Medicine and Health Sciences Commons^™

Exploring The Experience Of Sexuality And Gender During The Healthcare Transition Of The Youth With Cerebral Palsy, Umma Salma

Electronic Thesis and Dissertation Repository

Background: Transition from the pediatric to adult health care system is an important phase of healthcare for youth with cerebral palsy (CP). Sexuality and gender are two very important components of health that are mostly ignored in the healthcare transition process. It is possible that health care providers only see a client’s disability, and therefore, key aspects of sexuality and gender diversity may be ignored, or deemed irrelevant as a result of their disability status. Therefore, the purpose of our study is to explore how gender and sexuality may influence the experience of health care transition for youth with cerebral …

The Psychosocial And Physical Effects Of Therapeutic Horseback Riding For Children With Cerebral Palsy, Karen M. Pratt

Electronic Thesis and Dissertation Repository

Background: Participation in specialized adapted activities such as therapeutic horseback riding (THR) is critical for children with cerebral palsy (CP) as they are at increased risk for lower habitual physical activity levels, social exclusion and mental health conditions. The benefits of THR for children CP are unclear despite positive anecdotal evidence. Purpose: The aim of the study is to explore the effects of THR participation for children with CP across multiple domains of health (psychological, social and physical) from the children themselves. Specifically, this study explored overall wellbeing including mental health, perceived independence, social inclusion and presence of fatigue and …

A Collaborative Approach To Decision Making Through Developmental Monitoring To Provide Individualized Services For Children With Cerebral Palsy., Doreen J Bartlett, Sarah W Mccoy, Lisa A Chiarello, Lisa Avery, Barbara Galuppi, On Track Study Team

Physical Therapy Publications

In this Perspective, we suggest a process to improve physical and occupational therapists’ and families’ collaboration to provide appropriate, efficient, and effective evidence-based services to improve motor function, self-care performance, and participation in family and recreation activities for children with cerebral palsy (CP). This process is informed by 2 multisite prospective cohort studies (Move & PLAY and On Track). The heterogeneity of children with CP is described, limiting the utility of evidence from randomized controlled trials and systematic reviews to inform service planning for children with CP. An evidence-based alternative using prospective cohort studies that produce knowledge of determinants of …

Parents' Experiences And Perceptions When Classifying Their Children With Cerebral Palsy: Recommendations For Service Providers., Natalie V Scime, Doreen J Bartlett, Laura K Brunton, Robert J Palisano

Physical Therapy Publications

AIMS: This study investigated the experiences and perceptions of parents of children with cerebral palsy (CP) when classifying their children using the Gross Motor Function Classification System (GMFCS), the Manual Ability Classification System (MACS), and the Communication Function Classification System (CFCS). The second aim was to collate parents' recommendations for service providers on how to interact and communicate with families.

METHODS: A purposive sample of seven parents participating in the On Track study was recruited. Semi-structured interviews were conducted orally and were audiotaped, transcribed, and coded openly. A descriptive interpretive approach within a pragmatic perspective was used during analysis.

RESULTS: …

Construction And Validation Of The Fatigue Impact And Severity Self-Assessment For Youth And Young Adults With Cerebral Palsy., Laura K Brunton, Doreen J Bartlett

Physical Therapy Publications

Purpose: The Fatigue Impact and Severity Self-Assessment (FISSA) was created to assess the impact, severity and self-management of fatigue for individuals with cerebral palsy (CP) aged 14-31.

Methods Used: Items were generated from a review of measures and interviews with individuals with CP. Focus groups with healthcare professionals were used for item reduction. A mailed survey was conducted (n=163/367) to assess the factor structure, known-groups validity and test-retest reliability.

Results Obtained: The final measure contained 31-items in two factors and discriminated between individuals expected to have different levels of fatigue. Individuals with more functional abilities reported less fatigue (p< 0.002) and those with higher pain reported higher fatigue (p< 0.001). The FISSA was shown to have adequate test-retest reliability, ICC(3,1)=0.74 (95% CI 0.53-0.87).

Conclusions …

The Manual Ability Classification System: A Scoping Review, Deepa Jeevanantham, Emily Dyszuk, Doreen Bartlett

Physical Therapy Publications

PURPOSE: To examine the use of the Manual Ability Classification System (MACS) and to identify gaps in the literature by conducting a thorough search of existing publications from 2006 to March 2013.

METHODS: An extensive literature search included 15 databases, using the search terms "Manual Ability Classification System" or "MACS" to retrieve relevant abstracts.

RESULTS: A total of 161 articles were identified for final inclusion. The review identified literature that supports the reliability, validity, and stability of the MACS.

CONCLUSIONS: The MACS could be considered as a standard classification for children with cerebral palsy on the basis of manual abilities. …

Measuring Fatigue In Adolescents And Young Adults With Cerebral Palsy, Laura K. Brunton

Electronic Thesis and Dissertation Repository

Fatigue is a significant issue and has been estimated to affect between 30-50% of individuals with cerebral palsy (CP) in various studies; however, there is no validated measure of fatigue for this population. A systematic review revealed no one single measure with adequate psychometric properties for use with individuals with CP. As a result a new tool was created: the Fatigue Impact and Severity Self-Assessment (FISSA). Interviews were conducted with youth and young adults with CP to understand the bodily experience of living with CP and as a client-centered approach to item creation for the FISSA. Focus groups with healthcare …