# Experiences of Parents Seeking Emergency Care for Injured Children with Special Health Care Needs

> **NIH NIH R03** · STATE UNIVERSITY OF NEW YORK AT BUFFALO · 2024 · $159,103

## Abstract

Children and youth with special health care needs (CYSHCN)—which include children with chronic conditions
such as Asthma, Autism, Depression, Down Syndrome, or Spina Bifida—are at greater risk of developing
hospital complications following physical trauma. However, the mechanisms behind this elevated risk are
unknown. A major roadblock to uncovering potential mechanisms is a lack of understanding of the family
perspective of the care given to the injured child with special health care needs. Therefore, the proposal
objective is to identify factors contributing to poor care quality such as hospital complications through a
qualitative assessment of the experiences of parents and other family caregivers seeking emergency care for
their injured child with special health care needs. This project will engage families representing a range of
special health care needs to provide their experiences and perspectives of emergency care of injured
CYSHCN, and thus addresses a major roadblock in the field. The central hypothesis is that a lack of timely,
integrated, anticipatory, and accommodating care as reported by family caregivers will negatively affect injury
outcomes in CYSHCN. This hypothesis will be examined through the following specific aim: Assess family
caregiver experiences seeking emergency care for injured CYSHCN. In this aim, a demographic questionnaire
will be paired with a semi-structured interview guide to collect qualitative data from family caregivers of
CYSHCN. At least 35 family caregivers will be surveyed and interviewed, consisting of a purposive sample
representing physical, developmental, and behavioral/emotional special health care needs. In addition to local
recruitment, the study team will partner with two organizations that have a national reach to ensure diversity in
recruited family caregivers. The data will be analyzed using a rapid analysis approach, where both inductive
and deductive modalities will be employed. The proposed research is innovative because it focuses on injury
as the reason for CYSHCN accessing emergency care and incorporates the family caregiver voice. The
proposed research is significant because successful completion of this project will elucidate the mechanisms
behind adverse outcomes in injured CYSHCN, where the family caregiver-identified factors in the R03 will
complement the provider-identified factors from the current KL2 project. Together with the KL2, this R03 will
inform interventions for R21 and R01 proposals to improve emergency health care delivery for injured
CYSHCN. As a result, it will support the PI to transition to a fully independent academic translational scientist.

## Key facts

- **NIH application ID:** 10953800
- **Project number:** 1R03TR005206-01
- **Recipient organization:** STATE UNIVERSITY OF NEW YORK AT BUFFALO
- **Principal Investigator:** Denise Finley Lillvis
- **Activity code:** R03 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2024
- **Award amount:** $159,103
- **Award type:** 1
- **Project period:** 2024-08-15 → 2026-07-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10953800

## Citation

> US National Institutes of Health, RePORTER application 10953800, Experiences of Parents Seeking Emergency Care for Injured Children with Special Health Care Needs (1R03TR005206-01). Retrieved via AI Analytics 2026-06-12 from https://api.ai-analytics.org/grant/nih/10953800. Licensed CC0.

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