Graduation Year
2025
Document Type
Capstone Project
Project Type
Qualitative Study
Degree Name
Master of Science in Occupational Therapy
Program
Occupational Therapy
Program Chair
Gina Tucker-Roghi, OTD, OTR/L, BCG
Faculty Advisor
Laura Greiss Hess, PhD, OTR/L
Abstract
Background: Pediatric Stroke is one of the top ten leading causes of mortality under the age of 18 years old (Gerzon et al., 2018). Survivors often face “lifelong residual neurological, motor and functional impairments” (O’Keefe et al., 2017, p. 428). Pediatric stroke literature is well anchored in the medical model, yet there is limited qualitative research examining the survivor and caregiver lived experiences, well-being, and engagement in their meaningful occupations post-stroke (Barnett et al., 2023; Champigny, 2023).
Purpose / Research Question: The purpose of this research was to examine the well-being and lived experiences of survivors and caregivers after pediatric hemorrhagic stroke (PHS). Research question: What are the well-being and occupational engagement lived experiences of family and pediatric hemorrhagic stroke (PHS) survivors in daily life post stroke?
Design/Methods: Interdisciplinary, qualitative, and phenomenological research. Semi-structured interview protocols for PHS survivors and caregivers were written with Trauma-Informed Care (TIC) principles and focused on eight aspects of well-being (social, intellectual, emotional, physical, occupational, financial, environmental, & spiritual) in the occupational contexts of home, school & community. Recruitment was completed through the UCSF Center of Excellence in Pediatric Stroke and included English and Spanish speaking caregivers and survivors. This study’s whole sample was 21 participants (N=11 PHS caregivers with two of the 11 Spanish speaking, and N=10 PHS survivors). This preliminary analysis looked at a subsample of 5 participants, 3 PHS caregivers (n=2 English and n=1 Spanish) and 2 PHS survivors.
Preliminary Findings & Implications for Occupational Therapy: The results of this study revealed a primary theme of intersectionality of multiple aspects of well-being across different iv contexts, thus impacting occupational engagement. This qualitative, interdisciplinary research displays how consideration of multiple aspects of well-being directly impacts meaningful occupational engagement and how PHS survivor and caregiver lives are often changed upon returning to their homes, schools and communities. Further this research reflects how best practices in clinical care including interdisciplinary collaboration and employment of TIC principles can be productively incorporated into qualitative research design, expanding upon the current body of PHS literature. This research also incorporates the voices of the survivors, which fills a gap in literature and broadens our understanding.
IRB Number
23-39753