Date Presented 03/22/24
This qualitative research examined lived experiences of children & families post pediatric hemorrhagic stroke and occupational engagement across naturalistic contexts. Findings challenge OT to think beyond traditional clinical and research models.
Primary Author and Speaker: Louis Barnett
Additional Authors and Speakers: Alma Martinez Pamatz, Deana Vander Meulen, Sabrina Montano, Charissa Thompson
Contributing Authors: Laura GREISS Hess
BACKGROUND: Pediatric hemorrhagic stroke (PHS) impacts occupational functioning for children and families. PHS research has focused on medical/rehabilitation models specifically, the patient’s impairments. Little work has focused on occupational performance or child/family issues.
PURPOSE: Examine lived experiences and occupational impact to life post PHS. Research questions: (1) What are the lived experiences (including opportunities, barriers, and challenges) of families with children who have experienced PHS faced after the transition from acute care to life at home, school, and in the community? (2) How can an in-depth examination of these phenomena inform child/family-centered care in OT and further collaboration with interprofessional teams of professionals in partnership with families?
DESIGN/METHOD: Qualitative research with 30-60 minute semi-structured interview. Participants were guardians of a child post PHS. Recruitment from UCSF Center of Excellence Hemorrhagic Stroke. Interviews recorded, transcribed, and analyzed using Dedoose. Interviews focused on PHS impacts in the contexts of home, school, and community. Current sample is 6 families post PHS.
RESULTS, CONCLUSION & IMPACT: Preliminary results include themes for impacting occupational engagement. Home themes include ‘patience and understanding,’ with understanding of family members’ current emotions being crucial. School themes include ‘feeling supported vs challenged,’ speaking to a wide range of experiences with schools. Community themes include ‘compassion vs stigma’ and new impact for families living with a disability in an ableist society. Home, school and community occupational engagement has impacts beyond traditional medical/rehab models. Our research supports considerations for OTs as members of interprofessional teams in support of children and families in their meaningful occupational engagement post PHS.
References
Cárdenas, J. F., Rho, J. M., & Kirton, A. (2011). Pediatric stroke. Child’s Nervous System, 27(9), 1375–1390. https://doi.org/10.1007/s00381-010-1366-9
Johns Hopkins Medicine. (2023). Types of Stroke. The Johns Hopkins University, The Johns Hopkins Hospital, and Johns Hopkins Health System. https://www.hopkinsmedicine.org/health/conditions-and-diseases/stroke/types-of-stroke
Learn about brain injury. Learn About Brain Injuries | Shepherd Center Rehabilitation. (n.d.). https://www.shepherd.org/patient-programs/brain-injury/about
Malone, L. A., & Felling, R. J. (2020). Pediatric Stroke: Unique Implications of the Immature Brain on Injury and Recovery. Pediatric Neurology, 102, 3–9. https://doi.org/10.1016/j.pediatrneurol.2019.06.016
