Abstract
Our phenomenological research fills a gap by examining lived experiences of caregivers and survivors of pediatric stroke. Findings revealed intersections between well-being and occupational engagement that can inform OTs in interdisciplinary care.
Primary Author and Speaker: Sophia Bonk
Additional Authors and Speakers: Ashley Palacios, Sydney Spina, Dylan Wallis, Jason Wong
Contributing Authors: Christine Fox, Laura Greiss Hess, Kathryn C. Nesbit, Melinda Schneider
Qualitative studies exploring lived experiences of children and families after pediatric hemorrhagic stroke (HS) are needed in medical literature.1 Research aims were informed by OT philosophy and practice. Our research question was, what are the well-being and occupational engagement lived experiences of family and pediatric HS survivors in daily life? We were a multi-site, interdisciplinary, collaborative research team supported by the Bugher foundation. Phenomenological research. Recruitment through UCSF Center of Excellence in Pediatric Stroke. Inclusion criteria family: Caregivers of pediatric HS survivors. Inclusion criteria HS survivors: 13+ at interview, HS before the age of 18. English or Spanish speaking. Trauma informed care and an occupation-centered lens informed interview design.2,3 Interviews focused on eight aspects of well-being. Data collected via 60 minute semi-structured Zoom interviews transcribed verbatim. De-identified transcripts coded in Dedoose. Constant comparison method4 and consensus across researchers for rigor. Coding questions, axial coding and themes discussed by the research team. Major themes illustrated how well-being intersects with occupational engagement. First, changes in emotional well-being impacted school engagement. Daisy shared, ‘I get so nervous when they leave the house and I now homeschool all 3 of my youngest.’ Another theme was positive social connection impacting social well-being and community engagement. Tulip stated, ‘It’s created closer bonds with our community, neighbors, her school friends and members of our extended family.’ Preliminary findings address our research question, revealing intersections between well-being and occupational engagement. Impact Statement: OTs are important collaborators in interdisciplinary qualitative research, broadening the scope of the medical literature to include well-being and occupational engagement, thus informing the care for survivors and families after a HS.
Champigny, C. M., Feldman, S. J., Westmacott, R., Wojtowicz, M., Aurin, C., Dlamini, N., Dirks, P., & Desrocher, M. (2023). Adjusting to life after pediatric stroke: A qualitative study. Developmental Medicine & Child Neurology, 65(10), 1357–1365. https://doi-org.dominican.idm.oclc.org/10.1111/dmcn.15556
Substance Abuse and Mental Health Service Administration. (2014). Concept of Trauma and Guidance for a Trauma-Informed Approach. SAMHSA. https://store.samhsa.gov/sites/default/files/sma14-4884.pdf
Barnett, L., Martinez Pamatz, A., Montano, S., Thompson, C., Vander Meulen, D. & Hess, L. G. (2024, April). Life After Pediatric Hemorrhagic Stroke: Family-Centered Outcomes [Poster Presentation]. American Occupational Therapy Association Conference, Orlando, FL, United States. https://doi.org/10.33015/dominican.edu/2024.OT.08
Dye, J. F., Schatz, I. M., Rosenberg, B. A., & Coleman, S. T. (2000). Constant Comparison Method: A Kaleidoscope of Data. The Qualitative Report, 4(1), 1–9. http://nsuworks.nova.edu/tqr/vol4/iss1/8