3 The Lived Experiences of Pediatric Stroke Survivors: A Qualitative Perspective on Psychosocial Outcomes and Quality of Life

• Published in: Journal of the International Neuropsychological Society Vol. 29; no. s1; pp. 95 - 96
• Main Authors: Deotto, Angela, Champigny, Claire, Westmacott, Robyn, Fergus, Karen, Desrocher, Mary
• Format: Journal Article
• Language: English
• Published: New York, USA Cambridge University Press 01.11.2023
• Subjects: Acquired Brain Injury (TBI/Cerebrovascular Injury & Disease - Child); Anxiety; Brain injury; Children; Coding; Cognitive ability; Disability; Emotional behavior; Environmental factors; Identity; Ischemia; Long-term effects; Pediatrics; Poster Session 01: Medical | Neurological Disorders | Neuropsychiatry | Psychopharmacology; Psychological assessment; Qualitative research; Quality of life; Social discrimination learning; Social interactions; Stroke; quality of life; anxiety; stroke
• ISSN: 1355-6177; 1469-7661
• DOI: 10.1017/S1355617723001856

Objective: Despite knowledge concerning the prevalence and adverse consequences of pediatric stroke, there is limited awareness of the immediate and long-term effects on social-emotional functioning and psychological adjustment. Evidence from the broader childhood literature suggests that young individuals living with disabilities or neurological conditions are at considerably greater risk for emotional and behavioral concerns and lower quality of life. Qualitative research methodology can elucidate personal and subjective aspects of experience that cannot be entirely represented through quantitative measures. Although the parent experience of pediatric stroke has been qualitatively investigated, we endeavored to fill a gap in the pediatric stroke literature by focusing on the youth voice. The current project aimed to qualitatively explore emotional, behavioral, and social outcomes in pediatric stroke and identify personal and environmental factors that can influence psychological risk and resilience. Participants and Methods: Individual interviews were conducted with 14 children, aged 8 to 18 years, with a history of ischemic stroke. The semi-structured interview protocol aimed to capture the lived experience of survivors and encompassed open-ended questions about daily life, memories, perceptions, and psychosocial experiences. Interviews spanned 40-60 minutes in length, were audio recorded, transcribed verbatim, and qualitatively analyzed using reflexive Thematic Analysis methodology. Coding, theme generation, and data visualization were completed using NVivo12 software. Results: Participants discussed their views and understanding of their stroke, the perceived impact of stroke on their daily life, and the meaning-making process surrounding this experience. Children shared their perceptions regarding their abilities, challenges, life circumstances, aspirations, and relations to peers. Prominent themes encompassed shyness and social anxiety, cognitive and learning troubles, test anxiety, concealing feelings of sadness, the stigma of physical disability and its impact on social participation, bullying, and loneliness/isolation. Insight into adaptive coping mechanisms was present, as was emphasis on family closeness and the importance of supportive peers. Participants described feeling unique and were proud of their values and personal identity. Gratitude was expressed regarding stroke medical care and rehabilitative services, with an emergent theme surrounding the desire to give back to society. Conclusions: Taken together, our qualitative study findings illustrate the profound impact that pediatric stroke can have on children’s emotional experiences, personal identity, self-efficacy, learning, behavior, and psychosocial functioning. Despite these challenges, an enormous degree of resiliency was also demonstrated in youth’s insights into coping and adaptation to challenge. Our findings speak to the importance of psychological assessment and treatment planning surrounding internalizing symptoms in children with stroke. Given the potential for pervasive changes in various aspects of daily life, a comprehensive understanding of the personal psychological experiences and perceptions of pediatric stroke patients is essential, as it will facilitate opportunity for timely interventions that can improve coping and adaptive outcome. Implications will be discussed with regard to empowering pediatric stroke survivors, enhancing public education efforts about childhood acquired brain injury, and reducing stigma associated with disability and use of required supports.