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3 The Lived Experiences of Pediatric Stroke Survivors: A Qualitative Perspective on Psychosocial Outcomes and Quality of Life
- Angela Deotto, Claire Champigny, Robyn Westmacott, Karen Fergus, Mary Desrocher
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- Journal:
- Journal of the International Neuropsychological Society / Volume 29 / Issue s1 / November 2023
- Published online by Cambridge University Press:
- 21 December 2023, pp. 95-96
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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.
87 Suitability of the I-InTERACT-North Parenting Program for families with autistic children
- Rachael Lyon, Rivka Green, Angela Deotto, Giulia F Fabiano, Elizabeth Kelley, Evdokia Anagnostou, Rob Nicolson, Shari L Wade, Tricia S Williams
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- Journal:
- Journal of the International Neuropsychological Society / Volume 29 / Issue s1 / November 2023
- Published online by Cambridge University Press:
- 21 December 2023, p. 188
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- Article
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Objective:
I-InTERACT-North is a stepped-care telepsychological parenting intervention designed to promote positive parenting skills and improve child behaviour. Initially developed for children with traumatic brain injury, our pilot study has shown efficacy in increasing positive parenting skills and reducing problem behaviours for children with early brain injury (e.g., stroke, encephalopathy). Recently, the program has expanded to include children with neurodevelopmental disorders, including Autism Spectrum Disorder. Although positive parenting programs (e.g., Parent-Child Interaction Therapy) can be effective for autistic children, it is unknown whether the goals most important to these families can be addressed with IInTERACT-North program. An examination of suitability and preliminary efficacy was conducted.
Participants and Methods:Parent participants of autistic children between 3 and 9 years (n= 20) were recruited from the neonatal, neurology, psychiatry, or cardiology clinics at The Hospital for Sick Children and the Province of Ontario Neurodevelopmental Disorders (POND) Network. Top problems, as reported by parents at baseline, were analyzed qualitatively through a cross-case analysis procedure in order to identify common themes and facilitate generalizations surrounding concerning behaviours. Parent-reported intensity of their children’s top problem behaviours on a scale from 1 (“not a problem”) to 8 (“huge problem”) were quantified. To explore preliminary program efficacy, t-tests were used to compare pre- and post-intervention problems and intensity on the Eyberg Child Behavior Inventory (ECBI) (n=16).
Results:A total of 56 top problem data units were examined, with convergent thematic coding on 53 of 56 (94.6% inter-coder reliability). Four prevalent, high-agreement themes were retained: emotion dysregulation (19; 33.9%), non-compliance (12; 21.4%), sibling conflict (7; 12.5%), and inattention and hyperactivity (7; 12.5%). Average problem intensity for these themes ranged from 5.85 to 6.53 (where 8 is greatest impairment) with emotion dysregulation having the highest intensity (6.53) compared to the others. Scores on the ECBI were lower post-intervention (Intensity scale: M= 59.06, SD= 8.1; Problem scale: M= 60.69, SD= 11.5) compared to pre-intervention (Intensity scale: M= 61.19, SD= 10.4; Problem scale: M= 64.31, SD= 11.7), but small sample size precluded detecting statistical significance (p’s = .16 and .07, respectively).
Conclusions:Thematic analysis of top problems identified by parents of autistic children suggested that concerns were transdiagnostic in nature, and represent common treatment targets of the I-InTERACTNorth program. Though challenging behaviours related to restricted interests or repetitive behaviours may exist in our sample, parental behavioural goals appeared to align with the types of concerns traditionally raised by participants of the program, supporting a transdiagnostic approach. Preliminary data point to positive treatment outcomes in these families.
Chapter 13 - Stroke
- Edited by Jacobus Donders, Scott J. Hunter, University of Chicago
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- Book:
- Neuropsychological Conditions Across the Lifespan
- Published online:
- 27 July 2018
- Print publication:
- 16 August 2018, pp 244-267
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