Life after Pediatric Hemorrhagic Stroke: Survivor-Caregiver Dyad Coping Mechanisms, Challenges, and Supports Related to Transition-to-School Experiences

Authors

Aveen Dulai, Dominican University of CaliforniaFollow
Karen Fernandez, Dominican University of CaliforniaFollow
Carolyn Nguyen, Dominican University of CaliforniaFollow

Publication Year

2025

Faculty Advisor

Kitsum Li, OTD, OTR/L, CSRS

Program

Occupational Therapy

Community Partner

UCSF and the Bugher Foundation

Abstract

Background: Pediatric Hemorrhagic stroke (PHS) may have lasting cognitive and physical deficits that impact academic performance and daily functioning. There is limited insight into caregiver-child dyad perspectives during the transition back to school post-PHS.

Purpose: The purpose of this study is to gain greater insight into the dyad’s transitional experience back-to-school post-PHS. This study explores the barriers and access to support from the dyad perspective that either facilitated or negatively impacted the survivor’s re-engagement in school occupations after PHS.

Design/Methods: The current phenomenological qualitative study uses secondary data from Bonk et al. (2024), which utilized recorded interviews to examine the lived experiences of children with PHS and their caregivers post-PHS. Recruitment of participants was through the UCSF Center of Excellence in Pediatric Stroke. Interviews were transcribed verbatim and Dedoose software was used to complete coding and theming.

Results, Implications for Occupational Therapy, & Conclusion: Through constant comparison method and rigorous discussion amongst the student researchers and faculty member, five themes were identified: (1) Residual Impairments Post-PHS, (2) Accommodations Leading to Social Isolation, (3) Misunderstanding and Lack of Empathy, (4) School accommodations, and (5) Positive Support from School Staff and Peers. This research shows that there are two ends of the continuum of the dyad experience during the back-to-school transition that have both positive and negative impacts. Insights to this research reveal that there is room for occupational therapy expertise to empower caregivers to advocate and educate school staff, as well as aid survivors in finding strategies to navigate the school environment for a smooth transition back-to-school post-PHS.