# Home-based Experiences of Palliative and Hospice Care for Children and Caregivers (EXPERIENCE) Project

> **NIH NIH F32** · CHILDREN'S HOSP OF PHILADELPHIA · 2021 · $71,194

## Abstract

PROJECT SUMMARY/ABSTRACT
Children with serious life-threatening illnesses (SLTIs), or illnesses that may or may not have potential
curative or life-prolonging treatments, but all-too-often result in death, are generally living longer with significant
and complex care needs. These children are increasingly being cared for at home, and home-based pediatric
palliative and hospice care (HBPPHC) is playing a greater role in helping children with SLTIs and their
families spend more time at home by providing interdisciplinary care across health care and social service
providers and settings, particularly in the period leading up to and at the very end of life. Many of these children
and families, however, are not receiving consistently high-quality HBPPHC. Care teams urgently need a way to
assess whether the care they provide is indeed aligned with what children and families value and need the
most, and to use these assessments to improve care outcomes and quality of care in the home for each child
and family. In our current study, we developed the Home-based Experiences of Palliative and Hospice Care
for Children and Caregivers (EXPERIENCE) Measure, which is the first known standardized instrument to
assess families’ experiences with HBPPHC in the U.S. We therefore propose to evaluate the EXPERIENCE
Measure from the perspective of parents whose children are currently receiving HBPPHC, as well as
from the perspective of palliative and hospice care providers who will ultimately be implementing this
tool in clinical practice. To accomplish this goal, we propose three specific aims: 1) Evaluate evidence for
score validity and reliability on the EXPERIENCE Measure from parents of children with serious life-threatening
illnesses currently receiving palliative or hospice care at home; 2) Evaluate the feasibility and acceptability of
using the EXPERIENCE Measure in real-time in parents of children with serious life-threatening illnesses
currently receiving palliative or hospice care at home; and 3) Evaluate the perceived clinical utility of the
EXPERIENCE Measure with an interdisciplinary group of pediatric palliative and hospice care stakeholders.
The proposed project is the first to examine the real-time use of an instrument developed to specifically
evaluate parent-reported HBPPHC experiences in the U.S., and fits within the applicant’s long-term career
goals to improve access to quality palliative care for all children with SLTIs and their families, particularly in the
home setting. This proposed project will be supported by a strong mentorship team, relevant coursework, and
career development and other training opportunities at the Children’s Hospital of Philadelphia and the
University of Pennsylvania; together, the research project and training plan will build a foundation for a future
independent program of research in HBPPHC. The proposed project and the applicant’s long-term career
goals align closely with the NINR’s strategic research plan and fundin...

## Key facts

- **NIH application ID:** 10241296
- **Project number:** 5F32NR019517-02
- **Recipient organization:** CHILDREN'S HOSP OF PHILADELPHIA
- **Principal Investigator:** Jackelyn Y Boyden
- **Activity code:** F32 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2021
- **Award amount:** $71,194
- **Award type:** 5
- **Project period:** 2020-09-07 → 2022-09-06

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10241296

## Citation

> US National Institutes of Health, RePORTER application 10241296, Home-based Experiences of Palliative and Hospice Care for Children and Caregivers (EXPERIENCE) Project (5F32NR019517-02). Retrieved via AI Analytics 2026-05-22 from https://api.ai-analytics.org/grant/nih/10241296. Licensed CC0.

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