Pediatric Hemorrhagic Stroke: Early vs. Late Trajectories

Authors

Annika Uemura, Dominican University of CaliforniaFollow
Clarissa Junio, Dominican University of CaliforniaFollow
Katie Roghi, Dominican University of CaliforniaFollow
Isandla Blanc, Dominican University of CaliforniaFollow

Publication Year

2025

Faculty Advisor

Laura Greiss Hess, PhD, OTR/L and Kitsum Li, OTD, OTR/L

Program

Occupational Therapy

Community Partner

UCSF and the Bugher Foundation

Abstract

Background: Pediatric Hemorrhagic Stroke (PHS) is a top ten cause of death in children, with approximately a 10%-25% mortality rate. PHS can result in lifelong disability with impacts in the home, school and community contexts. PHS has primarily been meaningfully researched within the medical model, yet few studies employ qualitative methods utilizing the principles of Trauma Informed Care (TIC) to study the lived experiences of well-being through an occupation-centered lens.

Purpose/Research Question: The purpose of this research was to address the current literature and methods gaps on the lived experience phenomenon of PHS survivors and their caregivers. Research question: Are there differences in occupational impact and well-being between early and late recovery trajectories of PHS as experienced by survivors and caregivers.

Design/Methods: This is a continuation study with the Bugher Foundation and in partnership with UCSF. Utilizing a qualitative phenomenological research design, our study analyzed pre-existing data collected through semi-structured interviews. All interviews were transcribed verbatim, removed of personal identifiers, and pseudonyms were assigned. Data was coded using the constant comparison method in Dedoose to 100% consensus among the research team to ensure reliability and rigor.

Findings & Implications for Occupational Therapy: Our findings suggested that well-being impacts of PHS are multifaceted, non-linear, and significant across early and late trajectory groups. PHS impacts multiple areas of well-being, with each person experiencing unique ripple effects that influence engagement in the home, school, and community. Emotional well-being emerged as a central well-being theme impacting all areas of well-being. Findings highlight the need for interprofessional healthcare professionals including OTs and research teams to address the layered and multidimensional impact of PHS on survivors and caregivers across the recovery trajectory over time.