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Description

Children with chronic neurological conditions and their families experience various challenges that impact their quality of life and occupational participation as they reintegrate back into their communities (Dumas & Grajo, 2021; Taib et al., 2021). However, rehabilitation for children with chronic neurological conditions focuses on addressing functional impairments and self-care activities rather than transitioning home (Diener et al., 2021). Therefore, children and their families are in need of resources and interventions to address their occupational impact as they return to their occupations (Diener et al., 2021). This capstone research study explored the lived experiences of children with chronic neurological conditions and their families, and identified their occupational impact as they reintegrated back into their communities. A mixed-methods research design was implemented to gather quantitative and qualitative information on caregivers’ perspectives on their children's and their own experiences, along with their occupational impact in self-care, work, education, social participation, and leisure. Twenty-one participants completed online surveys and the University of Washington Caregiver Stress Scale (Amtmann et al., 2020). Nine participants completed an optional virtual interview and the Canadian Occupational Performance Measure (Law et al., 2014). Following data analysis, the results of this study supported that children with chronic neurological conditions and their families experience negative impacts while participating in their occupations. This research study contributes to the profession of occupational therapy by providing an increased understanding of the experiences of children with chronic neurological conditions and their families as they reintegrate back into their communities.

Publication Date

Fall 12-8-2022

Publisher

University of St. Augustine for Health Sciences

Keywords

caregivers, caregiver stress, community reintegration, neurological conditions, occupational impact, occupational therapy, pediatrics

Medical Subject Headings

Caregivers, Pediatrrics, Neurology, Self Care, Social Participation, Leisure Activities, Occupational Therapy, Surveys and Questionnaires

Disciplines

Neuroscience and Neurobiology | Occupational Therapy | Social Work

Comments

Poster presented at the Virtual OTD Capstone Symposium, held online at the University of St. Augustine for Health Sciences December 8, 2022

The Experiences of Children with Neurological Conditions and Families

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