Electronic Thesis and Dissertation Repository

Thesis Format

Monograph

Degree

Master of Science

Program

Health and Rehabilitation Sciences

Supervisor

Brunton, Laura

Abstract

The purpose of this study was to identify healthcare concerns of young people and adults with cerebral palsy (CP) in the Transitional and Lifelong Care (TLC) program, and determine whether there were patient factors associated with the number of healthcare concerns. A retrospective chart review of initial TLC consultations was completed (n = 241). Descriptive and inferential statistics were used to explore and explain patterns in the sample population. The participants reported a high number of concerns of varied nature that were not easily predicted by condition-specific or demographic variables. This study may better healthcare delivery for young people and adults with CP by raising awareness of the health needs of this population, and potentially leading to the creation of intervention and monitoring guidelines.Furthermore, this research has strong potential to influence priority setting in the development of adult-based clinical programs and contribute to best practices for effective transitional care.

Summary for Lay Audience

Cerebral palsy (CP) is a motor disorder that is the leading cause of physical disability in children, and the symptoms of CP differ from person to person. Despite the differences in symptoms experienced, people with CP may share similar healthcare needs. The Transitional and Lifelong Care (TLC) program at Parkwood Institute, St. Joseph’s Health Care London, is made up of a multidisciplinary team that provides ongoing, coordinated care to persons with complex, childhood-onset disabilities, in particular CP. The main purpose of this study was to identify healthcare concerns of young people and adults with CP in the TLC program and determine whether age, sex, functional ability level, and topographical distribution of impairment were associated with the number of healthcare concerns. Based on the 241 study participants, we found that the most prevalent healthcare concerns were care coordination, medications, and neurologic. Only age was associated with the number of healthcare concerns. These findings may better TLC healthcare delivery for young people and adults with CP by raising awareness of the health needs of this population. This research may also help influence priority setting in the development of adult-based clinical programs and contribute to best practices for effective transitional care.

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