant
care needs. A complex system of hospital and community providers and agencies supports these children and
their families living at home, but families are still challenged by significant gaps in this system. Compounding
these challenges are the social determinants of health (SDOH) that excerbate the negative impact of serious
illness on children and families. Families, particularly those from historically marginalized communities, may
also experience increased financial difficulties, greater household material hardships, and lower social support.
Taken together, these health system and SDOH challenges have deleterious impacts on children’s and
families’ wellbeing. In response to these challenges, timely and tailored clinical actions are urgently needed to
support children and families living at home. Pediatric palliative care (PPC) programs are uniquely poised to
support children and families, but these programs are typically based in pediatric hospitals and few offer home
services. Care is thus often provided from afar, without information about families’ day-to-day care experiences
and if care is aligned with families’ needs over time. Routinely collecting and rapidly feeding back digitally-
captured data about families’ home-based PPC experiences to PPC teams may a) enable tailored clinical
actions to increase concordance between families’ needs and home-based PPC, b) support teams to address
the health system and SDOH challenges faced by children and families, and c) improve outcomes for children
and families. The proposed Home-based PPC Experiences for Children with Serious Illness and Families
Feedback Study (EXPERIENCE-Feedback), informed by the Chronic Care Model, the clinical decision
support framework, NINR research lenses, and community-engaged research principles, will evaluate a rapid
digital information feedback loop between families at home and PPC providers over time, explore longitudinal
associations between home-based PPC experiences and child/family outcomes, and build a foundation for
future community-engaged interventions by evaluating the feasibility and actionability of rapidly (i.e.,
simultaneous with family reporting) feeding back digitally-captured, family-reported experiences with home-
based PPC to PPC teams over time (Aim 1), and exploring the longitudinal associations between home-based
PPC experiences and child (Aim 2) and family (Aim 3) physical, mental, and social health outcomes. This
award, with mentorship by an interdisciplinary research team at the University of Pennsylvania and the
Children’s Hospital of Philadelphia, will support advanced training in health equity-focused, longitudinal,
community-engaged, and intervention research methods. The proposed project aligns closely with the NINR’s
strategic plan to study health equity, SDOH, and care systems; builds a foundation for future R01 health
equity-focused intervention studies; and supports the applicant’s career goal to advance equitable, high-quality
care and care outcomes for all children living with serious illness and their families in homes and communities.
Terms: <0-11 years old><Address><Award><Back><Caring><Child><Child Care><Child Rearing><Child Support><Child Youth><Childhood><Children (0-21)><Children's Hospital><Clinical><Communication><Communities><Complex><Data><Dimensions><Dorsum><Economics><Employment><Enrollment><Equity><Family><Family Care Giver><Family Caregiver><Feedback><Foundations><Funding><Future><Goals><Health><Health Care Systems><Health system><Healthcare Systems><Home><Hospice Care><Hospitals><Household><Interdisciplinary Research><Interdisciplinary Study><Intervention Studies><Measures><Medical><Mentorship><Multidisciplinary Collaboration><Multidisciplinary Research><Out-patients><Outcome><Outpatients><Palliative Care><Palliative Therapy><Palliative Treatment><Parenting><Parenting behavior><Participant><Pediatric Hospitals><Pennsylvania><Personal Satisfaction><Philadelphia><Provider><Psyche structure><Puericulture><QOC><Quality of Care><Reporting><Research><Research Methodology><Research Methods><Services><Site><Social support><Strategic Planning><Stress><Symptoms><System><Time><Training><Universities><Work><acceptability and feasibility><care coordination><care outcomes><care providers><care services><care systems><career><childrearing><chronic care model><clinical care><clinical decision support><comfort care><community engaged intervention><community engaged participatory research><community engaged research><community informed intervention><community marginalization><community partnered research><community-engaged study><community-partnered intervention><community-partnered study><coordinating care><digital><economic><enroll><experience><feeding><health care outcomes><health equity><healthcare outcomes><homes><improved outcome><intervention research><interventional research><interventional study><interventions research><kids><lens><lenses><marginalized community><mental><pediatric><programs><psychosocial><research and methods><response><social><social health determinants><social support network><team-based care><well-being><wellbeing><youngster>