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Power mobility : measuring participation in everyday life for children benefiting from power mobility… Field, Debra Ann 2016

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POWER MOBILITY: MEASURING PARTICIPATION IN EVERYDAY LIFE FOR CHILDREN BENEFITING FROM POWER MOBILITY USE  by  Debra Ann Field  BScOT, The University of Toronto, 1984 MHSc OT, The University of Indianapolis, 2000  A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF DOCTOR OF PHILOSOPHY in THE FACULTY OF GRADUATE AND POSTDOCTORAL STUDIES (Rehabilitation Sciences) THE UNIVERSITY OF BRITISH COLUMBIA (Vancouver) June 2016  © Debra Ann Field, 2016    ii Abstract  Independent mobility is vital for daily life, with emerging evidence suggesting it is an important foundation for overall development and life-long learning. However, children with mobility limitations are at risk for participation restrictions. Many believe that power mobility (PM) use (typically wheelchairs) makes a difference in children’s ability to participate in daily life, but research evidence is limited.  Purpose: To advance understanding of how children (under 18 years) use PM to engage in meaningful life situations and to establish feasible research methods with reliable and valid measurement tools to investigate PM’s impact on children’s ability to participate.   Methods: A systematic review identified and critically appraised participation tools appropriate for use; a four-round online modified Delphi survey advanced understanding of what participation-related information is important to measure and evaluated suitability of participation tools; and a feasibility study using an interrupted time series design examined process, resources, management and scientific indicators with children using PM.   Results: Twenty potential participation tools were identified. Twenty-one elements describing the ‘who, what, where, when and how’ of measuring participation for children using PM achieved consensus from 74 parents, therapists and researchers. Then panelists used these elements to rank 13 participation tools, with six demonstrating suitability. Feasibility of conducting longitudinal research was examined with a sample of 32 children, and their everyday   iii participation was described using three tools. Findings provided reliability and validity evidence, including initial responsiveness of tools for children needing PM. Change in participation was measured over 5 occasions within 4 months for 13/32 children receiving new PM devices.   Conclusion: Employing integrative knowledge exchange, participation elements important to measure for children using PM, along with potential participation tools relating to these elements were identified to explore participation outcomes. Feasibility for larger, multi-site studies was established along with preliminary evidence of three participation tools’ measurement properties with children using PM and changes in participation outcomes following receipt of a new PM device. This thesis has provided foundational evidence on how children using PM participate in everyday life, and importantly provided a crucial underpinning for further discussions and investigations relevant to this topic.      iv Preface  The research for this dissertation was coordinated at the Rehabilitation Research Program at GF Strong Rehabilitation Centre, in collaboration with the Therapy Department at Sunny Hill Health Centre for Children, both in Vancouver, British Columbia (BC). The studies and associated methods that comprise this dissertation were developed by the student (Debra Field (DF)) in consultation with her supervisory committee, including William C. Miller (WCM), supervisor, and committee members Tal Jarus (TJ) and Stephen Ryan (SR). In addition, Lori Roxborough (LR), combined trained occupational and physical therapist, and Roslyn Livingstone (RL), occupational therapist, from Sunny Hill Health Centre for Children were collaborators on studies associated with Chapters 3 through 5 (LR) and Chapters 4 and 5 (RL). Studies associated with Chapters 4 and 5 involved therapists at Sunny Hill Health Centre for Children (coordinated by LR, Professional Practice Leader), and at BC Children’s Hospital (coordinated by Susan Garret, occupational therapist and Professional Practice Leader). Studies associated with Chapters 4 and 5 also involved occupational and physical therapists at the Centre for Child Development in Surrey BC (coordinated by Karen Edwards, occupational therapist and Director of Occupational Therapy) and Queen Alexandra Centre for Children’s Health in Victoria, BC (coordinated by Sharon Montgomery, occupational therapist and Clinical Leader). Sharon was the primary investigator for the Vancouver Island Health Authority. Formal approval was provided by School District No. 67 (Okanagan Skaha) Superintendent Wendy Hyer and School Board, in Penticton BC, to carry out studies associated with Chapters 4 and 5 within the school district in collaboration with Katy Cox, occupational therapist. Therapists at other child development   v centres and school districts around the Lower Mainland, Vancouver Island and Okanagan regions were also involved with recruitment and knowledge dissemination activities.   Ethics approval for Chapter 3 was obtained from the University of British Columbia, Children’s and Women’s Health Centre of British Columbia Research Ethics Board (UBC C&W REB) (certificate #: CW12-0065 / H12-00375) and Vancouver Coastal Health Research Institute (VCHRI) (certificate #: V12-00375). Additionally ethics approval was obtained from the Centre for Interdisciplinary Research in Rehabilitation of Greater Montreal to gain access to staff and families at the MAB-Mackay Rehabilitation Centre (certificate #: CRIR-746-0712). Ethics for the study associated with chapters 4 and 5 was obtained from UBC C&W REB (certificate #: CW13-0271 / H13-02610) and VCHRI (certificate #: V13-02610). In addition, ethics approval was obtained from Island Health Health Research Ethics Board (certificate #: BC2014-106).  Versions of chapters 2 and 3 have been published in peer-reviewed journals while versions of chapters 4 and 5 will be submitted for review in future. Copyright permissions of previously published works included in this dissertation, including tables and figures, are covered by the Copyright Transfer Agreement.   A version of chapter 2 has been published by Elsevier Inc.: Field DA, Miller WC, Ryan SE, Jarus T, Abundo A. (2016) Measuring participation for children and youth with power mobility needs: a systematic review of potential health measurement tools. Archives of Physical Medicine and Rehabilitation, 97:462-77; first published on-line Sept 10, 2015 [Epub ahead of print].  DOI: 10.1016/j.apmr.2015.08.428.    vi A version of chapter 3 has been published as two articles. The first article by John Wiley & Sons Inc.: Field DA, Miller WC, Jarus T, Ryan SE, Roxborough L. (2014). Important elements of measuring participation for children who need or use power mobility: a modified Delphi survey. Developmental Medicine and Child Neurology, 57(6): 556-563; first published on-line Dec 15, 2014 [Epub ahead of print]. DOI: 10.1111/dmcn.12645. The second article by Informa Healthcare UK. Ltd.: Field D, Miller WC, Jarus T, Ryan SE, Roxborough L. (2015). Exploring suitable participation tools for children who need or use power mobility: a modified Delphi survey. Developmental Neurorehabilitation, 0, 1-15. First published on-line Mar 31, 2015 [Epub ahead of print] doi:10.3109/17518423.2015.1004763.   DF and WCM conceptualized each of the studies and developed the research designs in consultation with TJ and SR. DF coordinated all aspects of the studies, completed data collection, data analyses, and wrote first drafts and revisions of all chapters and manuscripts. WCM was primary investigator and supervised all research studies, analyzed the data, contributed to interpretation of results, and edited the chapters/manuscripts. TJ and SR were involved in the early stages of thesis development, study formation, review and editing of all chapters and manuscripts. In addition LR, as lead investigator at Sunny Hill Health Centre for Children, was involved in study development and dissemination activities associated with Chapters 4 and 5, as well as review and editing of manuscripts associated with Chapter 3. RL, as the primary knowledge user, was involved in study development and dissemination activities associated with Chapters 4 and 5. Alex Abundo, a 4th year undergraduate workstudy student in the Rehabilitation Research Program at GF Strong Rehabilitation Centre acted as second reviewer for Chapter 2. He also reviewed and edited the manuscript associated with Chapter 2.    vii Table of Contents  Abstract .......................................................................................................................................... ii Preface ........................................................................................................................................... iv Table of Contents ........................................................................................................................ vii List of Tables ............................................................................................................................. xvii List of Figures ........................................................................................................................... xviii List of Abbreviations ................................................................................................................. xix Glossary ........................................................................................................................................xx Acknowledgements .................................................................................................................. xxiii Dedication ...................................................................................................................................xxv  Introduction ................................................................................................................1 Chapter 1:1.1 Impetus for this Research................................................................................................... 1 1.2 Power Mobility Use with Children .................................................................................... 3 1.2.1 Prevalence and Need ................................................................................................... 3 1.2.2 Power Mobility Provision and Costs .......................................................................... 4 1.2.3 Finding the ‘Just Right’ Match ................................................................................... 5 1.3 Participation in Everyday Life ........................................................................................... 6 1.3.1 The International Classification of Functioning, Disability and Health (ICF) ........... 6 1.3.2 Children With and Without Physical Disabilities ....................................................... 7 1.3.3 Children Who Benefit from Power Mobility .............................................................. 9 1.4 Measuring Participation in Everyday Life of Children Needing Power Mobility ........... 11 1.4.1 Paediatric Power Mobility Literature and Clinical Practice ..................................... 11   viii 1.4.2 Importance of Measurement Properties .................................................................... 12 1.4.3 Applying Knowledge of Measurement Properties .................................................... 14 1.5 More on Conceptual Frameworks and Theory ................................................................ 16 1.5.1 Limitations to the ICF ............................................................................................... 16 1.5.2 Paediatric Participation Conceptual Models ............................................................. 17 1.5.3 Conceptual Models Specific to Those Using Power Mobility.................................. 18 1.6 Dissertation Purpose ........................................................................................................ 20  Measuring Participation in Everyday Life of Children Using Power Mobility: A Chapter 2:Systematic Review of Potential Measurement Tools ................................................................32 2.1 Introduction ...................................................................................................................... 32 2.1.1 Purpose ...................................................................................................................... 35 2.2 Method ............................................................................................................................. 35 2.2.1 Search Strategy ......................................................................................................... 35 2.2.2 Study and Tool Selection .......................................................................................... 36 2.2.3 Data Extraction ......................................................................................................... 37 2.2.4 Quality Assessment ................................................................................................... 37 2.3 Results .............................................................................................................................. 38 2.3.1 Study and Measurement Tool Characteristics .......................................................... 38 2.3.2 Measurement Properties............................................................................................ 40 2.3.2.1 Reliability Evidence ........................................................................................... 40 2.3.2.2 Validity Evidence............................................................................................... 40 2.3.3 Quality Ratings ......................................................................................................... 41 2.3.3.1 Reliability Ratings ............................................................................................. 41   ix 2.3.3.2 Validity Ratings ................................................................................................. 42 2.4 Discussion ........................................................................................................................ 43 2.4.1 Participation Tools .................................................................................................... 43 2.4.2 Quality Ratings, Measurement Properties and Clinical Usefulness ......................... 44 2.4.3 Application to Paediatric Power Mobility ................................................................ 46 2.4.4 Limitations ................................................................................................................ 47 2.5 Conclusion ....................................................................................................................... 48  Reaching Expert Consensus on Participation Outcomes Important to Measure Chapter 3:for Children Using Power Mobility and Determining Suitable Measurement Tools ............65 3.1 Introduction ...................................................................................................................... 65 3.1.1 Purpose ...................................................................................................................... 67 3.2 Method ............................................................................................................................. 68 3.2.1 Design ....................................................................................................................... 68 3.2.2 Participants ................................................................................................................ 69 3.2.3 Sampling Procedure .................................................................................................. 70 3.2.4 Data Collection ......................................................................................................... 71 3.2.5 Data Analyses ........................................................................................................... 75 3.3 Results .............................................................................................................................. 76 3.3.1 Round One ................................................................................................................ 76 3.3.2 Round Two................................................................................................................ 77 3.3.3 Round Three.............................................................................................................. 77 3.3.4 Round Four ............................................................................................................... 77 3.4 Discussion ........................................................................................................................ 79   x 3.4.1 Elements of Participation .......................................................................................... 80 3.4.2 Measurement Tools ................................................................................................... 82 3.4.3 Limitations ................................................................................................................ 84 3.5 Conclusion ....................................................................................................................... 87  Establishing Measurement Properties of Participation Tools for Children Using Chapter 4:Power Mobility ...........................................................................................................................109 4.1 Introduction .................................................................................................................... 109 4.1.1 Purpose .................................................................................................................... 113 4.2 Method ........................................................................................................................... 113 4.2.1 Research Design...................................................................................................... 113 4.2.2 Participants .............................................................................................................. 114 4.2.2.1 Sampling Procedure ......................................................................................... 114 4.2.2.2 Inclusion Criteria ............................................................................................. 116 4.2.2.3 Exclusion Criteria ............................................................................................ 117 4.2.3 Study Protocol ......................................................................................................... 117 4.2.3.1 Participation Measurement Tools .................................................................... 117 4.2.3.1.1 Participation and Environment Measure for Children and Youth ............ 117 4.2.3.1.2 Children’s Assessment of Participation and Enjoyment ........................... 118 4.2.3.1.3 Wheelchair Outcome Measure for Young People .................................... 119 4.2.3.2 Descriptive Participant Information ................................................................. 121 4.2.3.2.1 Demographic Profile of Participants ............................................................ 121 4.2.3.2.2 Gross Motor Function Classification System (GMFCS) ............................. 121 4.2.3.2.3 Manual Ability Classification Scale (MACS) ............................................. 121   xi 4.2.3.2.1 Functional Mobility Scale (FMS) ............................................................. 122 4.2.3.2.2 Level of Sitting Scale (LSS) ..................................................................... 122 4.2.3.2.3 Modified Mini-Mental Status Exam (MMSE) .......................................... 123 4.2.3.2.4 Assessment of Learning Powered Mobility Use (ALP) ........................... 123 4.2.4 Data Collection ....................................................................................................... 123 4.2.5 Data Analyses ......................................................................................................... 125 4.2.5.1 Sample Size Calculation .................................................................................. 130 4.3 Results ............................................................................................................................ 130 4.3.1 Reliability ................................................................................................................ 131 4.3.1.1 Internal Consistency......................................................................................... 131 4.3.1.2 Test Retest Reliability ...................................................................................... 132 4.3.2 Validity ................................................................................................................... 133 4.3.2.1 Appropriateness of Tools for Children Benefiting from Power Mobility ....... 133 4.3.2.2 Degree of Association Among the Three Participation Tools ......................... 133 4.3.2.3 Differences Between Groups on Selected Variables ....................................... 134 4.3.2.4 Preliminary Investigation into the Tools’ Usefulness to Detect Change ......... 135 4.4 Discussion ...................................................................................................................... 136 4.4.1 Reliability Evidence ................................................................................................ 136 4.4.1.1 Evidence of Internal Consistency .................................................................... 136 4.4.1.2 Evidence of Test Retest Reliability.................................................................. 138 4.4.2 Validity Evidence.................................................................................................... 140 4.4.2.1 Appropriateness of the Tools for Children Using Power Mobility.................. 140 4.4.2.2 Degree of Association Among the Three Participation Tools ......................... 142   xii 4.4.2.3 Differences Between Groups on Selected Variables ....................................... 143 4.4.2.4 Preliminary Investigation into the Tools’ Usefulness to Detect Change ......... 145 4.4.3 Limitations .............................................................................................................. 146 4.5 Conclusion ..................................................................................................................... 147  Determining Feasibility of Conducting Participation-Related Research with Chapter 5:Children Using Power Mobility ................................................................................................158 5.1 Introduction .................................................................................................................... 158 5.1.1 Purpose .................................................................................................................... 159 5.2 Method ........................................................................................................................... 159 5.2.1 Research Design...................................................................................................... 159 5.2.2 Participants .............................................................................................................. 160 5.2.3 Study Protocol ......................................................................................................... 160 5.2.3.1 Feasibility Indicators ........................................................................................ 161 5.2.3.2 Clinical Outcomes ............................................................................................ 162 5.2.4 Data Analyses ......................................................................................................... 162 5.2.4.1 Feasibility Indicators ........................................................................................ 163 5.2.4.2 Clinical Outcomes ............................................................................................ 164 5.3 Results ............................................................................................................................ 167 5.3.1 Participants .............................................................................................................. 167 5.3.2 Feasibility Indicators ............................................................................................... 168 5.3.2.1 Process Indicators ............................................................................................ 168 5.3.2.2 Resource Indicators .......................................................................................... 169 5.3.2.3 Management Indicators .................................................................................... 173   xiii 5.3.2.4 Scientific Indicators ......................................................................................... 174 5.3.3 Clinical Outcomes ................................................................................................... 176 5.3.3.1 Comparison of Individual Summary Scores .................................................... 176 5.3.3.2 Comparison of Group Summary Scores .......................................................... 177 5.3.3.3 Estimating Responsiveness .............................................................................. 178 5.4 Discussion ...................................................................................................................... 178 5.4.1 Process Indicators ................................................................................................... 179 5.4.2 Resource Indicators ................................................................................................. 184 5.4.3 Management Indicators ........................................................................................... 186 5.4.4 Scientific Indicators ................................................................................................ 187 5.4.5 Limitations .............................................................................................................. 194 5.5 Conclusion ..................................................................................................................... 195  Overall Discussion, Synthesis and Future Directions .........................................224 Chapter 6:6.1 Justifying the Importance of Measuring Participation in Everyday Life for Children Using Power Mobility ............................................................................................................. 224 6.2 Identifying Potential Participation Measurement Tools ................................................ 225 6.3 Determining Elements Important to Measure for Children with Power Mobility Needs and Identification of Suitable Measurement Tools ................................................................. 227 6.4 Evaluating Measurement Properties of Three Participation Tools with Children Using Power Mobility ....................................................................................................................... 228 6.5 Establishing Feasible Methods of Conducting Longitudinal Research with Children Using Power Mobility ............................................................................................................. 231 6.6 Limitations ..................................................................................................................... 232   xiv 6.7 Final Thoughts and Future Directions ........................................................................... 233 References ...................................................................................................................................236 Appendices ..................................................................................................................................262 Appendix A Listing of Search Terms and Databases ............................................................. 262 Appendix A(i) Listing of Search Terms for CINAHL, PsycInfo, ERIC, Medline and EMBASE ............................................................................................................................ 262 Appendix A(ii) Listing of Search Terms for OT Seeker, PEDro, Health and Psychosocial Instruments, EBM Reviews ................................................................................................ 266 Appendix B Example of Search Strategy ............................................................................... 268 Appendix C Reliability Evidence for Paediatric Participation Tools ..................................... 270 Appendix C(i) Internal Consistency and Test-Retest Reliability Evidence for Paediatric Participation Tools .............................................................................................................. 270 Appendix C(ii) Interrater, Intrarater Reliability and Measurement Error Evidence for Paediatric Participation Tools ............................................................................................. 279 Appendix D Validity and Applicability Evidence for Paediatric Participation Tools ............ 282 Appendix D(i) Validity Evidence for Paediatric Participation Tools ................................. 282 Appendix D(ii) Validity Evidence for Paediatric Participation Tools (Continued) ........... 295 Appendix E Quality Ratings Reliability Evidence ................................................................. 305 Appendix F Quality Ratings of Validity Evidence ................................................................. 310 Appendix G Round One Questions and Statements Regarding Participation Elements ........ 314 Appendix H Round One Summary of Results ........................................................................ 316 Appendix I Round Two Summary of Results ......................................................................... 319 Appendix J Round Three Summary of Results....................................................................... 322   xv Appendix K Other Documentation Provided with Round Four Survey ................................. 324 Appendix K(i) Comparison of Paediatric Participation Measures for Early Childhood .... 324 Appendix K(ii) Comparison of Paediatric Participation Measures for School-aged Children Parts I and II ........................................................................................................................ 327 Appendix K(iii) Comparison of Potential Paediatric Participation Measures for Early Childhood ............................................................................................................................ 331 Appendix K(iv) Comparison of Potential Paediatric Participation Measures for School-aged Children Part I and II .......................................................................................................... 333 Appendix K(v) Tools Not Selected for Inclusion in the POWER Mobility Toolkit .......... 339 Appendix K(vi) Reference List for Measurement Tools in Round Four ............................ 341 Appendix K(vii) Reference List for Measurement Tools Not Selected for Inclusion in the POWER Mobility Toolkit ................................................................................................... 344 Appendix L Wheelchair Outcome Measure for Young People (WhOM-YP) ........................ 346 Appendix M Socio-Demographic Information Form ............................................................. 352 Appendix N Historical Power Mobility Information Form .................................................... 354 Appendix O Functional Mobility Scale .................................................................................. 355 Appendix P Level of Sitting Scale .......................................................................................... 356 Appendix Q Modified Mini Mental Status Exam ................................................................... 357 Appendix R Assessment of Learning Power Mobility Use .................................................... 360 Appendix S PEM-CY Item Means for Total Group ............................................................... 363 Appendix T CAPE Subscale Mean Scores for Total Group ................................................... 364 Appendix U WhOM-YP Identified Participation Outcomes by ICF Domains and Categories................................................................................................................................................. 365   xvi Appendix U(i) WhOM-YP Identified Inside Participation Outcomes ............................... 365 Appendix U(ii) WhOM-YP Identified Outside Participation Outcomes ............................ 366 Appendix V Feasibility Indicator Data Collection Form ........................................................ 367 Appendix W Contextual Observation Form ........................................................................... 368 Appendix X Feasibility Study Semi-Structured Interview Guide .......................................... 369 Appendix Y Summary of Completion Times and Number of Days Between Sessions ......... 370 Appendix Y(i) Session Completion Times ......................................................................... 370 Appendix Y(ii) Number of Days Between Sessions for New PM Group .......................... 371 Appendix Y(iii) Number of Days Between Sessions for Stable PM Group ....................... 372 Appendix Z Comparison of Summary Change Scores for New PM Group ........................... 373    xvii List of Tables  Table 1.1  Power Mobility-Related Studies Addressing Participation Outcomes and Measurement Tools Used ............................................................................................................. 23 Table 1.2 Summary of Feasibility Indicators ................................................................................ 31 Table 2.1 Inclusion and Exclusion Criteria ................................................................................... 49 Table 2.2 Excluded Full Text Articles and Measurement Tools .................................................. 51 Table 2.3 Description of Paediatric Participation Tools ............................................................... 52 Table 2.4 Summary of Reliability Evidence Quality Ratings....................................................... 61 Table 2.5 Summary of Validity Evidence Quality Ratings .......................................................... 63 Table 3.1 Socio-Demographic Characteristics of Round One Participants Who Responded ...... 91 Table 3.2 Summary of Participants Invited versus Responded for Each Round .......................... 93 Table 3.3 Elements Reaching Consensus in Rounds One and Two ............................................. 94 Table 3.4 Elements Not Achieving Consensus in Round Two ..................................................... 97 Table 3.5 Round Three Top Ranking Elements That Reached Consensus ................................ 100 Table 4.1 Participant Characteristics .......................................................................................... 150 Table 4.2 Summary of Measurement Properties for Three Participation Tools ......................... 151 Table 4.3 Wheelchair Outcome Measure for Young People Participation Outcomes ............... 155 Table 5.1 Feasibility Indicators, Measurement Parameters and Results .................................... 197 Table 5.2 Participant Characteristics of Those Receiving a New PM Device ............................ 201 Table 5.3 Comparison of Summary Scores for New PM Group ................................................ 221     xviii List of Figures  Figure 1.1 International Classification of Functioning, Disability and Health Framework ......... 22 Figure 2.1 PRISMA Flowchart of Search Results ........................................................................ 50 Figure 3.1 Four Round Modified Delphi Survey Process ............................................................ 89 Figure 3.2 Inclusion and Exclusion Criteria ................................................................................. 90 Figure 3.3 Summary of Recruitment Process ............................................................................... 92 Figure 3.4 Participants’ Familiarity with Participation Tools under Consideration ................... 101 Figure 3.5 Parents’ Familiarity with Participation Tools under Consideration .......................... 102 Figure 3.6 Therapists’ Familiarity with Participation Tools under Consideration ..................... 103 Figure 3.7 Researchers’ Familiarity with Participation Tools under Consideration .................. 104 Figure 3.8 All Participants’ Percentage Agreement of Participation Tools Considered for Inclusion in a Measurement Toolkit ........................................................................................... 105 Figure 3.9 Parents’ Percentage Agreement of Participation Tools Considered for Inclusion in a Measurement Toolkit .................................................................................................................. 106 Figure 3.10 Therapists’ Percentage Agreement of Participation Tools Considered for Inclusion in a Measurement Toolkit ............................................................................................................... 107 Figure 3.11 Researchers’ Percentage Agreement of Participation Tools Considered for Inclusion in a Measurement Toolkit ........................................................................................................... 108 Figure 4.1 Feasibility Study Design............................................................................................ 149 Figure 5.1 Comparison of Individual Participants’ Summary Scores ........................................ 202    xix List of Abbreviations  CI95:   95% confidence interval COSMIN:  COnsensus-based Standards for the Selection of health Measurement INstruments  Cronbach’s α:  Cronbach’s alpha, an estimate of internal consistency GT:    Generalizability theory  ICC(2,1):  Intraclass correlation coefficient estimate using a 2-way random effects model  with   absolute agreement   ICF:  International Classification of Functioning Disability and Health  IRT:   Item Response Theory methods MDD:   Minimal Detectable Difference  PM:  Power mobility PRISMA:  Preferred Reporting Items for Systematic reviews and Meta-Analyses statement  OMRF:  McMaster Outcome Measures Rating Form  T(number):  Time (1 to 5) referring to research session number   r:   Pearson product-moment correlation coefficient rs:   Spearman’s rank correlation coefficient SD:   standard deviation SEM:   standard error of measurement  > , <:   equal to or greater than, less than    xx Glossary  Activities:   execution of an act or task by an individual Assistive technologies: equipment used to improve an individual’s functional capabilities Barriers:   external obstacles that limit involvement  Body structures:  anatomical structures of body systems  Body functions:  physiological functions of body systems Capacity:   what the individual is capable of doing in a standardized setting Child self report:  providing the child’s own point of view Children:   individuals aged 0-17 years Community life:  involvement outside of the home Cronbach’s alpha:  an estimate of internal consistency Delphi Survey technique: structured process of sequential rounds, developed to build consensus  Elements of participation: the ‘who, what, where and how’ participation should be measured  Engagement:   active or attentive interacting with someone or something  Enjoyment:   experiencing a positive emotion Environment:    physical, social and attitudinal milieu in which people live Facilitator:  people or objects that support and encourage involvement Family participation:  involvement in meaningful situations of family members  Importance:   of great value or significance Independent mobility: self-generated movement through space Internal consistency:   interrelatedness within a set of test items Intrarater reliability:    variability in scores by one rater on multiple occasions   xxi Interrater reliability:  variability between two or more raters when rating the same variable  International Classification of Functioning Disability and Health (ICF): a biopsychosocial  model of health that provides a standard language and theoretical framework for the description of health and health-related states  Life habits: habits that ensure survival and personal development throughout the lifespan Manual wheelchair:  type of mobility device for personal transport that requires human power  Measurement properties: evidence of reliability and validity for use with a specific population Measurement tool:  an instrument used to evaluate quantitative data  Mobility limitation: difficulty walking and moving about Minimal Detectable Difference: the smallest amount of change considered above the threshold of measurement error in a group of individuals who were expected to be stable  Objective:   that which can be observed  Occupational performance: dynamic experience engaging in daily occupations within environments  Outcome measurement: evaluation of therapeutic interventions designed to effect a change  Participation:  involvement in life situations  Performance:  what an individual actually does in everyday life  Personal factors:  characteristics unique to an individual  Power mobility:  related to use of electrically powered wheeled devices to enhance personal mobility such as power wheelchairs, ride-on toy cars, standers or scooters Power mobility interventions: assessment, prescription, provision, training and monitoring of power mobility device use Power wheelchair:  electrically powered wheeled mobility device for personal transport    xxii Reliability:   evidence that supports reproducibility of test scores  Responsiveness:  ability to detect change when change is truly occurring Satisfaction:   the state of being pleased or satisfied Standard Error of Measurement: a statistic that quantifies a score’s precision within a sample  Subjective:   meaning attached to a particular situation Systematic review:  a structured critical assessment and evaluation process including all research studies addressing a specific topic Test-retest reliability: degree of stability of scores based on repeated administrations to the same individuals over a specific time interval  Toolkit:   a set of measurement tools used as a resource for a particular purpose Type I error:   rejecting a null hypothesis incorrectly (resulting in a false positive) Type II error:   failure to reject a null hypothesis (resulting in a false negative) Unidimensionality: referring to all items assessing  a single common construct  Validity:   degree that evidence supports the interpretation of scores for a measurement tool’s intended purpose. It may include examination of content, relationship with other variables, internal structure, response processes, responsiveness, or consequences of use  Wheelchair use:  for this dissertation, refers to active use of a power wheelchair or other power mobility device for mobility purposes or to engage in chosen activities Wheeled mobility:  related to use of manual or power mobility devices   xxiii Acknowledgements  First, I would like to express my deepest appreciation and gratitude to the participants who volunteered for the studies on which this dissertation is based. The dedication and energy that families engage in to support their children’s participation in meaningful life opportunities to their fullest potential is inspiring. So too is the commitment that professionals make to enhancing children’s and their family’s health and well-being. As for the children and youth who are the focus of this dissertation, their positivity, determination and enthusiasm are impressive. I thank everyone for sharing their time and wisdom with me. I’ve learned much from their experiences and opinions, and it has contributed significantly to this work. Thanks also to everyone who helped spread the word about the studies and encouraged others to participate. I would especially like to thank my colleagues Roslyn Livingstone, Kathie Marina and Lori Roxborough, who along with many others, too numerous to mention, supported this work and engaged in thought-provoking dialogue about the benefits and challenges of power mobility clinical practice and research and that helped create the impetus for this dissertation. The ongoing support, friendship, and expertise from colleagues at Sunny Hill Health Centre for Children, Access Community Therapists Ltd, around the province, nationally and internationally is heartwarming.     I feel privileged to have been mentored and supported by such a distinguished group of researchers and educators including my supervisor Dr. Bill Miller, and PhD committee members Dr. Steve Ryan and Dr. Tal Jarus. Thank you for your invaluable guidance throughout my academic journey. Your insights and challenges have contributed immeasurably to my learning and skill development as a researcher, and I look forward to continued collaborations. Many   xxiv others assisted me, most importantly Kate Keetch and before her, Elmira Chan, along with Jenn Zelmer, Kristen Eng, Nathalie Manuel, Linh Huynh, Rei Ahn, Alex Abundo and other talented research assistants at the Rehabilitation Research Program at GF Strong Rehab Centre. Thanks so much for all of your assistance, and especially your ‘can do’ attitudes.  I have been fortunate to work with many individuals who provided scholarly dialogue and friendship, including Krista Best, Bita Imam, Ed Giesbrecht, Ada Tang, Brodi Sakakibara, Jeremy Noble, Dominik Zbogar, Paula Rushton, Ben Mortenson, Caryne Torkia, Lisa Simpson,  Emma Smith, Megan MacGillivray, Stephanie Glegg and others associated with the Rehabilitation Research Program and the Graduate Programs in Rehabilitation Sciences at the University of British Columbia.   I would like to recognize the personal financial support that the Canadian Institutes of Health Research Fellowship Award and the Canadian Occupational Therapy Foundation Blake Medical Distribution Scholarship Award have provided me while carrying out this research for which I am truly grateful. I would also like to extend my sincere appreciation to the University of British Columbia and International Collaboration On Repair Discoveries for travel grants enabling me to disseminate my work internationally.    xxv Dedication  This has been an incredible journey. I am indebted to my family for their unwavering support and encouragement as we have ventured together over the years. Gerry, Nikki, Christian, Benjamin, Jeremy, Mom and Dad this accomplishment is one for us all to share.  Much love,  Debbie  1  Introduction Chapter 1: 1.1 Impetus for this Research  For children and youth who have difficulty walking and keeping up with their family and peers, participating in everyday life situations can be challenging. 1 Participation in everyday life situations, such as taking care of oneself, learning, contributing to family life, or playing with friends is crucial for healthy development and well-being. 2-4 However, children and youth with physical disabilities have more participation restrictions than those who are typically developing, which may intensify their disability and bring about a decreased quality of life. 5 For those with limited mobility, power mobility (PM) devices, such as power wheelchairs, ride-on toy cars, standers or scooters, may be recommended by occupational therapists or physical therapists to enable independent mobility. PM interventions (involving assessment, prescription, provision, training and monitoring of PM device use) are considered for children as young as 7 months of age 6 who may be unable to walk or self-propel a manual wheelchair, keep up with their friends and family when they do self-propel, or lack the strength and endurance to travel needed distances to participate in desired activities. 7, 8 Frequently, enabling independent mobility is expected to improve their participation in daily life and thereby influence participation of their families. While PM interventions involve a significant commitment of health care resources, limited empirical research evidence supports the effectiveness of PM in increasing children’s and youth’s participation in age-expected life situations. 9-11     2 The population of interest for this dissertation is children and youth under 18 years of age with mobility limitations who may benefit from PM interventions. For ease of reading, they will be referred to as children using PM, with the understanding that this includes those currently using PM along with those who may benefit from its use but who do not yet have such equipment.   Occupational therapists and physical therapists (referred to as ‘therapists’ hereafter) use outcome measurement tools to prioritize treatment goals, monitor progress, evaluate success, and justify funding for interventions, including provision of assistive technologies. 12, 13 However, few therapists use such tools when making PM decisions. 8, 14 Perhaps this is because of the limited understanding of what factors influence participation in everyday life when children use a PM device or because specific impacts of PM on participation are unclear. Additionally, questions remain about how best to measure participation in everyday life when children use a PM device. Determining participation-related outcomes of importance for these children and their families in order to describe their participation needs and evaluate PM intervention effectiveness is needed. Although a number of paediatric participation tools are available, how suitable these are for children using PM is unclear and signals a need to identify measurement tools with acceptable levels of reliability and validity with this population. Determining suitable measurement tools is a necessary step towards understanding PM’s impact on children and their family’s participation in everyday life.      3 1.2 Power Mobility Use with Children  1.2.1 Prevalence and Need An estimated 25,000 children under 15 years of age in Canada have mobility limitations, 15 although the prevalence of those using PM is unknown. Nearly half of Canadian children with mobility limitations have difficulty with everyday activities; 20.5% of these children experience such high levels of difficulty with their daily activities that they are completely prevented from participating. 16 Therapists often assist children and their families to overcome participation restrictions by recommending mobility options, including PM. 14, 17 In the United States, an estimated 136,000 children with mobility limitations use wheeled mobility (typically manual or power wheelchairs). 18 Power wheelchairs and other electrically powered assistive equipment (referred to as PM devices) enhance personal mobility by providing a means to change location in space. 19 PM has the potential to provide independent mobility and facilitate participation in everyday life activities 9, 10 such as playing with friends, learning at school, helping out at home or attending community events.   PM is often recommended as one of a range of options for those with mobility limitations 20 due to a variety of medical conditions and diagnoses. 21, 22 While some use PM as their only means of independent mobility, others use PM for specific activities or in specific environments, using other mobility-related assistive technologies such as walking aids or manual wheelchairs in other situations. 23, 24 Some children (e.g., those with cerebral palsy (CP), spinal muscular atrophy (SMA) or osteogenesis imperfecta) may not achieve typical motor milestones for standing, crawling and walking due to significant developmental delays or motor impairments   4 early in life and as a result may experience delayed independent mobility or remain dependent on others. 21, 25 Others achieve these motor milestones early in life, but then lose independent mobility because of trauma (e.g., brain or spinal cord injury) or degenerative medical conditions (e.g., Duchenne muscular dystrophy). 8, 21 For some, PM is used for a (relatively) short period of time (e.g., during rehabilitation), while for others, PM is used throughout their lifespan. For many, use of assistive technologies for communication, learning, leisure and/or environmental control necessitates consideration of how these technologies can be integrated with their PM devices, both in terms of how to mount the equipment on the PM device and access methods (e.g., should the input for the PM device be used for other technology, and if so are additional components or skills required?) Specific participation restrictions encountered by these children, as well as the effectiveness of therapeutic strategies to assist them are not well understood.   1.2.2 Power Mobility Provision and Costs PM interventions involve a commitment of substantial healthcare resources, both for assistive technology equipment and specially trained personnel. Healthcare provision and funding opportunities for PM devices vary by province, 26, 27 with most government funding based on medical need. Families are often on their own to find funds for PM components that optimize their children’s participation in daily activities and improve their quality of life. In some jurisdictions, funding is left to charitable organizations, or individual fund-raising efforts. 14, 22, 28 Few published studies illustrate the overall costs of PM, 11 however PM devices are expensive. Clinical experience suggests purchase costs in British Columbia (BC) range from $5,000 to $40,000. These figures are for product only, and do not include therapists’ or vendors’ time, or families’ lost wages while they take time (and travel) to assess, trial and fit PM equipment.   5 Equipment costs are dependent on wheelchair features and components that impact performance (e.g., drive type, electronics, input and output devices, seating functions). Further costs arise as PM modifications or replacements are needed as children grow, experience health changes, or transition to new roles. 11   1.2.3 Finding the ‘Just Right’ Match Professionals with clinical and technical PM expertise work collaboratively with children and families, using a child and family-centred approach, 29 to make the ‘just right’ match between their individualized needs and the multitude of equipment choices. Professionals promote participation in everyday life by optimizing the match between PM user’s abilities, equipment features, activity demands and environmental considerations to facilitate what they want or need to do. 14, 30, 31 Staying abreast of technological and clinical advances can be challenging because of rapid development and innovations. This increases decision-making complexity around PM provision and highlights the need for evidence-informed decision-makers.   While choosing the ‘right’ PM device is most desired, profound implications exist if the equipment does not meet the individual’s needs adequately, including: (i) potentially higher financial costs to the healthcare system for additional personnel time and equipment purchases; (ii) greater societal costs associated with higher caregiver burden and burnout and (iii) increased personal costs for individuals and families unable to participate fully in everyday life. 11, 32 Risk of device abandonment is intensified with an ill-fitting match between their abilities, activity demands and device features. 31, 32 Given limited health resources, decisions regarding PM provision should be made using best evidence.11   6  1.3 Participation in Everyday Life  1.3.1 The International Classification of Functioning, Disability and Health (ICF)33, 34 The World Health Organization’s International Classification of Functioning, Disability, and Health (ICF) 33 and its child and youth version (ICF-CY) 34 propose that health is influenced by interactions between individuals’ ‘health condition,’ their ‘body structures and functions,’ as well as their ‘activities,’ ‘participation,’ and the ‘contextual factors’ affecting them.’ 33, 34 Many paediatric rehabilitation professionals have adopted the ICF-CY 34 framework because it addresses developmental and maturational needs of children and youth. 35 This biopsychosocial conceptual framework strives to improve our understanding of functioning and disability by providing a universal language, through its taxonomy, to improve communication across disciplines and countries. 33, 34   The ICF framework is divided into two parts, each having two components: Part 1 describes ‘body structures and functions,’ (defined as the body’s anatomy and physiology) as well as ‘activities’ (defined as ‘execution of specific tasks’) and ‘participation’ (defined as ‘involvement in life situations’). ‘Activities’ and ‘participation’ can be qualified either as capacity (what the individual is capable of doing in a standardized setting) or performance (what the individual actually does in everyday life). 33, 34 Part 2 consists of ‘contextual factors;’ either ‘personal factors’ (specific to the individual) or ‘environmental factors’ (including surrounding physical, social and attitudinal environments). These environmental factors can be qualified either as facilitators or barriers. 33, 34 Although the ICF defines ‘activities’ and ‘participation’ separately   7 recognizing each as a component of health, within its taxonomy ‘activities’ and ‘participation’ are combined, leaving others to differentiate between them based on their situation. 33, 34 In the taxonomy, nine chapters detail ‘activities and participation’ including learning and applying knowledge, general tasks and demands, communication, mobility, self-care, domestic life, interpersonal interactions and relationships, major life areas, and community, social and civic life. For this dissertation, ‘participation’ is operationalized to include ICF Chapters 6 through 9 relating to domestic life, interpersonal interactions and relationships, major life areas, community, and social and civic life. 33, 34 Figure 1.1 illustrates the ICF 33, 34 framework in reference to those who use PM, suggesting variables to consider when exploring children’s participation in everyday life. Note that PM devices, as well as services and supports associated with their provision are classified under environmental factors. 33, 34   1.3.2 Children With and Without Physical Disabilities Building on the ICF definition, 33, 34 Coster and Khetani defined life situations as ‘sets of organized sequences of activities directed toward a personally or socially meaningful goal’, 35(p.643) while Adolfsson and colleagues further expanded it to ‘frequently occurring routines or other activities that are complex, include sequences of actions suitable in societal contexts, involve engagement, and are directed towards meaningful goals’. 36(p. 1231) Participation-focused research has expanded since introduction of the ICF, 37, 38 examining participation in typically developing children, as well as children with disabilities. 39-42 For all children, participation in meaningful life situations leads to increased self-confidence, satisfaction, competence, development of functional abilities and social skills. 3, 4, 13 Ultimately, this promotes growth and   8 independence in preparation for adulthood, 43, 44 and contributes to well-being and quality of life.5, 42, 45, 46  Disability, according to the ICF, 33, 34 can be experienced across one or more impairments in body structure or functioning, activity limitations or participation restrictions. 33, 34 Improving participation in everyday life is an important rehabilitation goal, and one of the most common, yet most meaningful rehabilitation outcomes for children with physical disabilities and their families. 3, 35 Research suggests children with physical disabilities, including those with limited mobility, participate in life situations that are less diverse, more indoor, home-based, and less physically active when compared to typically-developing peers or those with other types of disabilities. 37, 39-41, 45-49 Children with physical disabilities also spend more time alone or with family rather than with friends or classmates, 37, 46, 50, 51 potentially impacting their overall quality of life. 5 Differences in age, sex and ability levels influence children’s engagement, intensity, and enjoyment as well as the support needed, when participating in both school and out-of-school activities. 5, 13, 37, 38, 40, 51-54   Studies have investigated participation for children with a range of disabilities 40, 51, 55, 56 as well as children with specific diagnoses such as spina bifida, 54 muscular dystrophy, 53 acquired brain injury (ABI), 37, 38, 57, 58 spinal cord injury (SCI), 37, 59-61 and, most commonly, children with CP. 46, 48, 62, 63 Although these diagnoses may result in mobility limitations, and the studies may have included participants who use PM, we cannot draw conclusions specific to those using PM because the authors did not explicitly identify PM use. What is known is an association between lower gross motor function and lower levels of participation in out-of-school leisure pursuits. 48,   9 58, 61, 63, 64 Additionally, a systematic review of children with various diagnoses of physical ability found gross motor function, manual ability, cognitive ability, communicative skills, age and gender to be important determinants of frequency of leisure participation. 46 These findings are particularly relevant, as children who use PM typically have more restricted motor and functional abilities than their peers. 24, 65 Our clinical experience suggests children who use PM have more challenges related to physical, cognitive, sensory or environmental demands than other children with disabilities who can walk or use a manual wheelchair, and therefore may have different participation needs. Conducting research to explore participation in everyday life of children who use PM fits with the direction suggested for further advancement of pediatric rehabilitation: exploring the nature, variability and consequences of participation for those with severe disabilities. 66   1.3.3 Children Who Benefit from Power Mobility PM interventions aim to minimize disability and improve participation in everyday life. Research evidence related to paediatric PM is developing, 10, 20 but has primarily focused on justification as a therapeutic intervention for young children, 67-72 outcomes related to independent mobility, cognitive and psychosocial development;  25, 73-75 as well as considerations for assessment and training. 76-79 Descriptive studies suggest PM use has a positive influence on children’s participation in everyday life, however a lack of empirical research that demonstrates causation is lacking. 9-11, 80 Moreover, little is known about everyday life situations children engage in when they use PM.20    10 Several literature reviews, utilizing different methodologies (i.e. systematic review, qualitative synthesis) have summarized evidence regarding children’s use of PM. 9-11, 80-82 Table 1.1 summarizes PM-related publications described in these reviews that address participation-related outcomes. Reviews were identified while carrying out a systematic review of published studies from 1980 to February 2014. 10, 80 Two of the six reviews rated quality of study conduct using structured and well-accepted evaluation tools: one 11 used the Critical Appraisal Skills Programme (CASP) 83 and the Centre for Evidence Based Management (CEBMa) 84 tools, while the other 10 used the Academy of Cerebral Palsy and Developmental Medicine (AACPDM) methodology for group and single subject designs. 85 All three rating systems evaluated study conduct and strength of evidence but used somewhat different definitions and criteria for different study designs. 83-85 Using the AACPDM methodology, 85 the highest level of evidence supporting PM’s positive impact on children’s participation was level IV (case series, cohort studies without concurrent control group, case-control study, non-randomized controlled single subject research design with at least three phases). 10, 21, 85 Evidence included one single subject ABAB research design with two participants aged 5 years with CP, 74 and one study using a cohort design without a control group, with 23 parents and children 18 to 72 months (13 with CP and 10 with other diagnoses). 86, 87 Remaining studies included qualitative interviews, cross-sectional designs, and case studies. 9-11, 80-82 Authors of the reviews stated generalizations were difficult to make because of the studies’ heterogeneity, but concluded that most studies provided lower levels of evidence. 9-11, 80-82 These reviews suggested potential for PM to have an impact on children’s participation but studies with stronger levels of evidence and higher quality ratings for study conduct and reporting are needed. 9-11 Table 1.1 also includes three recent case-reports and   11 one case series reporting on participation-related outcomes published after the reviews were completed.88-91  1.4 Measuring Participation in Everyday Life of Children Needing Power Mobility  1.4.1 Paediatric Power Mobility Literature and Clinical Practice Within the paediatric PM literature, few standardized measurement tools have been used to measure participation-related outcomes, as the publications in Table 1.1 illustrate. 1, 7, 25, 67, 70, 86-92 Of the 12 paediatric PM publications that used standardized measurement tools, only the Life Habits Assessment (LIFE-H), 93 Pediatric Evaluation of Disability Inventory (PEDI), 94, 95 and Canadian Occupational Performance Measure (COPM) 96 had items focused on ICF ‘activities and participation’ categories. 33, 34, 36 The LIFE-H 93 and PEDI 94, 95 had pre-determined items, while the client-centred COPM 96 had individualized items most important to children and/or parents. The other seven standardized measurement tools were generalized assessments measuring different aspects of functioning, 97-103 with most 93-103 developed prior to the ICF. 33, 34 With the current emphasis on evaluating participation-related outcomes in paediatric rehabilitation 13, 66 and mobility-related assistive technology provision, 22, 104 it is essential that appropriate participation measurement tools suitable for children using PM be identified. In Chapter 2 we report on a systematic review conducted to identify potential paediatric participation tools that may be suitable for our population.  Similar to PM research, few therapists in clinical practice use standardized measurement tools to evaluate participation in everyday life and inform PM decisions. 8, 14 When selecting a   12 measurement tool, the choice of options can be confusing, especially if therapists are less knowledgeable about measurement issues (such as the importance of reliability and validity evidence), the differences between tools, or their conceptual underpinnings. In fact, lack of knowledge regarding available tools and their usage was one identified barrier to using outcome measures in clinical practice. 105 Our lack of knowledge about children’s participation while using PM is compounded by studies that employ health measurement tools with limited measurement properties. In Chapter 2 we critically appraise the measurement properties supporting the use of participation tools included in our systematic review.  1.4.2 Importance of Measurement Properties Three purposes for measurement in healthcare are: (i) to discriminate between individuals or populations (e.g., to make a diagnosis); (ii) to predict future occurrence based on present circumstance (e.g., for prognosis or to facilitate treatment planning); or (iii) to evaluate change (e.g., to determine effectiveness of an intervention). 106 It is essential that measurement tools have demonstrated evidence of reliability and validity with a particular population to provide meaningful interpretations of the test scores for the anticipated purpose. 106, 107 For PM, measurement is valuable when assessing children’s participation needs, facilitating the ‘just right’ match for equipment recommendations, discriminating who needs (additional) interventions, determining intervention effectiveness and improving service delivery. 11, 31   Reliability refers to the consistency or reproducibility of scores when measurement tools are used repeatedly, whereas validity refers to the extent that a measurement tool measures what it is intended to measure. 108, 109 Several approaches for evaluating these measurement properties have   13 evolved over time. Classical test theory, an earlier approach to explaining reliability, states that an observed score reflects the true score plus an error score, where the variability in scores upon repetition are attributed to measurement error (but this error is undifferentiated). 110 Generalizability theory (GT), a more recent development, states reliability is influenced by multiple sources of error, related to specific testing conditions. Further, depending on the testing context, different sources of measurement error may be appropriate for analysis, with some sources of error randomly generated and other sources occurring more systematically. GT stipulates that estimates of reliability can be generalized only to the context in which the measurement tool is tested, and therefore is not a characteristic specific to the tool. Different methods of reliability testing have been developed to reflect these theoretical assumptions; the most familiar being internal consistency, test-retest reliability, interrater reliability and intrarater reliability. 106, 110 Internal consistency is defined as the degree of interrelatedness within a set of test items, 110, 111 while test-retest reliability is defined as the degree of score stability based on repeated administrations to the same individuals over a specific time interval where change is not expected. 110, 112 Degree of score agreement when evaluating the same variable between two or more raters is known as interrater reliability, in comparison to intrarater reliability defined as the degree of score agreement by one rater on multiple occasions. 110   Our understanding of validity has also evolved over time. Earlier approaches describe separate types of validity, most commonly known as content (and face) validity, criterion-related validity and construct validity. 112 More recently, construct validity is viewed as a unified concept that seeks validity evidence from different sources. 107, 110 Validity evidence may include examination of content, relationship with other variables, internal structure, response processes   14 and consequences of tool use.  107, 113, 114 Content-related evidence examines item and response wording and format, fit with the construct being measured, as well as administration and scoring procedures. Evidence supporting the association between two or more variables may include convergent, discriminant, concurrent or predictive validity evidence, while internal structure evidence evaluates how items relate to one another and the construct being measured. Response processes evidence involves asking respondents how they interpret the items and responses, while consequential evidence refers to the use and misuse of measurement tools with different populations and within different contexts. 107, 113, 114 Other validity–related issues may include identification of construct underrepresentation or construct-irrelevant components. 107, 113, 114 Validity, in this newer conceptualization, is no longer viewed as a characteristic of the measurement tool, but rather the amount of support for the interpretation of scores and the subsequent actions taken based on those scores. When investigating validity evidence using measurement tools to evaluate change, one important strategy is to provide evidence of responsiveness. 112, 115, 116 Much like measuring participation in everyday life, considerable debate over how to define and measure responsiveness exists. 115, 117-119 We chose the definition of responsiveness ‘the ability of an instrument to detect change,’ put forward by de Bruin and colleagues 120 (p529) and adopted by Beaton and co-authors in their responsiveness taxonomy, 117 because of its broad definition.   1.4.3 Applying Knowledge of Measurement Properties Like reliability, generalization of validity evidence can only be applied to the context in which the measurement tool was evaluated. 107, 110  However, finding a measurement tool that has sufficient measurement properties for the intended purpose and population can sometimes be   15 frustrating as evidence supporting reliability and validity may be widely variable or non-existent. 38, 109, 121, 122 To complicate matters, evidence supporting measurement properties continues to draw on a multitude of theoretical approaches.  Outcome measurement, the evaluation of therapeutic interventions designed to effect a change, is valued by a variety of stakeholders - including therapists, administrators, policy makers, equipment suppliers, funders and families. 12, 105 Therapists often use outcome measurement tools to prioritize treatment goals, monitor progress and evaluate success of an intervention. 12, 38 Using well-developed outcome measurement tools, appropriate for the population under investigation with evidence supporting detection of meaningful change following intervention, is critical. 12, 112 Demonstration of a measurement tool’s clinical usefulness is another important characteristic. 108, 123 Clinical usefulness (or utility as its sometimes referred to) may encompass meaningfulness of scores and their interpretations, administration and scoring ease, length of time and acceptability (known as assessor and respondent burden), evaluation format, instruction availability and clarity, as well as required assessor training; 108, 123 all considerations when selecting a measurement tool. Several quality-rating tools for outcome measures may be valuable when evaluating measurement tools and studies reporting their development. 124, 125 In current paediatric PM clinical practice, what dimensions of participation in everyday life are important to measure, what tools are available, and what measurement properties are for those tools with children using PM are yet unknown. In Chapter 3 we report on an online Delphi survey conducted to achieve expert consensus on participation outcomes important to measure for children needing PM and to determine suitability of  paediatric participation tools.   16  1.5 More on Conceptual Frameworks and Theory  1.5.1 Limitations to the ICF 33, 34 Conceptual frameworks and theory often guide choice of outcomes and indicators to explore, measurement tools to use and relationships to be tested. Although using the ICF  33, 34 has advantages, limitations have been acknowledged. For example although subjective dimensions of participation and personal contextual factors are recognized as being important in the conceptual framework, detailed descriptions within its classification taxonomy are lacking. 35, 126, 127 Similarly, importance of quality of life and temporal changes across the lifespan are discussed but not detailed in the current ICF 33, 34 conceptual framework. 126 Another limitation is the lack of differentiation between ‘activities’ and ‘participation’ within the taxonomy, despite each construct being specifically defined. 122, 128 The ICF 33, 34 suggests four different ways to differentiate between ‘activities’ and ‘participation’ but leaves it to the user to define based on what makes most sense for the situation. The four suggested ways include (i) designating some domains as ‘activities’ and others as ‘participation’ without overlap, (ii) allowing partial overlap between designated domains of ‘activities’ and ‘participation’, (iii) designating broad category headings as ‘participation’ while designating the more detailed domains as ‘activities’, or (iv) considering all domains as both ‘activities’ and ‘participation. 33, 34 As a result, no agreement exists on what constitutes ‘participation,’ or how to differentiate it from ‘activities.’ 122, 128 Measurement of the participation construct then becomes especially challenging because it is difficult to operationally define and quantify. 35, 122 We chose to adopt strategy (i).     17 1.5.2 Paediatric Participation Conceptual Models  Given the complexity of participation, 37, 48, 61 several models have been generated to clarify our understanding of children’s participation and guide research efforts. King and colleagues proposed a multi-dimensional conceptual model of paediatric recreation and leisure participation based on review of childhood disability, risk and resilience, leisure and recreation, and physical activity and exercise bodies of literature. 3 This model described predictive factors within the child, their family and their community environment and relationships between these factors believed to influence, either directly or indirectly, a child’s participation in recreation and leisure. 3 More recently, Palisano and colleagues presented a conceptual model of determinants of intensity of participation in recreation and leisure for children with CP, formulated through an iterative process involving literature searches, appraisal of theory and research, team discussions, and structural equation modeling testing. 63 It too reflects the complex and multi-dimensional nature of children’s participation, influenced by characteristics within the child, their family, and educational, healthcare, and community services that serve them. 63 Another proposed conceptual model of optimal participation in children with physical disabilities expanded understanding of participation in recreation and leisure. 2, 13 Researchers suggested that the child’s objective and subjective experiences inform their participation through physical, social and self-engagement, and that factors within the child, their family and their environment dynamically affect the child’s health, well-being and quality of life. 2, 13 All of these models address participation in terms of recreation and leisure participation, one important aspect of childhood. Models incorporating other aspects of participation may evolve as investigations become more discerning (e.g., home, school, community, social, or physical activity participation). 66, 126 Refinement of participation measurement has however fueled debate about meanings and   18 definitions attributed to participation. 35, 66 Determining relevant aspects of participation in everyday life for children using PM, as reported on in Chapter 3, will help guide research efforts and clinical practice.   1.5.3 Conceptual Models Specific to Those Using Power Mobility Within the wheeled mobility literature, conceptual models hypothesize the influence that wheeled mobility has on participation in everyday life. Routhier and colleagues developed ‘The Relational Model of Wheelchair Mobility’ to explain the relationship between an individual’s wheeled mobility performance, their occupation and social participation. 19 This model suggests bidirectional relationships between five influencing factors (user profile; environment; daily activities and social roles; assessment and training [processes]; and wheelchair characteristics) as well as bidirectional relationships between each of the five factors and wheeled mobility performance. 19 Rousseau-Harrison and Rochette discussed the relevance of another model, ‘The Disability Creation Process (DCP) Model,’ 93 to their systematic review on activity and participation of children using wheeled mobility. 9 They suggested the DCP Model’s two-way causal links between social participation, personal factors, and the child’s immediate social environments 93 may help explain differences between children without mobility limitations and those using mobility-related assistive technologies. 9 Specific to PM, Hardy discussed how ‘The Occupational Performance Model (Australia)’ 129 may be used to guide PM assessment and training considerations. 8 She described unidirectional associations between wheelchair features, physical, sensory, social, and cultural environments, and performance components relating to biomechanical, sensory–motor, cognitive, intrapersonal and interpersonal characteristics. She   19 stressed the importance of time in relation to efficiency of mobility, access method, and fit between personal characteristics and wheelchair features. 8   Livingstone and Field in their synthesis of the qualitative paediatric PM literature, acknowledged these three models share a number of similar constructs, despite using slightly different terminology. 80 Their synthesis included three over-arching themes from 21 peer-reviewed journal articles, suggesting that PM experience (i) promotes developmental change and independent mobility, (ii) enhances social relationships and engagement in meaningful life experiences and (iii) is influenced by factors in the physical, social and attitudinal environments. Their findings support the multifactorial nature of the three models described above, along with the interconnectedness of influencing factors. 80 In Chapters 4 and 5 of this dissertation we explore children’s participation in everyday life more systematically to gain a greater understanding of how children who use PM engage in meaningful life experiences. This will contribute further evidence supporting (or refuting) these models.   Questions specific to participation in everyday life of children using PM have been minimally addressed in paediatric rehabilitation and wheeled mobility literature. Research questions for children with PM needs (who may be more limited in their abilities and activities than their peers), include: What does their participation in everyday life look like? Do they have unique considerations because of their PM use? and How do changes in their PM use affect their participation in everyday life? Given the importance of understanding the nature, variability, and consequences of children’s participation, 2, 13, 35, 122 especially for less accessible populations, 66 further investigation of participation-related outcomes for those using PM is warranted. 20, 104, 130,   20 131 Before evaluating effectiveness of PM interventions on children’s participation in everyday life, we first need to be confident that methods and measurement tools are suitable for use with our population. Moreover, because few participation tools are used clinically or in research with this population, identifying suitable measurement tools, and generating evidence supporting their reliability and validity with children using PM before moving forward with larger, more expensive studies is important. 132, 133 Chapters 4 and 5 present findings of a feasibility study that investigated process, resources, management, and scientific indicators related to conducting research with our population. Table 1.2 lists common feasibility indicators 132, 133 that guided our investigations. Given the scope of this material, we chose to present our findings as two chapters with Chapter 4 focusing on estimating measurement properties of selected participation tools to explore their suitability for use with our population 132 and Chapter 5 examining other feasibility indicators including a preliminary investigation of treatment effect with provision of a new PM device on participation in everyday life. 133, 134    1.6 Dissertation Purpose  The purpose of this dissertation is to advance understanding of how children using PM participate in everyday life situations, and to establish feasible research methods with reliable and valid measurement tools to investigate the impact that PM has on participation in everyday life. Research findings are presented in Chapters 2 to 5, with each chapter outlined below:      21 Chapter 2: Measuring Participation in Everyday Life of Children Using Power Mobility: A Systematic Review of Potential Measurement Tools.  Purpose: To identify and critically appraise participation measurement tools available for potential use with children with PM needs. This information provides background information for Chapter 3.  Chapter 3: Reaching Expert Consensus on Participation Outcomes Important to Measure for Children Using Power Mobility and Determining Suitable Measurement Tools. Purpose: To advance understanding of what participation-related information is important to measure for children using PM, and to determine measurement tools that may be suitable for this population.   Chapter 4: Establishing Measurement Properties of Participation Tools for Children Using Power Mobility. Purpose: To evaluate the measurement properties (i.e., reliability and validity) of three paediatric participation tools with children using PM.   Chapter 5: Determining Feasibility of Conducting Participation-Related Research with Children Using Power Mobility.  Purpose: (a) To examine feasibility related to process, resources, management and scientific indicators when conducting research with children using PM and their families; and, (b) to describe changes in participation in everyday life situations for children using PM after provision of a new power wheelchair.   22 Figure 1.1 International Classification of Functioning, Disability and Health Framework 33, 34               Health Condition (diagnoses,  co-morbidities)  Body Functions & Structures (e.g., motor, sensory, perceptual, cognitive impairments)  Activities (e.g., ambulation, wheelchair skills, seated postural control, hand use)  Participation                   (e.g., playing power  soccer,  completing schoolwork, doing chores)  Personal Factors (e.g., age, sex, temperament) Environmental Factors (e.g., wheelchair; physical accessibility,  social support & attitudes of others)    23 Table 1.1  Power Mobility-Related Studies Addressing Participation Outcomes and Measurement Tools Used  (Organized From Highest To Lowest Evidence Level Ratings Assigned By Review Authors And Date Of Publication) Study Design Participants  Sample Size  Age  Diagnoses PM Device & Duration  Of PM Use Evaluated Evaluation Method & Results Evidence Level Rating Assigned By Review Authors Participation-Related Outcomes Identified By Review Authors Deitz et al. 200274 SSRD ABA(B)* (*only 1 child completed second intervention phase) 2 children  5 yrs  with CP ride-on toy car  Baseline min. 7 weeks, intervention min. 3 weeks; post-intervention min. 1 week 10 minute video recording during school gym sessions or recess Frequency count of ‘initiation of contact’ behavior recorded every 15 seconds from video: i) by target child directed to adults or peers ii) from others directed to target child, (by adult or peers) Reliability of coding evaluated Descriptive statistics provided Livingstone & Field, 201410 AACPDM85 Level IV  Henderson et al. 200881 Social interaction10     Interacting with others81 Guerette  et al. 201387 Cohort without control (same children as below) 23 children  18 to 72 mos 13 with CP (to 72 mos)  10 other dx (to 42 mos) power wheelchair 4 mos 12 minute observation of behaviour during indoor & outdoor play using study specific data form: statistically significant increased number of mobility play activities engaged in from pre to post tests. Adaptive Social Behavior Inventory99 statistically significant increased ‘prosocial’ component scores between pre and post tests Livingstone & Field, 201410  AACPDM85 Level IV   Play skills10  Social skills & interaction10 Tefft et al. 201186 Cohort without control (same children as above) Parents of 23 children  18 to 72 mos 13 with CP 10 other dx power wheelchair 2 pre-tests (wheelchair specification T1 & delivery T2) + 1 post-test (T3 4 to 6 mos post delivery) Matching Assistive Technology & Child (MATCH) survey97 statistically significant change in Item-‘parents' satisfaction with child's social & play skills’ score from pre to post test (T1,T2+T3) Survey of Technology Use97 statistically significant change in item ‘Interactions with family’ between pretest scores (T1+T2)  Livingstone & Field, 201410 AACPDM85 Level IV  Bray et al. 201411 8/12 score on CEBMa Questionnaire Survey Appraisal Outcomes Tool84   Social interaction10     Social & play skills11        24 Study Design Participants  Sample Size  Age  Diagnoses PM Device & Duration  Of PM Use Evaluated Evaluation Method & Results Evidence Level Rating Assigned By Review Authors Participation-Related Outcomes Identified By Review Authors Rousseau-Harrison & Rochette, 20139 Play & interpersonal relationships9 Ragonesi et al. 201175 Case study (same child as below) 1 child 3 yrs with CP  (+ 1 TD peer comparison) UD2 Baseline 10 days with mobility & socialization training vs 7 days post (no) training   Daily 2 hour video recording of free play. Most active 30 minutes of video coded & analyzed for frequency count of behavior in preschool class:  number of minutes in solitary vs parallel play/awareness; interacting with teachers & peer interaction.  Reliability of coding evaluated. Descriptive statistics provided increased interaction with teachers and peers during training & decreased during post-training  Livingstone & Field, 201410  AACPDM85 Level V  Play skills10  Peer participation10 Ragonesi et al. 2010135   Case study (same child as above) 1 child 3 yrs with CP  (+ 2 TD peer comparison) UD2 Baseline of 10 days without UD2 vs intervention of 13 days with UD2   Daily 2 hour video recording of free play. Most active 30 minutes of video coded & analyzed for frequency count of behaviour in preschool classroom. Number of minutes in solitary vs parallel play/awareness; interacting with teachers & interacting with peers.  Reliability of coding evaluated. Descriptive statistics; increased interaction with peers in intervention Livingstone & Field, 201410  AACPDM85 Level V  Play skills10  Peer participation10 Home & Ham 200328 Cross-sectional postal survey 61 parents 2 to 7 yrs with CP & with SMA power wheelchair Duration not stated Study specific survey on perceived effects of PM  Items: ‘integration with others’; ‘participation in games and activities’; ‘increased participation in family life’ Descriptive statistics provided Livingstone & Field, 201410 AACPDM85 Level V  Bray et al. 201411  5/12 score on CEBMa Questionnaire Peer & social interaction10     Able to socialise more11      25 Study Design Participants  Sample Size  Age  Diagnoses PM Device & Duration  Of PM Use Evaluated Evaluation Method & Results Evidence Level Rating Assigned By Review Authors Participation-Related Outcomes Identified By Review Authors Survey Appraisal Outcomes Tool84  Livingstone & Field, 201480    Enhance ability to play80 Increase participation80 Wiart et al. 200317 Cross-sectional phone interviews 66 PM users receiving power wheelchair before 18 yrs 52 with parent proxy PM users  4.5 to 27.5 yrs with CP, SB, SCI, OI power wheelchair Duration not stated 22 closed ended questions &  4 open-ended questions Descriptive statistics provided  Livingstone & Field, 201410 AACPDM85 Level V  Bray et al. 201411  5/12 score on CEBMa Questionnaire Survey Appraisal Outcomes Tool84  Livingstone & Field, 201480 Peer participation10     Able to socialise more11       Enhance ability to play80 Increase participation80 Enhance peer relationships80 Nisbet et al. 2002136  Case studies 3 girls 10, 10, 5 yrs with CP SMART wheelchair 6 mos Narrative of observations and experiences reported by caregivers to professional, as well as professional’s observations Livingstone & Field, 201410 AACPDM85 Level V  Livingstone & Field, 201480 Peer participation10     Increase participation80 Le Page et al. 19981 Cross-sectional evaluation 96 children including 12 PM users 5 to 17 yrs with CP power wheelchair Duration not stated Assessment of Life Habits (LIFE-H) 93 administered in 1 session ANOVA & Tukey post hoc test differences in Life-H93 scores between children who used a power wheelchair and those who: used a manual wheelchair, used a Livingstone & Field, 201410 AACPDM85 Level V   Social roles10 Education10 Responsibility10 Interpersonal relationships10    26 Study Design Participants  Sample Size  Age  Diagnoses PM Device & Duration  Of PM Use Evaluated Evaluation Method & Results Evidence Level Rating Assigned By Review Authors Participation-Related Outcomes Identified By Review Authors walking aid & who did not use any aids Rousseau-Harrison & Rochette, 20139 The higher level of locomotion the better the participation in life habits9 Nisbet et al. 1996137  Case studies 3 boys 8, 8.5, 10 yrs with CP  SMART wheelchair 15 mos Narrative of observations and experiences reported by caregivers to professional, as well as professional’s observations Livingstone & Field, 201410 AACPDM85 Level V  Livingstone & Field, 201480 Peer participation10     Enhance ability to play80 Increase participation80 Everard 1984138  Case study 1 child 22 mos with SMA power wheelchair 6 weeks Narrative of observations and experiences reported from mother’s perspective Livingstone & Field, 201410 AACPDM85 Level V  Livingstone & Field, 2014 80  Peer participation10     Enhance ability to play80 Increase participation80 Enhance peer relationships80 Jones et al. 201225 Randomized controlled trial 28 children 14 to 30 mos 18 with CP 10 other dx Power wheelchair Pretest  prior to wheelchair delivery Post-test 1 yr post delivery Battelle Developmental Inventory100 Pediatric Evaluation of Disability Inventory (PEDI)94 Early Coping Inventory101 (reactive behavior scale & self-initiated behavior scale). Reliability of scoring evaluated  Livingstone & Field, 201410  Findings did not demonstrate statistically significant differences between groups on participation-related items Gudgeon & Kirk 2013139 Semi-structured interviews 9 EPIOC users  7 to 16 yrs with MD, CP, SMA, brain tumour  EPIOC Topic guide developed Interpretative Phenomenological Analysis   Livingstone & Field, 201480  Enhance ability to play80 Increase participation80   27 Study Design Participants  Sample Size  Age  Diagnoses PM Device & Duration  Of PM Use Evaluated Evaluation Method & Results Evidence Level Rating Assigned By Review Authors Participation-Related Outcomes Identified By Review Authors McGarry et al. 201273 Observation  Semi-structured interviews  Parents of 4 children  5 to 13 yrs  with CP  SMART wheelchair 8 x 1 hour session/week Multiple case study design using mixed methods 5 open-ended questions topic guide; Inductive analysis Livingstone & Field, 201480  Livingstone & Field, 201410 Enhance ability to play80   Participation outcomes not reported May & Rugg 20107 Pre-post assessment Semi-structured interviews (for 6 users)  20 EPIOC users  11 to 92 yrs interviewed 1 child 11yrs with SMA  EPIOC Canadian Occupational Performance Measure (COPM) 96 administered pre and 4-12 weeks post wheelchair delivery Statistically significant improvements in occupational performance & satisfaction scores-items not specified 6 participants completed post-provision interviews; Interpretative phenomenological analysis Livingstone & Field, 201480  Increase participation80 Huang et al. 2009140 Semi-structured face to face interviews 15 children  8 to 15 yrs with CP one 8-yr-old PM user  15 mothers 14 teachers  power wheelchair  Descriptive statistics provided thematic qualitative analysis Livingstone & Field, 201480  Enhance ability to play80 Increase participation80 Enhance peer relationships80 Evans et al. 2007141 Telephone interviews  18 adolescents 10 to 18 yrs 13 with parental assistance 10 with MD  5 with CP 3 other dx electric powered indoor – outdoor chair (EPIOC) Closed-ended & open-ended questions Descriptive statistics provided Qualitative conceptual framework  Bray et al. 201411  7/10 score on CASP Qualitative Study appraisal tool83  Livingstone & Field, 201480 Able to socialise more11      Increase participation80 Wiart et al. 2004142 Semi-structured interviews 5 mothers of children 10 to 18 yrs  power wheelchair  Open-ended questions Phenomenological data analysis Bray et al. 201411  8/10 score on CASP Qualitative Able to socialise more11     28 Study Design Participants  Sample Size  Age  Diagnoses PM Device & Duration  Of PM Use Evaluated Evaluation Method & Results Evidence Level Rating Assigned By Review Authors Participation-Related Outcomes Identified By Review Authors 4 with CP 1 with SB Study appraisal tool83  Livingstone & Field, 201480  Henderson et al. 200881    Increase participation80   Meaningful activities81 Jones et al. 200370 Case study assessments at baseline, 3 & 6 mos wheelchair provided  at 4 mos 1 child  20 mos with SMA power wheelchair 6 mos Battelle Developmental Inventory100 Personal-social skills increased PEDI94 positive trend observed, scores not provided nor if change statistically significant Parent interview pre & post provision Rousseau-Harrison & Rochette, 20139  Livingstone & Field, 201410  Improved social functioning9   Participation-related outcomes not reported in detail, unable to make conclusions Skar 2002143 Semi-structured interviews 8 children  6 to 11 yrs  with CP, SB, other dx  one PM user power wheelchair  Open-ended questions, topic guide Grounded Theory  constant comparative method  Livingstone & Field, 201480  Rousseau-Harrison & Rochette, 20139 Enhance ability to play80 Increase participation80  Not obstacle to play-part of self9 Bottos et al. 200167 Case history survey design   Semi-structured interviews Parents and 25 children  3 to 8yrs  with CP power wheelchair baseline (T1) + 6 to 8 mos pre-test (T2); 6 to 8 mos post-test (T3) COPM96 measured change in activities of daily life; significant difference in performance & satisfaction between T2 & T3  Impact of Childhood Illness Scale144 measured change in social participation Descriptive statistics provided Henderson et al. 200881  Livingstone & Field, 201410  Quality of life81   No statistically significant change reported in social participation  Benedict et al. 199992 Caregiver Semi-structured interviews Telephone 13 families  2 to 4 yrs  11 with CP  2 with metabolic power wheelchair  Record review (n = 21) Telephone survey (n = 13)   PEDI94 Interview with 4 open-ended questions  thematic qualitative analysis Livingstone & Field, 201480  Livingstone & Field, 201410 Increase participation80   Participation outcomes not reported   29 Study Design Participants  Sample Size  Age  Diagnoses PM Device & Duration  Of PM Use Evaluated Evaluation Method & Results Evidence Level Rating Assigned By Review Authors Participation-Related Outcomes Identified By Review Authors survey  disorders 4 families interviewed one PM user Descriptive statistics provided   Berry et al. 1996145 Semi-structured interviews 36 caregivers of 34 children  5 to 17 yrs + 2 18 to 23yrs  29 with CP   4 with SB   3 other dx power wheelchair Duration not stated Reliability of frequency data and coding of qualitative data evaluated closed ended & open-ended questions  31 interviewed by phone 5 interviewed at home Descriptive statistics provided thematic qualitative analysis Livingstone & Field, 201480  Enhance ability to play80 Increase participation80 Douglas & Ryan 1987146  Case study 1 child  4 yrs  with SCI power wheelchair 2 years  Narrative of observations and experiences reported by professional Livingstone & Field, 201480  Henderson et al. 200881  Increase participation80   Group activities81 Responsibilities81  Articles not rated, published after reviews Kenyon et al. 201688  Case series 3 children 17 mos to 3.5 yrs with CP power wheelchair trainer 1/hour/week /12 weeks Narrative of observations & experiences reported  Pediatric Evaluation of Disability Inventory- Computer Adaptive Test (PEDI-CAT) 95 & Dimensions of Mastery Questionnaire (social persistence subscale)102 Descriptive statistics provided Not rated Published after reviews  Kenyon et al. 201589  Case study 1 young adult  18 yrs with CP + CVI power wheelchair trainer 1 hour/2x week/12weeks Narrative of observations & experiences reported & Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD)103 Descriptive statistics provided Not rated Published after reviews  Logan et al. 201490  Case study 1 child 13 mos with Down ride-on toy car; 3 mos baseline, 20 minute video recording: 10 minutes natural play + 10 minutes of ride-on toy car play. Socialization measured Not rated Published after reviews    30 Study Design Participants  Sample Size  Age  Diagnoses PM Device & Duration  Of PM Use Evaluated Evaluation Method & Results Evidence Level Rating Assigned By Review Authors Participation-Related Outcomes Identified By Review Authors syndrome 3 mos intervention, 1 mos post-intervention counting reaching for toy & facial expressions from video. Coding reliability evaluated. Daily activity log and questionnaires Descriptive statistics provided Narrative of observations & experiences reported PEDI94 scores suggested changes in mobility & socialization Huang et al. 201491  Case report 1 child 21 mos  with CP ride-on toy car; 1 week baseline, 12 week intervention, 2 week post-intervention, min.ride-on toy play 20 minutes/day/5 days/week during intervention  20 minute video recording: 10 minutes natural play + 10 minutes of ride-on toy car play. Socialization measured counting reaching for toy/adult, facial expressions & vocalizations from video. Also coded natural family interaction for 10 minute period.  Daily activity log and questionnaires Descriptive statistics provided PEDI94 suggested increase in functional mobility and socialization Not rated Published after reviews  Legend: AACPDM  = American Academy of Cerebral Palsy and Developmental Medicine level of evidence scale; 85 ANOVA = analysis of variance; CP = cerebral palsy; CASP = Critical Appraisal Skills Programme Qualitative Study appraisal tool; 83 CEBMa = Centre for Evidence Based Management Questionnaire Survey Appraisal Outcomes Tool; 84 CVI = cortical visual impairment; dx = diagnosis; et al. = and colleagues; MD = muscular dystrophy; min. = minimum; mos = months; n= = sample size; OI = osteogenesis imperfect; PM = power mobility; SB = spina bifida; SCI = spinal cord injury; SMA = spinal muscular atrophy; SSRD ABA(B) = single subject research design with two conditions A is without intervention, B is with intervention; TD = typically developing; T() = time (session number); UD2 custom power mobility device for infants; vs = versus; yrs = years; & = and; x = times; / = out of; + = plus.  31 Table 1.2 Summary of Feasibility Indicators 132, 133  Process indicators Resource indicators Management indicators Scientific indicators Recruitment rate Recruitment effort Participant processing  Treatment effect Consent rate Community access Protocol administration  Measurement intervals  Participant and Assessor burden Equipment performance Suitability of measurement tools  Completion time & rate  Treatment safety  Retention rate  Perceived benefit    32  Measuring Participation in Everyday Life of Children Using Power Mobility: A Chapter 2:Systematic Review of Potential Measurement Tools  2.1  Introduction  In the last chapter we learned that participation in everyday life situations is important for children’s growth and development and contributes to their quality of life, and although the body of literature describing participation of children with disabilities is expanding, little information is known about the participation in everyday life of children using PM. This is concerning because they may be at greater risk for participation restrictions and decreased quality of life because of their mobility limitations. 147 To address this knowledge gap, appropriate measurement tools are necessary to describe their participation needs, develop intervention strategies, and evaluate outcomes. Measuring participation in everyday life will inform clinical decision-making with children using PM, and justify provision of PM-related therapy services and equipment to policymakers and funding agencies.    Challenges to measuring participation in everyday life for children include: operationally defining participation; distinguishing ‘participation’ from ‘activities’ (within the ICF framework); 33, 34 addressing objective dimensions (e.g., number or type of life situation, frequency) versus subjective dimensions (e.g., enjoyment, satisfaction, importance, preference) of participation; incorporating environmental contexts and cultural influences and evaluating participation over time. 35, 109, 122, 148 Objective tools designed to capture information that can be observed 35 often measure performance against normative comparisons, 128 while subjective tools   33 measure perspectives of participation 128 that reflect personal meaning. 35 Other challenges intensifying the complexity of measuring children‘s participation include how best to account for: developmental changes; the child’s participation within their family context; differences in perspectives (i.e., parent versus child); and changing abilities, autonomy and roles as children grow. 38, 48, 109, 122 Although a number of participation tools are available, each tool addresses these challenges differently. 35, 38, 109, 121, 122, 148 Nevertheless, the scope of each tool, how they compare to each other, and how useful they are for children using PM needs to be determined.  Within the last ten years, literature reviews have synthesized information about various participation measurement tools, 36, 122, 149-151 with some reviews targeting specific populations such as those with CP or ABI. 38, 109, 121, 148, 151-156 Given that children using PM have a range of diagnoses, 21 questions arise regarding relevance of these reviews’ findings for those with diagnoses other than those investigated. 38 While these reviews are valuable, the literature does not expressly describe wheelchair use, even though tool development and evaluation may have included children using wheelchairs. This raises questions about the measurement tools’ validity for children using PM (without further testing). 123, 157 Given the small number of children within a single diagnostic population, reviewing evidence supporting participation tools based on functional ability rather than diagnoses only 47 is valuable for those with PM needs.   While a body of evidence supports PM’s influence on activity-level outcomes, demonstration of PM’s impact on participation is particularly important because an assumption exists that independent mobility leads to greater participation in life situations and thereby facilitates child well-being and development. 10, 11, 80 To verify this assumption, measurement   34 tools that specifically evaluate the participation construct for PM applications are required. Many published reviews explore measurement tools for ICF 33, 34 ‘activities’ and ‘participation’ domains together 109, 122, 148, 151, 152 making it difficult to isolate tools measuring ‘participation’ only. The task of identifying ‘participation’ tools becomes more complex because these reviews often consider ‘activities’ and ‘participation’ from different perspectives, 36, 109, 121, 122, 148, 150-153 reflecting debate over how to define ‘participation’ and differentiate it from ‘activities.’ 33-35, 66, 122 Although some reviews address measurement properties, others focus on linking content to the ICF 33, 34 for clarity on what is measured, 36, 122, 150-152 or examine information about the tools’ clinical usefulness. 109, 121   Choosing a suitable tool to measure participation in everyday life is challenging given the number of measurement tools available, the dimensions of participation evaluated by these tools, 35, 122 and the unique needs of children who use PM. Some tools include items that are not relevant, requiring gross motor or fine motor skills beyond abilities of children using PM (e.g., climbing on playground equipment), 1, 24 possibly limiting the tools’ ability to detect functional change for this group of children. Scoring may be punitive against assistive technology use, putting those using PM at a disadvantage. 123, 157, 158 A systematic review of participation measurement tools (evaluating both measurement properties and clinical usefulness) provides a comprehensive overview and critical appraisal of available evidence for children using PM. 159, 160 More importantly, it can serve as a valuable source of synthesized information for clinicians, researchers and other interested stakeholders (i.e. clients, families, policymakers and funders) as they strive to implement evidence-informed practice and decision-making.159, 160    35 2.1.1 Purpose  The purpose of this systematic review was to identify and critically appraise participation measurement tools appropriate for potential use with children under 18 years of age with PM needs. Framing the systematic review in this way may advance our understanding of what tools might be suitable for describing children’s participation in everyday life for those using PM or investigating PM’s impact on children’s participation in everyday life. Our primary clinical question was ‘For children under 18 years of age with mobility limitations who may benefit from PM interventions, what measurement tools may be used to assess participation in everyday life situations?’ Secondary questions included ‘What aspects of participation do these tools address?’ ‘What are the reported measurement properties of these tools?’ and ‘What information supports the tools’ clinical usefulness?’  2.2 Method  The National Center for the Dissemination of Disability Research Comprehensive guidelines 159 along with the Preferred Reporting Items for Systematic reviews and Meta-Analyses statement (PRISMA) statement 161 were used to structure this systematic review.  2.2.1 Search Strategy An electronic database search, conducted by two reviewers identified primary peer-reviewed studies and systematic reviews published from database inception to January 2015. The nine databases were CINAHL; EBM Reviews (e.g. Cochrane Central Register of Controlled Trials, Cochrane Database of Systematic Reviews, Health Technology Assessment); EMBASE; ERIC;   36 Health and Psychosocial Instruments; Medline OVID SP; OT Seeker; Physiotherapy Evidence Database (PEDro) and PsycINFO. A multipurpose, keyword search strategy included word stem descriptors of children with mobility limitations, participation and measurement tools. Terms included child, adolescent, movement, motor, musculoskeletal, neuromuscular, (neuro)developmental, neuromotor or physical disease, disability or impairment, participation, everyday, life, situation, activity or involvement, assess, measure, question, interview, survey or tool. Two health librarians experienced in systematic reviews were consulted in search planning and documentation. Appendix A has a complete listing of keywords and search terms for each database while Appendix B provides a sample search strategy. Terms were used as keywords and where relevant for the database, mapped to subject headings. Manually searched bibliographies of electronically retrieved full text articles meeting inclusion criteria, along with targeted electronic tool and author searches also identified relevant additional publications.   2.2.2 Study and Tool Selection Two reviewers independently reviewed titles, then abstracts and if the abstract appeared relevant to inclusion criteria, the full-text was obtained. Given that development and testing of participation tools was not always the primary focus of publication, a two-step selection process was taken. Reviewers independently determined if full-text articles first met study inclusion criteria, and gathered referenced information once potential tools were identified. They then independently determined if tools met specific tool inclusion criteria, after all related publications on the identified tools’ development and testing were sought. They met after each step to reach consensus, with a third person identified in case consensus was not achieved.   37 Inclusion and exclusion criteria listed in Table 2.1 were set a priori. Participation was defined in reference to the ICF-CY Chapters 6 to 9.34  2.2.3 Data Extraction  The reviewers, independently and using a common form, extracted data that documented evidence source, measurement properties, conduct and rigour of reported measurement tool development. Evidence source information included author, name of measurement tool(s), study design and population characteristics. Descriptive information included participation aspects assessed, type and number of items and responses, targeted rater(s)/responder(s), population with which the tool was validated for use with and clinical usefulness information such as administration and scoring time, and environmental needs. 35, 122, 148 The tools’ measurement properties included reliability and validity evidence 108 organized using terminology and structure of two quality assessments. 124, 125 Responsiveness, or the ability to detect change when change was truly occurring, was listed separately because of its importance for evaluative purposes. 108, 112 Criterion-related validity was not assessed because no ‘Gold Standard’ for paediatric participation measurement exists. 35, 66, 122 Cross-cultural validity was also not included due to limited available information, given that the search was restricted to English-language.   2.2.4 Quality Assessment The two raters independently rated the evidence using two quality assessments, before meeting to reach consensus. The COnsensus-based Standards for the Selection of health Measurement INstruments (COSMIN) checklist, 124 developed by international consensus, provided a method for rating the methodological quality of studies on measurement properties of health status   38 measurement tools for use in systematic reviews, while the McMaster Outcome Measures Rating Form (OMRF)  125 provided a rating of reliability and validity results. These two rating scales have been used in other reviews, 38, 121, 149 and complement rather than duplicate one another’s ratings to provide a more comprehensive understanding of the evidence.   2.3 Results  Figure 2.1 illustrates the PRISMA flowchart 161 outlining the process and number of identified articles and measurement tools. From full-text review, 138 articles met study inclusion criteria. These articles described 50 tools, of which, 20 met tool inclusion criteria. These 20 tools were described in 85 of the 138 articles. Table 2.2 identifies the number and reasons for exclusion of full text articles, and measurement tools. The remaining 30 tools were excluded primarily because of their population, the tool’s measurement properties and/or clinical usefulness lacked description, or other constructs were assessed along with participation-related items. Initial agreement between reviewers was 83% for identification of eligible articles, and 88% for eligible tools. At all stages, consensus was achieved with discussion between the primary reviewers, without involvement of a third reviewer.   2.3.1 Study and Measurement Tool Characteristics Of the 85 articles that described the included measurement tools, 30 focused on tool development and evaluation of measurement properties, while 12 were review articles of participation tools for children with physical disabilities. The remaining 43 articles were primarily intervention studies that provided measurement properties of a participation-related   39 measurement tool. Table 2.3 describes the 20 included measurement tools. 45, 93, 96, 162-184 Validity evidence included children of various ages, diagnoses and abilities with the majority involving school-aged children, six included those in early childhood 93, 162, 167, 170, 176, 180 and another three were for youth only. 177, 179, 182 Thirteen tools were parent report, 45, 93, 162, 163, 167, 168, 170-172, 174, 176, 178, 180, 183 10 were child report 93, 96, 166, 169, 173, 176, 177, 179, 182, 183 and four tools were to be completed by educators and/or health professionals. 93, 164, 176, 184 Five of these tools included multiple respondents. 93, 96, 168, 169, 172, 176, 183 As for settings in which participation was evaluated, five measured participation in just one setting (home, 171 school, 164, 184 or community), 167, 177 four tools evaluated home and community participation, 162, 163, 166, 170 while the remainder evaluated home, school and community participation. 45, 93, 96, 168, 169, 172-176, 178-183 Objective dimensions of participation (e.g., number of life situations, frequency) 35, 122 were evaluated in 14 tools, 45, 93, 162, 164-171, 174, 178-180, 182, 183 while subjective dimensions (e.g. satisfaction, importance, enjoyment) 35, 122 were evaluated in 12 tools. 93, 96, 164, 166, 170-173, 178-180, 183, 184 The most commonly assessed objective dimension was frequency, 45, 162, 164-170, 174, 178, 179, 182, 183 while involvement was the most commonly assessed subjective dimension. 164, 165, 178, 180, 184 Two tools evaluated desire for change in participation, 178, 182 four tools reported on degree of problem, 93, 176, 177, 183 and 11 tools assessed contextual factors that influence participation, such as where, with whom, amount of assistance required, barriers or facilitators.  93, 163, 166, 168-171, 175, 176, 178-181, 184 Two 93, 176 of the four tools documenting use of assistive devices, 93, 168, 169, 176, 184 downgraded scores if assistive devices (such as PM) were used. Clinical usefulness documentation was limited although administration times were reported to be 10 to 40 minutes.      40 2.3.2 Measurement Properties 2.3.2.1 Reliability Evidence Appendix C(i,ii) summarizes evidence on the reliability testing results for the 20 measurement tools. 45, 93, 96, 162-207 For 11 tools, only the developers generated evidence of measurement properties, 45, 163, 167, 170, 171, 173, 174, 177, 178, 180, 182, 183 whereas other researchers contributed evidence for the remainder of the tools. Literature provided evidence supporting internal consistency (n=18) 45, 93, 162-173, 177-179, 182-184 test retest reliability (n=12), 93, 96, 166, 168, 170, 171, 176, 178-180, 183, 184 inter-rater reliability (n=5)  93, 166, 176, 180, 184 and intra-rater reliability (n=1). 93 Measurement error calculations were reported for two tools, Child Engagement in Daily Life (CEDL) 170, 206 and Children Helping Out: Responsibilities Expectations and Supports (CHORES). 171, 192   2.3.2.2 Validity Evidence  Appendix D(i,ii) summarizes details on the validity testing results for the 20 measurement tools.  1, 45, 93, 96, 162-225 All tools had reported evidence of face and/or content validity while many had evidence of construct validity. Construct validity was demonstrated primarily using the known groups method 112 to distinguish participation between two or more groups. Ten tools had evidence of convergent and/or discriminant validity, evaluated by comparing scores with other measurement tools, 45, 162, 163, 168, 171, 172, 177, 202, 207, 223 11 examined structural validity 163, 164, 166-171, 173, 181, 183, 184, 187, 190, 197, 213, 222, 226 and seven reported on hypotheses generated a priori. 1, 162, 163, 166, 191, 204, 206, 207, 223 Eleven tools 163-171, 173, 180, 183, 184 had dimensionality evaluation evidence. 124 Only two tools had evidence of responsiveness: the Child Engagement in Daily Life (CEDL) 206 and the Canadian Occupational Performance Measure (COPM).211, 212    41 2.3.3 Quality Ratings 2.3.3.1 Reliability Ratings  Table 2.4 summarizes quality ratings of reliability evidence presented in Appendix E. Three measurement tools, Preference for Activities of Children (PAC), 166 Child and Adolescent Scale of Participation (CASP) youth version 169 and Questionnaire of Young People’s Participation (QYPP) 183 achieved excellent ratings using the COSMIN checklist 124 but only for internal consistency. Half of the tools rated poor for internal consistency because they lacked unidimensionality testing, or did not report an internal consistency statistic for each subscale, or a goodness of fit statistic at a global level (if appropriate). COSMIN 124 downgraded quality ratings for relative reliability and measurement error because of small sample sizes, unknown study conditions or no description of how missing items were handled.    Three measurement tools achieved excellent overall reliability ratings using the OMRF 125 with supporting evidence from more than two studies. Tools rating excellent for internal consistency evidence included Assessment of Preschool Children’s Participation (APCP), 162, 185, 186 CASP parent version 168, 169, 190 and Pediatric Interest Profile (ALIP). 179, 202 The ALIP also rated excellent on supporting evidence for test-retest reliability. 179, 202 The remaining tools achieved adequate overall reliability ratings. Despite three tools having more than two publications,  171, 173, 184, 191, 192, 197, 198, 203-205 they had an overall rating of adequate because evidence came from only one or two studies. In contrast, rating reliability coefficients within individual studies yielded excellent ratings for seven tools on internal consistency, 163, 164, 170-172, 177, 184, 187, 191, 192, 205 four tools on test-retest reliability 168, 171, 180, 181, 183 and two tools on inter-rater reliability. 176, 180, 181 The ‘R’ designation referenced measurement properties from   42 administration manuals or unpublished manuscripts, not peer-reviewed sources. 38, 93, 96, 109, 148, 166, 172, 184, 188, 189, 193, 199, 203, 204 Most COPM 96, 193, 196 and MayoPortland Adaptability Index (MPAI) 175 reliability evidence were adult-generated and beyond the scope of this review. However, articles describing evidence for COPM 96 parent proxy 172 and MPAI 175 paediatric use 176 were rated.   2.3.3.2 Validity Ratings Table 2.5 summarizes quality ratings of validity evidence presented in Appendix F. All except four measurement tools 45, 174-176, 179, 184 rated excellent for content validity using the COSMIN checklist. 124 Most tools rated fair or poor for structural validity and hypothesis testing because they lacked description of how missing items were handled, had little description of study conditions, or had small sample sizes. The PAC166 and the APCP162 were the exception with good ratings for structural validity166 and hypothesis testing. 162, 166 Two studies rated excellent for structural validity 169, 231 but those same tools also had studies with lower ratings. 168, 173, 190, 197 Similarly for hypothesis testing, two studies rated good 166, 207 but other studies for those same tools rated lower. 1, 93, 209, 216, 227 The two studies with responsiveness evidence rated fair 206, 211, 212 because of sample size and lack of description regarding hypotheses, study conditions, and/or how missing items were handled.  All but three measurement tools 45, 174, 176, 184 rated excellent on OMRF 125 individual study ratings of content validity. Discrete OMRF 125 rating criteria for individual study’s construct or responsiveness evidence was not present, however, overall OMRF 125 ratings resulted in excellent construct validity evidence for six tools. 93, 166, 168, 172, 180, 184 All remaining tools rated   43 adequate overall for validity evidence, however one tool 45, 174 had items adapted from another tool 93 without report of further testing. Despite referencing more than two publications, four tools 45, 171, 173, 174, 178 rated adequate overall because data were derived from no more than two studies. Similarly, the two tools with responsiveness evidence came from one or two studies.206, 211, 212  2.4 Discussion  This systematic review was undertaken to answer our primary question (i) ‘For children with PM needs, what measurement tools are potentially available to assess participation in everyday life situations? and our secondary questions (ii) ‘What aspects of participation do these tools address?’ (iii) ‘What are the reported measurement properties of these tools’ and (iv) ‘What information supports the clinical usefulness of these measurement tools?’ Eighty-five of 138 studies identified in this review yielded 50 potential measurement tools, with 20 meeting tool inclusion criteria. 45, 93, 96, 162-184 Included tools differed in their evaluation of settings, dimensions of participation, response formats, and intended respondents. Most tools had evidence of at least adequate levels of reliability and validity, while few tools commented on clinical usefulness. The challenge then becomes selecting measurement tools that best meet the intended purpose.   2.4.1 Participation Tools  When determining what tool best fits the intended purpose, practitioners and researchers would be wise to solicit what is important to children and their families, as participation may mean different things to different people. 66 Most identified tools were parent and/or child self-report,   44 thereby obtaining participation information reflective of their everyday lives. 13, 35, 122 The COPM 96 uniquely relies on the child and/or parent to identify important participation concerns to be evaluated, while other tools evaluated a predetermined list of daily life situations. Tools that allow input from both parents and children 93, 96, 168, 169, 172, 175, 176, 183 may be valuable considering children’s and parents’ views of participation may differ. 66 Tools evaluating the child’s participation within the context of the family’s participation may also be beneficial, 35, 66 especially for children needing PM with cognitive or complex disabilities. 9, 10, 80 A number of qualitative paediatric PM studies describe children’s and parents’ perspectives and the importance they place on participation in daily life. 80 Having participation tools that document their experience using PM more systematically will facilitate research efforts.9, 10, 80  2.4.2 Quality Ratings, Measurement Properties and Clinical Usefulness Despite having a range of tools to choose from, many reviewed measurement tools had limited reliability and validity evidence supporting their use. This was not surprising given the number of tools developed recently in response to the ICF framework’s 33, 34 inclusion of participation. More tools achieved excellent ratings using the OMRF 125 compared to using the COSMIN checklist. 124 Rating reliability and validity information (as done using the OMRF 125) is a more familiar investigation method than rating study conduct (as done using the COSMIN checklist124). However, both evaluations are useful when selecting suitable measurement tools. Studies were strongest for content validity and internal consistency, as one might expect, since these two measurement properties are often addressed in initial tool development. 112 None achieved excellent ratings for other forms of reliability and validity suggesting that further empirical evidence is needed. Several researchers provided initial reliability and validity   45 evidence yet acknowledged that tool development and evaluation was on-going. 162, 163, 170, 177, 178, 183 Interestingly, more established tools 93, 96, 166, 184 referenced measurement properties from non-peer reviewed sources. This suggests that standards for tool development, evaluation and reporting have changed over the years, and that perhaps tools developed more recently are better situated to meet newer standards. 124 If we use our quality rating tools 124, 125 as guides, then the Assessment of Preschool Children’s Participation (APCP), 162 Preferences for Activities of Children (PAC), 166 Child and Adolescent Scale of Participation (CASP), 168, 169 Child Engagement in Daily Life (CEDL), 170, 206 Canadian Occupational Performance Measure (COPM), 96 Questionnaire of Young People’s Participation (QYPP) 183 measurement tools had higher quality reliability and validity evidence than other tools. Several researchers used Item Response Theory (IRT) approaches to inform tool development. 163, 168, 170, 171, 173, 181, 226 IRT methods typically use larger sample sizes, with more robust analyses and interpretations, 112 but assumptions that (i) the scale measures one underlying latent trait (or dimension) and (ii) a hierarchical structure to questions and responses exists, must be met. 35, 108 This raises thought-provoking questions when thinking about how best to measure participation: is participation unidimensional? and does it follow a hierarchical structure? Conceptual models proposed by some researchers 2, 3, 13 and some developers’ rationale for tool development 183, 200 suggest otherwise.    Methods used to validate score interpretations should fit the theoretical rationale chosen when developing the measurement tool, and should be suitable for the hypotheses tested. 112 Although few tools had evidence of hypothesis testing, some tools 93, 96, 168, 173, 200 were grounded in a theoretical framework. Several tools, based on different conceptual models, 93, 96, 167, 184 were   46 developed prior to the introduction of the ICF,  33, 34 yet remain relevant with a body of empirical evidence supporting their use. 109, 121, 122, 148, 155 Other tools 162, 166, 168, 174, 178, 180, 197 developed more recently, use current definitions of participation. 33, 34   2.4.3 Application to Paediatric Power Mobility Some of the earlier theoretical models referenced in several participation tools’ development, have been discussed in the paediatric PM literature, introduced in Chapter 1. 9, 80 These models facilitate understanding of concepts we are attempting to measure and provide rationale for inclusion of specific items. Two tools 93, 96 identified in this systematic review have also appeared in paediatric PM literature. The COPM 96 was used to detect change in occupational performance and satisfaction following PM provision in two studies, 7, 67 while the Assessment of Life Habits (LIFE-H)  93 was used in a cross-sectional study to evaluate life habits among groups of children using different types of mobility devices (PM being one type). 1 Although it is encouraging to see occupational performance and life habits being evaluated in paediatric PM research, these three studies offered little description or insight into children’s use of PM or the role PM played in enabling children to participate in desired in life situations. To make meaningful interpretations of the scores and advance our understanding of participation in everyday life for children using PM, more in-depth accounts describing children’s participation when using PM are needed along with changes in scores of participation tools. Additionally, establishing the tools’ responsiveness with this population is critical before judgments are made about PM’s impact on children’s participation in everyday life.     47 As discussed in Chapter 1, choice of measurement tool may be influenced by the depth and complexity of desired participation information as well as the tools’ clinical usefulness. 35, 122 Although acceptability of tool questions and format were evaluated for some tools within the context of content validity, other aspects (e.g., who can administer the tool, training required, availability, cost, and score interpretability) were reported on less consistently. Administration time varied, from very brief 177 to comprehensive participation coverage. 93, 166 Administration time is a key consideration with PM interventions because participation in everyday life is just one of many areas assessed. 9, 10, 80 How measurement tools address use of assistive devices is another important consideration for those using PM. 123, 157 Two of four tools addressing assistive device use 168, 184 acknowledged use without affecting scores, yet two tools downgraded scores. 93, 175, 176 Downgrading scores is punitive 123, 157 and counterintuitive, given that PM goals are often to enhance independent mobility and participation in everyday life. 20, 22 Knowing this information will help guide selection of potential participation tools for those using PM.  2.4.4 Limitations Several limitations may affect generalizability of our review’s findings. Other relevant evidence might have been overlooked because of chosen search terms, and electronic databases; or restrictive inclusion and exclusion criteria limiting consideration of potential tools (e.g. English language, and peer-reviewed journals). However, we mitigated this concern by reviewing our search strategy with experienced health sciences librarians and including two reviewers who independently screened articles following clear eligibility criteria. Additionally, a publication bias with selective reporting may have limited exposure to meaningful tool information. Our findings may have been influenced by criteria used within the chosen quality rating tools, and as   48 our quality ratings suggest, reporting standards and terminology may have changed over the timespan in which the studies occurred, with study designs, sample sizes, statistical methods and rudimentary analyses once considered high quality at their time of publication, not readily meeting contemporary expectations. For some tools, 162, 166, 171, 203 additional non-English language information about measurement properties were not included in this review. Finally, the Young Children’s Participation and Environment Measure (YC-PEM), 219, 228 a recently developed English-language tool, may have potential, however we were unable to obtain detailed information about the items used to evaluate participation, so excluded it from our review.   2.5 Conclusion  This systematic review advances our knowledge about available participation tools, and sets a foundation from which evidence-based decisions can be made. In this chapter, 20 measurement tools meeting inclusion criteria were identified and critically appraised. Given the current evidence, no single participation tool stood out as being most appropriate for children using PM, although several tools demonstrated potential. Moreover, each tool was developed for different ages of children, used different respondents and evaluated different dimensions of participation. To further guide tool selection for children using PM, the following chapter investigates what dimensions of participation are important to measure for our population and examines suitability of available measurement tools.      49 Table 2.1 Inclusion and Exclusion Criteria  Study Inclusion Tool Inclusion  English language, peer-reviewed, primary articles, systematic reviews or meta-analyses  focused on children aged 18 months to 17 years  included participants with motor impairments or movement disorders due to neurological, neuromotor, neuromuscular or musculoskeletal condition   participant characteristics were described in sufficient detail to determine that some might benefit from PM (e.g. Gross Motor Function Classification System (GMFCS) 229 levels III-V for children with CP). They may be non-ambulatory, ambulate for short distances and/or use walking aids  tool description used in the evaluation of participation included reference to measurement properties and clinical utility  detailed description of scale items and responses enabled judgement about tool content  scale or subscale items represented > 2 dimensions of participation as defined in ICF-CY 34 Chapters 6-9  85 percent (%) or more of scale or subscale items related to some aspect of participation (including barriers or facilitators)  evidence of English language version’s measurement properties and clinical utility included children under 18 years with a motor impairment or movement disorder affecting independent mobility  detailed evidence of measurement properties included reliability, validity, responsiveness and/or clinical utility Study Exclusion Tool Exclusion  individuals younger than 18 years were included along with adults, however the younger group comprised less than 15% of the sample  age of participants were not identified  evaluated burden of care; quality of life or health related quality of life  evaluated environmental considerations in isolation of participation  individualized, goal-setting tools for intervention did not specifically address participation outcomes     50 Figure 2.1 PRISMA161 Flowchart of Search Results        Records identified through database searching (n = 2323)  Screening Included Eligibility Identification Additional records identified through hand searching (n = 45) Records after duplicates removed (n = 1330) Records excluded by title (n = 790) Records excluded by abstract (n = 223) Unable to locate full text (n = 2)  Total excluded (n = 1015) Full-text articles assessed for eligibility (n = 315)  Full-text articles excluded with reasons  (n = 177)  Studies included that described measurement tools in detail  (n= 138) Participation measurement tools included (n = 20) Measurement tools excluded with reasons  (n = 30)     Measurement tools reviewed (n = 50)   51 Table 2.2 Excluded Full Text Articles and Measurement Tools  Full-Text Articles Excluded (n = 177) Measurement Tools Excluded (n = 30)  Child participation measured, but inclusion criteria not met n=72 Not focused on participation n=54 Adult participation tool n=26 Descriptive information only about participation n=12 Qualitative study design n=12 Full text not found n=1 <85% of items related to participation n=22 No evidence of measurement properties for children n=7 No evidence of validation for children with motor impairment n=7 Only 1 dimension of participation (i.e. play) n=4 Tool developed and tested in language other than English n=3 Unable to locate details of tool n=1    52 Table 2.3 Description of Paediatric Participation Tools  Tool Population Dimensions Items Response Format and Scoring  Assessment of Preschool Children’s Participation (APCP) 162  preschool children aged 2 years to 5 years 11 months     diversity   frequency  intensity  Evaluates participation in home and community 45 items across 4 subscales:   Play- 9 items   Skill Development- 15 items  Active Physical Recreation- 10 items  Social Activities- 11 items   Parent/caregiver report   For each item:  Yes or no indicated if child did activity during previous 4 months,  (Diversity) & if yes, how frequently using 7-point ordinal scale (Frequency Intensity)    Scores generated:  For Total & each of 4 subscales Diversity- sum of items answered yes Frequency- sum of frequency     /actual # participated in Intensity- sum of frequency    /total # items listed Assistance to Participate Scale (APS)163 children 5 to 18 years with a disability    extent of assistance provided to child during play and leisure Evaluates participation in home and community 8 items across 2 subscales:  Home Alone- 4 items  Community Social- 4 items   Parent/caregiver report  For each item:      Degree of assistance rated      using 5-point scale  Scores generated:    Total & subscale scores Availability and Participation Scale (AvailabilityPS) 164, 165 school-aged children  with a disability    degree of activity availability   degree of child’s participation in  activity  Evaluates participation in school English version: 27 items across 6 factors (social, recreational, communal, creative, civic & academic)   Teacher report164  For each item: Degree of availability & Degree of participation scored using  4- point ordinal scales  Scores generated: Availability & Participation Total scores165    53 Tool Population Dimensions Items Response Format and Scoring   Aggregate Participation Score calculated164 converted to standardized Z scores to allow comparison across students Children’s Assessment of Participation and Enjoyment  (CAPE) 166 and accompanying Preference for Activities of Children (PAC)166 young people aged 6 to 21 years   diversity  intensity  location  with whom  enjoyment  Evaluates participation in home and community  [preference assessed by Preference for Activities of Children166]  55 items across 2 domains &  5 activity type subscales:  Domains:   Informal- 40 items  Formal- 15 items (i.e., structured with rules & instructors)  Activity types:  Recreational- 12 items   Social- 10 items  Active-physical- 13 items    Skill-based- 10 items   Self-improvement- 10 items   Child self report (with parent/caregiver assistance as needed)   Interviewer-administered vs printed booklet   For each item: yes or no indicated if child did activity during previous  4 months,  if yes, rate intensity using  7-point ordinal scale Where using 6-point scale      Whom using 5-point scale      Enjoyment using 5-point scale  Scores generated:  Dimension scores calculated for overall participation, domain &/or activity type subscales Community Activities Questionnaire (CAQ)167 preschool children aged to 2 to 5 years   frequency  Evaluates participation in community  18 items related to community activities     Parent/caregiver report   For each item: Estimate number of times child has engaged in item in past week, month or 6 months Child and Adolescent Scale of Participation (CASP) 168, 169   children aged 5 to 18 years      participation as compared to other children of same age  Evaluates participation in 20 items across 4 subsections:  Home- 6 items  Community- 4 items  School- 5 items  Home & Community Living  Parent/caregiver report for children 5 years & older168  Youth self report for children 11 to 17 years169     54 Tool Population Dimensions Items Response Format and Scoring   home, school and community   Activities- 5 items  Interviewer-administered for face to face or phone   Printed booklet for face to face or mail survey   For each item: rated using 4-point scale or not applicable  Additionally 4 open-ended questions asking about barriers & facilitators to participation  Scores generated:    Summed, averaged &     converted to 100-point     scale for overall      participation vs subsections Child Engagement in Daily Life Measure 170  preschool children aged 18 to 60 months  frequency (Part I)  enjoyment (Part I)  (performance/degree of assistance- Part II)  Evaluates participation in home and community 18 items across 2 parts: Part I   Participation in Family and Recreational Activities-  11 items Part II  Participation in Self Care- 7 items  Parent/caregiver report  For each item in Part I: Frequency & Perception of child’s enjoyment rated using  5-point scales  For each item in Part II: Performance/Degree of assistance rated using 5-point scale   Scores generated:    Sum of raw scores    converted to scaled score    for each of Part I & II Children Helping Out: Responsibilities Expectations and Supports (CHORES)171 children aged 6 to 14 years    performance   degree of assistance  Evaluates participation in home 34 items across 2 subscales  Self Care- 13 items  (managing own needs and belongings  Family Care- 21 items  (ability to take care of other’s  Parent/caregiver report  For each item: Performance indicated by yes or no if child did activity  Degree of assistance rated using 6-point scale   55 Tool Population Dimensions Items Response Format and Scoring   needs and belongings)       Additionally, two attitudinal questions, one Importance & one Satisfaction, rated using   6-point scale, each with open-ended comments   Scores generated:   Performance- sum of yes     responses   Assistance- summed,     averaged & converted to   100-point scale for total   participation vs subscales Canadian Occupational Performance Measure  (COPM) 96  individuals of all ages  importance  performance  satisfaction  May evaluate participation in home, school and community, dependent on individual’s selected (productivity and/or leisure) goals  up to 5 items (goals) selected based on importance related to:   self-care (personal care, community & mobility activities)  productivity (home & school activities)  leisure (play & recreation)   Semi-structured interview with child (if 8 years or older)96   parent/caregiver (if under 8 years)172  For each item:      rate Importance to      identify up to 5 goals.        Performance &      Satisfaction rated on       10-point scales   Scores generated:   Performance &    Satisfaction scores   summed & averaged    over number of goals    selected.     Change scores determined    on re-administration Child Occupational Self Assessment (COSA)197  children aged 6 to 17 years with a disability    competence  importance   Evaluates participation in 25 items related to participation at home, school and community    Child self-report  Administered in three formats: i. print with visual cues ii. card sort version iii. summary form without cues   56 Tool Population Dimensions Items Response Format and Scoring  home, school and community  For each item: Perceived Importance (value) & Competence rated using 4-point scales. * Can use 2-point scale for younger children or those with intellectual disabilities  Additionally 3 open-ended   questions invite children to share information about strengths, challenges and activities of importance.  Scores generated:    normative or criterion    referenced scores not generated     but rather ratings determine     gaps & areas to focus on in     therapy  Frequency of Participation Questionnaire (FPQ)45, 174 children aged 8 to 12 years   frequency  Evaluates participation in home, school and community 14 items related to participation at home, school and community    Parent/caregiver report  For each item: Frequency rated using 6-point scale  Scores generated:   Total score Assessment of Life Habits (LIFE-H)93   individuals of all ages  different versions dependent on age, respondent, length & format currently available:  children aged 14 years & older (including adults): General Version 3.113    accomplishment of life habit      amount of assistance   respondent’s satisfaction   Evaluates participation in home, school and community Number of items vary depending on length, but all represent 11 (or 12 for children 5 years and older) life habit categories across 2 domains Daily Activities domain:   communication  personal care  housing   mobility  Child self-report  (not 0-4 years version)  Parent/Caregiver Report  Professional Evaluation  Interviewer-administered   print vs electronic format  For each item: Accomplishment Level score using 10-point scale  generated from combination of Accomplishment using 5-point   57 Tool Population Dimensions Items Response Format and Scoring  children aged 5 to 13 years: LIFE-H Child 5–13 Version 1.08  children aged 0 to 4 years: LIFE-H for Children 0-4     nutrition  fitness Social Roles domain:  recreation  responsibility   education   community life  interpersonal  relationships  (work/employment)  LIFE-H General Version 3.113   Short form- 77 items   Brief form- 16 items   Long form- 242 items  LIFE-H Child 5–13 Version 1.08  Short form- 64 items  Long form- 198 items LIFE-H for Children 0-4   Long form- 71 items rating of Degree of difficulty & 4-point rating of amount of Assistance (+ not applicable) Respondent’s Satisfaction rated using 5-point scale  Scores generated:   Weighted Total score, Domain & category scores  MayoPortland Adaptability Index (MPAI)175, 176  children aged 1 to 18 years (as well as adults) with acquired brain injury (ABI)  problems affecting daily life after ABI  for some items, rating addresses assistance needed   Evaluates participation in home, school and community 8 items in Participation Index  Initiation   Social contact   Leisure/recreational activities   Self-care   Residence   Transportation   Work/school   Money management  29 items in total for MPAI-4 12 items in Ability Index 12 items in Adjustment Index (3 items same for Participation & Adjustment Indexes)  Child self-report  Parent/caregiver report  Professional evaluation- individual or group consensus  For each item: Degree of problem affecting daily life rated using 5-point scale  Scores generated:    Participation Index score    [as well as Total score,     Ability & Adjustment     Index scores]    58 Tool Population Dimensions Items Response Format and Scoring  Pediatric Community Participation Questionnaire  (PCPQ)177 young people aged 8 to 20 years  degree of difficulty participating Evaluates participation in community 19 items related to community activities   Child self-report  Interviewer-administered for face to face or phone   For each item:    degree of Difficulty participating rated using 6-point scale, can indicate don’t know or not appropriate   Scores generated:    Total score  Participation and Environment Measure for Children and Youth (PEM-CY)178 children aged 5 to 17 years   frequency   involvement  desire for change   facilitators  barriers  strategies to promote participation  Evaluates participation in home, school and community 25 items across 3 settings:  Home- 10 items  School- 5 items  Community- 10 items Facilitators & Barriers:  Home- 8 items + 4 items  School- 12 items + 4 items  Community- 13 items +                                 4 items    Parent/caregiver report  For each item: Frequency in last 4 months    rated using 8-point scale, Involvement rated using 5-point scale, Desire for change indicated using 6 options    Supports & barriers rated using either 3- or 4-point scales. Space provided to comment on 3 strategies used to support participation   Scores generated:    Summary scores for Frequency, Involvement, Desire for Change, Environmental scores Paediatric Interest Profiles (PIP)   Adolescent Leisure Interest Profile (ALIP) 179  youth aged 12 to 21 years   frequency  enjoyment   with whom                  competency                   interest & why         83 items  + 5 items child/ youth identified  Categories: Sports activities Outside activities Creative activities  Child Self-Report  For each item: Enjoyment, with whom and       competency rated using       3-point scale       Interest rated using       5-point scale    59 Tool Population Dimensions Items Response Format and Scoring  Evaluates participation in home, school and community     Socializing Exercise activities- ALIP Relaxation activities- ALIP Intellectual activities- ALIP Club/Community Organizations- ALIP  Scores generated:    Total score and category   scores for each dimension Preschool Activity Card Sort (Preschool ACS)180  children aged 3 to 6 years  participation   involvement                  discussion of importance, frequency, barriers & facilitators as well as parent’s satisfaction of child’s participation   Evaluates participation in home, preschool and community 85 items across 7 domains:  self-care- 15 items  social interaction- 12 items  domestic chores- 11 items  education- 10 items  sedentary leisure- 11 items  vigorous leisure- 10 items  community mobility- 16 items  Version 2181 revisions involve additions of 6 education, 1 sedentary leisure and 2 vigorous leisure items and removal of 3 domestic chores  Semi-structured interview with parents using cards with photos of specific activities  For each item: Participation rated using 6-point scale that describes involvement   Scores generated:   Domain scores Quality of Social Functioning Scale /Index (QOSF) 182 youth aged 12 to 18 years   frequency  desired frequency  Evaluates participation in home, school and community 11 items with two parts/item  Part A- frequency of doing the item during a month  Part B- how often would like to do item during a month  Child self-report  Interviewer-administered for face to face or phone   For each item:    Part A and Part B each rated using 6-point scale  Scores generated:     Index score calculated by subtracting Part A from Part B for each item, then sum differences of each item/total # items   60 Tool Population Dimensions Items Response Format and Scoring  Questionnaire of Young People’s Participation (QYPP) 183  young people aged 14 to 21 years   frequency  Evaluates participation in home, school and community 45 items across 7 domains:   Getting on with others-  8 items  Autonomy- 4 items  Recreation- 14 items  Home life- 5 items  Education- 5 items  Work/finances- 4 items  Preparing for future- 5 items  Child self-report  Proxy (parent/caregiver) report  For each item:   Degree of difficulty participating rated using   response scales with up to 7 choices  Scores generated:      Total and domain scores  School Function Assessment  (SFA) 184 Participation section (Part I) only elementary school aged children 5 to 14 years with a disability     degree of participation across school settings   Evaluates participation in school  6 items in Part I Participation   classroom (regular or specialized)   playground/recess  transportation  bathroom/toileting   transitions   mealtime/snack time  SFA consists of 3 sections:  Part I Participation  Part II Task Supports [21 items rated on assistance & adaptations using 4-point scales] Part III Activity Performance (265 items) [21 activity performance sections rated using 4-point scales]  Teacher or other school personnel report   For each item: Degree of participation scored using 6-point ordinal scale  Scores generated:      Items summed, and       converted to 100-point       criterion Participation       score. A score of       100 represents a criterion      of full grade-appropriate       functioning   Legend: ‘&’ = and; ‘/’ = divided by; ‘#’ = number.    61 Table 2.4 Summary of Reliability Evidence Quality Ratings  Measurement Tool COSMIN rating 124 Lowest rating as specified in COSMIN guidelines124 E = excellent, G = good, F= fair, P = poor OMRF rigour of studies’ reliability evidence125 Lowest rating as specified in OMRF guidelines125 E = more than 2 studies supporting evidence A = 1 to 2 studies supporting evidence   Internal Consistency Reliability Measurement Error Internal Consistency Test-retest  Inter-rater  Intra-rater Assessment of Preschool Children’s Participation (APCP)162, 185, 186 P    E    Assistance to Participate Scale (APS)163, 187 F   A    Availability and Participation Scale (AvailabilityPS)164, 165 P   A    Children’s Assessment of Participation and Enjoyment (CAPE) 166, 186, 188, 189 and Preference for Activities of Children (PAC)166, 186, 188, 189 P CAPE    E PAC  test-retest R F  inter-rater R F   A  CAPE & PAC A  CAPE A  CAPE  Community Activities Questionnaire (CAQ)167 P    A    Child and Adolescent Scale of Participation (CASP)168, 169, 190 P Parent version  E Youth version test-retest F    E Parent version A Youth version A Parent version     Child Engagement in Daily Life Measure (CEDL)170, 206 F test-retest P P  A A   Children Helping Out: Responsibilities Expectations and Supports (CHORES)171, 191, 192 P  test-retest P P  A A   Canadian Occupational Performance Measure (COPM)172, 193, 230 F  Parent proxy version test-retest R P inter-rater P   A Parent proxy version R A  A Parent proxy version  Child Occupational Self Assessment (COSA)173, 197, 198, 231 F    A    Frequency of Participation Questionnaire (FPQ)45   P   A      62 Measurement Tool COSMIN rating 124 Lowest rating as specified in COSMIN guidelines124 E = excellent, G = good, F= fair, P = poor OMRF rigour of studies’ reliability evidence125 Lowest rating as specified in OMRF guidelines125 E = more than 2 studies supporting evidence A = 1 to 2 studies supporting evidence   Internal Consistency Reliability Measurement Error Internal Consistency Test-retest  Inter-rater  Intra-rater Assessment of Life Habits  (LIFE-H) 93, 109, 148, 207,  R P P  R A A A A MayoPortland Adaptability Index (MPAI)175, 176  test-retest F  inter-rater P    A A  Pediatric Community Participation Questionnaire  (PCPQ)177 P   A    Participation and Environment Measure for Children and Youth (PEM-CY)178, 201 G P  A A   Pediatric Interest Profile - Adolescent Leisure Interest Profile (ALIP)179, 202 P   test-retest  G (PD) P (TD)   E E   Preschool Activity Card Sort  (Preschool ACS)180, 181 P test-retest P inter-rater P   A A A  Quality of Social Functioning Scale and Index (QOSF)182 P    A    Questionnaire of Young People’s Participation (QYPP)183 E test-retest F   A A   School Function Assessment (SFA)184, 204, 205, 226 F  test-retest P inter-rater P  A A  A  Legend: A = adequate; COSMIN = COnsensus-based Standards for the Selection of health Measurement Instruments; 124 E = excellent; F = fair; G = good; OMRF = McMaster Outcome Measure Rating Form; 125 P = poor; R = referenced from other source: unable to locate original, or not peer-reviewed source;  PD = those with physical disabilities; TD = those who are typically developing; & = and.   63 Table 2.5 Summary of Validity Evidence Quality Ratings  Measurement Tool COSMIN Rating124 Lowest rating as specified in COSMIN guidelines124 E = excellent, G = good, F= fair, P = poor OMRF rigour of studies’ validity evidence 125 Lowest rating as specified in OMRF guidelines 125 E = more than 2 studies supporting evidence A = 1 to 2 studies supporting evidence  Content Validity Structural Validity Hypotheses Testing Responsiveness Content Validity Construct Validity Responsiveness Assessment of Preschool Children’s Participation (APCP)162 E  G   A  A   Assistance to Participate Scale (APS)163, 187, 208 E F F  A A  Availability and Participation Scale (AvailabilityPS)164, 165 E F F  A   Children’s Assessment of Participation and Enjoyment (CAPE) 166, 186, 188, 189 and Preference for Activities of Children (PAC) 166, 186, 188, 189  CAPE & PAC E PAC G CAPE F  PAC G  A E  Community Activities Questionnaire (CAQ)167 E F F  A A  Child and Adolescent Scale of Participation (CASP)168, 169, 190 E P  F  A E  Child Engagement in Daily Life Measure (CEDL) 170, 206 E F F F A A A Children Helping Out: Responsibilities Expectations and Supports (CHORES)171, 191, 192 E P F  A A  Canadian Occupational Performance Measure (COPM)172, 193, 230 E  F Parent proxy F Parent proxy A Parent proxy E Parent proxy A Parent proxy Child Occupational Self Assessment (COSA)173, 197, 198, 214, 231 E P F  A A  Frequency of Participation Questionnaire (FPQ)45 F  F  A A    64 Measurement Tool COSMIN Rating124 Lowest rating as specified in COSMIN guidelines124 E = excellent, G = good, F= fair, P = poor OMRF rigour of studies’ validity evidence 125 Lowest rating as specified in OMRF guidelines 125 E = more than 2 studies supporting evidence A = 1 to 2 studies supporting evidence  Content Validity Structural Validity Hypotheses Testing Responsiveness Content Validity Construct Validity Responsiveness Assessment of Life Habits (LIFE-H)93, 109, 148, 207 E  P    A E  MayoPortland Adaptability Index (MPAI)175, 176 F  P  A A  Pediatric Community Participation Questionnaire (PCPQ)177 E  F  A A  Participation and Environment Measure for Children and Youth (PEM-CY)178, 201 E  F  A A   Pediatric Interest Profile - Adolescent Leisure Interest Profile (ALIP)179, 202 F  F  A A  Preschool Activity Card Sort (Preschool ACS)180, 181 E P F  A E  Quality of Social Functioning Scale and Index (QOSF)182 E  P  A A  Questionnaire of Young People’s Participation (QYPP)183, 222 E P  F  A A  School Function Assessment (SFA)184, 204, 205, 226 G  P F  A E  Legend: A = adequate; COSMIN = COnsensus-based Standards for the Selection of health Measurement Instruments; 124 E = excellent; F = fair; G = good; OMRF = McMaster Outcome Measure Rating Form; 125 P = poor; & = and.     65  Reaching Expert Consensus on Participation Outcomes Important to Measure Chapter 3:for Children Using Power Mobility and Determining Suitable Measurement Tools  3.1 Introduction  The systematic review in Chapter 2 advances knowledge about available participation tools, and informs evidence-based decisions, yet questions remain about how best to use this information for children using PM. In the last chapter we learned that numerous tools are available that might work for children with varying degrees of mobility limitation. Critical appraisal of the included tools found a broad range of evidence supporting measurement properties and clinical usefulness, as well as considerable variation in quality ratings. Findings suggest both positive and negative consequences. On the positive side, having such choice provides an opportunity to select tools that may fit better with a specific client’s situation. On the negative side, this choice can be confusing and overwhelming, leaving professionals with a sense of bewilderment not knowing which tool to pick, given participation is a complex construct and quality of measurement properties vary. 2, 3, 35   Recognizing that participation in everyday life for those using PM may be different from those who walk or use manual mobility devices, 1 determining what elements of participation are most important to measure for children using PM is a needed to assist stakeholders in their decision-making, given that different tools address different dimensions of participation, and capture different perspectives (e.g. therapist vs. parent vs. child) using different response formats. 66, 122, 148 Rather than adopting existing measurement tools with children using PM on an   66 ad-hoc basis, a more systematic approach is warranted. We define ‘elements of participation’ to encompass the ‘who, what, where and how’ of participation measurement. These elements incorporate who should be the focus of the evaluation, whose views should be sought as respondents, what kinds of participation, how and where participation in everyday life should be measured (objective, subjective and contextual dimensions). 2, 3, 35 Measurement tools can then be compared based on elements of importance, to identify what tools are most suitable for a particular situation. Given the variation in participation tools and the broad age-span and abilities of PM users, it may be unrealistic to expect one tool to address the range of life situations important for young people using PM. One option might be to develop a measurement toolkit, offering choice of tools dependent upon measurement purpose, age, functional abilities, and environmental contexts being considered for evaluation.232  Calls for consensus have been raised in wheeled mobility 104, 233 and paediatric rehabilitation 155 to better understand and determine how best to measure participation for specific client groups, understand their rehabilitation needs, identify relevant tools and develop more effective interventions. 128, 234 The Delphi survey technique is an iterative survey method 235 consisting of a structured process of sequential rounds, developed to build consensus when uncertainty or lack of empirical evidence exists. 236 Consensus-building using this technique has been demonstrated in clinical guideline development, 235 outcome determination for measurement in clinical trials, 237 and various problem identification and planning initiatives for research, education and service delivery. 238 Priority setting developed using this formal consensus method minimizes bias and strengthens scientific credibility and methodological transparency 235, 237 while drawing on the best available evidence from collective knowledge and experiences of participants.236, 239   67  Stakeholders’ information goals are key guiding factors for measurement tool development and selection. 148 As such, it is extremely valuable to have stakeholder input into identifying and prioritizing participation elements important for children using PM. Those with practical knowledge of how children use PM may know best what outcomes are important for participation in everyday life. 13, 240 Clinicians and researchers specializing in paediatric participation-focused PM interventions have firsthand knowledge and a vested interest in identifying clinically important and meaningful elements of participation. Likewise, parents of children using PM have a unique and ecologically valid expertise in dealing with their children’s day to day challenges and strategies for promoting participation at home, at school and out in the community. 13, 35, 80 Although children may provide the best insight into their own participation, developmental or disability-related challenges may prevent them from providing reliable information. 66, 241 Seeking input from stakeholders who will be using this information and engaging them from the start is valuable, both for informing research and carrying out integrated knowledge translation activities.148, 237  3.1.1 Purpose The purpose of this study was to (a) advance understanding of what participation-related information is important to measure for children using PM and, (b) determine how best to measure these elements of participation.      68 Specific objectives were to: 1. Identify and reach consensus on elements of participation in everyday life important to measure for children using PM. 2. Prioritize important content and features to be included in participation-focused measurement tools. 3. Map these elements to existing participation measurement tools. 4. Use the identified important elements to distinguish suitable tools for measuring participation in children who use PM to (a) evaluate participation-related information of value when assessing PM, and (b) evaluate change in participation after provision of PM interventions. 5. Identify tools to be considered for inclusion in a measurement toolkit for clinical and research applications (aptly named the POWER (Paediatric Participation Outcomes for Wheelchair Evaluation in Rehabilitation) Mobility toolkit)  6. Identify a network of therapists and researchers involved in this area of investigation for knowledge exchange and future collaborations.  3.2 Method  3.2.1 Design  We employed an online modified Delphi survey technique 236 (Figure 3.1) to engage key stakeholders and advance participation measurement. 128, 234, 240 This method afforded ‘quasi-anonymity’ (i.e. unknown to each other, but known to the researcher);236 participants never interacted directly, allowing for non-biased disclosure while lessening the effect of group   69 pressure and inter-personal dynamics. 237 The Delphi technique was selected because of its cost-effectiveness in communicating with a geographically-diverse panel, overcoming issues with meeting in real-time over multiple time zones. 236, 238 It also gave participants time to reflect and answer questions thoughtfully, on their own time. 238, 239 To maximize efficiency, a modified Delphi technique was chosen, incorporating a more structured first round, with content based on a literature review rather than open-ended questioning. 236, 238 The iterative nature of the Delphi technique fit with our objective of integrating knowledge exchange from the study outset.   3.2.2 Participants  Participants were a purposive sample of parents, therapists and researchers with expertise in paediatric PM and participation in everyday life. Careful consideration of who to include as participants was one strategy taken to reduce dropout rates as individuals more familiar with the topic under investigation were expected to have more passion about the topic, and be more likely to stay committed throughout the process. 236, 239 Figure 3.2 specifies inclusion and exclusion criteria set to identify those with significant experience living or working with children using PM or with expertise in measuring participation for children who have physical disabilities. We chose to restrict the ages of children from 18 months to 12 years to focus our investigation, given that participation looks very different across developmental stages from infants to young adulthood. Recognizing that sample sizes for Delphi surveys vary considerably (ranging from 15 participants to more than 50), 236, 238 we sought a total sample size of 60 participants, with 20 participants each for parents, therapists and researchers. We wanted adequate stakeholder subgroup representation given their different perspectives, to ensure the panel represented a diverse group, but over-sampled to allow for attrition.  236, 239    70 3.2.3 Sampling Procedure   Parents of children using PM and therapists were recruited in North America by posting recruitment information in various physical and electronic locations, including clinics, conferences, e-newsletters and magazines. Additionally, therapists and researchers (from within North America and beyond) potentially meeting inclusion criteria were emailed invitations directly. Purposive sampling was thought to be a more appropriate and efficient recruitment strategy for targeting key informants given that paediatric PM and the measurement of participation are very specialized areas of practice and research. 236 Snowball sampling was also used to expand recruitment to colleagues within individuals’ networks who may meet inclusion criteria.   Study information was provided at least one week prior to survey commencement. After individuals initiated contact, a copy of the consent form describing the study was sent via email. Details of the study included objectives, an explanation of the Delphi survey process, privacy and confidentiality information, rights and expectations as participants (what was required of them, amount of time needed, timeline, and types of information collected). Participants were informed that consent would be indicated by activation of the initial survey link, but that they were free to withdraw at any time without consequence. To encourage retention, an honorarium, offsetting their time and expenses, was provided for participants ($25/survey round completed). The Clinical Research Ethics Board at the University of British Columbia provided ethical approval before recruitment commenced.    71 3.2.4 Data Collection  A personalized survey link and instructions for completion were emailed on day one of each round. Participants were instructed to contact the team if questions or technical difficulties arose. Each round, designed to take less than one hour to complete, was available online, 24 hours a day for a minimum of three weeks. Participants were instructed to consider and provide responses for two age groups: early childhood (18 months-5 years) and school-age (6-12 years) as these are often ages when PM is introduced. 21, 22 The 18 month lower limit was chosen to reflect the age that children have demonstrated ability to achieve basic wheelchair driving skills (such as moving forward, turning or stopping intentionally), 10 while middle and upper ages are associated with typical developmental and school transitions. Each round’s questions were organized similarly for both age groups to facilitate understanding of important elements for measuring participation, helping target appropriate measurement of participation and guiding measurement tool selection.  The computer-based online Delphi survey was developed and managed using software by FluidSurvey©.242 In keeping with privacy laws, FluidSurvey, a Canadian company with servers located in Canada, uses Secure Sockets Layer (SSL) 128 bit for encryption, ensuring secure and confidential data collection and storage. 242 All questions and statements for each round were pilot tested by a minimum of three of a five-member advisory committee (representative of the sample), and revised based on their feedback.  Given the iterative nature of the Delphi survey, data were analyzed immediately after each round with results informing next round development. 236 Each subsequent round included a   72 summary of the previous round’s results, thereby promoting an integrative form of knowledge translation and contributing to new knowledge generation as participants reflected on their answers individually and collectively. 236 In addition to survey questions, each round included relevant information to assist participants with their decision-making. To encourage completion, reminders were emailed one week prior to, as well as one and two weeks following round commencement.   For our purpose, consensus was set a priori at 80% or greater agreement 236, 239, 240 for the total group and each of the three subgroups, to remove bias of uneven subgroups. Delphi surveys typically end with consensus, when response rates drop off, or when no new information is gained. 238 Although four surveys were planned, the number of rounds was left open to adjustment (plus or minus 1 round) dependent on survey results, in effort to reduce participant attrition (i.e. if consensus was not reached as planned or alternately, if response rates [greater than 20%] dropped off significantly).236, 237, 239  Round One: Socio-demographic information described the sample and confirmed eligibility. Appendix G lists the 46 statements generated to operationalize 14 questions about elements of participation important to measure for children using PM. Questions and statements evolved from a literature review of participation measurement, tools, and ICF 33, 34 taxonomy. Both single option and combination option statements were intentionally included, enabling a variety of responses to decrease frustration and avoid attrition. Background information included a brief summary of considerations. Survey questions were primarily closed-ended, with participants indicating their agreement with each statement being a critical element to measure participation   73 for children using PM. The response format of each question consisted of a 5-point Likert scale (i.e., 1= strongly agree to 5= strongly disagree). 239 Open-ended questions with text boxes for comments provided opportunity for response elaboration or specifying additional elements of importance.  Round Two: A summary of Round One results presented feedback both of the group’s responses (Appendix H) as well as each individual’s responses. This feedback informed participants of the range of responses and gave them opportunity to reflect on their answers. 239 Given that the second round’s aim was to provide opportunity for reflection and confirmation of respondent’s selection, elements from Round One with 75-79% agreement were deemed close enough to threshold to be included so as not to lose important information. The same Likert scale as Round One was used for confirmation. Two additional questions were included in Round Two for respondents to indicate their agreement with two elements (child’s engagement and autonomy) suggested by respondents in Round One.   Round Three: A summary of Round Two results provided feedback on elements that reached at least 80% consensus for the total group and each of the subgroups (Appendix I). Participants were instructed to rank the importance of elements in each age group that reached consensus in Round Two, with no duplications (i.e. 1= most important, 2= 2nd most important, 3= 3rd most important, etc). Participants were asked to rank only the top 10 if more than 10 elements were presented. Rankings in Round Three were assigned a weighted score where weight was indicated by the number of elements reaching consensus (#1 was assigned the highest weighted score (e.g. 10, if 10 elements presented), #2 was assigned the second highest weighted score   74 (e.g. nine if 10 elements presented, etc.). The summed weighted score for the total group determined final ranking of elements (i.e., element with highest sum of weighted scores was first priority).   Round Four:  Those who completed at least two of the three earlier rounds were invited to complete the fourth online survey. Summary of Round Three results included feedback on top ranked elements for each age group that were reached by the total group (Appendix J). Appendix K(i-vii) presents supporting documents included in Round Four. In preparation for the fourth round, a systematic review of participation tools in the paediatric rehabilitation literature (to January 2013) was conducted with 22 tools identified for consideration. Tools were excluded from consideration if they addressed elements not identified as third-round priorities. We chose to focus on measures that demonstrated high concordance with the important elements (selected by consensus through the previous Delphi rounds) and reduce respondent burden. 243   Descriptive information about each tool under consideration was provided to participants including: name of tool; intended ages for use; intended respondent(s); settings evaluated; number and examples of items; objective and/or subjective dimensions evaluated (number, frequency, satisfaction, importance); supports and barriers to participation; brief description of scoring and reported administration time; and how the tool aligned with the top-ranked consensus elements for each age group established previously. Charts enabled comparison of all tools under consideration for each age group using the top-ranked participation elements (Appendix Ki-iv). In addition, charts included ratings of measurement properties using the McMaster Outcome Measure Rating Form. 125 To be transparent with decision-making, a third   75 chart listed tools that were excluded from consideration along with a brief explanation of reasons for exclusion (Appendix Kv). A reference list for all tools was provided to enable those interested to seek further information (Appendix Kvi, vii).   Participants were instructed to indicate their degree of familiarity with each of the tools under consideration along with their degree of agreement that the tool be included in a participation measurement toolkit. Response options for indicating familiarity included a four-point ordinal scale ranging from 1 (very familiar, used several times) to 4 (not heard of it until now). The response options for indicating agreement again used a five-point Likert scale ranging from 1 (strongly agree) to 5 (strongly disagree). Text boxes allowed participants the opportunity to provide comments on tools presented, the selection process and additional tools to consider with their rationale for inclusion. Participants had opportunity to comment on content, suitability and process of the Delphi survey overall after completion of the final round, providing feedback for end-of-study knowledge translation.    3.2.5 Data Analyses Descriptive statistics included frequencies and percentages (for nominal and categorical data), along with measures of central tendency (mean, median and mode) and levels of dispersion (standard deviation and inter-quartile range) for continuous data. Raw data, entered and coded for analyses in Microsoft Excel, 244 described socio-demographic characteristics of participants, response rate for each round and each item response. Thematic analysis of participants’ responses was used for open-ended questions. Elements for measuring participation and measurement tools common to both age groups were identified, as well as those unique to each   76 age group. Summaries provided to participants after each round included graphic displays and text summaries for the total group and each of the two age groups as appropriate.   3.3 Results  Seventy-six participants initially agreed to participate. One parent activated the survey link but did not complete any questions after realizing that she no longer met eligibility criteria. One therapist activated the survey link but did not respond due to personal reasons, resulting in a total sample of 74 for Round One (14 parents, 40 therapists, and 20 researchers. Table 3.1 describes the socio-demographic characteristics of Round One participants. Therapists, females and those 40 to 49 years of age were most predominant. Figure 3.3 summarizes recruitment contacts and responses. Of the 74 stakeholders who participated in the initial Delphi round, 70 completed Round Two, 67 completed Round Three, and 70 completed Round Four (Table 3.2). The response rate remained 90% and above across the four rounds over a ten month period.   3.3.1 Round One  Table 3.3 presents the important elements of measuring participation that reached consensus in Round One. In Round One, 14 of 46 elements reached consensus for school-aged children for the total group plus all three stakeholder subgroups, unlike the early childhood group, where no element reached consensus for the total group plus all three stakeholder subgroups (although 13 of 46 elements obtained >80 % for total group only). Panelists identified two additional elements for consideration in both age groups in Round Two: the child’s engagement and autonomy.     77 3.3.2 Round Two Table 3.3 presents Round Two elements reaching consensus (> 80% agreement) for the total group plus all three stakeholder subgroups (including 18 of 48 elements in total for the older group and eight of 48 elements for the younger group). Overall, 21 elements were identified, with five in common across both age groups. Elements reaching consensus described whose point of view should be sought (parent and/or child), who should be the focus (child and family), what types of participation (objective and/or subjective dimensions), where participation takes place (home, school and/or community), and how participation should be evaluated (comparison with self over time, include barriers and facilitators). Table 3.4 presents the elements not achieving consensus in Round Two.  3.3.3 Round Three Table 3.5 presents the top five ranked priorities for elements that reached consensus for each age group in Round Three. For the younger group, a ranking of #1 (most important) was given a weighted score of eight as there were eight elements ranked. For the older group, a ranking of #1 was given a weighted score of 10 as 10 out of 18 elements were ranked. Of the five elements that reached consensus across both age groups, four ranked within the top five. Measuring participation in a combination of settings was the highest priority for both age groups.   3.3.4 Round Four From the 22 tools identified in the literature, no single tool addressed all elements deemed important to measure for each age group (i.e., priorities from third-round). Thirteen tools met the highest-ranked element of participation (evaluating participation in a combination of settings)   78 and addressed at least two of the remaining highest ranked elements for each age group (five elements in total for the younger age group and seven elements in total for the older group). Appendix K(i-iv) presents the information presented to participants for the 13 tools under consideration. 45, 49, 93, 96, 162, 166, 171, 177-180, 184, 197 Appendix K(i) provides a comparison of the five most promising tools under consideration for those in early childhood, 49, 96, 162, 178, 180 while Appendix K(ii) Parts I and II provide a comparison of the five most promising tools under consideration for those of school age. 96, 166, 178, 180, 197 Several additional tools were presented to participants for consideration because they evaluated a particular aspect of participation identified by participants as important. Appendix K(iii) presents the additional tools under consideration for those in early childhood, 93, 245 while Appendix K(iv) Parts I and II present the additional tools under consideration for those of school age. 45, 93, 171, 177, 179, 184 Appendix K(v) summarizes the nine tools not selected for consideration. 94, 166, 168, 246-251   Figure 3.4 summarizes the total group’s familiarity with the 13 tools under consideration while Figures 3.5 to 3.7 summarize the three subgroups’ familiarity. For the total group, amalgamating scores for somewhat familiar and very familiar ratings, our panelists found the Canadian Occupational Performance Measure (COPM) 96 most familiar for both the younger age group (68%) and older age group (67%). The School Functional Assessment (SFA) 245 was second most familiar (36%), while the Children’s Assessment of Participation and Enjoyment (CAPE) 166 was third most familiar (27%).   Figure 3.8 presents the total groups' degree of agreement for each tool being considered for inclusion in the proposed toolkit, while Figures 3.9 to 3.11 summarize the three subgroups’   79 degree of agreement. Given our requirement that consensus be at least 80% agreement for the total group and all subgroups, none of the tools reached consensus for being included in the toolkit for the younger group and only the Participation and Environment Measure for Children and Youth (PEM-CY) 178 reached consensus for school-aged children. For the total group, amalgamating scores for strongly agree and agree ratings, the three tools with the highest level of agreement in the early childhood group were Preschool Activity Card Sort (PACS) 180 (70%), COPM96 (65%) and PEM-CY178 (60%). The three tools with the highest level of agreement in the school-age group were PEM-CY178 (88%), COPM96 (77%), and CAPE 166 (62%). The PEM-CY178 and COPM96 were in the top three across both age groups for agreement for potential toolkit inclusion.  3.4 Discussion   Consensus building, recognized for synthesizing and strengthening evidence inherent in clinical practice, 158, 240 is recommended for advancing participation measurement. 234 This study reached consensus on 21 important elements for measuring participation of children using PM by way of a modified Delphi survey. Panelists, including parents, therapists and researchers, achieved >80% agreement on eight elements for those in early childhood and 18 elements for those of school-age. Five elements were common across both groups. Panelists also nominated suitable tools for measuring key elements of participation in children who use PM. The selection of tools was based on how each matched important elements for measuring participation, as determined in earlier Delphi rounds. Of the 22 tools identified in a literature review of participation tools for children with mobility limitations, 13 tools matched elements of participation deemed important   80 to measure by the panel. No single tool met all elements deemed important to measure, however, four tools addressed at least three of the most important elements for the early childhood group, whereas, five tools addressed at least three of the most important elements for the school age group. Although no tools reached consensus for inclusion in a participation toolkit for the younger group, one tool -- the PEM-CY 178 -- achieved over 80% consensus for inclusion in a toolkit for school-aged children.   Although a developmental aspect may exist in terms of which elements reached consensus for each age group, the disparity in number reaching consensus between groups could be influenced by several factors. Adults may have a greater awareness of school-aged children’s needs as they have more life experiences and speak more for themselves. It may be reflective of greater research evidence describing participation for the older age group, 127 with which some participants might be familiar. Alternatively, this evidence may have inadvertently biased questions and responses in survey development. It could also reflect differences in geographical clinical practices whereby PM provision to preschoolers is not as common, 10 with school-aged children having more opportunity for PM use. Given the difference in numbers of elements that reached consensus, it is noteworthy that four of the top five elements were similar for both age groups.   3.4.1 Elements of Participation  The importance of understanding the nature, variability and consequences of participation has been acknowledged, especially for less accessible populations, 66 such as those using PM. The elements that reached consensus provide guidance as to what is meaningful to measure for our   81 population, and should facilitate selection or development of participation tools. 36, 252 The highest priority -- measuring participation in a combination of settings -- reflects the importance of where participation occurs, 35, 66 as participation and the environment are intimately linked. 2, 200 For children using PM, environmental factors have a tremendous influence on successful implementation of PM interventions9, 10 and they participate differently depending on setting. 20, 21, 158   Other elements common across both age groups included ‘the child’s engagement in participation,’ and ‘the child’s enjoyment of participation,’ as well as evaluating a ‘combination of family participation and child participation,’ and ‘including barriers and facilitators when measuring participation.’ The importance of measuring the child’s engagement and enjoyment is acknowledged in the literature, with engagement in life situations a central concept in participation. 33-35 In other studies, parents comment on their child’s enjoyment and ‘being engaged’ as two distinct descriptors, 127 whereas researchers suggest a child’s ‘self-engagement’ refers to enjoyment, self-determination and an understanding that comes from participating. 2 Although evaluating a combination of family and child participation is important to all children and families, 2 it is critical for younger children and those with significant impairments. 35 In keeping with a child and family-centred approach, 29 therapists can enhance individuals’ participation by understanding what is important both for the child and their family. 13 Seeking the best ‘fit’ between the child’s and family’s desired activities, (power) mobility options, and the environments in which they are used 20 is critical both when recommending specific wheelchair features, and when facilitating discussions about mobility options for specific activities. PM not only impacts the child, but families too. This is a reciprocal relationship: child   82 and family participation influences types of PM features selected, and wheelchair features impact their participation. Evaluating the child-family dynamic as children grow is also important as their relationships and roles change over the lifespan, 35 influencing their interests and priorities. Finally, children’s choice of wheeled mobility options can be strongly influenced by barriers and facilitators. 20, 21, 158 Moreover, measuring participation with a ‘barriers and supports approach’ may be useful for policy purposes 66 as suitable interventions can be identified and plans implemented to support optimal participation for wheeled mobility users.20, 157  3.4.2 Measurement Tools As our findings demonstrate, several tools met the top-ranked elements, each having a somewhat different focus to measuring participation along with influencing personal and environmental factors. 2, 3, 8, 19 The idea of creating a toolkit 156, 232 of participation measurement tools is substantiated given that no single tool met all elements deemed important to measure by the panel. One may argue that developing a new tool that addresses all the important elements for our population might be a better option, 151 however, this would take significant time, effort, and funding. Furthermore, the number of elements addressed in one tool would need to be balanced against the complexity of the tool, and amount of respondent and administrative burden. In a recent critical appraisal of outcome measures for adult seating and wheelchair provision, the authors suggested that no single outcome measure could collect all necessary information, and instead recommended that clinicians make informed choices about outcome measures most suited to their practice given adequate information about tools’ strengths and limitations. 253 Although they did not explicitly discuss need for a toolkit, one might surmise the idea of toolkit is indicated. Likewise, in a systematic review measuring activity and participation outcomes for   83 children and youth with brain injuries, Dunford and colleagues suggested that no single tool would be sufficient, rather a ‘basket’ of outcome measures may be more reasonable. 152 Having tools categorized in a toolkit may help the decision-making process, and facilitate picking the right tool for the desired purpose.  Interestingly, only one tool -- the PEM-CY 178 -- achieved 80% consensus for inclusion in a toolkit. This recently developed tool addresses several elements deemed essential for children who use PM. The COPM, 96 the second choice for both age groups, elicits information about what is meaningful from parents’ and children’s perspectives. The importance of eliciting these subjective perspectives has been recognized in the literature 13, 66, 80 and was confirmed by our expert panel, especially for school-age children.   Several reasons may explain why more tools did not achieve consensus. Many of the tools under consideration were not well known to participants. Although the COPM 96 was familiar to nearly half of the panelists, the others were not. This may also offer an explanation as to why participation tools have not been used more readily for paediatric PM interventions. 10 Several tools did not fully address the selected age range for each developmental stage; this was most notable for the early childhood group where only one tool 96 addressed the entire age range while three tools 1, 178, 245 were for 5 year olds only. Similarly for the older age group, two tools 49, 180 were for 6 year olds only, and another 171 did not address the entire age range. Perhaps because of a tool’s limited age range, panelists might have hesitated to agree with their suitability for toolkit inclusion across the full age categories. Another possible reason tools were not selected for the toolkit might have to do with their reported measurement properties. Evidence of   84 measurement rigour is extremely valuable when determining suitability of a specific tool for a specific population. 12, 38, 121 Although some tools under consideration 1, 96, 166, 245 have established evidence over the years, others have limited evidence. It is crucial that tools have sound measurement properties for their intended application so one has confidence in interpreting measurement findings. 12, 112 We recommend further testing of selected participation tools with our population before adopting them for evaluation of PM efficacy and effectiveness.  3.4.3 Limitations The success of a Delphi survey rests in the selection of an appropriate panel. 236, 254 Different stakeholder perspectives are important, 2, 237 and we intentionally sought a panel with diverse experiences and perspectives. We had uneven geographic representation, which may have biased the cultural contexts of participation considered. Despite our intent to recruit equivalent numbers, recruitment challenges resulted in uneven representation across stakeholder subgroups. Achieving consensus across total group plus all subgroups minimized bias. We accepted all interested and eligible therapists, anticipating attrition and valuing knowledge exchange and collaboration. Given the relatively small and specialized community of paediatric PM practice, complete anonymity might not be possible. Recruitment of parents was much more challenging, despite significant efforts to recruit through multiple venues, and was heavily representative of western Canada. A systematic review of Delphi technique studies found few studies included families and children. 237 We recognize that parents of children with complex conditions have significant demands on their time and energy, making it extremely difficult to engage in research. That 13/14 completed all rounds demonstrated exceptional commitment, and their input was invaluable. Although our initial thoughts included children on the panel in keeping with a   85 client-centred approach, 237 feasibility issues were considerable, especially given the abstract and detailed nature of the material being covered. Interestingly, a systematic review of studies addressing the process of selecting outcomes to measure in paediatric clinical trials found no studies that included children in the process. 254 Authors admitted that although inclusion of children is desirable, there was no evidence substantiating the benefits of including them in the process nor was there a framework to guide how best to involve them. 254 We anticipate a future study confirming findings with children, as well as other stakeholders (e.g. teachers, funders, suppliers) to provide a more comprehensive overview. Another limitation of this study is that it did not specifically address considerations for children 13 to 18 years of age using PM. Our initial intent was to include this age group as a third group for participants to deliberate on, but we were very concerned that the additional time and effort would be detrimental to survey completion and participant retention over the course of the study. 236, 243 We therefore made the decision to focus our efforts on the younger two age groups, as they are the ages when PM is more commonly introduced. 14, 21 Recognizing that the literature suggests differences in participation are associated with age, 40, 46, 55 we plan a future study explicitly examining elements of participation that are important to measure for children 13-18 years old using PM.      Our recruitment process yielded a panel with a diverse range of backgrounds, experiences, and perspectives. Participants’ requirement to understand written English and have Internet access may have limited the sample and restricted the cultural context, reducing generalization of results. We acknowledge participants’ different levels of understanding and experience with the construct of participation and how best to measure it, may have influenced results. We debated limiting Round Four to therapists and researchers only, given that parents may have a more   86 limited understanding of specific tool information and measurement concepts. However, we welcomed diversity, 239 and saw it as an opportunity for knowledge mobilization, increasing awareness of therapy considerations to parents while examining measurement tools’ relevance to a diverse group of stakeholders. 237 We provided background information and definitions for a minimal standard of common understanding, expecting that some might have limited knowledge of theoretical rationale and measurement tools. We also provided summaries by total group and stakeholder groups, offering exposure to a broader set of ideas. Although background information was provided to assist decision-making, the amount of information might have been too dense or the presentation method overwhelming, influencing their capacity (e.g., level of understanding or time available) to evaluate the relevance of information. However, the response and completion rates across stakeholder groups demonstrated their strong commitment to the tasks at hand. Interestingly, some parents stated familiarity with a few participation tools.   It may be that we were too conservative in selecting 80% as our level of agreement as other studies have used a broader range of thresholds for Delphi consensus. 128, 234 This may have bearing both on the number elements and suitable tools identified. Additionally, not all relevant elements of participation might have been brought forward for consideration, therefore we cannot assume that these are the only elements worthy of discussion. Some tools may have been missed in the literature review due to the search strategy or inclusion criteria (e.g. restrictions of English language, peer-reviewed publications with evidence supporting use with children). The limited number of participation tools for the younger age group is acknowledged, but this is an area of recent and continuing development. 36, 66, 162 Other tools included in Chapter 2 were not published at the time of the Delphi survey, and might be worthy of future consideration.    87 Debate about the tools not selected for consideration by the panel may result, depending on how one defines participation and classifies test items. 33-35, 122 To mitigate this, we shared excluded tools with panelists so these could be considered alongside nominated tools. Finally, we excluded adult participation tools designed for individuals with mobility limitations 123, 157, 233, 255 because they lacked evidence of measurement properties with children. However, the way these tools handle the interaction between the individual, the mobility device, and environmental demands may be relevant. Future investigations to determine their concordance with important elements of participation in children who use PM may be worthwhile. Those deemed suitable might then be adapted for and tested with a paediatric population. We elected not to include these adult tools in our current study to make the identification and selection of candidate measures more manageable. Despite these limitations, this study lays the foundation for dialogue and future investigation about how children use PM to participate in everyday life. It also establishes groundwork for evaluating effectiveness of PM interventions.  3.5 Conclusion   Our research established consensus on elements of participation important to measure for children using PM and identified potential measurement tools addressing these elements. These findings further our understanding of measurement requirements for these children. Nonetheless, before selecting a tool, the desired purpose and context for participation measurement must be taken into consideration. Robust participation tools validated with this population are needed to support stronger quality of research evidence demonstrating the value of PM as a therapeutic intervention. Development of a toolkit offering a choice of tools might prove useful depending   88 on the intended purpose, and the characteristics of the child and their environment(s). Other options to consider include adapting tools developed specifically for adults who use wheeled mobility, 123, 157 or creating new tools that better meet the needs of this population. In any case, it is vital to evaluate these tools specifically with children having PM needs to improve validity, reduce measurement error and provide greater confidence interpreting findings. 112, 123 These findings informed the next phase of our research, which was to investigate the feasibility of conducting research with children needing PM, including establishing measurement properties of participation tools for our population.    89 Figure 3.1 Four Round Modified Delphi Survey Process     Round One •Socio-demographic information •Agreement with elements important to measure for participation • Identification of additional elements Round Two •Summary of Round One findings •Confirmation of important  elements presented in Round One •Agreement with additional elements Round Three •Summary of Round Two findings •Ranking importance of elements that reached concensus Round Four •Summary of Round Three findings  • Identification of suitable participation tools, matched against top ranked elements  • Indication of familiarity with measurement tools •Agreement with suitability of tools for inclusion in toolkit    90 Figure 3.2 Inclusion and Exclusion Criteria    Participants Parents  whose child  a) is between 18 months to 12 years of age and has a chronic mobility limitation b) has used a PM device for a minimum of 6 months c) can maneuver the PM device by themselves for at least ½ hour/day d) uses the PM device for at least ½ hour to participate in desired activities at home, school, or in the community on regular minimum weekly basis Therapists who have a) certification as an occupational and/or physical therapist b) worked 5 years or more with children 18 months to 12 years of age with chronic mobility limitations c) in the last year, prescribed PM devices for at least 5 children, or worked with at least 5 children using PM interventions (e.g. training or assessment) Researchers who have a) at least 3 years’ experience investigating  PM and/or participation with children between the ages of 18 months to 12 years, b) in the last 5 years at least 1 publication in a peer-reviewed journal c) in the last 5 years presented on pediatric PM and/or participation at least once at a national or  international level conference  Those excluded  a) do not understand written English, at a Grade 12 level, or b) are unable to commit to the timelines associated with the Delphi process, or  c) do not have access to the internet    91 Table 3.1 Socio-Demographic Characteristics of Round One Participants Who Responded  Parents n=14 Therapists n=40 Researchers n=20 Total n=74 Sex                   male                          female   3 11   2 38   1 19   6 68 Age                  20-29 (in years)          30-39                          40-49                          50-59                          60-65            0   3 11   0   0   2   9 18   7   4   0   2 12   2   4   2 14 41   9   8 Country           North America of  Residence   South America                         Australasia                         Asia                          Middle East                         Europe 14  26   1   2   0   3   8   9   0   4   1   0   6 49   1   6   1   3 14 For Therapists and Researchers Occupational Therapist Physical Therapist   26 14  12 8  38 22 Years Paediatric Clinical Experience                           0-5                                                                                                    6-10                         11-15                         16-20                         21-25                         26-30                         30+                         not answered     5   4   7   6   5   3   7    3       2   4   4   4   4   1   1   0      7   8 11 10   9   4   8   3 Years Research Experience                          0-5                          6-10                        11-15                        16-20                        21-25                        not applicable                        not answered   16   5   5   1   1 10   2    2   5   9   3   1   0   0  18 10 14   4   2 10   2 For Parents  Age of Children    mean                                  range Sex of Children     male                                  female Years of PM use   mean                                 range    8yrs10mos   3 - 11yrs 12   3   4yrs 6mos   1 - 9yrs    Legend: n=sample size; yrs=years; mos=months    92 Figure 3.3 Summary of Recruitment Process    Contacts within Canada  Contacts within the United States  Number Responded (n = 44) AL- 1 AZ- 1 CA- 4 CO- 1 DC- 1 DE- 1 FL- 2 IL- 4  KS- 1 MA- 3 NE- 1 NJ- 2 OH- 1 OK- 2 PA- 7 TN- 1 TX- 2 State unknown- 10  Health/Education services- 8 Universities- 7 Private Practice- 2 Professional Organizations- 1 Suppliers (multi-state)- 2 Parent support organizations- 20   with multi-state representation   International contacts outside of  North America Number Responded (n = 64) Denmark- 2 Norway- 4 Sweden- 5 Netherlands- 4 Ireland- 2 UK- 7 (England -3, Scotland- 2, Northern Ireland- 2) Italy- 5 Israel- 8 Iran- 1 South Africa- 1 Australia- 16 New Zealand- 2 China- 1 Japan- 2 South Korea- 1 Taiwan- 1 Argentina- 1 Brazil- 1  Number Responded (n = 97) AB- 14 BC- 31 MB-  3 NB-   3 ON-31 QC-   6  SK-    9 Health/Education services- 33 Universities- 27 Research Institutes- 3   Health/Education services- 40 Universities- 7 Professional Organizations- 4 Suppliers (multi-province)- 3 Parent support organizations- 81 (20 different organizations, many having independent provincial representation)   Parents who responded- 13 Therapists who responded- 47 Researchers who responded- 7 Parents who responded- 7 Therapists who responded- 11 Researchers who responded- 14 Therapists who responded- 33 Researchers who responded- 31    93 Table 3.2 Summary of Participants Invited versus Responded for Each Round  Round One Round Two Round Three Round Four Parents n=14 n=14      (100%) n=13       (93%) n=13       (93%) Therapists n=40 n=39       (98%) n=37       (93%) n=39       (98%) Researchers n=20 n=17       (85%) n=17       (85%) n=18       (90%) Total n=74 n=70       (95%) n=67       (91%) n=70       (95%)      94 Table 3.3 Elements Reaching Consensus in Rounds One and Two Round One Elements Reaching Consensus+,*,^ Round Two Elements Reaching Consensus+,^ 18 Months to 5 Years Age Group 6 to 12 Years Age Group 18 Months to 5 Years Age Group 6 to 12 Years Age Group WHO *A parent’s report of their child’s participation is most essential +The child’s self report of participation is most essential +A parent’s report of their child’s participation is most essential +The child’s self report of participation is most essential *A combination of a parent’s report of the child’s participation and the child’s self report of participation is most essential +A combination of a parent’s report of the child’s participation and the child’s self report of participation is most essential  +A combination of a parent’s report of the child’s participation and the child’s self report of participation is most essential *A combination of family participation & child participation is most critical +A combination of family participation & child participation is most critical +A combination of family participation & child participation is most critical +A combination of family participation & child participation is most critical WHAT *A combination of a standard list of scenarios along with user defined scenarios is most valuable +A combination of a standard list of scenarios along with user defined scenarios is most valuable   +A combination of a standard list of scenarios along with user defined scenarios is most valuable *A combination of objective and subjective information is most critical +A combination of objective and subjective information is most critical  +A combination of objective and subjective information is most critical   +Specifying the location where participating is most essential  +Specifying the location where participating is most essential  *Documenting the frequency of participation is most essential  +The child’s engagement in participation is critical +The child’s engagement in participation is critical *The child’s enjoyment of participation is most essential +The child’s enjoyment of participation is most essential +The child’s enjoyment of participation is most essential +The child’s enjoyment of participation is most essential  +The child’s importance of his/her participation is most essential  +The child’s importance of his/her participation is most essential  +The child’s preference of participation is most essential   +The child’s preference of participation is most essential     95 Round One Elements Reaching Consensus+,*,^ Round Two Elements Reaching Consensus+,^ 18 Months to 5 Years Age Group 6 to 12 Years Age Group 18 Months to 5 Years Age Group 6 to 12 Years Age Group *The child’s satisfaction with his/her participation is most essential +The child’s satisfaction with his/her participation is most essential +The parent’s satisfaction with the child’s participation is most essential +The child’s satisfaction with his/her participation is most essential  *Measuring performance is most essential (i.e. what the child actually does in everyday life)  +Measuring performance is most essential (i.e. what the child actually does in everyday life) *Measuring a combination of capacity, capability & performance is most essential *Measuring a combination of capacity, capability & performance is most essential    +Participation should include activities that are done alone  +Participation should include activities that are done alone WHERE *Participation in a combination of settings (e.g. home, school & community) is most critical +Participation in a combination of settings (e.g. home, school & community) is most critical +Participation in a combination of settings (e.g. home, school & community) is most critical +Participation in a combination of settings (e.g. home, school & community) is most critical  *Participation in school life is most critical +Participation in home life is most critical +Participation in school life is most critical    +Participation in community life is most critical HOW *Barriers and facilitators of participation should be included in an assessment of participation +Barriers and facilitators of participation should be included in an assessment of participation +Barriers and facilitators of participation should be included in an assessment of participation +Barriers and facilitators of participation should be included in an assessment of participation *Comparison with self over time is critical  +Comparison with self over time is critical   +Comparison with self over time is critical  *Documenting the strategy needed to participate is critical *Documenting the strategy needed to participate is critical   *Documenting the amount of assistance needed is critical *Documenting the amount of assistance needed is critical   Total number of elements where consensus was reached +, *,^ Total number of elements where consensus was reached +,^ 0 + 14 + 8 + 18 + 13 * 6 *     96  Legend: ^ Consensus was set a priori as > 80% agreement.  + = Consensus reached for total group plus each of the 3 stakeholder subgroups (implemented to remove bias of uneven subgroups)   Round One: total participants (n = 74), parents (n =14), therapists (n = 40), researchers (n = 20) Round Two: total participants (n = 70), parents (n =14), therapists (n = 37), researchers (n = 19) * = >80% reached for total group only [Round One: n = 74] (elements did not achieve consensus across all three stakeholder subgroups)  97 Table 3.4 Elements Not Achieving Consensus in Round Two  Round Two Elements That Did Not Reach Consensus (^) 18 Months to 5 Years Age Group 6 to 12 Years Age Group WHO The child’s self report of participation is most essential A parent’s report of their child’s participation is most essential A therapist’s report of participation is most essential A therapist’s report of participation is most essential A combination of a parent’s report of the child’s participation and the child’s self report of participation is most essential  Child-only participation is most critical Child-only participation is most critical Family participation is most critical Family participation is most critical WHAT A combination of a standard list of scenarios along with user defined scenarios is most valuable  A standard list of scenarios is most valuable A standard list of scenarios is most valuable A set of user defined scenarios is most valuable A set of user defined scenarios is most valuable A combination of objective and subjective information is most critical  Objective information that documents observed behavior is most critical Objective information that documents observed behavior is most critical Subjective information that reflects the individual's personal view is most critical  Subjective information that reflects the individual's personal view is most critical  Documenting the number of situations the child is involved in is most essential Documenting the number of situations the child is involved in is most essential Documenting the frequency of participation is most essential Documenting the frequency of participation is most essential Specifying who the child is participating with is most essential Specifying who the child is participating with is most essential Specifying the location where participating is most essential  The child’s preference of participation is most essential  The child’s importance of his/her participation is most essential  The child’s satisfaction with his/her participation is most essential The parent’s satisfaction with the child’s participation is most essential The parent’s importance of the child’s participation is most essential The parent’s importance of the child’s participation is most essential The child’s autonomy of participation is most essential  The child’s autonomy of participation is most essential    98 Round Two Elements That Did Not Reach Consensus (^) 18 Months to 5 Years Age Group 6 to 12 Years Age Group WHAT Measuring performance is most essential (i.e. what the child actually does in everyday life)  Measuring capacity is most essential (what child is able to do given their best effort & set-up) Measuring capacity is most essential (what child is able to do given their best effort & set-up) Measuring capability is most essential (what child could do in everyday life, if he/she desires) Measuring capability is most essential (what child could do in everyday life, if he/she desires) Measuring a combination of capacity, capability & performance is most essential Measuring a combination of capacity, capability & performance is most essential Participation should only involve activities where there are interactions with others Participation should only involve activities where there are interactions with others Participation should include activities that are done alone  Personal care activities should be considered as participation Personal care activities should be considered as participation WHERE  Participation in home life is most critical Participation in school life is most critical  Participation in community life is most critical  HOW Barriers and facilitators of participation should not be evaluated when assessing participation  Barriers and facilitators of participation should not be evaluated when assessing participation  Barriers and facilitators of participation should be evaluated, but done as a separate assessment from participation  Barriers and facilitators of participation should be evaluated, but done as a separate assessment from participation  Comparison with self over time is critical  Comparison with peers is critical information Comparison with peers is critical information Evaluations with peers and with self are equally important Evaluations with peers and with self are equally important Documenting the strategy needed to participate is critical Documenting the strategy needed to participate is critical Documenting the amount of assistance needed is critical Documenting the amount of assistance needed is critical Select the number of minutes acceptable for administering a therapist report: i) Less than 15 minutes is acceptable ii) 15-30 minutes is acceptable iii) More than 30 minutes is acceptable  Select the number of minutes acceptable for administering a therapist report: i) Less than 15 minutes is acceptable ii) 15-30 minutes is acceptable iii) More than 30 minutes is acceptable    99 Round Two Elements That Did Not Reach Consensus (^) 18 Months to 5 Years Age Group 6 to 12 Years Age Group HOW Select the number of minutes acceptable for administering a parent report: i) Less than 15 minutes is acceptable ii) 15-30 minutes is acceptable iii) More than 30 minutes is acceptable   Select the number of minutes acceptable for administering a parent report: i) Less than 15 minutes is acceptable ii) 15-30 minutes is acceptable iii) More than 30 minutes is acceptable  Select the number of minutes acceptable for administering a child report: i) Less than 15 minutes is acceptable ii) 15-30 minutes is acceptable iii) More than 30 minutes is acceptable Select the number of minutes acceptable for administering a child report: i) Less than 15 minutes is acceptable ii) 15-30 minutes is acceptable iii) More than 30 minutes is acceptable Select the maximum number of minutes acceptable for scoring an assessment: i) Less than 15 minutes to score the assessment is acceptable ii) 15-30 minutes to score the assessment is acceptable iii) More than 30 minutes to score the assessment is acceptable Select the maximum number of minutes acceptable for scoring an assessment: i) Less than 15 minutes to score the assessment is acceptable ii) 15-30 minutes to score the assessment is acceptable iii) More than 30 minutes to score the assessment is acceptable Total number of elements where consensus not reached 40 Total number of elements where consensus not reached 30  Legend: ^ Consensus was set a priori as > 80% agreement.    100 Table 3.5 Round Three Top Ranking Elements That Reached Consensus   (In Descending Order) Legend:   Priority 18 Months to 5 Years 6 to 12 Years 1 Participation in a combination of settings (e.g. home, school & community)  Participation in a combination of settings (e.g. home, school & community)  2 Combination of family participation & child participation  Combination of parent’s report of child’s participation and child’s self report of participation  3 Child’s engagement in participation  Child’s engagement in participation  4 Barriers and facilitators of participation  Barriers and facilitators of participation  5 Child’s enjoyment of participation  Combination of family participation & child participation  Elements that reached consensus in both age groups and matched in exact priority Elements that reached consensus in both age groups but were of different priorities Elements that reached consensus in one age group only   101 Figure 3.4 Participants’ Familiarity with Participation Tools under Consideration Legend: PEM-CY = Participation and Environment Measure for Children and Youth; 178 (EC) = Early Childhood; (SA) = School Age; COPM = Canadian Occupational Performance Measure;  96 PACS = Preschool Activity Card Sort; 180 CAPE = Children’s Assessment of Participation and Enjoyment; 166 CPQ = Children Participation Questionnaire; 49 LIFE- H = Assessment of Life Habits; 93  SFA = School Function Assessment; 245 PIP = Pediatric Interest Profiles; 179 COSA = Child Occupational Self Assessment; 197 APCP = Assessment of Preschool Children’s Participation; 162 CHORES = Children Helping Out: Responsibilities Expectations and Supports; 171 PCPQ = Pediatric Community Participation Questionnaire; 177 FPQ = Frequency of Participation Questionnaire.174  * For tools PEM-CY178(SA), COPM96 (SA), CAPE, 166 COSA, 197 CHORES171 (n = 67); ^ PACS180(SA), PCPQ, 177 LIFE-H, 93 SFA, 245 (n=66); 177  PIP, 179 FPQ174 (n=65).   0102030405060708090100Percentage of Respondents (n=68)*,^,   Participation Tools All Participants' Familiarity with Participation Tools Very familiar (used several times)Somewhat familiar (have used once or twice)Not very familiar (read about or heard of it, but neverused)Not heard of it until now  102 Figure 3.5 Parents’ Familiarity with Participation Tools under Consideration  Legend: PEM-CY = Participation and Environment Measure for Children and Youth; 178 (EC) = Early Childhood; (SA) = School Age; COPM = Canadian Occupational Performance Measure;  96 PACS = Preschool Activity Card Sort; 180 CAPE = Children’s Assessment of Participation and Enjoyment; 166 CPQ = Children Participation Questionnaire; 49 LIFE- H = Assessment of Life Habits; 93  SFA = School Function Assessment; 245 PIP = Pediatric Interest Profiles; 179 COSA = Child Occupational Self Assessment; 197 APCP = Assessment of Preschool Children’s Participation; 162 CHORES = Children Helping Out: Responsibilities Expectations and Supports; 171 PCPQ = Pediatric Community Participation Questionnaire; 177 FPQ = Frequency of Participation Questionnaire.174  * For tool PACS180(SA) (n = 11).  0102030405060708090100Percentage of Respondents (n=12)* Participation Tools Parents' Familiarity with Participation Tools Very familiarSomewhat familiarNot very familiarNot at all familiar  103 Figure 3.6 Therapists’ Familiarity with Participation Tools under Consideration  Legend: PEM-CY = Participation and Environment Measure for Children and Youth; 178 (EC) = Early Childhood; (SA) = School Age; COPM = Canadian Occupational Performance Measure;  96 PACS = Preschool Activity Card Sort; 180 CAPE = Children’s Assessment of Participation and Enjoyment; 166 CPQ = Children Participation Questionnaire; 49 LIFE- H = Assessment of Life Habits; 93  SFA = School Function Assessment; 245 PIP = Pediatric Interest Profiles; 179 COSA = Child Occupational Self Assessment; 197 APCP = Assessment of Preschool Children’s Participation; 162 CHORES = Children Helping Out: Responsibilities Expectations and Supports; 171 PCPQ = Pediatric Community Participation Questionnaire; 177 FPQ = Frequency of Participation Questionnaire.174  * For tools PEM-CY178(SA), COPM96 (SA), PACS40(SA), CAPE, 166 COSA, 197 CHORES171 (n = 38); ^ For tools PCPQ, 177 LIFE- H, 93 PIP, 179 SFA, 245 FPQ174  (n = 37). 0102030405060708090100Percentage of Respondents (n=39)*,^ Participation Tools Therapists' Familiarity with Participation Tools Very familiarSomewhat familiarNot very familiarNot at all familiar  104 Figure 3.7 Researchers’ Familiarity with Participation Tools under Consideration  Legend: PEM-CY = Participation and Environment Measure for Children and Youth; 178 (EC) = Early Childhood; (SA) = School Age; COPM = Canadian Occupational Performance Measure;  96 PACS = Preschool Activity Card Sort; 180 CAPE = Children’s Assessment of Participation and Enjoyment; 166 CPQ = Children Participation Questionnaire; 49 LIFE- H = Assessment of Life Habits; 93  SFA = School Function Assessment; 245 PIP = Pediatric Interest Profiles; 179 COSA = Child Occupational Self Assessment; 197 APCP = Assessment of Preschool Children’s Participation; 162 CHORES = Children Helping Out: Responsibilities Expectations and Supports; 171 PCPQ = Pediatric Community Participation Questionnaire; 177 FPQ = Frequency of Participation Questionnaire.174  *For tools PIP179 and FPQ174 (n = 16).  0102030405060708090100Percentage of Respondents (n=17)* Participation Tools Researchers' Familiarity with Participation Tools Very familiarSomewhat familiarNot very familiarNot at all familiar  105 Figure 3.8 All Participants’ Percentage Agreement of Participation Tools Considered for Inclusion in a Measurement Toolkit§ §Consensus set at > 80% agreement. Legend: PEM-CY = Participation and Environment Measure for Children and Youth; 178 COPM = Canadian Occupational Performance Measure;  96 PACS = Preschool Activity Card Sort; 180 CAPE = Children’s Assessment of Participation and Enjoyment; 166 CPQ = Children Participation Questionnaire; 49 LIFE- H = Assessment of Life Habits; 93  SFA = School Function Assessment; 245 PIP = Pediatric Interest Profiles; 179 COSA = Child Occupational Self Assessment; 197 APCP = Assessment of Preschool Children’s Participation; 162 CHORES = Children Helping Out: Responsibilities Expectations and Supports; 171 PCPQ = Pediatric Community Participation Questionnaire; 177 FPQ = Frequency of Participation Questionnaire; 174  % = percentage; > = greater than or equal to. * For tools PEM-CY178(EC), PACS180(EC), CPQ,39 APCP, 162 (n = 67); ^ PEM-CY178(SA), COPM96 (SA), PACS180(SA), CAPE, 166 COSA, 197 SFA, 245 (n=66);  PCPQ, 177 CHORES, 171 LIFE-H, 93 PIP, 179 FPQ174 (n=65).   0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%FPQφ SFA^PIPφ LIFE- Hφ CHORESφ PCPQφ COSA^APCP*CPQ*CAPE^PACS (EC*;SA^)COPM (SA^)PEM-CY (EC*; SA^)Percentage Agreement for Toolkit Inclusion (n=67)*,^,   Measurement Tools All Participants' Percentage Agreement for Toolkit Inclusion Early Childhood Group Most Promising ToolsSchool Age Group Most Promising ToolsOther Potential Tools  106 Figure 3.9 Parents’ Percentage Agreement of Participation Tools Considered for Inclusion in a Measurement Toolkit§ §Consensus set at > 80% agreement. Legend: PEM-CY = Participation and Environment Measure for Children and Youth; 178 COPM = Canadian Occupational Performance Measure;  96 PACS = Preschool Activity Card Sort; 180 CAPE = Children’s Assessment of Participation and Enjoyment; 166 CPQ = Children Participation Questionnaire; 49 LIFE- H = Assessment of Life Habits; 93  SFA = School Function Assessment; 245 PIP = Pediatric Interest Profiles; 179 COSA = Child Occupational Self Assessment; 197 APCP = Assessment of Preschool Children’s Participation; 162 CHORES = Children Helping Out: Responsibilities Expectations and Supports; 171 PCPQ = Pediatric Community Participation Questionnaire; 177 FPQ = Frequency of Participation Questionnaire; 174  % = percentage; > = greater than or equal to.   0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%FPQSFAPIPLIFE- HCHORESPCPQCOSAAPCPCPQCAPEPACSCOPMPEM-CYPercentage Agreement for Toolkit Inclusion (n=12) Measurement Tools Parents' Percentage Agreement for Toolkit Inclusion Early Childhood Group Most Promising ToolsSchool Age Group Most Promising ToolsOther Potential Tools  107 Figure 3.10 Therapists’ Percentage Agreement of Participation Tools Considered for Inclusion in a Measurement Toolkit§ §Consensus set at > 80% agreement. Legend: PEM-CY = Participation and Environment Measure for Children and Youth; 178 COPM = Canadian Occupational Performance Measure;  96 PACS = Preschool Activity Card Sort; 180 CAPE = Children’s Assessment of Participation and Enjoyment; 166 CPQ = Children Participation Questionnaire; 49 LIFE- H = Assessment of Life Habits; 93  SFA = School Function Assessment; 245 PIP = Pediatric Interest Profiles; 179 COSA = Child Occupational Self Assessment; 197 APCP = Assessment of Preschool Children’s Participation; 162 CHORES = Children Helping Out: Responsibilities Expectations and Supports; 171 PCPQ = Pediatric Community Participation Questionnaire; 177 FPQ = Frequency of Participation Questionnaire; 174  % = percentage; > = greater than or equal to. * For tools PEM-CY178(SA), COPM96 (SA), PACS180(SA), CAPE, 166 COSA, 197 (n = 38); ^ PCPQ, 177 CHORES, 171 LIFE-H, 93 PIP, 179 FPQ, 174 SFA, 245 (n=37).   0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%FPQ^SFA^PIP^LIFE- H^CHORES^PCPQ^COSA*APCPCPQCAPE*PACS (SA*)COPM (SA*)PEM-CY (SA*)Percentage Agreement for Toolkit Inclusion (n=39)*,^  Measurement Tools Therapists' Percentage Agreement for Toolkit Inclusion Early Childhood Group Most Promising ToolsSchool Age Group Most Promising ToolsOther Potential Tools  108  Figure 3.11 Researchers’ Percentage Agreement of Participation Tools Considered for Inclusion in a Measurement Toolkit§ §Consensus set at > 80% agreement. Legend: PEM-CY = Participation and Environment Measure for Children and Youth; 178 COPM = Canadian Occupational Performance Measure; 96 PACS = Preschool Activity Card Sort; 180 CAPE = Children’s Assessment of Participation and Enjoyment; 166 CPQ = Children Participation Questionnaire; 49 LIFE- H = Assessment of Life Habits; 93  SFA = School Function Assessment; 245 PIP = Pediatric Interest Profiles; 179 COSA = Child Occupational Self Assessment; 197 APCP = Assessment of Preschool Children’s Participation; 162 CHORES = Children Helping Out: Responsibilities Expectations and Supports; 171 PCPQ = Pediatric Community Participation Questionnaire; 177 FPQ = Frequency of Participation Questionnaire; 174  % = percentage; > = greater than or equal to. * For tools PEM-CY, 178 COPM96 (SA), PACS, 180 CPQ,39 APCP, 162 CAPE, 166 COSA, 197 PCPQ, 177 CHORES, 171 LIFE-H, 93 PIP, 179 FPQ174 (n=16). 0% 20% 40% 60% 80% 100%FPQ*SFAPIP*LIFE- H*CHORES*PCPQ*COSA*APCP*CPQ*CAPE*PACS (EC*;SA*)COPM (SA*)PEM-CY (EC*; SA*)Percentage Agreement for Toolkit Inclusion (n=17)*  Measurement Tools Researchers' Percentage Agreement for Toolkit Inclusion Early Childhood Group Most Promising ToolsSchool Age Group Most Promising ToolsOther Potential Tools  109  Establishing Measurement Properties of Participation Tools for Children Using Chapter 4:Power Mobility  4.1 Introduction   In the previous chapter, we established participation-related elements that are important to measure for children using PM, and examined how current measurement tools addressed these elements. Our on-line Delphi survey documented and synthesized knowledge gained through panelists’ experience, highlighting important considerations when measuring participation of children using PM. Thirteen participation tools 45, 49, 93, 96, 162, 166, 171, 177-180, 184, 197 addressed some but not all of these elements within a single tool. One tool was endorsed for its suitability with children using PM, however as Chapter 2 suggests, little direct evidence supports the use of participation tools specifically with children using PM. 11, 131 This leads us to question: What are the measurement properties of selected participation tools when used specifically with children benefiting from PM?   Establishing a tools’ measurement properties for use with a specific population and context is critical for meaningful interpretation of measurement results and should be substantiated in terms of reliability and validity evidence. 106, 112, 114 Recall in Chapter 1, we introduced common forms of reliability and validity evidence. 108, 113 Frequently, reliability evidence for self-report measurement scales explores internal consistency and test-retest reliability, 110 while validity evidence may be derived from numerous strategies investigating content, relationship with other variables, internal structure, response processes and consequences of tool use. 107, 113, 114     110 Recognizing that evidence supporting the routine use of select measurement tools for research and clinical practice accumulates over time, we decided that our initial evaluation of participation tools’ measurement properties with those using PM should focus on tools identified as having potential for inclusion in a measurement toolkit by Delphi participants. Participants indicated that the PEM-CY 178 and Canadian Occupational Performance Measure (COPM) 96 had the highest levels of agreement for inclusion in a toolkit across early childhood and school age groups, along with the Children’s Assessment of Participation and Enjoyment (CAPE) 166 for school-aged children, and the Preschool Activity Card Sort (Preschool ACS) 180 for those in early childhood.   Although initial studies evaluating the PEM-CY 178, 201, 217, 218 CAPE 39, 50, 52, 57, 166 or Preschool ACS 180, 181, 221 included children with physical disabilities, details of wheelchair use were not reported, leaving us unsure of how to interpret their scores when implemented with those using PM. By comparison, the COPM 96 has been used in several studies with adults and children with mobility limitations. 7, 67, 130, 256-263 However, previous research with individuals using wheeled mobility suggests that the COPM 96 may be too broad in its measurement of occupational performance goals when used with seating and mobility interventions. 256, 258 In one study evaluating occupational performance challenges for adults receiving seating and mobility interventions, participants identified occupational performance goals using the COPM 96 with instructions modified to cue participants to think about how their seating and mobility equipment affected their occupational performance. 256 Interestingly, after reviewing the COPM 96 occupational performance items reported by Barlow’s participants, 256 few items specifically addressed the ICF 33, 34 component of ‘participation,’ (Chapters 6-9 by our definition) while most   111 items related to ‘activities’ such as transfers, sitting balance, reaching, or wheelchair skills. Her recommendations for seating and mobility intervention outcomes research were to (i) use tools that measure occupational performance with more focus on seating and mobility interventions, (ii) simplify the scoring, (iii) include a measure of pain or comfort, and (iv) for participants unable to complete the COPM, 96 obtain caregivers’ perceptions of wheelchair users’ occupational performance. 256 In paediatric studies, where the COPM 96 was used with families and children with mobility limitations, identified outcomes were primarily self-care and ‘activities’ focused, not participation-related. 130, 259-262 One exception was a study where adolescents who self-reported identified their most-common occupational performance challenges as participation-related, however parents of adolescents unable to self-report, focused on outcomes related to self-care and ‘activities.’ 263 Taken together, this information suggests using the COPM 96 with individuals with mobility limitations who require seating and mobility interventions may have its limitations and that participation tools developed specifically for this population might be more suitable.157  Two measurement tools developed specifically for individuals using wheeled mobility employed the COPM 96 to inform their development. 258, 264 Functioning Everyday with a Wheelchair (FEW) 264 evaluated functional changes associated with seating and mobility interventions as perceived by the individual using, or transitioning to, a wheeled mobility device. Now known as the Functional Mobility Assessment (FMA), 265 the tool uses a 7-point Likert scale to rate users’ agreement with 10 statements that address functional tasks. 265 Notably, most functional tasks related to (our operationalized definition of) ICF ‘activities’ rather than ‘participation,’ 33, 34 and for that reason, it did not meet our purpose. The Wheelchair Outcome   112 Measure (WhOM), 258 was also based on the COPM.  96 It examines the client’s self-perceived importance and satisfaction with performance on client-identified participation outcomes influenced by seating and/or wheeled mobility use within home and community settings. 258 Clinicians and researchers suggest the WhOM 258 as an alternative to the COPM 96 when evaluating seating and mobility interventions because of its focus on outcomes impacted by seating and mobility interventions, 257, 258 its simpler scoring system, and its’ questions about comfort, sitting position and skin integrity. 257, 258 In a recent critical appraisal of outcome measures for wheelchair and seating interventions, the WhOM 258 was one of five tools selected from 20 tools identified, citing its’ strengths of being client-centred, having strong measurement properties [for adults], and being focused on participation-related outcomes. 253 Moreover, the COPM 96 was not among the 20 tools. 253 Initial research evaluating the WhOM 258 with a younger population 266 has resulted in the development of the Wheelchair Outcome Measure for Young People (WhOM-YP). 267 The WhOM-YP did not have any publications describing its measurement properties for children at the time of our systematic review and so was not included in our Delphi survey. However, given that the WhOM 258 (and WhOM-YP) are very similar to the COPM 96 in design, we chose to evaluate the WhOM-YP’s measurement properties (instead of the COPM 96) and determine if it might be a useful participation tool for our purpose.   If we are to advance research in paediatric PM, its’ important that the measurement tools we must have evidence of reliability and validity with our population before we can be confident using them to describe the participation needs of children using PM. 20, 130 Therefore, additional research is warranted to demonstrate the measurement properties of possible tools with children using PM.     113 4.1.1 Purpose  The purpose of this study was to estimate the reliability and validity for three participation tools with children using PM (as part of a larger feasibility study). Measurement properties explored in this study included internal consistency and test-retest reliability evidence, as well as validity evidence associated with content and relation to other variables of the PEM-CY178 (a parent report and our primary measurement tool), the CAPE166 (a child report) and the WhOM-YP (a client-specified individualized outcome measurement tool).  See the data analyses section below for investigated hypotheses.  4.2 Method  4.2.1 Research Design  Data reported in this chapter are from an imbedded measurement study within a feasibility study that used a non-equivalent time series design. 110, 268 Figure 4.1 presents a visual flow diagram outlining the study’s design. As outlined in Chapter 1, this chapter reports on reliability and validity evidence collected at the first two evaluation time points (T1 and T2) and will describe study protocol, participation and descriptive tools used, along with T1 and T2 results. Chapter 5 describes other feasibility indicators, including process, resources, and management indicators with the entire sample as well as treatment-related indicators with a sub-sample that received a new PM device and included T3 to T5 results. Human ethics approval was obtained from ethic review boards associated with recruitment sites. School district approvals were sought if necessary, depending on policies of each school district.     114 4.2.2 Participants  A convenience sample of parent-child dyads consisted of two streams of participants. Children, aged 5 to 17 years, included (i) those who had a new PM device recommended by their therapist,  (referred to as the ‘new PM’ group), and (ii) those who were current PM users not expecting a change in the PM device within the next year, (referred to as the ‘stable PM’ group). The ‘new PM’ group included children new to PM (who ambulated or used a manual mobility device) as well as those who were experienced PM users who needed a new PM device due to growth, change in medical condition or change in mobility requirements. A two-week test-retest period was selected because we did not expect change in children’s participation during that time while accommodating family scheduling and reducing influence of recall. 110 Over the course of the two-week period, participants reportedly maintained their typical routines; those who were new to PM did not have access to PM devices, while those who were experienced drivers continued to use their current PM equipment.   4.2.2.1 Sampling Procedure  Children and their parents were recruited from four children’s health centres in British Columbia (BC) that address positioning and mobility as well as other child health and rehabilitation needs. Participating centres included Sunny Hill Health Centre for Children and BC Children’s Hospital in Vancouver (collectively sharing administrative functions, and also known as the Children’s and Women’s Health Centre of BC), the Centre for Child Development in Surrey, and Queen Alexandra Centre for Children’s Health in Victoria. Therapists in these facilities often consult closely with community-based therapists working in school districts or child development   115 centres around the province, and so community-based therapists formed part of the recruitment network to identify eligible participants.     Primary therapists for PM interventions most often introduced the study to children and parents/guardians, and provided an introductory letter with a study brochure. Parents were given the option to initiate contact with the coordinator directly if interested or have their therapist share their contact information (with their consent) with the study coordinator for follow up within the following week. Additionally posters were placed in locations visited by children and their families-including the four rehabilitation centres’ waiting rooms, wheeled mobility vendor locations (with the agreement of the vendor), physical or electronic research bulletin boards or posted on the investigators’ websites. To share information about the study with families of children in the ‘stable PM’ group, the study coordinator consulted with centre staff who reviewed client lists of the rehabilitation centres’ seating/wheeled mobility services and coordinated mail-outs of an introductory letter and study brochure. The letter introduced the study and asked parents/guardians to contact the study coordinator directly if they were interested in learning more about the study. A reminder post-card was sent one month later to those that did not respond to the earlier mail-out.   The study coordinator served as primary research contact, introducing the study and maintaining regular contact with therapists and interested parents. The coordinator shared study details, discussed the elements of consent with families/guardians, answered questions, established eligibility and explored if they were willing to participate in the study. If interested, the coordinator then scheduled the first one or two appointments. Additionally, the coordinator   116 communicated with community-based therapists employed to work in the schools as many children used PM at school only. This often required additional communication and collaboration with school district staff, sharing study information and arranging appointments as necessary, which was usually facilitated by the children’s community-based therapists.   4.2.2.2 Inclusion Criteria  Participating families resided in BC, with parents providing informed written consent and children 7 years of age and older providing assent to participate in the study. All children had a long-term physical disability that made walking challenging and were candidates for using PM as recommended by their therapists. They needed to be able to operate a PM device by themselves (with age-appropriate supervision) and have opportunities to use PM to participate in desired activities at home, at school, or in the community on a regular (minimum weekly) basis (after delivery of the PM device for the ‘new PM’ group). Primary caregivers other than parents (e.g., foster parents, grandparents, registered nurses) were included with written consent of the legal guardian. For ease of reading, ‘parent’ will be used throughout the remainder of this chapter to imply primary caregiver. Children 5 to 17 years old age were selected because: (i) provincial funding sources indicated this group received a high number of PM devices (Meaning S, Children and Youth with Special Needs Therapy Manager BC Ministry of Child and Family Development (MCFD), 2013, January 22, email communication) and (ii) the three participation tools under study were developed for children within this age range.    117 4.2.2.3 Exclusion Criteria  Parents and children in both groups were excluded if the parent or child did not understand English or they were unable to commit to the timeline for the assessment sessions. Additionally, those in the ‘new PM’ group, were excluded if the child had an illness, or surgery planned within three months after receiving the new PM device that affected their ability to use PM for greater than 3 weeks.  4.2.3 Study Protocol  4.2.3.1 Participation Measurement Tools 4.2.3.1.1 Participation and Environment Measure for Children and Youth178  A recently developed parent-report, available by purchase for those aged 5 to 17 years, the Participation and Environment Measure for Children and Youth (PEM-CY) 178 assesses children’s participation in everyday life at home, school or out in the community. Although the PEM-CY 178 also evaluates environmental supports and barriers to children’s participation in the three settings, those results were not included in this dissertation. Items evaluated frequency of participation within the last four months, extent of involvement, and desire for change in participation at home (10 items), at school (5 items) and in the community (10 items). 178, 200 Each of these dimensions were scored separately across each setting, providing nine summary scores. Frequency was scored using an 8-point ordinal scale ranging from 1 (daily) to 8 (never participating). Parents’ perception of their child’s involvement (indicating extent to which child was engaged in activities) was scored on a 5-point ordinal scale, ranging from 1 (minimally involved) to 5 (very involved). Parents’ degree of desired change (indirectly indicating parents’ satisfaction with child’s current participation) was scored on a nominal scale including 0 (no   118 change desired) and 1 (change desired). Five ‘yes’ options, not affecting the summary score, clarified type(s) of change desired (i.e., being more or less involved, doing the activity more or less often, or being involved in a broader variety of activities). Scores were reverse-coded for frequency as per instruction manual. When calculating summary scores, higher scores across settings indicated greater frequency and involvement while desired change was presented as a dichotomous variable (i.e., changed desired or not). 178 Greater frequency of participation or participation in more items were not indicative of ‘better’ participation, but rather were used for group comparison. 200 Average frequency scores summed parents’ frequency responses within each setting divided by the number of items within each setting that the child engaged in, while frequency percent (%) possible scores were derived by counting the number of items within each setting that the parent responded that their child participated in divided by total number of items available in each setting. This score is of benefit when comparing scores where missing data might be related to not all items being applicable. 269 The questionnaire reportedly takes 30 minutes to complete. Refer to Chapters 2 and 3 for reliability and validity evidence for children 5 to 17 years with and without disabilities. 178, 200, 201, 217-219   4.2.3.1.2 Children’s Assessment of Participation and Enjoyment 166  The Children’s Assessment of Participation and Enjoyment (CAPE)  166 is a 55-item child report that measures out-of-school participation across five dimensions, also available by purchase. For each item, the child rated diversity (i.e., did they engage in the activity or not within the last four months), intensity (i.e., how frequently they engaged in the activity within the last four months) enjoyment, with whom and where participation took place. 166 Reportedly taking 30 to 45 minutes to complete, it may be self-administered or completed in a semi-structured interview,   119 and parents may assist as needed. 189 All items were scored using ordinal scales, ranging from 0 to 7 (depending on dimension), except for the dichotomous diversity score. Summary scores for each of the five participation dimensions included total score (55 items); informal (40 items relating to non-structured leisure) or formal domains (15 items relating to structured lessons or group activities, often with an instructor or coach, or having rules or specific goals); or recreational (12 items), active-physical (13 items), social (10 items), skill-based (10 items), and self-improvement (10 items) types. 166 Diversity scores counted the number of items the child engaged in within that particular summary score category, intensity scores were summed and divided by the total number of items available in each category, while each of the other dimensions were summed and divided by the diversity score to obtain an average score within that summary score category. Higher scores indicated greater diversity, intensity, enjoyment, and engagement beyond the family and home environments, but similar to the PEM-CY, 178 greater frequency scores should not be interpreted as better participation. 166 Developers recommended intensity and diversity summary scores be used together as diversity summary scores indicate absolute number of items engaged in, while intensity summary scores provide a relative indicator of frequency based on total number possible. 166 Chapters 2 and 3 summarized evidence of the CAPE’s 166 reliability and validity for those 6 to 21 years with and without disabilities. 39, 50, 52, 57, 166, 186   4.2.3.1.3 Wheelchair Outcome Measure for Young People The Wheelchair Outcome Measure for Young People (WhOM-YP) evaluates importance and satisfaction with self-identified participation outcomes influenced by the child’s seating and mobility interventions (Appendix L). The WhOM-YP, developed for use with those 18 years and   120 younger, was included as a potential hybrid of child and parent reports addressing self-selected meaningful participation outcomes. The WhOM-YP was completed by the child and/or parent, depending on the child’s age and abilities; if the child was unable to independently express his/her views, both child and parent outcomes and ratings were solicited and recorded separately, along with the degree of parental input. The WhOM-YP, reportedly taking less than 30 minutes to administer using a semi-structured interview format, encompasses two parts. 258 Part I is comprised of up to 5 self-identified participation outcomes desired for home (referred to as inside participation) and community settings (including school; referred to as outside participation). Individuals rated their perceived importance along with their satisfaction of the child’s current performance when using wheeled mobility for each of their participation outcomes using an 11-point ordinal scale ranging from 0 (not important or not satisfied) to 10 (very important or very satisfied). Part II consists of three questions addressing sitting comfort, body posture and skin integrity, rated using the 11-point scale. 258 WhOM-YP Part I summary scores provide several options: a total score (sum of identified items) or a mean score (sum of identified items divided by number identified), calculated for importance, satisfaction, or [importance×satisfaction]. 258 Higher WhOM-YP summary scores indicate greater importance and greater satisfaction. WhOM-YP Part II comfort, posture and skin integrity scores relate to ICF ‘body structures and functions’, 33, 34 and therefore were not included in this dissertation. Although reliability and validity evidence supports the WhOM’s use with adults,  258, 270-273 this was the first study investigating the WhOM-YP’s measurement properties with children.     121 4.2.3.2 Descriptive Participant Information  All descriptive data were gathered at the first session (T1). Selection of measurement tools were informed by literature review and conceptual models introduced in Chapter 1.2,3,8-11,13,19,80  4.2.3.2.1 Demographic Profile of Participants We used a parent-report form designed for the study to collect socio-demographic information (e.g., age, sex, diagnosis, school grade, and family descriptors, see Appendix M) and historical information related to PM device use (e.g., age of first PM device, how many PM devices used, and why equipment was changed, see Appendix N).   4.2.3.2.2 Gross Motor Functional Classification System (GMFCS) 229 Reportedly taking only a few minutes to complete, this five-point ordinal scale described children’s gross motor ability. Parents indicated which level was most like their child after reading a brief description, based on their child’s age (4 to 6 years, 6 to 12 years, 12 to 18 years), of each of five levels (Level I indicated greater gross motor abilities than Level V). Reliability and validity evidence has been reported for children with CP 229, 274-278 although the GMFCS 229 has been used with children who have diagnoses other than CP. 279-282 The GMFCS 229 is freely available at https://www.cpqcc.org/sites/default/files/documents/HRIF_QCI_Docs/GMFCS-ER.pdf.    4.2.3.2.3 Manual Ability Classification Scale (MACS) 283  The MACS, 283 a five-point ordinal scale, classified fine motor abilities of children. Developed for children aged 4 to 18 years where Level I indicated better fine motor abilities than Level V.   122 Reportedly taking only a few minutes to complete, parents indicated which level was most like their child, after reading descriptions of all five levels. Reliability and validity evidence for children with CP has been reported, 283-285 although it has been used with children with diagnoses beyond CP. 279, 280, 286, 287  The MACS is freely available at http://www.macs.nu/download-content.php.   4.2.3.2.4 Functional Mobility Scale (FMS) 288 Parents indicated their child’s functional mobility for distances of 5 metres (m), 50 m and 500 m using a six-point ordinal scale to describe mobility methods from 1 (using a wheelchair) to 6 (walking independently over all surfaces) (Appendix O). It requires less than 5 minutes to complete. 289, 290 Reliability and validity evidence has been reported for children with CP. 289, 290   4.2.3.2.5 Level of Sitting Scale (LSS) 291  Sitting ability was evaluated to provide a more discriminative description of seated motor control (Appendix P), as it was anticipated that most children would be classified as GMFCS 229  levels IV or V and have a FMS288 score of 1 (used a wheelchair). The eight-point ordinal scale ranged from 1 (individual unable to sit for 30 seconds supported by one adult) to 8 (individual able to move with control, in and out of their base of support while sitting on a flat bench with feet unsupported). 291 The LSS reportedly takes 5 minutes to complete and reliability and validity evidence for children and adults with physical disabilities has been reported.291-294      123 4.2.3.2.6 Modified Mini-Mental Status Exam (MMSE) 295, 296  The MMSE 295, 296 was used as a screening tool for children’s cognition, and reportedly takes approximately 10 minutes to administer. Items examined orientation, registration, attention, calculation, recall and language (Appendix Q). A total score 2 standard deviations (SD) below the age mean for different age groups, out of a possible 37 points, reportedly indicates cognitive dysfunction. 295, 296 Reliability and validity evidence have been reported for children as young as three years.295-298  4.2.3.2.7 Assessment of Learning Powered Mobility Use (ALP) 79  Driving ability was described using the ALP, an eight-point ordinal scale that ranged from Novice (level 1) to Expert (level 8) (Appendix R). 79 A score of zero was added to indicate those not yet using PM. Behavioral observations when driving were rated under subheadings of attention, activity and movement, understanding of tool use, expressions and emotions and interaction and communication. The level with the most positive occurring observations present identified driving level. The ALP 79 was a recently developed collaboration between two researchers who each developed a learning continuum for PM anchored in grounded theory research. 77-79 Reliability and validity evidence have been published using earlier versions. 77-79   4.2.4 Data Collection  The assessor, an occupational therapist with at least two years’ experience working with children using PM, learned administration instructions and evaluation protocol for all measurement tools, and pilot tested them with 4 children before initiating data collection. The child’s parent completed the parent-report measurement tools, while the assessor completed the WhOM-YP   124 and CAPE166 with the child, accepting parental assistance as needed. The assessor also administered tools requiring observation of the child’s behavior (LSS, 291 MMSE, 295, 296 ALP 79). Each session was no longer than two hours, with breaks as needed. Multiple shorter sessions were offered if deemed necessary or preferred by participants (to address children’s attention or fatigue, or family schedules). The first two sessions (T1 and T2) were scheduled on average 2 weeks apart, but not less than 1 week and no more than 4 weeks apart, to evaluate test-retest reliability.  All three participation tools were administered at Time 1 (T1), with the PEM-CY 178 and WhOM-YP administered again at Time 2 (T2). We would have liked to complete the CAPE 166 on both occasions (T1 and T2), however, given its length (55 items, each with 5 parts) and extended administration time, we decided response burden would be too great to re-administer this tool at T2. We did not want to jeopardize participant retention, especially for those receiving a new wheelchair as they had an additional three sessions post-wheelchair delivery (see Chapter 5 for details). Both T1 and T2 occurred before participants received their new PM devices (if deemed appropriate by their therapist).   Participants and their families chose the most convenient time and location for the sessions. Given that the two sessions (T1 and T2) were relatively close in occurrence, we expected rapport would develop quickly between the assessor and participants, facilitating adherence. However, to offset time and expenses, and to reduce dropouts, we offered an honorarium of $20/session on completion.     125 4.2.5 Data Analyses Raw data were entered into Excel 244 spreadsheets, checked, transformed and imported to SPSS version 23 299 for analyses. Descriptive statistics described the sample as well as distribution of each measurement tool’s summary scores. Data type and distribution determined specific measures of central tendency and dispersion used (e.g. means or medians, standard deviations or inter-quartile range). Reliability estimates were sought for internal consistency (for PEM-CY178 and CAPE166), test-retest reliability and standard error of measurement (SEM) (for PEM-CY178 and WhOM-YP) while evidence of validity was sought using four different strategies, referencing the validity framework suggested by the Standards for Educational and Psychological Testing. 113, 300 Incomplete participation data were excluded from analyses using pairwise deletion, except for internal consistency analyses where listwise deletion was employed.  Internal consistency was examined using Cronbach’s alpha for PEM-CY 178 and CAPE 166 summary scores. Examining internal consistency was not appropriate for the WhOM-YP as it relied on client-specified individualized items. We hypothesized that Cronbach’s alpha coefficient for PEM-CY178 average frequency, frequency % possible, average involvement, and % change desired scale scores for home, school and community settings and CAPE 166 overall intensity, diversity and enjoyment scores would achieve at least  α > 0.60, similar to previous studies reporting PEM-CY 178 and CAPE 166 reliability evidence with children having physical disabilities. 166, 178, 186, 301   For test-retest reliability, PEM-CY 178 and WhOM-YP summary scores were examined over a two-week period. Intraclass correlation coefficient estimates using a two-way random effects   126 model with absolute agreement (ICC (2,1)) and 95% confidence intervals (CI95) were chosen to provide support for the tools’ consistency and agreement of scores over time with different subjects and different raters, in keeping with Generalizability theory. 110, 112 We hypothesized that PEM-CY178 (average frequency, percent possible frequency, average involvement, and percentage change desired) summary scores for home, school and community178 along with WhOM-YP mean satisfaction and mean [importance x satisfaction] summary scores for inside home and outside home participation would demonstrate test-retest reliability over a two week period with an Intraclass correlation coefficient estimate (ICC 2,1) > 0.70. Similar to other measurement studies using these tools, 178, 270, 272 our anticipated level of reliability is adequate for group-level research applications.112, 302  We examined different sources of validity evidence to support the use of the three selected measurement tools with children benefiting from PM. 112, 113 The first source explored appropriateness of the selected scales and test items for our population. Descriptive information about the three tools provided an initial indication of the tools’ relevance and acceptability of content and structure to children and their parents. Individualized participation outcomes, identified using the WhOM-YP, were classified using the ICF 33, 34 ‘activities and participation’ components according to the process outlined by Cieza et al. 303, 304 Classification involved: (1) identification of ICF 33, 34 participation outcomes from the WhOM-YP self-identified inside and outside participation outcomes; and (2) selection of ICF 33, 34 domains and categories that best represented the participation outcomes. Frequency counts summarized the self-identified participation outcomes.     127 The second source of validity evidence explored relationships among the three participation tools’ summary scores as evidence of their relationship with other variables. 112, 113 Correlation coefficient values closer to 1 indicated stronger associations than values closer to 0, with positive numbers indicating a relationship between variables in the same direction, while negative numbers suggest an inverse relationship. 110 The specific type of correlation coefficient (e.g., Pearson product-moment correlation coefficients (r) or Spearman’s rank correlation coefficients (rs)) depended on descriptive findings of summary scores and fit with parametric assumptions (i.e., continuous, normally distributed data from a randomly selected sample with no outliers). 110, 112 Given the different focus of measurement and strategies employed by each of the three tools, 13, 35 we hypothesized the following associations, based on theoretical models of children’s participation: 2, 3, 13    PEM-CY 178 home and community participation frequency percent possible summary scores and CAPE 166 overall intensity and diversity scores will be 0.3> r <0.8,   PEM-CY 178 home and community participation average involvement scores and CAPE 166 overall enjoyment score will be 0.0> r <0.4,  PEM-CY 178 home participation percent possible frequency summary score and WhOM-YP parent inside [mean importance x satisfaction] summary scores will be 0.0 > r <0.4,  PEM-CY 178 school and community participation percent possible frequency summary scores and WhOM-YP parent outside mean [importance x satisfaction] summary scores will be 0.0> r <0.4,  CAPE 166 overall enjoyment score and each of WhOM-YP child mean inside and outside [importance x satisfaction] summary scores will be 0.0> r <0.5. While each of the measurement tools’ selected summary scores measured children’s   128 participation in everyday life, we expected most relationships between selected summary scores not to be very strong because they evaluate different aspects of participation, although we anticipated that frequency and diversity scores would be more closely aligned. 2, 3, 13, 35, 66 In addition to correlations between the parent report PEM-CY 178 and child report CAPE 166 we also expected a relationship (0.2> r <0.7) between parent and child scores on the WhOM-YP mean [importance x satisfaction] summary scores in similar settings, indicating that the two perspectives are related but not identical.13, 35, 66  The third source of validity evidence used the known-group method to explore predicted differences across summary scores for groups known to differ on specific variables of interest. 112, 113 Based on prior research where age differences were noted for children’s participation, 42, 46, 50, 53, 61 we hypothesized that there would be statistically significant differences in mean scores  (p <0.05 significance level)(as demonstrated using either independent sample t-test for data fitting parametric assumptions or Mann Whitney U Test, the nonparametric alternative), for children 12 years and older compared to children under 12 years of age on PEM-CY 178 school frequency percent possible summary scores, and CAPE 166 overall intensity scores.   A further known-group analysis explored differences between children who were new to PM compared to those experienced with PM on the PEM-CY 178 community participation frequency percent possible summary scores as well as WhOM-YP outside home participation [importance x satisfaction] summary scores. Previous research exploring participation differences in children between those experienced with PM versus those who are not experienced with PM are limited as Chapter 1 outlined, although adult literature suggests there may be differences. 147, 233, 305-308   129 Therefore, to provide guidance on this set of analyses, we relied on clinical expertise, 10, 21, 66, 80, 240 and literature suggesting a difference in children’s participation based on motor abilities. 1, 63, 65, 309, 310 For both comparisons a Bonferroni adjustment to protect against a Type I error was calculated using a family-wise error rate of 0.05/4 planned comparisons, giving an adjusted alpha = 0.0125. 110, 112     As a final source of validity evidence, 115, 116 we determined the Minimal Detectable Difference (MDD) for PEM-CY178 and WhOM-YP summary scores, as one estimate of a measurement tool’s responsiveness, or ability to detect change. 117, 118 MDD values for CAPE summary scores were not determined because we did not re-administer the tool at T2. The Minimal Detectable Difference, sometimes referred to as Minimal Detectable Change (MDC), was defined as the smallest amount of change considered above the threshold of measurement error in a group of individuals who were expected to be stable (on the variable under investigation). 110, 112, 117 We calculated MDDs using a 95% confidence interval (CI95; z = 1.96) with the formula MDD95 = SEM × √2 × z. 110, 112 A MDD95 suggests that 95% of the time individuals will demonstrate random variation less than the MDD95 value when tested under stable conditions on multiple occasions. 110, 112 Higher MDD95 values indicated that larger changes in scores were necessary to reflect a true change beyond measurement error. 110, 112 The standard error of measurement (SEM) quantifies the scores’ precision within the sample using the reliability estimates, with higher SEM values indicating less precise measurements. 110, 112 We calculated SEM for each summary score using the formula SEM = s × √ (1 – ICC2,1), where  s = SD of the test at  T1, and ICC(2,1) = test-retest reliability coefficient of the respective participation summary scores. 110, 112    130  4.2.5.1 Sample Size Calculation Thirty participants were selected to provide a large enough sample to assess feasibility criteria and address feasibility outcomes reported in Chapter 5, 133 as well as to investigate preliminary test-retest reliability estimates. 311 Communication with the primary BC provincial funding agency for paediatric PM (MCFD) indicated that this target was reasonable based on annual power wheelchair provision rates (Meaning S, Children and Youth with Special Needs Therapy Manager BC MCFD, 2013, January 22, email communication).   4.3 Results   A total of 82 potential participants were identified by primary therapists. This total included 54 potential participants introduced to the study by their therapist (of which 41 connected with the study coordinator) and 32 who were mailed an introduction package (none responded). At the end of the study, we learned that four on the mail-out list were also contacted by their primary therapist (at a later date). Nine of the 41 parents declined to participate stating they were too busy, while one child had acute medical complications after initial contact. Additional information was shared by the primary therapist on 10 of the 13 potential participants who did not contact the study coordinator: two decided not to pursue funding for a power wheelchair, two children became too old for the study shortly after being introduced to the study by their therapist, two families had significant medically-related situations and four had yet to secure funding for a new power wheelchair prior to the end of study recruitment. Of the 32 children enrolled, one child passed away suddenly and unexpectedly after the first session (with a   131 diagnosis of Duchenne muscular dystrophy), two did not have sufficient time for the second session prior to receiving their new power wheelchair, and a third had too long a period between T1 and T2 (greater than 4 weeks). As a result, T2 data were collected on 28 participants.    Participant characteristics of the 32 children and parents that took part are described in Table 4.1. Parents were primarily mothers, with post secondary education, between the ages of 20 and 49 years.  Fifty nine percent of children were male, with the full eligible age-span represented (mean age 11.4 years (standard deviation (SD) 4)). Children with cerebral palsy were most prevalent, followed by those with muscular diseases. As the GMFCS, 229 MACS, 283 FMS 288 and LSS 291 scores illustrate, children had a range of motor abilities. Although all used wheeled mobility for some activities, 10 walked with walking aids for distances ranging from 5 to 500 meters and seven walked independently for at least 5 meters. Of those using wheeled mobility, 10 required upper body external postural support to maintain a sitting position. Ten were new to PM use, while the remainder were experienced drivers. All children had an acceptable MMSE score, 295, 296 indicating that they had the cognitive ability to answer questions asked of them, although they varied in their communication strategies (e.g., voice, sign language, gestures including finger or eyepointing and use of electronic speech generating devices).   4.3.1 Reliability 4.3.1.1 Internal Consistency Table 4.2 lists the internal consistency coefficient estimates for select PEM-CY 178 and CAPE 166 summary scores. Cronbach’s alpha coefficients for PEM-CY 178 frequency of participation across all environments ranged from 0.37 to 0.69, involvement from 0.52 to 0.79 and desired change   132 was highest from 0.86 to 0.91. Cronbach’s alpha coefficient estimates for CAPE 166 overall diversity, intensity, whom, where and enjoyment summary scores ranged from 0.84 to 0.91.   4.3.1.2 Test Retest Reliability  The average time for retest was 16.75 days (SD 7.3) CI95 [14.0,19.4], with a sample of 28 participants. Test-retest reliability ICC(2,1) point estimates and 95% confidence intervals are summarized in Table 4.2 for select PEM-CY178 and WhOM-YP summary scores. Of the PEM-CY178 average frequency summary scores, only the community participation summary had a CI95 that did not include ICC(2,1) =0 (i.e., home and school participation scores were not reliable). PEM-CY178 frequency % possible ICC(2,1)  point estimates ranged from 0.64 to 0.74, while average involvement summary scores were 0.47 for home and 0.59 for community participation (school participation had a CI95 including ICC(2,1)=0). ICC(2,1) point estimates were highest for the percent desired change summary score with values ranging from 0.71 to 0.85.   WhOM-YP test-retest reliability ICC(2,1) point estimates for parent ratings ranged from ICC(2,1) 0.85 to 0.95, while the CI95 included ICC(2,1)=0 for inside participation mean importance. For children’s (aged 5-17 years) mean satisfaction and mean [importance x satisfaction] summary scores ratings, ICC point estimates ranged from 0.57 to 0.63 for inside participation and 0.93 to 0.94 for outside participation, while mean importance scores were 0.33 for inside participation and 0.48 for outside participation. For a subsample of children 8 to 17 years of age, reliability of inside and outside participation mean summary scores increased to ICC(2,1)>0.80 for mean satisfaction and mean [importance x satisfaction] estimates, while mean importance estimates increased but remained ICC(2,1)<0.62 for inside and outside participation.      133  4.3.2 Validity 4.3.2.1 Appropriateness of Tools for Children Benefiting from Power Mobility Table 4.2 provides descriptive information including the three tools’ select summary scores’ mean, CI95, SD, number of items associated with each summary score and number of respondents for both sessions. Appendices S and T present additional information describing PEM-CY178 and CAPE 166 results respectively, providing further evidence of score distributions, items’ inter-relatedness and subscale associations within each of the three participation tools. 111 Table 4.3 and Appendix U(i,ii) list the WhOM-YP inside and outside participation outcomes that children identified along with the associated ICF 33, 34 domains and categories. Participants identified 67 inside participation outcomes compared to 116 outside participation outcomes, covering ICF 33, 34 Chapters 6 through 9.   4.3.2.2 Degree of Association Among the Three Participation Tools As evidence of the degree of association between two variables, Table 4.4 presents correlation coefficient estimates between select summary scores of the three tools. Spearman’s rank correlation coefficients were used because data were primarily ordinal in nature, and not normally distributed. 110, 112 Statistically significant correlation coefficient estimates were as follows:   PEM-CY178 frequency percent possible community participation and CAPE 166 overall diversity scores: rs=0.55 (p<0.001).  PEM-CY178 frequency percent possible community participation and CAPE 166 overall intensity scores: rs=0.61 (p<0.001).     134  CAPE166 overall enjoyment and WhOM-YP child outside participation mean [importance x satisfaction] scores: rs=0.35 (p=0.05)  WhOM-YP child vs. parent mean [importance x satisfaction] summary scores:  rs=0.75 (p=0.01) for inside participation and rs=0.79 (p<0.001) for outside participation.  Hypothesized associations that were not statistically significant included:   PEM-CY178 home participation frequency percent possible and CAPE 166 overall diversity and intensity scores.  PEM-CY178 home participation frequency percent possible and WhOM-YP parent mean inside participation [importance x satisfaction] scores.  PEM-CY178 school participation and community participation frequency percent possible and WhOM-YP parent mean outside participation [importance x satisfaction] scores.   PEM-CY178 average home and community participation involvement and CAPE 166 enjoyment scores.   CAPE166 overall enjoyment and WhOM-YP child inside participation mean [importance x satisfaction] scores.  4.3.2.3 Differences Between Groups on Selected Variables Table 4.5 summarizes differences in distribution of summary scores for two different groups. The first two analyses compared children 12 years and older to children under 12 years of age. As hypothesized, a statistically significant difference between the two age groups on the distribution of their CAPE 166 overall intensity scores but not on their PEM-CY178 school