The Effectiveness of Participation-focused Interventions on Body Functions of Youth With Physical Disabilities
Condition: Cerebral Palsy; Spina Bifida; Muscular Dystrophies; Musculoskeletal Disorder
MeSH terms: Muscular Dystrophies; Musculoskeletal Diseases; Cerebral Palsy; Spinal Dysraphism
Study type: Interventional

Summary: 
      Youth with physical disabilities face greater restrictions to participation in
      community-based activities than their typically developing peers, which can lead to poor
      health outcomes. Emerging treatment approaches aimed at improving activity and participation
      have shifted from focusing only on impaired body functions towards the performance of
      functionally meaningful activities within the youth's natural environment. It is unclear,
      however, whether targeting intervention at the activity/participation level can, at the same
      time, result in improvement of personal functional skills (e.g., reaching) and body functions
      (e.g., range of motion) -components also important to address and maintain within the
      rehabilitation process. Together with key community-based stakeholders including
      youth/parents, clinicians, and policy-makers, the investigators plan, therefore, to examine
      whether engaging in a 6-week community based activity (e.g., joining a sledge hockey team,
      boccia) can lead to a significant improvement in three key body functions: motor, cognitive
      and affective functions. Eight participants with physical disabilities will take part in the
      study and engage in an activity program of their own choice. Changes in their body functions
      (e.g., movement-related functions, attention, behavior, mood) will be measured multiple times
      before, during and after the engagement in an individualized activity/program. Findings of
      this pilot study analyzed with input from key stakeholders can advance the investigators
      understanding about methods for testing complex and unique individual-based interventions.
      This can guide clinicians, families and policy-makers to select effective approaches that not
      only promote participation but can also facilitate additional (motor and mental) benefits
      from one single intervention. Such findings may also reduce the burdens on the healthcare
      system as well as on the youth and families.
    

Detailed description: 
      Youth with physical disabilities experience restrictions to participation in community-based
      activities, which can lead to poor health outcomes. Currently, activity-based treatment
      approaches that are client-centered and implemented in the youth's natural environment are
      considered recommended practice. It is unclear, however, whether targeting intervention at
      the activity and participation level (e.g. playing boccia) can result in improvement of body
      functions (e.g., joint mobility, balance) as well as in participation - two key outcomes of
      pediatric rehabilitation programs. Research suggests that the opportunity to practice
      therapist-prescribed exercise programs is positively associated with physical gains. However,
      the impact of participation in a chosen real-life activity that is meaningful to the youth on
      a range of body functions has not yet been established and effective methods for testing
      complex individual-based interventions and outcomes are lacking. With funding received from
      the Canadian Institutes of Health Research, the investigators have proven the effectiveness
      of the PREP intervention, i.e., Pathways and Resources for Engagement and Participation, in
      promoting youth participation in meaningful activities across two provinces. Using the PREP
      approach, the purpose of this pilot study is to 1) employ an interrupted time series (ITS)
      design in order to generate preliminary evidence on the effectiveness of participants
      engagement in a 6-week community-based activity program (e.g., team sledge hockey) on 3 body
      functions (i.e., motor, cognitive and affective) as well as on the performance of the
      selected activity. An 18-week interrupted time series design with multiple baselines across 8
      participants with physical disabilities (e.g., cerebral palsy, spina bifida) will be
      employed. Each activity, individually selected by the participants, will be analyzed using
      the task analysis approach in order to identify the underlying body functions necessary for
      the chosen activity. These functions, i.e., motor (measured using the Spinal Alignment and
      Range of Motion Measure, the Functional Reach Test, the Trunk Impairment Scale and the Jamar
      dynamometer), cognitive and affective (using the Behavior Assessment System for Children),
      will then be measured multiple times throughout the entire study, resulting in overall 32
      trajectories of change in body functions (8 participants X 3 body functions) and additional 8
      trajectories representing change in activity performance (using the Canadian Occupational
      Performance Measure). Two experts will independently analyze each trajectory using visual
      inspection and an innovative analytical solution, i.e., a combination of segmented regression
      and mixed-effect modelling, will be performed to estimate the overall effectiveness of the
      intervention across participants. This interdisciplinary research team, including three
      researchers in the field of childhood disability (occupational therapy, physical therapy and
      pediatric medicine), has partnered with seven key stakeholders and will work collaboratively
      throughout the research process. This early study in the area will build knowledge about
      alternative clinical trials that can generate evidence applicable to practice. Findings can
      eventually inform decision-making by guiding clinicians, families and policy-makers in
      appraising the benefits of participation-based therapies on improving functional capacities
      and actual performance of meaningful life activities. Describing the multiple benefits
      potentially generated by one single intervention can facilitate the development of efficient
      youth-engaging therapies, and thereby contributing to the improvement of the provision of
      pediatric rehabilitation services.
    

Intervention name(s): Engagement in 6-week community-based activity program
Intervention type(s): Behavioral
Intervention description(s): Participants engage in a 6-week community-based activity program of their choice. In order to engage in the selected activity, an Occupational Therapist (OT) will meet with each youth in their home. Using the PREP 5 steps (Make goals; Map out a plan; Make it happen; Measure the process and outcomes; Move forward) the youth will choose a community program. The OT will then search for the appropriate program, identify and remove potential environmental barriers for participation in that activity (e.g., accessibility, equipment) and educate program instructors regarding the youth's specific needs. This process, which includes up to 12 hours of working with the OT, will set the stage for enrolment of the youth in a community program for a period of 6 weeks - the actual intervention phase.
Other intervention name(s): Pathways and Resources for Engagement and Participation
Intervention model: Single Group Assignment
Intervention model description: An 18-week individual-based interrupted time series design with multiple baselines across 8 participants will be employed.
Masking: None (Open Label)
Primary purpose: Treatment
Keywords: participation; environmental barriers; youth; disabilities; body functions