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Measuring confidence with manual wheelchair use : a four phase, mixed-methods study Rushton, Paula Wendy 2010

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MEASURING CONFIDENCE WITH MANUAL WHEELCHAIR USE: A FOUR PHASE, MIXED-METHODS STUDY  by  Paula Wendy Rushton  B.Sc., Mount Allison University, 1993 M.Cl.Sc. (OT), The University of Western Ontario, 1999  A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF DOCTOR OF PHILOSOPHY in THE FACULTY OF GRADUATE STUDIES (Rehabilitation Sciences) THE UNIVERSITY OF BRITISH COLUMBIA (Vancouver) December 2010  © Paula Wendy Rushton, 2010  Abstract Introduction Confidence in one‟s ability to perform a given task can be a stronger predictor of performance than skill itself. There are currently no measures to assess confidence with manual wheelchair use. The objective of this study was to develop and assess the psychometric properties of a new outcome measure, the Wheelchair Use Confidence Scale (WheelCon-M). Purpose 1. To describe situations that challenge confidence with manual wheelchair use from the perspectives of wheelchair users and health care professionals (chapter 2). 2. To select items and assess the test content of the WheelCon-M (chapter 3). 3. To refine items on the WheelCon-M to ensure each item is interpreted as intended (chapter 4). 4. To examine the psychometric properties of the WheelCon-M (internal structure, internal consistency, reliability, and relations to other variables) (chapter 5). Methods Design: This study used a mixed-methods design incorporating qualitative interviews (chapter 2), a Delphi survey (chapter 3), a think aloud process (chapter 4), and a test-retest methodological study (chapter 5). Participants: Wheelchair users participated in the interviews (n=13), Delphi survey (n= 22), think aloud process (n=7), and test-retest (n=83). Health care professionals participated in the ii  interviews (n=16) and the Delphi survey (n=16). Researchers participated in the Delphi survey (n=5). Measures: A semi-structured interview guide was used for the qualitative interviews (chapter 2) and standardized measures were used in the test-retest study (chapter 5), including the Wheelchair Skills Test, version 4.1 (objective and questionnaire versions), Barthel Index, Life Space Assessment, Interpersonal Support Evaluation List, Hospital Anxiety and Depression Scale, Functioning Everyday with a Wheelchair, and a demographic questionnaire. Results The WheelCon-M, version 1.0 was an 84-item scale with items generated from the qualitative interviews. Items were selected and the content validated using the Delphi survey, thus reducing the number of items to 62 (version 2.0). Items were refined using the think aloud process which resulted in a 63-item scale (version 2.1). Support for the psychometrics of the WheelCon-M, version 2.1 was provided in the test-retest study. Conclusions The WheelCon-M, version 2.1 provides a means of measuring confidence with manual wheelchair use from a clinical and research perspective.  iii  Preface  In consultation with my committee (Dr. William Miller, Dr. Janice Eng, and Dr. Lee Kirby), I identified and developed this research program, conducted data collection, and analyzed the results of the study. I was first author for all of the chapters of this thesis and received ongoing feedback from my committee. A version of Chapter 3 has been published. Rushton PW, Miller WC, Kirby RL, Eng JJ, Yip J. Development and content validation of the Wheelchair Use Confidence Scale: a mixed-methods study. Disabil Rehabil Ass Tech 2010 September 2, 2010 (Advance on-line publication). doi:10.3109/17483107.2010.512970. Available at: http://informahealthcare.com.ezproxy.library.ubc.ca/doi/pdf/10.3109/17483107.2010.512970. PWR and WCM conceptualized the study and developed the design; PWR collected data, analyzed the data, and drafted the manuscript. WCM supervised the project, participated in interpretation of the results and editing of the manuscript; RLK provided feedback and recommendations for study design, site support for data collection in Halifax, NS and editing of the manuscript; JJE provided feedback and recommendations for study design, and editing of the manuscript. A version of Chapter 4 will be submitted for publication. Rushton PW, Vaughan K, Miller WC, Kirby RL, Eng JJ. Item Refinement of the Wheelchair Use Confidence Scale: A Think Aloud Approach. PWR and WCM conceptualized the study and developed the design; PWR and KV collected and analyzed the data; PWR drafted the manuscript; and KV assisted with manuscript preparation. WCM supervised the project, participated in interpretation of the results and editing of the manuscript; RLK and JJE provided feedback on and editing of the manuscript. iv  A version of Chapter 5 will be submitted for publication. Rushton PW, Miller WC, Kirby RL, Eng JJ. Reliability and Validity of a Measure for the Assessment of Confidence with Manual Wheelchair Use (WheelCon-M). PWR and WCM conceptualized the study and developed the design; PWR collected data, trained research assistants to assist with data collection; analyzed the data, and drafted the manuscript. WCM supervised the project, participated in interpretation of the results and editing of the manuscript; RLK provided feedback and recommendations for study design, site support for data collection in Halifax, NS and editing of the manuscript; JJE provided feedback and recommendations for study design, and editing of the manuscript. Refer to the first pages of these chapters to see footnotes with similar information. This research was approved by the University of British Columbia Behavioural Research Ethics Board, Certificate # H07-02570, Capital District Health Authority, Certificate # CDHARS/2009/085, and McMaster University Research Ethics Board, Certificate # 2009 116.  v  Table of Contents Abstract ........................................................................................................................................... ii Preface............................................................................................................................................ iv Table of Contents ........................................................................................................................... vi List of Tables ................................................................................................................................. xi List of Figures ............................................................................................................................... xii Glossary ....................................................................................................................................... xiii Acknowledgements ....................................................................................................................... xv 1  Introduction ............................................................................................................................. 1 1.1  Impetus for this research .................................................................................................. 1  1.2  Wheelchair use ................................................................................................................. 1  1.2.1  Epidemiology of wheelchair use ............................................................................... 1  1.2.2  Assistance required for manual wheelchair users ..................................................... 2  1.2.3  Abandonment of wheelchairs ................................................................................... 3  1.2.4  Assessment of wheelchair mobility .......................................................................... 3  1.2.5  Factors that impact wheelchair use ........................................................................... 9  1.2.6  Predictors of wheelchair use ................................................................................... 12  1.3  Self-efficacy ................................................................................................................... 13  1.3.1  Self-efficacy is the core of Social Cognitive Theory .............................................. 13  1.3.2  Self-efficacy defined ............................................................................................... 14  1.3.3  Sources of self-efficacy........................................................................................... 14  1.3.4  Why is it important to measure self-efficacy with wheelchair use? ....................... 15  1.4  Development and validation of a self-efficacy measure ................................................ 17  1.4.1  In general ................................................................................................................ 17  1.4.2  Development of a self-efficacy measure................................................................. 18  1.4.3  Self-efficacy and assessment of mobility ............................................................... 19  1.5  An overview of the four phases of this research ............................................................ 20  1.5.1 Chapter 2 –Situations that challenge confidence with wheelchair use: A qualitative exploration ............................................................................................................................. 20 1.5.2 Chapter 3 – Development and content validation of the Wheelchair Use Confidence Scale: a mixed-methods study ............................................................................ 21 vi  1.5.3  Chapter 4 – Item refinement of the WheelCon-M: A think aloud approach .......... 21  1.5.4 Chapter 5 – Reliability and validity of a measure for the assessment of confidence with manual wheelchair use (WheelCon-M) ......................................................................... 22 2  Situations that Challenge Confidence with Wheelchair Use: A Qualitative Exploration .... 24 2.1  Introduction .................................................................................................................... 24  2.2  Research philosophical assumptions and theoretical framework ................................... 25  2.3  Methods .......................................................................................................................... 26  2.3.1  Design ..................................................................................................................... 26  2.3.2  Ethics....................................................................................................................... 26  2.3.3  Participants .............................................................................................................. 26  2.3.4  Data collection and analysis.................................................................................... 27  2.4  Findings .......................................................................................................................... 28  2.4.1  Participants .............................................................................................................. 28  2.4.2  Key themes and discussion ..................................................................................... 30  2.5  2.4.2.1  Everything that most people wouldn‟t even look twice at .............................. 31  2.4.2.2  Too high for me to reach ................................................................................. 33  2.4.2.3  It isn‟t a problem if I know what I need .......................................................... 34  2.4.2.4  Being my own advocate .................................................................................. 35  2.4.2.5  Looking like a struggling invalid..................................................................... 36  2.4.2.6  That kind of shakes your confidence ............................................................... 37  Conclusions .................................................................................................................... 38  3 Development and Content Validation of the Wheelchair Use Confidence Scale: A MixedMethods Study ............................................................................................................................. 40 3.1  Introduction .................................................................................................................... 40  3.2  Method ........................................................................................................................... 41  3.2.1  Design ..................................................................................................................... 41  3.2.2  Item generation ....................................................................................................... 41  3.2.2.1  Recruitment ..................................................................................................... 41  3.2.2.2  Procedure ......................................................................................................... 42  3.2.2.3  Data analysis .................................................................................................... 42  3.2.2.4  WheelCon-M development.............................................................................. 43  vii  3.2.3  3.3  3.2.3.1  Expert panel ..................................................................................................... 43  3.2.3.2  Delphi questionnaire development and distribution ........................................ 44  3.2.3.3  Round 1............................................................................................................ 44  3.2.3.4  Round 2 and round 3 ....................................................................................... 45  3.2.3.5  Analysis ........................................................................................................... 45  Results ............................................................................................................................ 47  3.3.1  Item generation ....................................................................................................... 47  3.3.1.1  Experts ............................................................................................................. 47  3.3.1.2  Interviews ........................................................................................................ 49  3.3.2  4  Item selection .......................................................................................................... 43  Item selection .......................................................................................................... 49  3.3.2.1  Experts ............................................................................................................. 49  3.3.2.2  Delphi rounds .................................................................................................. 50  3.3.2.3  WheelCon-M instructions and response scale ................................................. 52  3.3.2.4  WheelCon-M items.......................................................................................... 52  3.3.2.5  WheelCon-M, version 2.0 ............................................................................... 58  3.4  Discussion ...................................................................................................................... 58  3.5  Conclusion...................................................................................................................... 62  Item Refinement of the WheelCon-M: Use of a Think Aloud Approach ............................ 64 4.1  Introduction .................................................................................................................... 64  4.2  Method ........................................................................................................................... 66  4.2.1  Design ..................................................................................................................... 66  4.2.2  Participants .............................................................................................................. 66  4.2.3  Measure ................................................................................................................... 67  4.2.4  Procedure ................................................................................................................ 67  4.2.5  Data analysis ........................................................................................................... 68  4.3  Results ............................................................................................................................ 70  4.3.1  Participants .............................................................................................................. 70  4.3.2  Application of behavior codes ................................................................................ 71  4.3.3  Item revision ........................................................................................................... 77  4.4  Discussion ...................................................................................................................... 78 viii  5 Reliability and Validity of a Measure for the Assessment of Confidence with Manual Wheelchair Use (WheelCon-M) .................................................................................................. 82 5.1  Introduction .................................................................................................................... 82  5.2  Methods .......................................................................................................................... 84  5.2.1  Design ..................................................................................................................... 84  5.2.2  Participant recruitment and screening ..................................................................... 84  5.2.3  Primary measure ..................................................................................................... 85  5.2.4  Comparison measures ............................................................................................. 86 Personal factors................................................................................................ 86  5.2.4.2  Environmental factors...................................................................................... 86  5.2.4.3  Activities and participation .............................................................................. 88  5.2.4.4  Body functions and structures ......................................................................... 90  5.2.5  Data collection ........................................................................................................ 91  5.2.6  Data analysis ........................................................................................................... 91  5.3  5.2.6.1  Reliability ........................................................................................................ 92  5.2.6.2  Validity ............................................................................................................ 93  Results ............................................................................................................................ 94  5.3.1  Sample..................................................................................................................... 94  5.3.2  Reliability.............................................................................................................. 100  5.3.3  Validity ................................................................................................................. 102  5.4  Discussion .................................................................................................................... 103  5.4.1  Reliability.............................................................................................................. 103  5.4.2  Validity ................................................................................................................. 104  5.5 6  5.2.4.1  Conclusion.................................................................................................................... 106  Discussion and Future Direction ......................................................................................... 108 6.1  Overview ...................................................................................................................... 108  6.1.1  Test content ........................................................................................................... 109  6.1.2  Response process .................................................................................................. 110  6.1.3  Internal structure ................................................................................................... 111  6.1.4  Relations to other variables ................................................................................... 111  6.1.5  Consequences ........................................................................................................ 112 ix  6.2  Strengths and limitations .............................................................................................. 113  6.3  Implications .................................................................................................................. 117  6.4  Future directions ........................................................................................................... 117  References ................................................................................................................................... 119 Appendices .................................................................................................................................. 140 Appendix A Wheelchair User Demographic Form (Phases 1 and 2) ......................................... 141 Appendix B Health Care Professional Data Collection Form (Phases 1 and 2) ......................... 142 Appendix C Semi-Structured Interview Guide ........................................................................... 143 Appendix D WheelCon-M, version 1.0 ...................................................................................... 145 Appendix E WheelCon-M, version 2.0....................................................................................... 153 Appendix F Mini Mental Status Exam ....................................................................................... 164 Appendix G Wheelchair User Demographic Form (Phases 3 and 4) ......................................... 167 Appendix H WheelCon-M, version 2.1 ...................................................................................... 169 Appendix I Interpersonal Support Evaluation List ..................................................................... 180 Appendix J Functioning Everyday with a Wheelchair ............................................................... 183 Appendix K Wheelchair Skills Test, version 4.1 ........................................................................ 188 Appendix L Barthel Index .......................................................................................................... 190 Appendix M Life Space Assessment .......................................................................................... 193 Appendix N Hospital Anxiety and Depression Scale ................................................................. 194  x  List of Tables Table 1.1 Selected properties of wheelchair mobility outcome measures ...................................... 5 Table 2.1. Participants‟ demographic data .................................................................................... 30 Table 3.1 Demographics of experts .............................................................................................. 48 Table 3.2 Number of experts involved in each Delphi round ....................................................... 50 Table 3.3 Delphi responses and time to complete per round ........................................................ 51 Table 3.4 Items retained, removed, and re-rated after each Delphi round.................................... 54 Table 3.5 Items removed from the WheelCon-M during and post Delphi rounds ....................... 56 Table 4.1 Participant characteristics and number of problem indicators per behavior code per participant ..................................................................................................................................... 70 Table 4.2 Problem indicators and intra-rater Kappa scores for the WheelCon-M items .............. 72 Table 5.1 Demographic, clinical, and wheelchair-usage characteristics of the sample ................ 95 Table 5.2 Individual WheelCon-M item statistics ........................................................................ 96 Table 5.3 Mean scores for the study measures ........................................................................... 102 Table 6.1 A summary of the development and validation procedures used in creating the WheelCon-M............................................................................................................................... 109  xi  List of Figures Figure 3.1 WheelCon-M item analysis process ............................................................................ 46 Figure 4.1 Behavioral code categories .......................................................................................... 69 Figure 5.1 Bland-Altman plot of the mean versus the difference in baseline and follow-up WheelCon-M scores.................................................................................................................... 101  xii  Glossary Confidence: Confidence is a nonspecific term that refers to strength of belief but does not necessarily specify what the certainty is about.2 For the purpose of this thesis, however, confidence will be used interchangeably with self-efficacy. Constant comparative method: a method of analyzing qualitative data where the information gathered is open coded in emergent themes or codes. The data are constantly revisited after initial coding, until it is clear that no new themes are emerging.3 Construct validity: the degree to which a score can be interpreted as representing the intended underlying construct of the test or measure.6 Delphi survey: a technique used to reach consensus in the absence of an acceptable body of knowledge. It is an iterative process that consists of distributing a series of questionnaires, known as rounds.4 Manual wheelchair: a type of mobility device for personal transport that has a seating area positioned between two large wheels, with two smaller wheels at the front. A manual wheelchair can be self-propelled or pushed by another person. Mixed methods: a type of research in which elements of qualitative and quantitative research approaches (e.g., use of qualitative and quantitative viewpoints, data collection, analysis, inference techniques) are combined for the broad purposes of breadth and depth of understanding and corroboration.1 Response process: the relationship between the intended construct and the thought processes of participants or observers.6 xiii  Self-efficacy: one‟s capabilities to organize and execute the courses of action required to produce given attainments.2 Think aloud: a cognitive assessment process whereby participants are asked to think out loud as they simultaneously respond to the questionnaire items.5 Vendor: for the purpose of this study a vendor is a representative of the company selling and fitting the wheelchair. Wheelchair use: for the purpose of this thesis, wheelchair use will refer to the use of a manual wheelchair for any purpose, ranging from simply sitting to engaging in any chosen activity. Wheelchair mobility: for the purpose of this thesis, wheelchair mobility will refer to the movement of an individual from one place to another in their manual wheelchair either independently or with assistance.  xiv  Acknowledgements There are many people to thank who contributed to the successful completion of this research. To Bill, my supervisor, mentor, and friend, thank you. Amongst the premium academic guidance and opportunities that led to “mastery experience”, we shared the triumphs, disappointments, and lots of laughs. You have an instinctive ability to know when to push me to step up my game and when to pull back to let me find my way, all the while providing support, loyalty, and friendship. You have been an incredible supervisor. Thanks for caring so much. Lee, your enthusiasm for wheeled mobility research and contributing to evidence based practice inspired me to pursue my PhD. Thank you for keeping it real and bringing perspective to my pursuits, having faith in my abilities, reminding me of all that I have to offer, the trips to Vancouver, your wacky sense of humour, and of course your insightful academic advice. Janice, thank you for your keen insights and academic advice. Your timely, direct, clear feedback and identification of key issues facilitated my development as a researcher. I aspire to be as efficient as you! Thank you to Elmira Chan and Bita Imam for your assistance with this project. Thank you to my research assistants Anthony Bryson, Amira Tawashy, Mark Burley, and Haley Augustine for helping with data collection. Thank you to Kristine Vaughan for helping with EVERYTHING and being my rock for the last year – we both know you deserve a PhD too!! Over the past four years, I have had the good fortune of working with bright talented fellow graduate students. Christina, Marc, Jocelyn, Jill, Amira, Ben, Brodie, Dom, Jeremy, Debbie, Rick, and Ada - thanks for sharing this journey with me! A special thanks to Krista – I am so  xv  glad you chose Vancouver! You helped me to return to my balanced lifestyle! Thanks for the academic support, the „laugh till you cry‟ laughs, and the fun times! You‟re the Best! The Canadian Institutes of Health Research (CGA 86803), a William G. Fraser Rehabilitation Research Award, and a British Columbia Network for Aging Research Student Research Data Collection Award funded this study. Personal financial support was provided by the Canadian Institutes of Health Research via a Clinical Fellowship and Quality of Life Strategic Training Fellowship in Rehabilitation Research from the CIHR Musculoskeletal and Arthritis Institute, and the Michael Smith Foundation for Health Research. I would like to express my deepest gratitude to the participants of this study. Without your involvement, I could not have completed this research. Lastly, I dedicate this thesis to my Mom and Dad. Thank you so much for your ongoing support of my educational pursuits. I could not have done it without you.  xvi  1  Introduction  1.1  Impetus for this research  The impetus for this research came from my practice as an occupational therapist where I observed that some people who used manual wheelchairs for mobility during inpatient rehabilitation did not continue to perform those skills in which they had become proficient once they were discharged. These individuals often reported that they simply did not believe that they could perform the skills on their own and in different settings. A search of the wheelchair skills training literature identified confidence as a potential contributor to wheelchair mobility. Specifically, in a community-based manual wheelchair skills training study a wheelchair user commented “I feel that my confidence with a wheelchair has improved.”8 I was unable, however, to find an instrument that measured confidence with manual wheelchair use. Therefore, the overall purpose of this research was to develop and validate an instrument to measure confidence with manual wheelchair use. This introduction chapter will describe the rationale and importance for developing an instrument to measure confidence, or self-efficacy,a with wheelchair use, and provide a brief discussion regarding the development and validation of self-efficacy outcome measures. An overview of the four phases of this mixed methods research will also be provided. 1.2  Wheelchair use  1.2.1 Epidemiology of wheelchair use Population estimates suggest that the number of people who require a wheelchair for mobility is approximately 65 million worldwide.9 Flagg10 suggests that of the 3.86 million people who require wheelchairs in the United States, approximately 70% use manual wheelchairs. Human  a  As defined in the glossary, it is recognized that self-efficacy and confidence are not the same construct. For the purposes of this thesis, however, the two terms will be used interchangeably to reflect their use in the literature.  1  Resources Development Canada reported that, in 2000/01, approximately 264 000 Canadians required a wheelchair to remain mobile.11 Adults and older adults account for 90% of the Canadian wheelchair population. In fact, an estimated 4.6% of community-dwelling adults over the age of 64 indicated that they used wheelchairs;12 52% of adults aged 65 or older who live in health care institutions reported using wheelchairs as their primary means of mobility;11 and 40% of individuals 85 years of age or older used wheelchairs.13 Statistics Canada reported that, in 2001, adults aged 65 or older made up 12.7% of the population in Canada, a value that is projected to double by 2026.14 As Canada‟s population ages, the number of people with mobility-related disabilities and the need for wheelchairs will also likely increase. 1.2.2 Assistance required for manual wheelchair users Over half of Canadians who use wheelchairs for mobility require assistance getting around in their wheelchair.11 For those aged 65-84, 63% of females and 50% of males reported needing help to get around. As wheelchair users age, the percentage of individuals requiring assistance increases. Specifically, for those aged 85 and older, 77% of females and 73% of males reported needing help to get around. In addition, 94% of females and 87% of males require assistance with completing basic and instrumental activities of daily living.11 This need for assistance comes at a personal cost to the wheelchair user's independence and participation in life activities, important determinants of quality of life. There are also indirect costs to the individual‟s family members who play caregiver roles and direct financial costs to the health care system. Despite available wheeled mobility literature (to be described below), it remains unclear why so many wheelchair users require assistance.  2  1.2.3 Abandonment of wheelchairs Studies have reported on the abandonment of manual wheelchairs. Rates of abandonment have ranged from 31% for persons who have had a stroke15 to 37.8%16 and 50%17 for persons with various other disabilities. A study that assessed the impact on abandonment of a new intervention, the assistive device evaluation and prescription protocol, found that 25% of manual wheelchairs were abandoned in a group that did not receive the new intervention, in comparison to only 7.1% in a group who did receive the new intervention.18 Reported reasons for abandonment of manual wheelchairs included the size, weight, and other design features of the wheelchair,17, 19 change in user needs or priorities,15, 16, 18 non-acceptance of the device,18 lack of consumer involvement in prescription process,16, 17, 19 insufficient information and training in the assistive device,18 and use of alternate mobility aids.15 Hocking20 suggested that consideration of a person‟s self-efficacy in his or her ability to operate and look after a piece of equipment during the assistive device prescription process may reduce rates of abandonment. Recently, a taxonomy for assistive technology device outcomes21 and a framework for modeling the outcomes of assistive devices22 were developed. This taxonomy and framework can be used to identify and measure personal and environmental factors related to assistive device selection, such as wheelchairs, and used to intervene in situations where there is a poor match between the person and the device, thereby reducing the risk of assistive device abandonment. 1.2.4 Assessment of wheelchair mobility There are nine outcome measures of manual wheelchair mobility for adults reported in the literature to date.23-37 Although these measures differ in terms of the target population, number of items, response scale, and psychometric properties, they all measure wheelchair skills / mobility. Table 1.1 outlines selected properties of the most recent versions of these measures. Two  3  systematic reviews have been conducted on wheelchair skills tests. The first reported that the Wheelchair Skills Test (version 1.0) is the only test that has been adequately tested on both reliability and validity.38 The second reported that the Wheelchair Skills Test, version 2.4 and the Wheelchair Circuit scored best on the authors‟ checklist for statistical review of papers, while the Obstacle Course Assessment of Wheelchair User Performance test was the most relevant for the daily needs of a wheelchair user.39  4  Table 1.1 Selected properties of wheelchair mobility outcome measures Author  Kilkens23,  Instrument (Type)  Wheelchair Circuit  24  Construct Measured  Wheelchair skills  Population  SCI specific  (Objective)  Routhier 25, 26  Obstacle Course Assessment of Wheelchair User Performance (OCAWUP)  Wheelchair skills  All wheelchair users  Items (Time) 8 (each task duration described, but not total test duration)  10 (NR)  Cost Costly, requiring treadmill, wheelchairs, and heart rate and oxygen measuring instruments  Response Scale  Reliability  Validity  2 (0-1) and 3 point (0, 0.5, 1)  For task feasibility: ICC=0.98 (intrarater) ICC=0.97 (interrater)  FIM mobility and wheelchair ability r=0.52  SRM ranged from 0.6 to 0.9.  Time, DE, GSE  Time, 4 point (0-3)  For time: ICC range, 0.74-0.99 (testretest); ≥0.98 (interrater) For DE: κ range, 0.09-1.00 (testretest); 0.29-1.00 (interrater)  GSE and FIM partial score rs=0.84, P≤.05)  NR  Free  Perceived user function related to wheelchair use  7 point scale (6=completely agree, 1=completely disagree, =0 does not apply)  Test-retest ICC=0.86  98.5% of consumer goals captured in the FEW items  NR  Free  Time, distance reached, distance pushed  Time, distance  Test-retest r=0.99; interrater ICC=0.99*  NR  NR  Obstacles found in every day environment  Procedure  Ability, performance time, physical strain  (Objective)  Mills27, 28  29  May  Functioning Everyday with a Wheelchair (FEW) † (Subjective) 4 functional tasks (Objective)  Wheelchair mobility and self-care  All wheelchair users  10 (NR)  Wheelchair skills  All manual wheelchair users  4 (45 minutes)  Responsiveness  5  Author  Harvey30  Instrument (Type) Test for Assessing Mobility in WheelchairDependent Paraplegics  Construct Measured  Wheelchair skills  Population  Manual wheelchair users with paraplegia  Items (Time)  6 (15 minutes)  Cost  Free  Procedure Level of assistance required, time, complexity of the task  Response Scale  Reliability  6 point scale (6=best score; 1=worst score); each item score separately  Interrater weighted κ ranged from 0.820.96 for each item  Validity  NR  Responsiveness  NR  (Objective) Wheelchair  Middleton 31  Additional Mobility and Locomotor Items (5AML) (Objective)  Wheelchair skills  Manual wheelchair users with SCI  5 (NR)  Free  Level of assistance required  7 point scale (1=total dependence; 7=complete independence)  Cronbach‟s  α = 0.89  propulsion items discriminat ed between people with tetra and paraplegia  Bed mobility item highly responsive over time for tetraplegic group; vertical transfer item responsive over time for both tetra and paraplegic groups  6  Author  Mortenson 32  Instrument (Type)  Wheelchair Outcome Measure (WhOM)  Construct Measured  Client identified participation issues  Population  All manual wheelchair users  Items (Time)  Varies (NR)  (Subjective)  Stanley33  Wheelchair Users Functional Assessment (WUFA) (Objective)  Mobility and self-care  All manual wheelchair users  13 (1.0-1.5 hours)  Cost  Procedure  WhOM available by request from authors for free  Satisfaction with performance and importance of outcome  Free  Level of independence, time, use of assistive device  Response Scale  Reliability  11 point scale (0-10)  Intrarater ICC=0.93; Interrater ICC=0.91  7 point scale (1-7)  Intrarater ICC=0.78; Interrater ICC=0.96; Cronbach‟ s α = 0.96  Validity QUEST (total score) r=0.58; QUEST (assistive device scale) r=0.66; LIFE-H (entering and exiting home) r=0.33; LIFE-H (moving around outside home) r=0.35 Content validity (6 rehab experts and wheelchair users determined content)  Responsiveness  NR  NR  7  Author  Instrument (Type)  Wheelchair Skills Test Kirby34-37  † (Objective)  Construct Measured  Wheelchair skills  Population  All manual wheelchair users  Items (Time)  32 (version 4.1) (27±9.3 minutes, version 2.4)  Cost Standardized obstacle course may be used, but not necessary; all forms downloadable off of website, therefore free  Procedure  Skill and safety  Response Scale  Pass/fail  Reliability  Validity  Responsiveness  Test-retest ICC=0.90; Intrarater ICC=0.96; Interrater ICC=0.97 (version 2.4)  Age wheelchair users r=0.27; therapist global rating r=0.40; admission FIM r=0.84  Mean score increase in intervention group after wheelchair skills training: WST 2.4 was 25%; WST 4.1 was 29.5%  Abbreviations: SRM=standardized response mean; FIM = functional independence measure; NR = not reported; SCI = spinal cord injury; ICC = intraclass correlation coefficient; GSE = global score of ease; DE = degree of ease. Objective = performance based assessment; Subjective = self-report based assessment. *Excluded 1 item. † Used in published studies by developers and non-developers.  8  1.2.5 Factors that impact wheelchair use There is a growing body of literature that explores factors that impact wheelchair use. Using the International Classification of Functioning, Disability, and Health (ICF)40as a conceptual framework, a selection of wheeled mobility literature is presented. The ICF is a comprehensive and widely accepted framework based on an integrative model of functioning. It is comprised of two parts each with two components. Part one describes functioning and disability. It consists of body functions and structures, as well as activities and participation. Part two describes contextual factors and consists of environmental and personal factors. Body functions refer to the physiological functions of body systems and body structures are anatomical parts of the body such as organs and limbs.40 Under this component of the ICF, most wheeled mobility studies have focused on the physical characteristics of the wheelchair user. Strength,41-43 range of motion,44, 45 pain,46-48 weight,49 and vision50 represent aspects of the person that have been investigated related to manual wheelchair use. According to the ICF, activity is the execution of a task or action by an individual, whereas participation is involvement in life situations.40 Activities of great importance to wheelchair users that contribute to participation are the performance of wheelchair skills. Training in this area has become increasingly recognized as essential.9 Learning these skills require motivation, effort, and perseverance on the part of the wheelchair user. The assessment and training of wheelchair skills is an important aspect of wheelchair provision that is often overlooked and can make the difference between an individual participating or not participating in society. The Wheelchair Skills Training Program (WSTP) Version 4.1 is a comprehensive program that uses the Wheelchair Skills Test skill set and training methodology based on rehabilitation, wheelchair, and motor skills literature.36 Evidence to date has demonstrated the safety and efficacy of this 9  program in the training of wheelchair users admitted for initial rehabilitation,51 wheelchair users in the community,8, 37 individuals who have experienced a stroke,52 caregivers,53 and occupational therapy students.54 Participation may be limited among wheelchair users. For example, Rudman and colleagues found that participation in socialization and leisure were drastically reduced,55 and Barker et al. found that participation in community activities was limited among wheelchair users.56 Other studies that have used standardized measures of participation have found that wheelchair use has significantly disrupted participation in home maintenance,57 recreation and physical activities,57 employment,58, 59 sexual relations,57 family role,58, 59 and education.58, 59 A recent study used the Wheelchair Outcome Measure to investigate satisfaction with participation among a group of manual wheelchair users with spinal cord injury.60 In this research, with participation organized according to the ICF, it was found that satisfaction ranged from a low of 2/10 to a high of 10/10 for indoor and outdoor participation activities. Interestingly, indoor participation activities categorized in the mobility ICF component were on average rated the lowest in satisfaction (6.1/10). Contrary to the results of the above participation studies, a recent study involving individuals with spinal cord injury measured participation with three items from the Craig Handicap Assessment and Reporting Technique, including daily hours out of bed, times leaving home per week, and number of nights spent away from home during the previous year (excluding time spent in the hospital).61 Results from this study found that individuals who were independent in their wheelchair use reported substantially better outcomes in the three measured areas than non-wheelchair users and those dependent on others for wheelchair use. Further, research has demonstrated that social participation, measured using the Return to Normal Living Index, improved after wheelchair acquisition.62 10  The ICF also differentiates between capacity and performance. Capacity is associated with activity and describes what a person can do. Performance is associated with participation and describes what a person normally does in their natural environment.40 For example, the Wheelchair Circuit has been used to measure capacity in a study describing the relationship between manual wheelchair skills and participation,63 as well as in a study assessing return to work after spinal cord injury.64 On the other hand, performance of wheelchair users was measured using self-reported wheelchair use in a study investigating patterns of wheelchair use in terms of locations of use.65 Environmental factors are considered to be external influences and make up the physical, social, and attitudinal environments in which people live and conduct their lives.40 The wheelchair itself can be considered part of an individual‟s physical environment. Routhier et al.66 outlined important ergonomic factors for maximizing a wheelchair user‟s performance, such as seat height, width, and depth. Other studies have investigated differences in wheelchair users‟ performance when using different types of wheelchairs, such as ultra-light versus standard.67, 68 Very specific components of wheelchairs have also been studied, including the rear anti-tip device,69, 70 wheel type,71 and camber.72 In terms of the natural and built environment, studies have demonstrated that environmental barriers restricted participation in activities outside of the home.55, 73-75 The impact of specific environmental features on wheelchair use has also been studied, such as sidewalk surfaces,76 and rolling resistance.77 Personal factors are considered to be internal influences and are the particular background of an individual‟s life and living. They comprise features of the individual that are not part of a health condition or health states. Personal factors may include sex, race, age, coping styles, past and current experience, overall behavior pattern and character style and individual psychological 11  assets. 40 Sociodemographic factors are typically included in investigative wheeled mobility studies and have also been included in most predictive models, which will be described below. Wheeler and colleagues studied personal styles and ways of psychosocial coping of wheelchair users.78 Generally, literature regarding the psychological attributes of wheelchair users is lacking. Wheelchair confidence, however, has been recognized in the wheeled mobility literature. It was identified as an internal contextual factor that might be affected by an intervention designed to improve the wheelchair provision process.79 The measure used in Hoenig et al‟s study79 asked about confidence in using one‟s wheelchair: at home, out of doors, in public places such as the grocery store or mall, and in unfamiliar places. A 1-5 response scale was used (1=not confident at all; 5=completely confident). Information regarding the development and psychometric properties of the measure was not provided. In this study, there were no differences between the intervention and usual care groups with respect to confidence. Beyond the limitations of the study identified by the authors, including small sample size and high attrition rate, it is also possible that differences between groups were not found due to the fact that there were only four items in the study specific measure and they were not situation-specific. 1.2.6 Predictors of wheelchair use Two groups of researchers have developed predictive models to explain the variance in wheelchair mobility. Mortenson et al.80 found that wheelchair skills training, having a power wheelchair, functional independence, and more social visits were significant predictors of wheelchair mobility in long term care residents. Other factors in their model included wheelchair issues, wheelchair ownership, depression, sex, smoking status, age, vision, cognitive status, and health status. Their model accounted for 48% of the variance in wheelchair mobility. In another study of wheelchair mobility in long term care residents, Bourbonniere et al.81 found that the  12  need for seating intervention was a significant predictor of mobility with other factors including type of facility, sex, previous wheelchair intervention (prior six months), number of comorbidities, and age. Their model accounted for 19% of the variance. of participation of wheelchair users. Two groups of researchers have also developed predictive models to explain the variance in participation of wheelchair users. In a study of manual wheelchair skill performance and participation of persons with spinal cord injury, Kilkens et al.63 found that wheelchair skill performance (ability, performance time, and physical strain), age, sex, education level, lesion level, and motor completeness accounted for 34% of the variance in the participation of these manual wheelchair users. Age and wheelchair performance ability score were the only significant predictors. Mortenson et al.80 also studied the participation of wheelchair users and found that their model in a sample of long term care residents accounted for 33% of the variance. Significant predictors were depressive symptoms and perceived physical barriers, while the other factors included wheelchair skills, hours spent in a wheelchair per day, length of wheelchair use, wheelchair issues, functional independence, cognitive status, policy, and social environmental barriers. Interestingly, the variables in these predictive models seldom accounted for more than a modest amount of variance in wheelchair use. 1.3  Self-efficacy  1.3.1 Self-efficacy is the core of Social Cognitive Theory In Social Cognitive Theory (SCT), human functioning is viewed as the product of a dynamic interplay of personal, behavioral, and environmental influences. Bandura coined this concept reciprocal determinism.2 These determinants are not necessarily of equal strength, and the relative influence of each will vary for each individual for different circumstances and activities. 13  It is through human agency that people are contributors to what happens to them in this model. According to Bandura, agency refers to acts done intentionally.2 At the core of SCT is selfefficacy. 1.3.2 Self-efficacy defined Self-efficacy refers to one‟s judgments of his/her capabilities to organize and execute the courses of action required to produce given attainments.2 Self-efficacy is not a personality characteristic; it may vary depending on the particular situation and the behaviors necessary to respond to that situation. It influences the courses of action people choose to pursue, how much effort they put forth in given endeavors, how long they will persevere in the face of obstacles and failures, their resilience to adversity, whether their thought patterns are self-hindering or self-aiding, how much stress and depression they experience in coping with taxing environmental demands, and the level of accomplishments they realize. The stronger an individual‟s self-efficacy, the more vigorous and persistent his or her efforts will be. In contrast, individuals tend to avoid engaging in activities for which their self-efficacy is low.2 Bandura believed that, among the different mechanisms of personal agency, none is more central or pervasive than people‟s beliefs in their capabilities to exercise control over their own motivation and behavior, and over environmental demands. For wheelchair users, avoidance of activities in which their confidence is low may result in significant disruptions to their overall participation and quality of life. 1.3.3 Sources of self-efficacy There are four sources of self-efficacy: enactive mastery, vicarious experience, verbal persuasion, and physiologic and affective states.2 Enactive mastery refers to personal experiences and is considered to be the most dependable source of self-efficacy. Vicarious experiences occur when one observes others performing a potentially threatening activity successfully and becomes 14  persuaded of his or her ability to perform the activity. Verbal persuasion is used to influence another individual that he or she possesses certain capabilities. This source of self-efficacy is not likely to be effective over a sustained length of time unless successful personal experiences reinforce the persuasion. The fourth source of self-efficacy is the physiologic and affective states from which people partially judge their capability, strength, and vulnerability to dysfunction. Physiologic and affective states can influence both efficacy expectations in threatening situations and the behaviors necessary to respond in such situations. According to Bandura, high arousal usually debilitates performance. 1.3.4 Why is it important to measure self-efficacy with wheelchair use? It is important to measure self-efficacy with wheelchair use for four main reasons that will be described below: a) Self-efficacy has been identified in the wheeled mobility and assistive devices literature as a construct to consider. Although confidence with wheelchair use has not been directly examined in wheelchair skills training studies, it has repeatedly emerged in general comment sections. “I have more confidence” was a comment provided by a participant when discussing the impact of manual wheelchair skills training in a randomized controlled trial comparing the impact of wheelchair skills training using new and conventional rear anti-tip devices.70 In a community-based manual wheelchair skills training study,8 a wheelchair user commented “I feel that my confidence with a wheelchair has improved.” In a recent case study report,82 an incident where a wheelchair user‟s wheelchair tipped over and the individual was thrown out of the chair while climbing a curb was described. After the accident, when discussing his pre-accident wheelchair skills, the individual reported that he was able to perform a wheelie, but that he did not feel confident when doing so. Related to abandonment of assistive 15  technology, as described above, consideration of a person‟s self-efficacy in his or her ability to operate and look after a piece of equipment during the assistive device prescription process may reduce rates of abandonment.20 Finally, wheelchair confidence was recognized as an important construct to measure in a study evaluating a new wheelchair provision process intervention.79 b) Wheelchair users have demographic and clinical characteristics associated with low confidence in other areas. Over 90% of Canadian wheelchair users are adults and older adults11 and being older has been associated with low confidence in behaviors such as exercise,83 driving,84 and balance.85-87 There are more female than male wheelchair users11 and females have demonstrated lower confidence in exercise,83 driving,84 and balance.85-88 As well, depression and anxiety are associated with wheelchair use,89, 90 both of which negatively influence self-efficacy.2 c) Predictive models explaining the variance in wheelchair mobility or participation by wheelchair users seldom account for more than a modest amount of variance in wheelchair use. Given Bandura‟s premise that self-efficacy is the most important predictor of future behavior, despite skill level,2 it is plausible that self-efficacy may explain additional variance in wheelchair use. It is especially important to continue to identify factors that explain wheelchair use because, as described above, our population is aging and therefore the number of wheelchair users is on the rise, a large number of wheelchair users currently require assistance with their mobility and daily activities, and many wheelchair users abandon their wheelchairs. d) Self-efficacy has been shown to be modifiable in rehabilitation. Confidence-based interventions are common in the behavior change literature. In rehabilitation, the application of Bandura‟s sources of self-efficacy to enhance interventions have been shown to produce better treatment outcomes than standard interventions in the following areas: chronic disease, such as  16  arthritis,91-93 cardiac disease,94, 95 end-stage renal disease,96 nutrition,97 exercise,98, 99 anxiety,100 and cancer.101, 102 1.4  Development and validation of a self-efficacy measure  1.4.1 In general The development of an outcome measure can be guided by the process of validation. By definition, validity refers to “the degree to which evidence and theory support the interpretations of test scores entailed by the proposed uses of tests.”6 Validity has traditionally been separated into three distinct types: content, criterion, and construct. Emerging paradigms, however, have replaced these prior distinctions with the unitary concept “construct validity”, referred to as the degree to which a score can be interpreted as representing the intended underlying construct.7 Messick outlined five sources of evidence to support construct validity.6 First, evidence based on test content can be obtained from an analysis of the relationship between a test‟s content and the construct it is intended to measure. Test content refers to the themes, wording, and format of the items, tasks, or questions on a test, as well as the guidelines for procedures regarding administration and scoring. Second, the response processes of test takers can provide evidence regarding the relationship between the intended construct and the thought processes of participants or observers. In fact, questioning test takers about their performance strategies or responses to particular items can yield evidence that enriches the definition of the construct. Third, analysis of the internal structure of a test can indicate the degree to which the relationships among test items and test components conform to the construct on which the proposed test score interpretations are based. Acceptable internal consistency and factor structure are commonly evaluated. Fourth, analysis of the relationship of test scores to other variables external to the test provides an important source of validity evidence. External variables may include measures of 17  some criteria that the test is expected to predict as well as relationships to other tests hypothesized to measure the same constructs, and tests measuring related or different constructs. Fifth, evaluating the intended or unintended consequences of an assessment may inform validity decisions.7 Evidence of consequences, or legitimate test use, is the most controversial category of validity evidence and the least reported source of evidence.6 According to Messick, evidence should be sought from all of these categories to support the construct validity of inferences made from instrument scores. 6 1.4.2 Development of a self-efficacy measure The measurement of self-efficacy requires a domain specific assessment tool. Bandura has developed guidelines for constructing self-efficacy scales.105 Important guiding principles include: developing the scale based on a good conceptual analysis of the relevant domain of functioning; including task demands that represent gradations of challenges or impediments to successful performance; phrasing items in terms of „can do‟ rather than „will do‟, as can is a judgment of capability and will is a statement of intention; instructing respondents to rate their confidence „as of now‟; and using a 100-point scale, ranging in 10-unit intervals from 0 (cannot do) through to intermediate degrees of assurance 50 (moderately certain can do) to complete assurance 100 (highly certain can do). In a self-efficacy scale, individuals are asked to rate the strength of their belief in their ability to execute the requisite activities. A five-step systematic approach for the development and validation of self-efficacy instruments has also been developed by Frei and colleagues.106 This approach was based on a systematic review of self-efficacy instruments for people with chronic diseases that identified methodological limitations in the development and validation process of the majority of the instruments. The proposed five-step approach involved: 18  (1) definition of the aim of the instrument – evaluative, discriminative, predictive, planning; (2) definition of a priori considerations – definition of domains, administration format, maximum time required for completion, amenability to statistical analysis; (3) identification of items – common sources (patients, literature search, experts, adaptation of existing instruments, patient‟s relatives), properties of items are dependent upon the aim of the instrument; (4) selection of items – data driven approach, patient approach, expert approach; (5) validation of the instrument- assessment of measurement properties should be congruent with the aim of the instrument, including test-retest reliability, internal consistency, validity, and responsiveness. 1.4.3 Self-efficacy and assessment of mobility Self-efficacy assessments have been developed for various aspects of mobility, such as the Ambulatory Self-Confidence Questionnaire (ASCQ),107 the Activities-specific Balance Confidence Scale (ABC),87 and the Driving Comfort Scale (DCS).84 Interestingly, none of these scales were explicit in following Bandura‟s recommendation to measure confidence „as of now‟ and phrasing the items in terms of „can do‟. Further, only the ABC and the DCS used the 0-100 scale. With respect to Frei et al.‟s five-step approach, it was apparent that the developers of the ABC defined the aim and a priori considerations, but these steps were not apparent for the ASCQ and the DCS. Developers of these three scales all used the end users for item identification, item selection, or both, which was highlighted as important by Frei et al.106 Using Messick‟s five  19  sources of evidence to support construct validity,6 the obvious source of validity missing from all three scales was the assessment of response processes. A validated tool to measure confidence with manual wheelchair use does not exist. As described in section 1.2.5, one wheeled mobility study measured wheelchair confidence by asking about confidence in using one‟s wheelchair: at home, out of doors, in public places such as the grocery store or mall, and in unfamiliar places.79 The development and psychometric properties of this measure were not reported. The fact that it is the only measure developed and available to date supports the need for the development of an assessment to measure confidence with wheelchair use. 1.5  An overview of the four phases of this research  The empirical findings from this research are presented in four chapters. A brief synopsis of the rationale, purpose, research questions, and contributions of each chapter is provided below. 1.5.1 Chapter 2 –Situations that challenge confidence with wheelchair use: A qualitative exploration Rationale: As described by Bandura, the construction of sound self-efficacy scales relies on a good conceptual analysis of the relevant domain of functioning.2 Because confidence with manual wheelchair use is a largely unexplored area, the topic lends itself to qualitative inquiry. Qualitative interviews were chosen to gain insight into the inner experiences of wheelchair users related to confidence in order to generate items for the WheelCon-M. Purpose: To describe situations that challenge confidence with manual wheelchair use from the perspectives of wheelchair users and health care professionals. Research Question: What situations challenge confidence with manual wheelchair use? 20  Contribution: Results of this research provided a description of a range of confidence challenging situations for wheelchair users. Specifically, it identified six main areas of wheelchair use in which confidence is challenged. This information provided the basis from which the items for the WheelCon-M were developed. 1.5.2 Chapter 3 – Development and content validation of the Wheelchair Use Confidence Scale: a mixed-methods study Rationale: It is important to assess the content of and select items for newly developed instruments.5,6 Given the lack of literature regarding confidence with wheelchair use, it was especially important to assess the test content of the WheelCon-M. This phase of the WheelConM development represents the first source of evidence to support construct validity according to Messick‟s recommendations.6 Purpose: To select items and assess the test content of the WheelCon-M. Hypothesis: The WheelCon-M will have content validity. Contribution: Assessment of the test content of the WheelCon-M and item selection provided necessary foundations for subsequent development and validation of the scale. 1.5.3 Chapter 4 – Item refinement of the WheelCon-M: A think aloud approach Rationale: Refining items on a newly developed instrument is an important step prior to conducting further psychometric testing. Specifically, it is important to assess if each item is understood as intended by the developers.6 This phase of the WheelCon-M development represents the second source of evidence to support construct validity according to Messick‟s recommendations.6 Purpose: To refine items on the WheelCon-M to ensure each item is interpreted as intended. 21  Hypothesis: WheelCon-M items will be interpreted as intended. Contribution: The refinement of WheelCon-M items to ensure each is interpreted as intended provided the foundation for further validity testing. 1.5.4 Chapter 5 – Reliability and validity of a measure for the assessment of confidence with manual wheelchair use (WheelCon-M) Rationale: The assessment of the validity of self-efficacy instruments has been recommended by Bandura2 and Frei et al.106 This phase of the WheelCon-M development represents the third and fourth sources of evidence to support construct validity according to Messick‟s recommendations.6 Purpose: To examine the psychometric properties of the WheelCon-M (internal consistency, reliability, and relations to other variables). Hypotheses: The WheelCon-M will: 1. Have high internal consistency (Cronbach‟s α ≥ 0.80). 2. Have good test-retest reliability (intraclass correlation coefficient ≥ 0.80). 3. Be correlated with the following variables in ranges from 0.30-0.50:wheelchair skill, functional basic activities of daily living, perceived social support, perceived match between the wheelchair users needs and their wheelchair, frequency and independence with which the wheelchair user travels along a continuum of environments, and anxiety and depression..  22  Contribution: Results of this research provided support for the reliability and validity of the WheelCon-M in its use with adult, community-dwelling, manual wheelchair users.  23  2 Situations that Challenge Confidence with Wheelchair Use: A Qualitative Exploration b 2.1  Introduction  Statistics indicate that over half of Canadians using wheelchairs require assistance with their wheelchair mobility.11 This need for help has the potential to significantly limit an individual‟s participation in their chosen activities and their quality of life. Although it is unclear why so many people who use a wheelchair require assistance, one factor that remains largely unexplored is confidence with using their wheelchair. Cues that suggest this area is worthy of exploration come from the wheelchair skills training studies wherein participants have commented on the impact of the training, including statements such as, “I have more confidence.”70 and “I feel that my confidence with a wheelchair has improved.”8 As a construct, wheelchair confidence was first introduced by Hoenig et al.79 in a quantitative study investigating the effect of different methods of dispensing wheelchairs. To our knowledge, this is the only published study designed to investigate wheelchair confidence. However, in Hoenig et al‟s study, wheelchair confidence was included as a secondary outcome and little elaboration of the construct was provided. Because wheelchair confidence potentially influences the independence and quality of life of people who use manual wheelchairs, it merits further investigation. Self-efficacy, or confidence, refers to one‟s belief in his/her ability to perform a given task.2 According to Bandura, confidence is a stronger determinant of behavior than actual skills or abilities. According to this theory, confidence may have a large impact on people learning to use a wheelchair, or even experienced wheelchair users. Low confidence with wheelchair use may b  A version of this chapter will be submitted for publication. Rushton, P.W., Miller, W.C., Kirby, R.L.; & Eng, J.J. Title: Situations that Challenge Confidence with Wheelchair Use: A Qualitative Exploration.  24  lead to avoidance of activities that an individual is actually capable of performing, while high confidence may result in more effort put forth, the setting of higher goals, and perseverance through obstacles.2 Whether an individual has low or high confidence with specific wheelchairrelated tasks may affect their performance of chosen daily activities and participation in life in general. Further, confidence perceptions are task-specific. This means that an individual can have high confidence for one wheelchair task, but low confidence for another. The purpose of this research was to explore if confidence is a common theme for wheelchair users and others who work with them and, if so, to identify confidence challenging situations. 2.2  Research philosophical assumptions and theoretical framework  This research reported the experiences, meanings, and reality of the participants and explored how Bandura‟s Social Cognitive Theory (SCT)2 might better elucidate confidence with manual wheelchair use. Central to SCT is the notion that people can exercise control over what they do. From this theoretical perspective, human functioning is viewed as the product of a bidirectional, dynamic interplay of personal (cognition, affect, and biologic events), behavioral, and environmental influences (Figure 2.1).2 In essence, how people interpret the results of their own behavior informs and alters their environments and the personal factors they possess which, in turn, inform and alter subsequent behavior. The interaction among these three determinants is referred to as reciprocal determinism.2 These determinants are not necessarily of equal strength, and the relative influence of each will vary for each individual for different circumstances and activities. Self-efficacy occupies a pivotal role in SCT because it acts upon the various determinants in the model of reciprocal determinism to govern human thought, motivation, and action. Different  25  people with similar skills, or the same person under different circumstances, may perform poorly, adequately, or extraordinarily, depending on fluctuations in their beliefs of personal efficacy. Self-doubt can easily override high skill level.2 2.3  Methods  2.3.1 Design This research used a qualitative approach to address the objective. Specifically, semi-structured interviews were conducted. 2.3.2 Ethics The research was approved by the University of British Columbia (UBC) and Capital Health behavioral research ethics boards. 2.3.3 Participants Purposive sampling was used to identify a heterogenous group of experts that consisted of wheelchair users and health care professionals from eastern and western Canada. Wheelchair users were eligible to participate if they were at least 19 years of age, lived in the community, used a manual wheelchair as their primary means of mobility, and had at least 6 months of experience using a manual wheelchair. They were recruited through a number of sources, including a research lab volunteer database, clinician contacts and various organizations, such as the Canadian Paraplegic Association, that could recommend individuals who could speak about wheelchair use. Health care professionals were eligible to participate if they were an occupational therapist, physical therapist, or physiatrist who had at least three years of experience working with individuals who use manual wheelchairs. The health care professionals were targeted on the basis of their reputation, as determined by factors such as clinical expertise,  26  research activities and publication record in the area of wheelchair use. The inability to speak and write in English was the only exclusion criteria for both groups. 2.3.4 Data collection and analysis Wheelchair user participant demographics (Appendix A) and health care professional demographics (Appendix B) were collected. A semi-structured interview guide with open-ended questions and probes designed to explore situations where confidence is challenged with wheelchair use was developed for this research (Appendix C). This guide was modified as interviews progressed in order to query emerging themes and discontinue questions that had been thoroughly addressed. An example of an interview question posed to wheelchair users was “Can you describe situations where you tend to lack confidence when using your manual wheelchair?” Similarly, health care professionals were asked “Can you describe situations where you either observed your clients lacking in confidence when using their manual wheelchair or situations in which your clients discussed lacking confidence with wheelchair use?” The interviews were conducted either face-to-face or by telephone. Each interview lasted approximately 60 minutes and each participant was interviewed only once. The interviews were digitally recorded and transcribed verbatim. The transcripts were analyzed thematically, as outlined by Braun and Clarke.108 As each interview was conducted and transcribed, the transcripts were read and re-read, noting down initial ideas. Preliminary codes were generated across the data set. As the interviews continued, the codes were developed into potential themes that were reviewed as the interviews progressed to ensure that they were appropriate at the level of individual data extracts and across the data set. The findings and generation of themes were discussed with the second author in order to allow for additional input and reflection. An iterative process of theme review continued until the 27  interviews were complete. Emerging themes in earlier interviews were substantiated by participants in later interviews. As part of the ongoing data collection and analysis, specific participants and challenges related to confidence with wheelchair use were targeted to facilitate refinement of the interview questions and to gather pertinent data. Memos created after the completion of most interviews throughout data collection were a means of facilitating analytic thinking and stimulating insights about the data which, in turn, served to enhance the data analysis process. The qualitative data analysis program NVivo8 was used to code the data and identify themes. Recruitment continued to the point of theoretical saturation (i.e., no new ideas emerged).109 The quality of the methods used in this research was ensured by using strategies for validity.110 Triangulation was achieved by using three sources of data: the information gathered from wheelchair users, information gathered from health care professionals, and the literature. Reflexivity was encouraged through the use of constant comparison for ongoing data collection and analysis. Fair dealing (ensuring the research explicitly incorporates a wide range of different perspectives so that the viewpoint of one group is never presented as if it represents the sole truth) was accomplished by interviewing a variety of health care professionals from different disciplines as well as a broad representation of wheelchair users (e.g., different diagnoses, different lengths of time in wheelchair). 2.4  Findings  2.4.1 Participants All 13 wheelchair users and 16 health care professionals who were contacted agreed to participate. The participant demographics are presented in Table 2.1. The wheelchair users ranged from 20 to 89 years old, there were seven men and six women, and their length of time 28  using a manual wheelchair ranged from six months to 38 years. There were a variety of diagnoses, with spinal cord injury being the most prevalent (4/13). Other diagnoses included: spina bifida, multiple sclerosis, above knee amputation, below knee amputation, osteoarthritis, arthrogryposis, and cerebral vascular accident. The health care professionals ranged in age from 24 to 58, were mostly female (14/16), and ranged in years of practice from three to 30. There were 10 occupational therapists, three physical therapists, one physiatrist, one occupational therapy assistant, and one activity (recreation) worker.  29  Table 2.1. Participants’ demographic data  Age (years) Mean (standard deviation) Range Female (%) Wheelchair Experience (years) Mean (standard deviation) Range Years Practicing Mean (standard deviation) Range ≥ Bachelors education (%) Diagnosis (%) Spinal Cord Injury Lower Limb Amputation Cerebral Vascular Accident Osteoporosis Spina Bifida Multiple Sclerosis Arthrogryposis Profession (%) Activity (recreation) Worker Occupational Therapist Occupational Therapy Assistant Physiotherapist Physician  Wheelchair Users (n=13)  Health Care Professionals (n=16)  48.7 (18.7) 20-89 46.2  39.9 (8.3) 24-58 87.5  13.4 (11.9) 0.5-38  53.8  14.1 (7.8) 3-30 93.8  30.7 15.4 7.7 7.7 15.4 15.4 7.7 6.3 62.5 6.3 18.8 6.3  2.4.2 Key themes and discussion Six diverse themes relating to confidence-challenging situations with wheelchair use evolved through discussions with wheelchair users and health care professionals. “Everything that most people wouldn’t even look twice at” related to negotiating the indoor and outdoor physical environment in a manual wheelchair. “Too high for me to reach” illustrated confidencechallenging activities performed in a manual wheelchair. “It isn’t a problem if I know what I need” related to the importance of knowledge and problem solving ability related to wheelchair 30  use. “Being my own advocate” highlighted the significance of advocating for changes to one‟s wheelchair, home, school or work, and community environments. “Looking like a struggling invalid” related to how appearing competent and able in a wheelchair is a critical issue. “That kind of shakes your confidence” discussed the value of managing anxiety and stress. Pseudonyms were used to conceal the identity of the participants. Much of the discussion during the interviews focused on confidence-challenging situations within the themes “Everything that most people wouldn’t even look twice at” and “Too high for me to reach”. However, many participants expressed that confidence in the remaining themes was sometimes more important to wheelchair use. To express this point, Matt, a 56-year-old with paraplegia who had been using a wheelchair for 38 years, talked about how confidence in one‟s skills to negotiate the physical environment was the first step in community participation, but “… if you want to become an efficient user of a wheelchair, a person living in a wheelchair, using a wheelchair, living successfully in society…there‟s a softer skill set there that‟s where you get into kind of the human relations side of things, but in some ways they‟re more important.” This quote emphasized the importance of the themes that were based less on physical ability. 2.4.2.1 Everything that most people wouldn’t even look twice at All wheelchair users and health care professionals indicated that indoor and outdoor physical barriers challenged an individual‟s confidence. When asked about aspects of the physical environment that challenged his confidence, Jim, a 39-year-old participant with quadriplegia responded, “... everything that most people wouldn‟t even look twice at...”. He expanded on this statement to describe how seemingly insignificant aspects of the environment such as doors, carpets, ridges in the carpet, ridges in the floor, and grades in sidewalks and roads challenged his 31  confidence. Jim reflected the viewpoint of the participants in this research with respect to the difficulty in negotiating the physical environment in a manual wheelchair. Al, a 62-year-old wheelchair user with bilateral lower limb amputations, described a challenging indoor situation when he said, “Well as I say, trying to get from one room to the other I get jammed up somehow, you know, I only have about maybe an inch or two to spare on each side… when I try to get through in a hurry that‟s when, that‟s when they‟ll [thresholds] come up and bite you”. Vanessa, an occupational therapist talked about a situation involving the challenges of crossing a street when she described the long-term care residents with whom she worked, “…for many of the people [residents], they were afraid to go across the road because they didn‟t feel confident that they would be able to manage or keep their chair under control to protect themselves from going into traffic and as well they were afraid of not being able to be seen.” It was often not a single physical barrier that challenged confidence, but a series of physical barriers. For example, Cindy, an occupational therapist working at a rehabilitation centre said, “… you‟ve got a steep grassy knoll and then an uneven path and then some gravel and then a ramp and navigating all of that to get in the house… a lot of people end up just stuck in their house.” It may be that the degree of effort expenditure required to negotiate a series of barriers, as opposed to individual barriers, lowers confidence. This suggestion is in keeping with SCT which proposes that success achieved through great effort can lower one‟s confidence to muster the same level of effort again.2 In general, more confidence was required when overcoming outdoor compared to indoor environmental barriers. Cindy described the lack of control in the community environment as being an important factor. She discussed how the home environment can be set up according to a  32  person‟s needs and how once a wheelchair user has become confident in negotiating a specific aspect of their home, such as a threshold or ramp, they know they can do it again because it‟s the same every time. However, in the community one can never be sure if the ramp, for instance, is an easy enough grade to ascend or descend. This notion is supported by SCT in that judgment of confidence requires knowledge of task demands.2 Ambiguity of task demands may result in an underestimation or overestimation of the performance requirements, which may give rise to inaccurate confidence judgements leading to either avoidance or possibly an unsafe attempt at negotiating the physical barrier. 2.4.2.2 Too high for me to reach Confidence-challenging basic and instrumental activities, as well as community participations, were described by 13/13 of wheelchair users and 15/16 of health care professionals. Basic and instrumental activities of daily living that were identified included: self care (e.g., getting dressed), homemaking (e.g., laundry and cooking), transferring, leisure, gardening and wheelchair maintenance. An activity that may be seen as simple to some, such as reaching an object overhead, was not seen as simple to Sally, a 68-year-old wheelchair user who had experienced a stroke. She said “...the other big challenge in confidence is when something is too high for me to reach… somebody hung it [her jacket] up on the doorway of my closet about three days ago and so far I‟ve been unable to close my closet because of it and I keep forgetting to ask somebody to take the jacket down.” This example illustrated the model of reciprocal determinism from SCT2 with respect to the dynamic interaction between the personal factor of decreased physical ability secondary to stroke, the external environment of the jacket being located up high, and the behavior of needing to reach for the jacket outside the boundaries of a wheelchair, which may cause the wheelchair to tip or the wheelchair user to fall out. 33  Participation in community based activities that were described by participants as confidencechallenging included: toileting in public facilities, taking public transportation, grocery shopping, and travelling. One community activity was described by Phyllis, an activity worker at a long term care facility, who said, “… they‟re [residents] not as confident as when I see them in the building… when they get out onto the bus they‟re very cautious and very careful and sometimes want to be steered in the right direction just getting on the bus… it‟s not too hard but it‟s that they haven‟t done it before so they seem a bit nervous but most of them do it with some help.” 2.4.2.3 It isn’t a problem if I know what I need Confidence with knowledge and problem solving related to wheelchair use was identified as important to wheelchair use by 8/13 of wheelchair users and 13/16 of health care professionals. In terms of knowledge, confidence was described as challenged with respect to one‟s understanding of the exact assistance required in situations such as negotiating a physical obstacle, moving the wheelchair if it becomes stuck in a pothole, and getting help back into the wheelchair if the wheelchair has tipped. As Steve, a 26-year-old wheelchair user with spina bifida said, “…asking for help isn‟t the problem. It‟s knowing what kind of help I need.” The wheelchair user‟s confidence with their knowledge of how the wheelchair works was emphasized by the health care professionals. Elizabeth, a community occupational therapist said, “I think that sometimes the client‟s understanding of how the chair works... influences their confidence in how and what they might challenge it to do for them… I feel a lot of elderly people really don‟t understand what a wheelchair can do for them.” She expanded upon this notion when she described how many of her clients were unaware of the purpose of rear anti-tip devices and their role in preventing the wheelchair from tipping over backwards. According to  34  health care professionals, confidence in such knowledge seemed to dictate what skills wheelchair users would willingly try and what physical obstacles they would attempt to overcome. The importance of instilling a sense of confidence with problem solving was described by Gina, an occupational therapy assistant. She discussed incorporating it into her wheelchair skills training sessions so that, “...when you‟re not there… they can extrapolate to different situations.” Similarly, George, a physical therapist, described confidence with problem solving as being “… absolutely huge because...as a couple of my quads have said... I learned a lot in the first three months of being in here, but you boot me out to the community and that‟s where I learned eighty percent of what I know.” Other participants discussed how a wheelchair user‟s confidence in their ability to problem solve would often dictate where they would go in their wheelchair and whether or not they would go alone. One‟s confidence to generalize learned skills to new environments or situations is based not only on experience, but also reflective thought. According to SCT, individuals who focus on the familiar aspects of new activities will have greater transfer of confidence than those who focus on the more novel features of the activity.2 2.4.2.4 Being my own advocate The importance of being confident to advocate on one‟s own behalf was highlighted by 3/13 of wheelchair users. Although a small proportion, these wheelchair users emphasized the importance of advocacy and the difference successes can make to the challenges of a wheelchair user‟s daily life. Advocating for changes to one‟s place of work or school, community, home, and wheelchair were the main areas of advocacy that were discussed. For example, Emma, a 19year-old wheelchair user with spina bifida, described her success with advocating for physical changes to the university she was attending when she said, “I‟ve also learned to be my own advocate... when I made the decision to go to university I knew there were going to be physical 35  challenges... things like in the bathroom, like the fact of having a handle put on the stall door so I don‟t have to reach underneath the door to hold the door shut in order to lock it and also moving the soap dispensers down lower and paper towels down lower.” Although advocacy emerged from the perspective of the wheelchair users, the need for confidence in this area was supported by the 6/16 of health care professionals that discussed this area. However, the perspective of most health care professionals was different from that of the wheelchair users. While wheelchair users related stories that illustrated confidence in advocating on their own behalf, health care professionals viewed advocacy as a component of wheelchair use in which confidence is lacking for most manual wheelchair users. For instance, community therapists emphasized the importance of wheelchair users having confidence to advocate on their own behalf for modifications to their wheelchair, such as a change in axle position or removal of rear anti-tip devices as their skill level improves. Advocacy is another illustration of reciprocal determinism in that the cognitive aspect of the person advocating for changes impacts the environment, which, in turn, impacts behavior. 2.4.2.5 Looking like a struggling invalid For some wheelchair users, appearing competent and able in their wheelchair are critical issues, in fact important enough that it would influence what they did and where they went in their wheelchair. There were 11/13 of wheelchair users and 12/16 of health care professionals that discussed this area. For example, Scott, a 38-year-old wheelchair user with paraplegia, described how performing a given task is often less important than how he presents himself, “It‟s more the confidence of my body and my person and how that‟s expressed that will actually dictate whether I do it or not or whether I go there…I want to be presented in a certain way and the way is maybe not being a struggling, um, invalid that uses a wheelchair or life is hard.” In other areas 36  of study,111, 112 this phenomenon is called self-presentational efficacy which, by definition, refers to an individual‟s belief that they can successfully portray a specific impression to others.113 Creating a particular impression can be central to anyone, but may be particularly important to some individuals who use a manual wheelchair. An extension of self-presentational efficacy is having the confidence to put others at ease around people who use wheelchairs and to correct others‟ erroneous assumptions about people who use wheelchairs. For instance, Matt discussed “…it becomes incumbent upon the person in the wheelchair to make the other person comfortable. You have a job to do, it‟s like when I was in the hospital I mean I remember I spent most of the time making everyone else feel comfortable about my situation… it was just a complete role reversal than what you expect, but you‟ve got to, you‟ve got an obligation. If you want to succeed, you have to put yourself in a position where you make that other person, if they‟re uncomfortable, comfortable.” Rachel, a physiatrist, described disability myths and the importance of correcting wrong assumptions when she said, “There‟s a lot of disability myths. One of my very good friends who‟s wheelchair dependent for his mobility...he says when he first meets new people they often come up to him and they speak very loud. He says I‟m paralyzed I‟m not deaf, right?” 2.4.2.6 That kind of shakes your confidence Managing anxiety and stress in learning new wheelchair skills or generalizing those skills to new environments, as well as staying calm in stressful situations, were emphasized by 5/13 of wheelchair users and 10/16 of health care professionals. Matt described his stress related to his changing functional status. He said, “What happens is I get this weakness and I can‟t transfer. One day I ended up having to take an ambulance to the hospital, well that kind of shakes your confidence a bit, talk about self-efficacy I mean it‟s gone down the toilet.” As well, anxiety and 37  stress related to having an accident, such as tipping over backwards in the chair, were discussed. For instance, Christy, a physical therapist, when discussing a client‟s unsuccessful attempt at negotiating a curb cut said, “One dump out of a wheelchair is really going to put them back in terms of being willing to try it again.” According to SCT, previous experience and pre-existing confidence levels will influence the impact of a negative experience. Experiences that are inconsistent with one‟s self-beliefs tend to be minimized, discounted, or forgotten, whereas those that are congruent are readily noticed, given significance, and remembered. Further, after a strong sense of self-efficacy is developed through repeated successes, occasional failures or setbacks are unlikely to undermine belief in one‟s capabilities.2 In this research, confidence in management of emotions was seen as being key to wheelchair skill development and participation in life activities outside of the home. This view is in keeping with Bandura‟s premise that physiological and affective states provide sources of confidence.2 Interestingly, it quickly became evident during the interviews that confidence is a sensitive topic, even when discussing straightforward issues related to physical barriers. For example, Al came to tears when discussing his lack of confidence in accessing his community environment to participate in once loved activities. Susan, a 45-year-old participant with arthrogryposis, said “I would like to believe that I could do anything”. She became quite frustrated and verbally expressed her „gut emotional issue‟ when she realized during the interview process the discrepancy between her ideals and the reality of the many aspects of wheelchair use that challenged her confidence. 2.5  Conclusions  All 29 wheelchair users and health care professionals were able to provide descriptions of situations that challenge-confidence with wheelchair use. Participants were able to discuss a 38  range of confidence challenging situations supporting the notion that confidence does in fact influence manual wheelchair use. As discussed above, there was a good fit between SCT and the experiences and insights of this sample of wheelchair users and health care professionals. All participants were Canadian-dwelling residents, however, which minimizes generalizing the results to wheelchair users outside of Canada. Another limitation may be the sensitivity of the topic. As discussed earlier, many participants, especially wheelchair users, found it difficult to discuss their confidence with wheelchair use that was indicated by body language, rapid topic changes and sometimes even strong emotional reactions. Confidence with the different aspects of wheelchair use cannot be directly observed and so may be overlooked during the rehabilitation process of manual wheelchair users. This research has provided important insight into confidence with wheelchair use. Further, identification of lack of confidence in these areas is especially important considering Bandura‟s premise that confidence is a stronger predictor of future behavior than whether one has the necessary skill to perform the activity.2 When a wheelchair is necessary to perform daily activities both within the home and the community, lack of confidence in the areas identified in this research has the potential to significantly restrict where a wheelchair user goes and what a wheelchair user does in his or her chair. Apart from asking wheelchair users about confidence issues, there is no other method of capturing this invisible barrier to wheelchair use. A logical next step in this area of research would be to design an instrument to measure confidence with manual wheelchair use that would enable clinicians and researchers to determine the importance of this issue and also to evaluate the impact of confidence enhancing interventions.  39  3  3.1  Development and Content Validation of the Wheelchair Use Confidence Scale: A Mixed-Methods Study c Introduction  A goal of the rehabilitation of manual wheelchair users is to promote independence with wheelchair use in order to enable participation in chosen daily activities. A newly identified invisible barrier to manual wheelchair use is low self-efficacy.114 Defined as belief in one‟s ability to perform a given task, self-efficacy is the core of Bandura‟s Social Cognitive Theory.2 It influences choice of activities and motivational level, and contributes to the acquisition of knowledge and refinement of new abilities.2 Although wheelchair use may seem straightforward, it can be quite complex, such as in situations where physical (e.g. curbs) or social (e.g. stigma) environmental barriers must be managed. Self-efficacy is task-specific and its measurement requires a domain-specific assessment tool.2 Self-efficacy assessments have been developed for various aspects of mobility, such as the Ambulatory Self-Confidence Questionnaire107 and the Activities-specific Balance Confidence Scale.87 However, a validated tool to measure self-efficacy with manual wheelchair use does not exist. A review of the literature identified only one published study that has assessed confidence with wheelchair use.79 A study-specific measure was used which asks about confidence in using one‟s wheelchair at home, out of doors, in public places such as the grocery store or mall, and in unfamiliar places. The measure used was developed specifically for the study. It was not developed using stakeholders (e.g., wheelchair users or health care professionals) or according to Bandura‟s guidelines for developing self-efficacy scales.2 Further, it was not assessed in terms of  c  A version of this chapter was published. Rushton PW, Miller WC, Kirby RL, Eng JJ, Yip J. Development and content validation of the Wheelchair Use Confidence Scale: a mixed-methods study. Disabil Rehabil Ass Tech 2010 September 2, 2010 (Advance on-line publication). doi:10.3109/17483107.2010.512970. Available at: http://informahealthcare.com.ezproxy.library.ubc.ca/doi/pdf/10.3109/17483107.2010.512970.  40  its reliability or validity. As the only measure developed and available to date, this literature review confirmed the need for the development of an assessment to measure confidence with wheelchair use. This research reports the development and content validation of a new self-efficacy measure for measuring confidence with manual wheelchair use, the Wheelchair Use Confidence Scale (WheelCon-M). Our intention was that this scale would be suitable for use with adult manual wheelchair users with any physical diagnosis across the continuum of care from initial rehabilitation to community reintegration. 3.2  Method  3.2.1 Design The WheelCon-M was developed using a two-phase, mixed-methods, sequential qualitativequantitative design.115 Item generation was conducted using semi-structured interviews. Item selection was accomplished using a Delphi survey. The two phases will be described in sequence below. All procedures were approved by the University of British Columbia and Capital Health behavioral research ethics boards. Informed consent was obtained from all participants. 3.2.2 Item generation 3.2.2.1 Recruitment Purposive sampling was used to identify a group of experts comprised of: (1) wheelchair users, (2) health care professionals and (3) researchers from eastern and western Canada. Wheelchair users were eligible to participate if they were at least 19 years of age, lived in the community, used a manual wheelchair as their primary means of mobility, and had at least 6 months of experience using a manual wheelchair. They were recruited through a number of sources,  41  including a research lab volunteer database, clinician contacts, and various organizations, such as the Canadian Paraplegic Association, that could recommend individuals who could speak about wheelchair use. Health care professionals and researchers were eligible to participate if they were an occupational therapist, physical therapist, physiatrist, or researcher in the area of wheeled mobility and had at least three years of experience in working with clients who use wheeled mobility (clinically or in a research capacity). Participants from the latter two groups were targeted on the basis of their reputation, as determined by factors such as clinical expertise, research activities, and publication record in the area of wheelchair use. An inability to speak and write in English was the only exclusion criteria. 3.2.2.2 Procedure Use of in-depth, qualitative interviews to generate items for the WheelCon-M presented a contemporary user-centered approach intended to elicit a broad spectrum of content so that important and novel items were less likely to be overlooked. The interviews, geared towards determining situations where confidence is challenged with wheelchair use, were based on a semi-structured interview guide (Appendix C). A trained occupational therapist/researcher conducted all of the interviews either face-to-face or by telephone; interviews continued to the point of theoretical saturation.109 All interviews were digitally recorded and transcribed verbatim. Wheelchair user (Appendix A) and health care professional and researcher (Appendix B) participant demographics were collected. 3.2.2.3 Data analysis The interview transcripts were analyzed using a constant comparison approach3 whereby data collection and data analysis occurred simultaneously. This process allowed emerging themes regarding confidence with wheelchair use in earlier interviews to be further explored and 42  substantiated by participants in later interviews. The qualitative data analysis program NVivo8 was used to code the data and identify major themes. 3.2.2.4 WheelCon-M development A WheelCon-M, version 1.0 (Appendix D) was developed based on both Bandura‟s guidelines for the construction of self-efficacy scales105 and the interviews with experts. The guidelines informed the development of the scale in terms of the instructions, the response scale, and format. More specifically, the instructions were formatted to ask the respondents about their level of confidence „as of now‟, the response scale used a 100-point scale ranging in 10-unit intervals, the items were phrased in terms of „can do‟ rather than „will do‟, and the items were organized according to gradations of challenge. The interviews (as well as the authors‟ knowledge of the area) served as a conceptual analysis of the domain of wheelchair use and the information gathered during the interviews informed the generation of the items. Essentially, all reported confidence-challenging situations related to wheelchair use were included in the draft WheelCon-M to ensure the development of a comprehensive scale. 3.2.3 Item selection A three-round Delphi survey was used to generate consensus on the content of the WheelCon-M, version 1.0 among a panel of experts. As the draft scale was completed during the interview phase, it was deemed that three rounds would suffice to reach adequate consensus and would minimize participant burden. Consensus was operationally defined as ≥70%.4 3.2.3.1 Expert panel The expert panel for the Delphi survey consisted of all 29 interview phase participants, plus nine additional wheelchair users and five researcher experts recruited using the same strategies and  43  inclusion/exclusion criteria. The wheelchair users were added to expand upon the wheelchair user views, while the researchers were added to contribute a measurement perspective to the item selection process. A total of 43 experts agreed to participate in the Delphi survey. This group of individuals is considered to be a representative sample of experts in the area of wheeled mobility and/or confidence. Wheelchair user (Appendix A) and health care professional and researcher (Appendix B) data were collected. 3.2.3.2 Delphi questionnaire development and distribution Two versions of the questionnaire were developed: a paper copy distributed via mail and an online version distributed using Survey Monkey. Although the format of the questionnaires differed, the content was the same. A small pilot study was conducted for both versions (n=5 respondents for each) and minor modifications were made based on the feedback received. Questionnaires were distributed to the expert panel using the method of their choice. Experts were asked to complete the questionnaire within seven days. Reminders were sent two days before the upcoming deadline, by email for those participants completing the online version and by phone for those completing the paper version. Non-responders were sent reminders the day after the deadline and again few days later. Those respondents who did not complete the survey after the reminders were sent were dropped from the study. 3.2.3.3 Round 1 The round 1 questionnaire contained: (1) written instructions explaining how to evaluate the WheelCon-M; (2) a brief overview of the rationale for developing the WheelCon-M; (3) a copy of the WheelCon-M itself for the experts to complete prior to giving feedback; (4) evaluation forms for rating the WheelCon-M instructions, response scale and items; and (5) suggestions for rewording or general comments in all of the evaluation sections and suggestions for items missed 44  at the end of the questionnaire. Experts rated clarity of instructions using „yes‟/‟no‟ response options. For the 0 („not confident‟) -100 („completely confident‟) response scale, experts rated the number of response options and anchor descriptors using a 4-point system („strongly disagree‟ to „strongly agree‟). Experts also rated the WheelCon-M items in terms of: (a) their relevance to measuring confidence with wheelchair use („not relevant‟, „somewhat relevant‟, „quite relevant‟ and „very relevant‟), (b) the ability of the items to discriminate between individuals with high and low confidence („not well‟, „somewhat well‟, „quite well‟, „very well‟), and (c) whether or not the items were clearly worded („yes‟ or „no‟). 3.2.3.4 Round 2 and round 3 The round 2 and 3 questionnaires contained: (1) instructions; (2) a reminder of the rationale for developing the WheelCon-M; (3) a flow-chart to show the process for retaining or removing items in the subsequent round; (4) items to be re-rated from the previous round; (5) new items based on comments from round 1 to be rated (round 2 only); and (6) an opportunity at the end of the questionnaire for further comments. For the items to be re-rated, the experts were provided with the group summary responses as well as their own responses from the previous round. In order to expedite the Delphi process, only one reminder was sent in rounds 2 and 3. Otherwise, the same processes for distribution and reminders from round 1 were used in rounds 2 and 3. 3.2.3.5 Analysis Responses were combined and cumulative percentage scores calculated for all quantitative questions, including instructions, response scale and items. All comments and suggestions were read and carefully considered. An algorithm was used to analyze the items in the order of relevancy, discriminatory ability and wording. Figure 3.1 outlines this process. For items that did not achieve consensus after the three rounds of questionnaires, the wheelchair user group 45  responses were used to determine which items would be retained in the WheelCon-M. This decision was based on recommendations for the development and validation of self-efficacy instruments. 106 Figure 3.1 WheelCon-M item analysis process  46  3.3  Results  3.3.1 Item generation 3.3.1.1 Experts All 29 experts contacted agreed to participate in the interviews. The demographic data for the expert panel are presented in Table 3 (in the interview columns). The wheelchair users were, on average, middle-aged (48.7±18.7) with 13.4±11.9 years of experience using a manual wheelchair. The health care professionals averaged 14.1±7.8 years of practice and were mainly occupational therapists (62.5%).  47  Table 3.1 Demographics of experts for item generation (interview) and item selection (Delphi survey) phases  Age (mean, (SD)) Female (%) Years in Wheelchair (mean, (SD)) Years Practicing (mean, (SD)) ≥ Bachelors education (%) Diagnosis (%) SCI LLA CVA Osteoporosis Spina Bifida MS Arthrogryposis Polio Profession (%) Activity Worker (recreation) Occupational Therapist Occupational Therapy Assistant Physiotherapist Physician Researcher  Wheelchair Users Interview Delphi (n=13) (n=22) 48.7 (18.7) 52.0 (16.9) 46.2 36.4 13.4 (11.9) 18.3 (14.9)  53.8  50.0  30.7 15.4 7.7 7.7 15.4 15.4 7.7 0.0  50.0 9.2 4.5 4.5 13.6 9.2 4.5 4.5  Professionals Interview / Delphi (n=16) 39.9 (8.3)  Researchers Delphi (n=5) 40.0 (7.6)  87.5  100.0  14.1 (7.8)  14.0 (9.2)  93.8  100.0  6.3  0.0  62.5  60.0  6.3  0.0  18.8 6.3 0.0  0.0 0.0 40.0  SD = standard deviation; SCI = spinal cord injury; LLA = lower limb amputation; CVA = cerebral vascular accident; MS = multiple sclerosis  48  3.3.1.2 Interviews An 84-item WheelCon-M, version 1.0 (Appendix D) was developed based on data from 29 interviews. The interviews continued until no new ideas emerged. The content was organized according to themes into six areas (number of items/area): Negotiating the Physical Environment (39), Activities Performed Using a Manual Wheelchair (26), Knowledge and Problem Solving (6), Advocacy (4), Managing Social Situations (6), and Managing Emotions (3). This 84-item WheelCon-M, version 1.0 was used to construct the first questionnaire of the Delphi survey. 3.3.2 Item selection 3.3.2.1 Experts All 43 experts contacted agreed to participate in the Delphi survey. The demographic data for the expert panel are presented in Table 3.1 (in the Delphi columns). The wheelchair user group (13 individuals from the interview phase plus nine new experts) was on average middle aged (52±16.9 years) with 18.3±14.9 years of experience using a manual wheelchair. The health care professional group was composed of the same individuals as in the interview phase. The researcher group members were experienced in their fields (14.0±9.2) and 60% occupational therapists. The number of experts responding to each round of the Delphi is shown in Table 3.2.  49  Table 3.2 Number of experts involved in each Delphi round Invited to Participate Agreed to Participate Round 1 returns Without reminder After 1 reminder After 2 reminders Completed round 1 Round 2 returns Without reminder After 1 reminder Completed round 2 Round 3 returns Without reminder After 1 reminder Completed round 3  Wheelchair Users 22 22  Professionals 16 16  Researchers 5 5  Total 43 43  18 2 1 21  12 2 1 15  5 0 0 5  35 4 2 41  16 2 18  5 6 11  4 1 5  25 9 34  15 3 18  6 3 9  2 3 5  23 9 32  3.3.2.2 Delphi rounds The response rates for rounds 1, 2 and 3 were 95.3%, 82.9% and 94.1% respectively. Three of the experts in round 1 and two in rounds 2 and 3 (all wheelchair users) requested and were provided with assistance to complete the questionnaire. Specifically, one expert required physical assistance in writing the answers and two experts required guidance in working through the process of determining if the items could discriminate between low and high confidence. Table 3.3 provides details regarding the number of experts who completed the paper version versus the online version of the Delphi survey, the time to complete the survey, response rates per category of participant, and reasons for drop out.  50  Table 3.3 Delphi responses and time to complete per round WCU Paper Version (n) Online Version (n) Time to complete (%) <10 min 10-19 min 20-39 min 30-39 min 40-49 min 50-59 min >60 min Response Rate (%) Reasons for dropout  Round 1 HCP Res.  7  1  14  14  5  Total  6  1  33  12  10  44.4 44.4  81.8 18.2  21.4 28.6 28.6 21.4  16.7 83.3  17.1 17.1 19.5 46.3  95.5  93.3  100.0  95.3  Too busy (1)  Round 2 HCP Res.  8  19.0 14.3 14.3 52.4  U (1)  WCU  5.6  Total  WCU  Round 3 HCP Res.  Total  7  6  1  5  27  12  8  5  25  60.0 20.0  58.8 32.4  22.2 44.4 27.8  44.4 44.4 11.1  40.0 60.0  31.3 46.9 18.8  20.0  5.9  5.6  5.6  7  3.1  2.9  85.7  78.6  HS (1), H (1), U (1)  Late (1), Too busy (2), U (2)  100.0  82.9  100.0  81.8  100.0  94.1  U (2)  WCU=wheelchair user; HCP=health care professional; Res=researcher; U = unknown; HS=husband sick; H=hospitalized  51  3.3.2.3 WheelCon-M instructions and response scale Eighty-three percent of the expert panel responded that the instructions were clear. Although consensus was reached, suggestions to improve the instructions were also provided in the comments section. Simple changes were implemented to improve the readability and clarity of the instructions based on recommendations from the experts. For example, one expert suggested adding an extra example in the instructions to demonstrate that self-efficacy can be incremental. In line with this suggestion, the instruction now reads „For example, an answer to the question “How confident are you that you can lift a 5 lb. box?” might be 82%, whereas “How confident are you that you can lift a 10 lb box?” might be 48%‟. Some recommendations were disregarded because they conflicted with Bandura‟s guidelines. For example, one expert‟s recommendation to change „as of now‟ in the instructions was disregarded based on Bandura‟s principle that people should judge their capabilities as of now, not their potential capabilities or their future capabilities.105 For the response scale, 80.5% of the expert panel agreed/strongly agreed that the 1-100 scale provided a good number of response options and 85.4% of the panel agreed/strongly agreed that the descriptors for the response scale were appropriate. However, comments were also provided in this section, including a recommendation to use a smaller scale, such as 0-10 or 0-20. This suggestion was disregarded as we felt that a 0-100 response scale may improve the sensitivity of the measure.116Because both the instructions and response scale questions achieved ≥ 70% consensus, it was not necessary to include them in round 2 for re-rating. 3.3.2.4 WheelCon-M items In round 1, the WheelCon-M, version 1.0 contained 84 items to be rated in terms of their relevancy, discriminatory ability, and wording. This generated a total of 252 separate questions 52  to be answered about the items. In round 2, there were 29 items from round 1 requiring re-rating of relevancy and/or discriminatory ability. Three new items were added to round 2 based on suggestions. The 29 items to be re-rated from round 1, plus the three new items, generated a total of 43 questions for round 2. In round 3, there were 17 items to be re-rated from round 2 generating 21 questions. Table 3.4 shows the number of items per round removed, retained, or re-rated based on 70% consensus.  53  Table 3.4 Items retained, removed, and re-rated after each Delphi round Number of Items to be Rated Delphi Round  Relevant Only?  Number of Items Retained Relevant and Able to (≥70% Able to Discriminate Only? Discriminate? quite/very)  Number of Items Removed Not Relevant  Not able to Distinguish  No Consensus  1  0  0  84  41  14  0  29  2  1  23  5 (+3 new)  14  0  0  17  3  1  12  4  1  1  1  14  Post Delphi  2  11  1  3  2  9  0  54  Table 3.5 shows the WheelCon-M items that were removed per round and the reason for their removal. In round 1, seven items from the Negotiating the Physical Environment area, six items from the Activities Performed in the Wheelchair area, and one item from the Social Situations area were deemed not relevant and therefore removed. Interestingly, all items removed from the Activities Performed and Social Situations areas were also deemed not able to discriminate between high and low confidence. In round 2, no items were removed. In round 3, one additional item was removed from the Physical Environment area due its inability to discriminate between high and low confidence. There were 14 items that did not reach consensus after three Delphi rounds: four in the Negotiating the Physical Environment area, nine in the Activities Performed in the Wheelchair area, and one in the Managing Social Situations area. Based on the wheelchair users‟ responses, one item was retained from Negotiating the Physical Environment area, one in the Activities area, and one in the Managing Social Situations area. Finally, a decision was made to return two items to the WheelCon-M because they were the counter to items that remained on the scale. For example, the item „over a drainage grate and then up a curb cut‟ was removed from the WheelCon-M based on a 70% response that it was not relevant, while, „over a drainage grate and then down a curb cut‟ did not achieve a 70% consensus as not relevant. To counter the remaining item, the removed item was returned to the WheelCon-M.  55  Table 3.5 Items removed from the WheelCon-M during and post Delphi rounds Delphi Rounds  Reason for Removal Not Not Able to Relevant Discriminate  Round 1 Physical Environment area (As of now, how confident are you moving your wheelchair…)  through puddles?  through slush?  along a cobblestone walkway?  over a drainage grate and then up a curb cut?  through snow and then up a curb cut?  up 3 to 5 steps?  down 3 to 5 steps? Activities area (As of now, how confident are you…)  moving from your wheelchair to a chair in a restaurant?  moving from your wheelchair to a seat in a movie theatre?  folding your manual wheelchair?  unfolding your manual wheelchair?  putting your wheelchair in your vehicle?  securing your wheelchair on public transportation? Social Situations area (As of now, how confident are you that you can…)  make a good impression in front of friends or colleagues when doing more challenging wheelchair activities, such as wheeling across gravel or moving from your wheelchair to another seat like in a movie theatre? Round 2 No questions were removed Round 3 Physical Environment area (As of now, how confident are you moving your wheelchair…)  through open doorways? Post Delphi Rounds Physical Environment area (As of now, how confident are you moving your wheelchair…)                                 56   around tight corners?  through a store with lots of space between the aisles? Activities area (As of now, how confident are you…)  doing laundry while using your wheelchair?  getting dressed while using your wheelchair?  participating in wheelchair sports, such as wheelchair basketball?  positioning your wheelchair at a dining table?  reaching an item off of a high shelf while using your wheelchair?  picking a magazine up off of the floor while using your wheelchair?  doing toileting activities while using your wheelchair?  cleaning your home while using your wheelchair?                57  3.3.2.5 WheelCon-M, version 2.0 After the three-round Delphi survey with 43 experts, the WheelCon-M, version 1.0 was modified into the WheelCon-M, version 2.0 (Appendix E). At this stage, the WheelCon-M test content was validated and the items were selected. Ultimately, the resultant 62-item WheelCon-M, version 2.0 scale was composed of the following areas: Negotiating the Physical Environment (33 items), Activities Performed Using a Manual Wheelchair (11 items), Knowledge and Problem Solving (6 items), Advocacy (4 items), Managing Social Situations (5 items), and Managing Emotions (3 items). 3.4  Discussion  The development and content validation of the 62-item WheelCon-M was reported in this paper. The mixed methods, sequential, qualitative-quantitative design enabled exploration into this new area of research maximizing involvement of key stakeholders. Use of wheelchair users, health care professionals and researchers resulted in the development of both expected and unexpected WheelCon-M content areas, each evaluating a different aspect of confidence with wheelchair use. The WheelCon-M instructions, response scale and format were developed according to Bandura‟s guidelines for developing self-efficacy scales.105 The content of the items in each area was validated using a Delphi survey. The Negotiating the Physical Environment area was expected and represents over half of the items (33) in the scale, which is consistent with the extensive literature in this area. Previous studies have explored the physical environment related to wheelchair use55, 75 and prior instruments have been developed to assess wheelchair skill in overcoming environmental barriers.33, 34 The difference, of course, between instruments that assess function or skill and this new scale, is that the WheelCon-M is designed to ask about belief in one‟s ability to overcome 58  aspects of the physical environment. Many of the items in the WheelCon-M address aspects of the physical environment that are either the same as, or similar to, those addressed in performance-based instruments that measure wheelchair function or skill, such as wheeling over potholes and climbing curbs.23, 33, 34 The overlap between WheelCon-M items and items in performance-based measures of wheelchair use lends support to the credibility of these physical environment items. Many of the items that were removed from the Negotiating the Physical Environment area of the WheelCon-M during the Delphi survey represent items that may have resulted in a ceiling or floor effect. For instance, some items asked about aspects of the environment that are generally not very challenging to confidence, such as “As of now, how confident are you moving your wheelchair… through open doorways, along a paved sidewalk, and through a store with lots of space between the aisles?”. Other items that were removed asked about aspects of the environment that are generally very challenging to confidence and that many people avoid, rather than attempt, in their daily lives, such as “As of now, how confident are you moving your wheelchair up/down 3 to 5 steps?”. Some items in the Negotiating the Physical Environment area address two issues in the same question. An example of such an item is “As of now, how confident are you moving your wheelchair down a steep slope and then stopping?”. It is generally recommended that such items be avoided because the aspect of the question to which the individual is responding may be unclear.5 However, during the interview phase of this research, many of the participants commented on high levels of confidence to complete certain skills or overcome specific aspects of the physical environment separately, but low levels of confidence when certain skills or  59  aspects of the environment occurred in sequence. Therefore, we felt it was important to include such types of questions in the WheelCon-M. The Activities Performed Using a Manual Wheelchair area was also expected to have items that overlap with items in instruments that measure the wheelchair user‟s skill or function.23, 30, 33, 34 Some items in this area were removed because they were deemed not relevant, perhaps because they were not common practice for many wheelchair users, such as “As of now, how confident are you moving from your wheelchair to a chair in a restaurant?”. Other items were removed mainly because the experts felt the items were not able to distinguish between high and low confidence such as, “As of now, how confident are you reaching an item off of a high shelf while using your wheelchair?”. Interestingly, these types of items are often found on instruments that measure wheelchair skill.33, 34 The remainder of the areas were unexpected as these domains are generally not assessed related to wheelchair use. The Knowledge and Problem Solving area (6 items) focuses on knowledge of: assistance required, capabilities of one‟s wheelchair, and wheelchair maintenance, as well as problem solving in new environments or stressful situations. The implications of low confidence in these areas can be far reaching for a manual wheelchair user. For instance, if one does not have confidence in their ability to problem solve in new situations or in their knowledge of their wheelchair, they may be less likely to venture out into the community or to become involved in new activities. The four items in the Advocacy area ask about confidence related to advocating for changes to one‟s wheelchair, home, school or work, and community environments. Despite efforts that have been made to implement universal design and ensure wheelchair accessibility, physical barriers  60  continue to exist. Therefore, confidence in one‟s ability to advocate for their needs is especially important. Whether advocating for funding for a ramp, a new wheelchair cushion, or fixing a cracked sidewalk, all of these changes can make a difference in a wheelchair user‟s confidence in using their wheelchair. The Managing Social Situations area is a novel domain in the body of wheelchair literature. Most questions in this five-item area involve the wheelchair user‟s confidence in how they perceive that they „look‟ performing tasks or activities. In other areas of study,111, 112 this phenomenon is called self-presentational efficacy which, by definition, refers to an individual‟s belief that they can successfully portray a specific impression to others.113 Creating a particular impression can be central to anyone, but may be particularly important to some individuals who use a manual wheelchair. The Managing Emotions area has three items that ask about confidence in managing emotions while moving one‟s wheelchair in new environments, when trying new skills, and in stressful situations. Managing emotions can play an important role in the development of new wheelchair skills and the generalization of these skills into new environments and in new activities. For example, if wheelchair users are unable to manage the anxiety related to learning to climb a curb, it is unlikely they will consistently perform this skill which may, in turn, limit their independent community wheelchair use. This research has several limitations. First, although some may consider a sample of 43 to be small, Delphi panel sample sizes vary considerably in the literature and choice of the „best‟ participants is considered more important than the number of participants.116 Second, use of a panel of experts may be seen as restricting. Although the experts were identified based on their  61  knowledge and experience with wheelchair use and provided a broad range of perspectives, each participant was only able to draw on their own experiences and therefore may not have had the knowledge to appropriately answer all of the Delphi survey questions. Regardless of individual experiences though, consensus was reached for retaining or removing 70 out of 84 items across all three participant groups. The degree of consensus achieved indicates that the influence of the group as a whole was able to cancel out inappropriate responses, thereby demonstrating the effectiveness of the Delphi process. Third, ending the Delphi survey after three rounds, before consensus was reached for all items, may be seen as a limitation. However, despite not reaching consensus for 14 out of the 84 items across all three groups of experts, use of the wheelchair users‟ responses to make the final decision was appropriate as they are, after all, the true experts of wheelchair use. The use of three groups of experts to assess test content and select items for the WheelCon-M represents a strength of this research in that insight was gained from practical, clinical, and measurement perspectives. The high response rate for each round of the Delphi survey was also a strength. The response rates for each round were over the suggested 70% response rate required to maintain the rigor of the Delphi process.116 3.5  Conclusion  The development and content validation of the Wheelchair Use Confidence Scale (WheelConM) was reported in this paper. As a scale to measure confidence with wheelchair use was not available prior to this work, clinicians now have a method to measure this invisible barrier to wheelchair use. We believe that a subjective measure of belief in one‟s ability to use his or her wheelchair will be a useful addition to objective, performance-based scales of wheelchair use. It will enable clinicians to make informed decisions when prescribing and training clients to use a 62  manual wheelchair and also provide researchers with an important and relevant area of research in future research.  63  4 4.1  Item Refinement of the WheelCon-M: Use of a Think Aloud Approach d Introduction  Self-efficacy, defined as the belief in one‟s ability to perform a given task, is at the core of Bandura‟s Social Cognitive Theory.2 According to Bandura,2 judgments of self-efficacy play a major role in determining whether to perform a behavior, the degree of effort to invest, and the length of time one will persist in a given activity. Self-efficacy is situation-specific and can vary considerably depending on the context. Measurement of self-efficacy therefore requires a domain-specific tool that is carefully developed and validated. Recently, a new self-efficacy instrument, the Wheelchair Use Confidence Scale (WheelCon-M) was developed. This self-report questionnaire is the first and only comprehensive instrument available to measure confidence with manual wheelchair use. One of the potential uses of the WheelCon-M is to identify individuals with low confidence in wheelchair use so that targeted interventions can be provided. The development of the WheelCon-M has involved an iterative process with people who use wheelchairs very much recognized as the true experts. Version 1.0 was an 84-item scale generated using qualitative interviews with wheelchair users (n=13) and health care professionals (n=16). Items were selected and its content validated using a threeround Delphi survey with wheelchair users (n=22), health care professionals (n=16), and researchers (n=5). This process reduced the number of items to 62 (version 2.0).117 In round one of the Delphi survey, 95% of the items were deemed „clearly worded‟, based on an 80% consensus. However, an item being „clearly worded‟ does not necessarily mean that it will be  d  A version of this chapter was submitted for publication. Rushton PW, Vaughan K, Miller WC, Kirby RL, Eng JJ. Item Refinement of the Wheelchair Use Confidence Scale: A Think Aloud Approach. (submitted Oct. 15, 2010).  64  interpreted as intended. Therefore, it is useful to assess the response processes of participants as well. Response process is defined as the relationship between the intended construct and the thought processes of participants or observers.66 Messick6 recommended that an assessment of response processes should be conducted to support the validity of new instruments. Such an assessment is necessary because individuals may provide a plausible answer to an item on a questionnaire even if they knowingly or unknowingly do not understand the question.118 The assessment of response process has been reported in the development and refinement of a wide variety of questionnaires in the health care literature. Examples included: a questionnaire of symptoms in end-stage renal disease,119 a measure of cancer-related fatigue,120 a constipation questionnaire for older adults,121 a pain assessment tool for cancer patients,122 and a symptom assessment system.123 To determine the extent of the assessment of response process in the development and assessment of self-efficacy scales, we conducted a systematic search of Embase, CINAHL, Pubmed, and Medline from inception through July 2010. Titles and abstracts were searched using the following key words: response process, cognitive interview, think aloud, verbal probing, self efficacy, confidence, assessment, outcome measure, scale, and questionnaire. Articles were included in the review if there was any report at all of the assessment of response process of the self-efficacy scale. Only articles written in English were reviewed. We found only three articles that reported the assessment of response process in the development and validation of a new self-efficacy scale.124-126 These articles reported that findings from the assessment of response process ultimately improved the scales through refinement of questionnaire instructions, items, and response options.  65  One method of assessing response process is a concurrent think aloud process. This process assesses comprehension of questionnaire items, minimizes interviewer-imposed bias, and facilitates an open-ended format whereby participants often provide unanticipated information.127 Information gathered using the think aloud process can be used to judge whether participants‟ interpretations of questionnaire items match the intentions of the developers so that problems can be identified and resolved prior to further psychometric testing. The primary purpose of this research was to use the think aloud process to understand how each item on the WheelCon-M, version 2.0 was interpreted and to refine items that were not interpreted as intended. We also assessed the inter-rater reliability for the behavior coding of the participants‟ think aloud responses in order to check for consistency in coding, and therefore consistency in identifying items that were not intended as interpreted. 4.2  Method  4.2.1 Design A cross-sectional descriptive study design was used, incorporating a concurrent think aloud process. 4.2.2 Participants Seven participants were recruited to think aloud while they were completing the WheelCon-M. According to Willis,127 as few as four think aloud participants may be sufficient in the early stage of instrument development. Letters of information were mailed to potential participants on a rehabilitation research volunteer database and hand-delivered or mailed to potential participants who attended rehabilitation services at a local rehabilitation center. Advertisements were posted in facilities frequented by manual wheelchair users (e.g., fitness facilities, community centers), as well as online via e-bulletins and community organization websites, such as the Multiple 66  Sclerosis Society of British Columbia website. To be included in the research, participants had to be at least 19 years of age, independently use a manual wheelchair as their primary means of mobility (at least four hours per day), have at least six months of experience using a manual wheelchair, and live in the community. Folstein‟s Mini Mental State Exam (MMSE) was used to screen for cognitive impairment using a cut-off score of ≥24. The MMSE (Appendix F) has been reported to be a reliable and valid tool.128 Participants were excluded if they were unable to read and write in English. Written consent was received from each participant prior to data collection. Ethics approval was obtained from the University of British Columbia. 4.2.3 Measure Version 2.0 of the WheelCon-M (Appendix E) was used in this research.117 It asks individuals to rate their confidence with manual wheelchair use related to negotiating the physical environment, performing activities in the wheelchair, knowledge and problem solving, advocacy, managing social situations, and managing emotions. For each item, the participant is asked “As of now, how confident are you …”. The individual‟s confidence level is rated using a 0 (not confident) -100 (completely confident) response scale. The WheelCon-M is scored by summing the ratings for each item and dividing by the total number of items (62) with total scores ranging from 0 to 100. 4.2.4 Procedure To begin, participants were asked to complete a short questionnaire (Appendix G) detailing their demographic, clinical, and wheelchair-use characteristics. The WheelCon-M instructions and response scale were then described to the participant, along with the purpose of the research and think aloud process. Any questions were addressed at this time. Next, participants were instructed to read each WheelCon-M item out loud and then speak all of their thoughts out loud 67  as they formulated an answer to the item. Apart from reminding the participants to continue to „think out loud‟ if they paused for more than a few seconds, they were not interrupted in order to reduce interference with the their flow of thoughts.129 If the participant asked for further clarification from the researcher, a slightly delayed (5-10 seconds) response was given to ensure that no further independent thoughts were forthcoming. As described in a previous think aloud study,130 the researcher remained to the side of the participant to deter participants from seeking feedback. The researcher recorded the participant‟s think aloud responses in written format verbatim unless the participant wandered completely off-track delving into irrelevant areas, such as telling a story that was unrelated to the question at hand. 4.2.5 Data analysis Demographic data were analyzed using descriptive statistics (e.g., means and proportions). The written think aloud responses were typed and entered into an Excel spreadsheet. We used the respondent behavioral code categories developed by Fowler and Cannell131 to code the participants‟ responses (Figure 4.1). The only category that did not apply to this research was „interruption with answer‟ as we did not read the items to the participants. With the exception of the „adequate‟ code, all codes indicated a problem with a WheelCon-M item. Each think aloud response that indicated there was a problem was defined as a problem indicator. One behavior code was chosen for each participant‟s think aloud response per WheelCon-M item. All responses were coded independently by the primary author and a research assistant according to the intent of the item as per data gathered in the item generation and item selection phases of the WheelCon-M development, as well as clinical judgment. Having been involved in all phases of the WheelCon-M development, the research assistant was well-informed regarding the intent of each WheelCon-M item.  68  Figure 4.1 Behavioral code categories Interruption with answer Don‟t know Refusal to answer Clarification Adequate Answer Qualified Answer Inadequate Answer  Participant interrupts initial question reading with answer Participant gives a don‟t know or equivalent answer Participant refuses to answer the question Participant asks for clarification of question, or makes statement indicating uncertainty Participant gives answer that meets question objective Participant gives answer that meets question objective, but is qualified to indicate uncertainty about accuracy Participant gives an answer that does not meet question objective  The inter-coder reliability for the behavior coding of the participants‟ think aloud responses for each WheelCon-M item was measured using Cohen‟s kappa statistic (κ = P – pe / 1 - pe) where P was the proportion of all items for which the two coders agreed on the behaviour code and pe was an estimate of the expected proportion of chance agreement.132 According to Fleiss,133 kappa values above 0.75 represent „excellent agreement‟ and values from 0.40 to 0.75 represent „fair to good agreement beyond chance‟. After calculation of kappa, discrepancies in coding were resolved through discussion by the two researchers until consensus in coding was reached. All items with problem indicators were reviewed to identify the source or reason for the difficulty. We judged whether or not to modify an item based on our perception of the size or effect of the problem indicator itself (e.g., if only one participant misunderstood a term that was clear to all other think aloud participants, then we may have chosen not to modify that item), data from the WheelCon-M item generation and selection phases, and clinical judgement. To refine items for Version 2.1 (Appendix H), minor changes involved bolding key words, moderate changes involved adding descriptors, modifying terminology, general rewording, and adding or removing examples, and major changes involved complete revision of the item.  69  4.3  Results  4.3.1 Participants The seven participants had a mean (±SD) age of 49.6 years (±16.0) and a mean (±SD) of 10.9 (± 8.3) years of experience using a manual wheelchair. The sample consisted of four males and three females; five individuals had paraplegia resulting from spinal cord injury, one had multiple sclerosis and one had rheumatoid arthritis. Refer to Table 4.1 for more a more detailed description of the participants. Table 4.1 Participant characteristics and number of problem indicators per behavior code per participant Age  Sex  Years of  Diagnosis  Wheelchair Experience  Participant  Clarification *  Qualified *  Inadequate *  1  55  M  5  Paraplegia  4  3  7  2  52  F  14  Paraplegia  6  24  3  3  47  F  28  Paraplegia  17  11  6  4  27  M  6  Paraplegia  4  4  5  39  F  11  Multiple Sclerosis  3  8  3  5 6  48  M  7  Paraplegia  0  5  7  7  79  M  5  Arthritis  1  10  6  Mean (SD)  49.6 (16.0)  5.0 (5.7)  9.3 (7.2)  5.3 (1.7)  10.9 (8.3)  * Note: „clarification‟ = participant asks for repeat or clarification of item or makes statement indicating uncertainty about item meaning; „qualified‟ = participant gives answer that meets item objective but is qualified to indicate uncertainty about accuracy; „inadequate‟ = participant gives answer that does not meet item objective.  70  4.3.2 Application of behavior codes Overall, 54 of 62 items (87%) on the WheelCon-M had at least one problem indicator. The pattern of problem indicators varied. Some items had only one problem indicator while other items had multiple problem indicators in more than one behavior code. Table 4.1 presents the number of problem indicators per behavior code per participant. There were two participants (# 2 and 3) who provided think aloud responses that were heavily coded as answers requiring clarification and/or qualification. Interestingly, these two participants had the highest number of years of wheelchair experience in comparison to the other five participants. Twenty-three items had „clarification‟ problems. For instance, one participant queried “In my house?” to the item “How confident are you moving from your wheelchair to the toilet?” Thirty-five items had „qualification‟ problems. An example of this type of problem occurred when one participant answered “If the grass is short, not thick like at Jericho Park I can do it.” to the item “How confident are you moving your wheelchair over grass?”. Twenty items had „inadequate answer‟ problems. For example, to the item “How confident are you moving your wheelchair around furniture in your own home?” one participant answered “I‟m pretty good at getting around furniture, but not heavy things... it would be pretty hard to move a table.”. Kappa values ranged from 0.07 to 1.00 with 51/62 (82.2%) of the values representing excellent agreement (≥ 0.75). Table 4.2 describes each WheelCon-M item, the number of problem indicators per behavior code for each item and kappa values.  71  Table 4.2 Problem indicators and intra-rater Kappa scores for the WheelCon-M items  Original Items (Version 2.0) Modified Items (Version 2.1) As of now, how confident are you moving your wheelchair: 1. around furniture in your home? around furniture in your home? 2. over carpet? 3. over thresholds (e.g. the lip into your over thresholds, such as between rooms? house or onto your patio)? 4. over grass? over freshly mowed grass? 5. through snow? along a paved sidewalk that is cracked 6. along a bumpy sidewalk? and uneven? 7. along a sidewalk that has potholes? through a pothole on a sidewalk? 8, along a gravel path or driveway? along a level path with unpacked gravel? 9. up a curb cut? 10. down a curb cut? up a standard height curb without a curb 11. up a curb with no curb cut? cut? down a standard height curb without a 12. down a curb with no curb cut? curb cut? 13. across the street at a crosswalk with across a street with light traffic, at a no traffic lights? crosswalk without traffic lights? 14. across the street at a crosswalk with across a street with traffic, at a crosswalk traffic lights? with traffic lights? 15. up a gentle slope? up a standard ramp? 16. up a steep slope? 17.down a gentle slope? down a standard ramp? 18.down a steep slope? down a steep slope and stopping as soon 19.down a steep slope and then stopping? as you are off the slope?  Kappa  Clarification*  Qualified*  Inadequate*  (0-7)  (0-7)  (0-7)  .80 1.00  0 0  0 3  1 0  0.91  0  2  2  1.00 1.00  0 0  5 2  0 0  0.82  1  1  0  0.82 1.00 0.64 1.00  0 1 0 0  2 4 2 1  1 1 0 0  1.00  1  3  0  1.00  0  2  0  1.00  0  2  0  1.00  0  0  0  1.00 1.00 0.81 0.82  1 0 0 0  1 1 0 1  0 0 0 0  1.00  1  2  0 72  Original Items (Version 2.0) Modified Items (Version 2.1) 20.through a crowded mall? 21. through a store with little space through a store with just enough space between the aisles? between the aisles for your wheelchair? 22. in tight spaces, such as elevators? 23. through an elevator door? 24. over a drainage grate then up a curb cut? 25. down a curb cut then over a drainage grate? 26.down a curb cut then through a puddle? 27. through a puddle then up a curb cut? 28. through slush then up a curb cut? 29. down a curb cut then through slush? 30. through snow then up a curb cut? 31. down a curb cut then through snow? 32. through a doorway you have just opened and then closing the door behind you? 33. through a doorway with a spring loaded door? As of now, how confident are you in doing the following activities? 34. moving from your wheelchair to your moving from your wheelchair to your bed? bed? 35. moving from your wheelchair to your moving from your wheelchair to your toilet? toilet? 36. moving from your wheelchair to your moving from your wheelchair to your bathtub or shower? bathtub or shower? 37. moving from your wheelchair to your moving from your wheelchair to your car? car?  Clarification*  Qualified*  Inadequate*  (0-7) 0  (0-7) 0  (0-7)  1.00 1.00  0  6  0  1.00 0.91  0 0  0 1  1 0  1.00  1  1  0  1.00  0  1  0  0.29  0  1  0  0.07 1.00 0.64 1.00 0.27  0 1 0 0 0  1 2 2 1 1  0 0 0 0 0  0.82  0  3  1  0.82  0  1  0  0.82  0  1  0  0.64  2  2  0  1.00  1  0  0  1.00  0  0  0  Kappa  0  73  Original Items (Version 2.0) Modified Items (Version 2.1) 38. moving from the floor to your wheelchair by yourself? 39. making a meal while using your wheelchair? 40. moving your wheelchair on or off public transportation? 41. carrying a hot drink while moving in your wheelchair? 42. managing toileting activities in public bathroom facilities? 43. doing leisure activities, such as going to church or clubs? 44. carrying items, such as groceries, while using your wheelchair? As of now, how confident are you that you: know what your wheelchair can and can‟t do, separate from your own abilities? For 45. know the capabilities of your example, a wheelchair with rear anti-tips wheelchair regardless of your own skill? in place is not able to go up a standard curb, even if the individual is able to do this skill. 46. can identify a maintenance problem can recognize a maintenance problem with your wheelchair (e.g., low tire with your wheelchair, such as low tire pressure)? pressure? 47. can figure out how to move your can figure out how to move your wheelchair in new situations (e.g., through wheelchair in new situations? snow or over a large threshold)? 48. can tell someone how to move your can tell someone how to move your wheelchair if it gets stuck, such as in a wheelchair if it gets stuck? pothole in the sidewalk?  Kappa  Clarification*  Qualified*  Inadequate*  (0-7)  (0-7)  (0-7)  1.00  1  1  0  1.00  0  0  0  1.00  1  1  0  1.00  1  0  0  0.82  0  1  0  0.29  0  2  4  1.00  0  0  0  0.81  3  0  0  1.00  2  2  0  0.64  1  0  3  0.92  2  0  1  74  Original Items (Version 2.0) Modified Items (Version 2.1) 49. can tell a stranger how to help you safely get back into your wheelchair if you tip over? 50. can tell a cab driver how to fold/unfold your wheelchair making sure all parts are taken off and put back on properly? As of now, how confident are you that you can: 51. advocate for changes to your advocate for changes to your wheelchair, wheelchair, such as a different cushion or such as a different cushion to be more a change in wheel position? comfortable? 52. advocate for physical changes in your advocate for changes in your community, community environment, such as such as having a curb cut to improve your sidewalks fixed or curb cuts added? accessibility? 53. advocate for physical changes in your advocate for changes in your home, such home environment, such as doorways as doorways widened or a ramp installed? widened or a ramp installed? 54. advocate for physical changes to your advocate for changes to your place of place or work or school, such as work or school, such as modifications in modifications in the bathroom? the bathroom? 55. put others at ease if they are uncomfortable around a person who uses a wheelchair? 56. comfortably dispel „disability myths‟, comfortably correct other people‟s wrong such as needing help or needing people to assumptions about people who use speak louder just because you are in wheelchairs? wheelchair? 57. ask people to move out of your way while moving in your wheelchair though a crowded area such as a mall or street crossing?  Kappa  Clarification*  Qualified*  Inadequate*  (0-7)  (0-7)  (0-7)  1.00  1  0  1  1.00  0  0  2  1.00  1  0  0  1.00  0  0  0  1.00  0  0  0  1.00  0  0  1  1.00  0  0  1  0.82  4  0  2  1.00  0  0  1  75  Original Items (Version 2.0) 58. none (new item)  Modified Items (Version 2.1) present the self-image you want others to see while doing regular daily activities in public?  Kappa  Clarification*  Qualified*  Inadequate*  (0-7)  (0-7)  (0-7)  59. do wheelchair activities that are present yourself as you wish to be seen challenging to you where there is a risk of while doing challenging activities in 3 0 0.64 failure while out in public, such as in public? social situations with peers or colleagues? 60. do wheelchair activities in social Present the image you want in situations situations with peers or colleagues when where there is a desire or need to impress 0.82 1 0 you are concerned about the speed or others, such as during a job interview? quality of your performance? 61. manage any anxious or nervous feelings you may have when moving your 0 0 0.64 wheelchair in new environments? 62. manage any anxious or nervous feelings you may have when trying new manage any anxious or nervous feelings or more difficult wheelchair skills in the you may have when trying new or more 1.00 1 0 community, such as going up or down difficult wheelchair skills? ramps or curb cubs, or crossing a busy intersection? 63. stay calm in stressful situations, such stay calm in stressful situations, such as if as if your wheelchair stops working your wheelchair were to get stuck or your 2 0 0.64 properly or gets stuck? tire were to blow out? * Note: „clarification‟ = participant asks for repeat or clarification of item or makes statement indicating uncertainty about item meaning; „qualified‟ = participant gives answer that meets item objective but is qualified to indicate uncertainty about accuracy; „inadequate‟ = participant gives answer that does not meet item objective. Bolded items = >0.75 or less than excellent agreement.  4  3  3  3  1  76  4.3.3 Item revision Table 4.2 also presents the revisions for 31of the 62 WheelCon-M items. These items required varying degrees of refinement. Sixteen items (#1, 10, 16, 18, 22, 23, 25, 26, 27, 33, 41, 42, 44, 51, 55, and 57) had only one problem indicator. Of these 16 items, two were changed (#1 and #51). Fifteen items had more than one problem indicator (#2, 5, 9, 24, 28, 29, 30, 31, 32, 38, 40, 43, 49, 50, and 61), but were not changed. Five items had no problem indicators (#20, 37, 39, 52, and 53); however, three of these five items were changed. One item was added (#58). Minor changes involved bolding the word „your‟ in five WheelCon-M items (#1 and #34-37). Items #34-37 “How confident are you moving from your wheelchair to your bed, your toilet, your tub, and your car?”, represented examples of a problem involving not just one, but a sequence of items. In such situations, even if problem indicators were not present for all items (e.g., item # 37) each item in the sequence was refined in order to maintain consistency of item interpretation. Moderate changes were made to 24 WheelCon-M items. For 10 items (# 4, 6, 7, 8, 11, 12, 15, 17, 19, and 46), changes included clarifying vague terms by either adding descriptors or modifying terminology. For example, the item “How confident are you moving your wheelchair over grass?” was changed to “…over freshly mowed grass?” to be consistent with wording that was used by the participants. Moderate changes, including general rewording and adding or removing examples, were also made to 14 items (#3, 13, 14, 21, 45, 47, 48, 51, 52, 53, 54, 56, 62, and 63). For instance, “How confident are you that you can figure out how to move your wheelchair in new situations (e.g., through snow or over a large threshold)?” was simplified by removing the example. This type of modification was done in direct response to participants focusing on the specific examples rather than the general item. 77  Major changes involved the complete revision of two items (#59 and 60) as well as the addition of one item (#58). For instance, “How confident are you that you can do wheelchair activities in social situations with peers or colleagues when you are concerned about the speed or quality of your performance?” was changed to “… present the image you want in situations where there is a desire or need to impress others, such as during a job interview?”. 4.4  Discussion  The think aloud process proved to be a useful tool to understand how participants perceived and interpreted each item on the newly developed WheelCon-M, version 2.0. Information gathered using this method was instrumental in identifying WheelCon-M items that were problematic for the participants and also allowed for further refinement of our initial intention regarding the concepts and constructs that we attempted to measure. Subsequently, items were refined to increase the likelihood that they will be interpreted as we intended. The importance of assessing response process in the early development of a new tool, particularly prior to psychometric testing, is emphasized by the number (54/62) of WheelCon-M items in version 2.0 that had problem indicators. Our Delphi research indicated that 95% of the items were „clearly worded‟, based on ≥80% consensus,117 yet clearly we would have been premature moving forward with formal psychometric testing. Findings from the current research highlight the important distinction between an item being „clearly worded‟ and being „interpreted as intended‟. These findings also demonstrate how assessment of response process builds upon conventional pilot testing of questionnaires, which typically identifies obvious problems with questionnaires including length, flow, salience, and ease of administration,118 but not more obscure problems related to interpretation of items. Both conventional pilot testing and assessment of response  78  process are important steps in the development of outcome measures that clinicians and researchers should look for when choosing measures to use. None of the participants‟ responses were coded under „interruption with answer‟ (as we did not read the items to the participants), „don‟t know‟, or „refusal to answer‟. All participant responses were distributed across the three behavior codes that indicated a problem, („clarification‟, „qualified‟, and „inadequate‟). This distribution indicated that there were a variety of problems with the items including unclear terms, ambiguity, poor item wording, and poor construct identification. It was interesting that the two participants with the highest number of years of wheelchair experience had the most „clarification‟- and „qualification‟-coded think aloud responses. It may be that these individuals had encountered a greater variety of experiences in their wheelchairs and so had more questions regarding the details of the items. The cause of the problem with the item was often readily apparent and easily addressed. For example, the need for a qualifier in the item “How confident are you moving your wheelchair over grass?” was obvious by the five requests for qualification, including questions such as “do you mean freshly mowed grass?”. When participants provided suggested wording, revision of the item was straightforward. Interestingly, terms that the researchers felt would be clear sometimes resulted in problems for participants. For example, the word bumpy was problematic in the item “How confident are you moving your wheelchair along a bumpy sidewalk?”. Confusion was evident by responses such as “is it unpaved?” or “does it mean potholes?”. Such problems were resolved by adding descriptors, modifying terminology, or rewording the item. On the other hand, for the two items that required major changes resulting in a full revision (#59 and #60) the cause of the problem was complex and involved ambiguity in the actual construct  79  we were intending to measure.131 For these two items, the think aloud responses were completely unrelated to the construct as intended thereby warranting a review of the interview transcripts from the item generation phase of the WheelCon-M.117 After this review, it became apparent that there was a disconnect between the construct as presented in the interview data and our representation of it. It was clear that more information was required to elucidate this construct in order to develop items that better fit the intended meaning. A review of the literature led to acquiring knowledge about the construct self-presentation efficacy111, 112 which was congruent with the construct that we were attempting to measure. Based on our new understanding, the two items (#59 and #60) intending to cover this construct were completely revised and a new item (#58) was added. There were two main reasons for not refining the 15 items that had more than one problem indicator. First, for certain items (#2, 5, 9, 40, and 43), we decided to leave the item in its current form as we felt it was important for individuals who complete the WheelCon-M to respond to the item using their own specific frame of reference. For instance, the item “How confident are you moving your wheelchair through snow?” may mean very different things depending upon one‟s location. If an individual only ever encounters a skim of snow, then we recommend using that frame of reference. On the other hand, if an individual constantly encounters many inches of snow, then that would be the frame of reference to which to refer. Second, certain items are double barrelled (#24, 28, 29, 30, 31, 32, and 50) containing more than one issue. We made the decision to leave the items in their current form based on data from the WheelCon-M item generation phase. During the interviews, many participants commented on high levels of confidence to complete certain skills or overcome specific aspects of the physical environment separately, but low levels of confidence when certain skills or aspects of the environment 80  occurred in sequence. Therefore, we felt it was important to maintain these items in their current form. The remaining three items (#38, 49, and 61) with more than one problem indicator were not refined because, despite the problem indicators, we felt the participants‟ responses indicated an accurate understanding of the item. This research has several shortcomings. The sample consisted of experienced wheelchair users, therefore the perspectives of wheelchair users with less experience is not represented. The verbatim written recording of the think aloud responses, rather than audio recorded transcripts was also a methodological drawback. As well, the think aloud approach itself is not without its limitations, two of which have relevance to this research. One limitation is that participants may edit their verbal thought processes in order to conform to perceived expectations.118 This concern is of particular importance when measuring confidence because it can be a highly sensitive topic for some individuals. Second, think aloud results cannot provide information about the size or effect of a problem, which can influence the decision on whether or not to modify an item difficult.118 This limitation adds an element of subjectivity and bias into the decision regarding both whether to modify an item and how to modify the item. To conclude, the think aloud approach proved highly revealing during the early stages of the development of the WheelCon-M. Without this assessment, responses to some items would have, on the surface, indicated that the items were understood as intended when, in fact, they were not. We anticipate that the revised WheelCon-M, version 2.1. will be a more reliable and valid tool for the measurement of confidence with manual wheelchair use.  81  5  5.1  Reliability and Validity of a Measure for the Assessment of Confidence with Manual Wheelchair Use (WheelCon-M) e Introduction  Population estimates suggest that the number of people who require a wheelchair for mobility is approximately 65 million worldwide.9 Flagg10 suggests that of the 3.86 million people who require a wheelchair in the United States, approximately 70% use a manual wheelchair. According to Shields,11 over half of Canadian wheelchair users require assistance getting around in their wheelchair, and approximately 20-40% more require assistance with completing activities of daily living. There is a growing body of literature that explores factors that impact using a wheelchair, which includes physical characteristics of the wheelchair user,42-50, 134 aspects of the wheelchair itself,6772 50  the environment,55, 73-77, 135 and wheelchair skills training.8, 51,136 Interestingly, variables in  predictive models seldom account for more than a modest amount of variance in wheelchair use.63, 80, 81, 137 Since self-efficacy, or confidence, is the most important predictor of behavior in general, 2 it stands to reason that it may have an impact on wheelchair use. Recent qualitative research supports this notion, as a number of situations that challenge confidence with wheelchair use have been identified in areas including negotiating the physical environment, performing activities of daily living, problem solving, advocating, managing social situations and managing emotions.117 The terms self-efficacy and confidence are often used interchangeably in the literature and will be used interchangeably in this paper.  e  A version of this chapter was submitted for publication. Rushton PW, Miller WC, Kirby RL, Eng JJ. Reliability and Validity of a Measure for the Assessment of Confidence with Manual Wheelchair Use (WheelConM). (submitted Oct. 29, 2010).  82  Self-efficacy refers to beliefs in one‟s capabilities to organize and execute the courses of action required to produce given attainments.2 It has been found to be a stronger determinant of behavior than one‟s actual skills or abilities.103 Judgments of self-efficacy play a major role in determining whether to perform a behavior, the degree of effort to invest, and the length of time one will persist in a given activity. The stronger an individual‟s self-efficacy, the more vigorous and persistent his or her efforts will be. In contrast, individuals tend to avoid engaging in tasks for which their self-efficacy is low.2 It is likely that low confidence with wheelchair use might lead to self-imposed restrictions which can impact activity and participation in daily life. In addition to facing a wide variety of situations that challenge confidence, there is reason to believe that wheelchair users may experience low confidence with wheelchair use based on a number of factors. Over 90% of Canadian wheelchair users are adults and older adults11 and being older has been associated with low confidence in behaviors such as exercise,83 driving,84 and balance.85-87 There are more female than male wheelchair users11 and females have demonstrated lower confidence in exercise,83 driving,84 and balance.85-87, 138 In general, wheelchair users are lacking in wheelchair skills training in which clinicians or peers often model the performance of skills.139, 140 Those who do not receive this important aspect of rehabilitation may be missing two important components of self-efficacy: learning through the modeling of others and performance accomplishment.2 Further, wheelchair users‟ opportunities to attempt and practice wheelchair-related skills and activities in day-to-day life are often limited by an excess of social support in the form of physical assistance.141, 142 Support provided in this way may restrict performance accomplishments and negatively reinforce efforts.2 As well, depression and anxiety are associated with wheelchair use,89, 90 both of which negatively influence self-efficacy.2 83  The array of situations that challenge confidence with wheelchair use in combination with the potential of wheelchair users to experience low confidence prompted us to examine this area in an effort to identify an important, but invisible, barrier to wheelchair use. Recently, a scale designed to measure confidence with manual wheelchair use, the Wheelchair Use Confidence Scale (WheelCon-M), was developed.117 The purpose of this research was to assess the reliability and validity of the WheelCon-M. Reliability was assessed using a test-retest design. The International Classification of Functioning, Disability, and Health (ICF)40 was used as a conceptual framework to assess validity. As a comprehensive and universally accepted framework used to classify and describe whole health experience, the ICF is based on an integrative model of functioning and is comprised of two parts, each with two components. Part one describes functioning and disability and consists of body functions and structures and activities and participation. Part two describes contextual factors and consists of environmental and personal factors. To assess validity, we selected variables from all components of the ICF and explored hypothesized relationships between these variables and the WheelCon. 5.2  Methods  5.2.1 Design This test-retest reliability and validation research assessed the psychometric properties of the WheelCon-M. 5.2.2 Participant recruitment and screening Participants were recruited from three major cities across Canada (Halifax, Hamilton, and Vancouver). Letters of information were mailed to potential participants on a rehabilitation research volunteer database and hand delivered or mailed to potential participants who attended rehabilitation services at local rehabilitation centers and a university-based rehabilitation 84  gymnasium. Advertisements were posted in facilities that manual wheelchair users frequent (e.g., fitness facilities, community centers), as well as online via e-bulletins and community organization websites, such as the Canadian Paraplegic Association. To be included in the research, participants had to be at least 19 years of age, use a manual wheelchair as their primary means of mobility (at least 4 hours per day), have at least 6 months of experience using a manual wheelchair, and live in the community. Folstein‟s Mini Mental State Exam (MMSE) was used to screen for cognitive impairment using a cut-off score of ≥24. The MMSE has been reported to be a reliable and valid tool.128, 143 Participants were excluded if they were unable to read and write in English. Ethics approval was obtained by local university or hospital ethics boards at each of the three sites. 5.2.3 Primary measure Wheelchair Use Confidence Scale (WheelCon-M, version 2.1) (Appendix H) The WheelCon-M is a self-report questionnaire designed to measure confidence with manual wheelchair use.117 The WheelCon has evolved since its initial development. Version 1.0 was an 84-item scale generated using qualitative interviews.117 Items were selected and its content validated using a Delphi survey which reduced the number of items to 62 (version 2.0).117 Next, a „Think Aloud‟ process was used to assess response processes to ensure WheelCon-M items were interpreted as we had intended. This process resulted in changes in 31 of 62 items and the addition of one item (version 2.1).144 The WheelCon-M version 2.1 used in this research has 63 items (listed later) and asks individuals to rate their confidence level using a 0 (not confident) 100 (completely confident) response scale. For each item, the participant is asked “As of now, how confident are you …” The items explore wheelchair use related to negotiating the physical environment, performing activities in the wheelchair, knowledge and problem solving, advocacy,  85  managing social situations, and managing emotions. The WheelCon-M is scored by summing the ratings for each item and dividing by the total number of items. The total score for the scale ranges from 0 to 100, with higher scores representing higher manual wheelchair use confidence. 5.2.4 Comparison measures Measures used in this research are presented according to the components of the ICF. We chose variables based on a-priori hypotheses (found in data analysis section) that the characteristic was likely to be related to confidence with wheelchair use. 5.2.4.1 Personal factors Demographic, Clinical, and Wheelchair-Usage Data (Appendix G) Demographics were captured to describe the sample and also because, as described in the introduction, age, sex, and experience are known to influence self-efficacy. We administered a short questionnaire to capture demographics (e.g., age, sex) and information related to wheelchair use (e.g., years of experience using a wheelchair). As well, we asked a number of questions to determine if there had been any major changes in health (e.g., related to illness, visits to doctor, changes to medications) or ability to use their wheelchair over the one week retest period. This information was used to explain substantial changes in scores that may have occurred during the retest period. 5.2.4.2 Environmental factors Interpersonal Support Evaluation List (ISEL) (Appendix I) Social support has been positively associated with self-efficacy.145, 146 For wheelchair users however, too much social support, in the form of physical assistance,141, 142 may decrease selfefficacy by limiting opportunities to attempt and practice wheelchair related skills and activities. In this research, perceived social support was measured using the 12-item Interpersonal Support 86  Evaluation List (ISEL)147 which measures perceived social support using three subscales: tangible support, appraisal support, and belonging support. Respondents rate each item on a 4point Likert scale according to the extent to which the statements are true of his or her circumstances (0=definitely false to 3=definitely true). In order to control for desirability, half of the items are worded to ask about the presence of positive support, and half ask about negative support. Item scores are summed together to yield a total score ranging from 0-36.147 The ISEL has demonstrated construct validity with the Community Integration Measure (r=0.42)148 and the Sense of Support Scale (r=0.78).149 Functioning Everyday with a Wheelchair (FEW) (Appendix J) Research has shown that a high percentage of wheelchair users using ill-fitting wheelchairs had difficulty with wheelchair skills, transferring, and general wheelchair propulsion.13 It stands to reason that a similar relationship might exist between wheelchair fit and confidence with wheelchair use. We measured this construct using the Functioning Everyday with a Wheelchair (FEW), a self-report measure of perceived user function related to seating and mobility technology. The FEW addresses 10 items: (1) stability, durability, and dependability; (2) comfort needs; (3) health needs; (4) operating the wheelchair; (5) reaching and carrying out tasks at different surface heights; (6) transfers; (7) personal care tasks; (8) indoor mobility; (9) outdoor mobility; and (10) personal/public transportation.27, 28 Items assess the match between the wheelchair user‟s needs and the wheelchair itself and how the technology enables the user to perform functional tasks independently, safely, and efficiently. A 7-point response scale ranging from 6=completely agree to 1=completely disagree is used; a response of 0 is given if the item does not apply and summary scores range from 0-60. Test-retest reliability (ICC=0.86, p<0.001)  87  and content validity (98.5% of consumers‟ seating mobility goals captured) have been reported for this measure.27 5.2.4.3 Activities and participation Wheelchair Skills Test (WST) 4.1 (Appendix K) Self-efficacy theory supports a positive association between self-efficacy beliefs and physical ability.2 Over half of the items on the WheelCon-M are related to negotiating the physical environment; therefore, we anticipated that wheelchair skill would be associated with confidence with wheelchair use. To measure this area, we used the Wheelchair Skills Test (WST) for manual wheelchair users, version 4.1. The WST is a 32-item objective evaluation of an individual‟s ability to perform various wheelchair skills spanning the spectrum from those as basic as rolling the wheelchair forward to those as difficult as ascending/descending stairs. The WST total performance score = number of passed skills/number of possible skills X 100%.36 The psychometric properties of the WST have been reported34, 35, 150 and it has been used as an outcome measure in a number of studies.8, 51, 53, 54, 70 Wheelchair Skills Test – Questionnaire Version (WST-Q) version 4.1 (Appendix K) In addition to the association between objective wheelchair skill and confidence with wheelchair use, we were also interested in the association between subjective perception of wheelchair skill and confidence with wheelchair use. We used the Wheelchair Skills Test Questionnaire version (WST-Q) 4.1, a semi-structured interview version of the WST 4.1, to assess this relationship. In this measure, the individual is asked whether he/she believes themselves to be capable of performing specific wheelchair skills and, if so, how he/she would perform the skill.36 It is scored using the same process as the WST 4.1.36 The time required to complete the WST-Q is  88  21±4.7 minutes.151 In a previous study, the WST-Q demonstrated a very high correlation (r=0.91) with the WST version 2.4.151 In this research, the same correlation was found between the WST 4.1 and the WST-Q 4.1 (ρ=0.91). Barthel Index (BI) – Postal Version (Appendix L) Functional ability with basic activities of daily living (ADL) has been associated with selfefficacy in other areas of mobility.138 Given the WheelCon-M items related to basic ADLs, we felt that there would also be an association between the WheelCon-M and functional ability with ADLs. To measure this area, we used the Barthel Index (BI), a 10-item self-report measure of one‟s level of functional independence related to specific activities of daily living tasks including bathing, climbing stairs, dressing, mobility, transfers, feeding, toilet use, grooming, and bowel and bladder control.152 Responses are scored from dependent (0) to independent (15). A total score is derived by summing all responses. Scores range from 0 to 100 with higher scores indicating greater functional independence. Construct validity of the BI has been demonstrated with the Motricity Index153 (r=0.77), as well as high inter-rater reliability (Kendall's coefficient of concordance W= 0.93).154 The BI postal version demonstrated moderate reliability with κ statistics ranging from 0.49-0.90 for the 10 items.152  The Life Space Assessment (LSA) (Appendix M) For individuals who have mobility disability, distance travelled increases with wheelchair use.137 We expected confidence with wheelchair use to be associated with distance travelled, as wheelchair users who have higher self-efficacy would be less likely to worry about wheeling in unfamiliar environments. We measured distance travelled using the Life Space Assessment (LSA), which measures frequency and independency of mobility across a continuum of  89  environments or life-space levels through which a person reports moving during the prior four weeks.155 The life-space levels range from “other rooms of your home besides the room where you sleep” to “places outside your town”. To obtain a composite score, the frequency and independence values of each component are multiplied and the scores for each life-space level summed, resulting in a range of scores from 0-120.155 Higher scores indicate a higher life-space level achieved. Test-retest reliability has been demonstrated (ICC = 0.96) and validity confirmed (Spearman‟s ρ= 0.60) with the Physical Performance Measure for the composite measure.`155 5.2.4.4 Body functions and structures The Hospital and Depression Scale (HADS) (Appendix N) Bandura`s theory proposes that physiological and affective states are important sources of selfefficacy.2 If physiological arousal, or anxiety, is interpreted as a sign of vulnerability to poor performance (rather than a common transitory reaction that everyone experiences from time to time), it can lower self-efficacy. Similarly, a negative mood, or depression, can diminish selfefficacy as it activates thoughts of past failings, rather than accomplishments.2 We used the Hospital Anxiety and Depression Scale (HADS) to measure anxiety and depression. The HADS is a 14-item self-report measure used to screen for anxiety (7 items) and depression (7 items).156 Items are scored on a 4-point scale from 0 (not present) to 3 (considerable). The item scores are added, giving subscale scores for anxiety and depression which range from 0 to 21. An overall composite score is derived by summing the two subscale scores. A lower score indicates less anxiety/depression. Cronbach‟s α scores have been reported to range from 0.68-0.93 for HADSAnxiety and from 0.67-0.90 for HADS-Depression. A correlation of r=0.71 was found between the HADS-Depression and the Beck Depression Inventory.157A correlation of r=0.81 was found between the HADS-Anxiety and the State-Trait Anxiety Inventory.158  90  5.2.5 Data collection Volunteer participants who met the research inclusion/exclusion criteria were provided with two appointments for data collection. At baseline, the MMSE (Appendix F),128 demographic questionnaire, and WheelCon-M, version 2.1 were administered. At follow-up, one week later, the WheelCon-M was administered first. The remaining seven measures were completed in random order, with the WST-Q always preceding the WST to ensure subjective perception of wheelchair skill was not influenced by objective measurement. Participants used their own manual wheelchairs for all testing. Assistance was provided for participants who had motor or vision impairments that prevented independence with recording their own answers. All research assistants were trained in the administration and scoring of the outcome measures by the primary investigator (PWR). Data were entered into an Excel spreadsheet and data entry re-checked by another member of the research team. 5.2.6 Data analysis Based on the work of Donner and Eliasziw,159 we calculated that a sample size of 42 would provide sufficient power to assess our a priori hypothesis that the reliability of the WheelCon-M would exceed an ICC of 0.8, given an α of 0.05 and a β of 0.80. To test our a priori hypotheses that the WheelCon-M would have correlations ranging from 0.30-0.50 with other variables, we determined that given an α of 0.05 and a β of 0.80, 30-80 participants would be needed based on Table C.5.2 in Portney and Watkins.160 Descriptive statistics were used to provide a summary of all variables. Normal distribution of the data was tested with the Shapiro-Wilk Test. To provide normative data based on the sample, mean WheelCon-M values were derived relative to demographic factors.  91  5.2.6.1 Reliability Internal consistency was calculated using Cronbach‟s α and stepwise deletion was performed to determine if α changed in the absence of any of the items. We hypothesized that Cronbach‟s α would be ≥ 0.80 for the WheelCon-M. According to Nunnally and Bernstein,161 an α of 0.80 is acceptable when comparing groups. One-week retest reliability was evaluated using intraclass correlation coefficient (ICC1,1) with 95% confidence intervals, calculated using one-way ANOVA.160 Previous work by Fleiss and Cohen133 has demonstrated the equivalence of the ICC and kappa in measuring reliability. This demonstration of the robustness of the ICC supports its use in measuring the test-retest reliability of the WheelCon-M, regardless of whether the data are normally distributed or skewed. However, the use of ANOVA with non-normally distributed data is problematic with respect to inference regarding the estimated parameters.162 Therefore, in order to provide a more accurate confidence interval, a bootstrap procedure with 1000 bootstrap replications was conducted and a bias-corrected and accelerated (BCa) confidence interval163 reported. Streiner and Norman recommend that a tool with good reliability when studying groups of people should have an ICC exceeding 0.85.116 The Bland-Altman limits of agreement plot was also used to provide a visual assessment of how individual WheelCon-M scores varied between baseline and follow up.164 This within-test agreement helped to identify if any bias existed. Ideally, the data points would be distributed evenly along the „zero line‟ if there were no ceiling or floor effects, and an equal number of points would lie above and below if there was no pretest/post-test bias. Finally, the data points should fall within the 95% confidence intervals. Floor and ceiling effects were further evaluated by determining the percentage of participants scoring 0% or 100% for each item and for the total  92  WheelCon score. As per Andresen‟s recommendation, ≥20 % of participants scoring either 0% or 100% represents floor and ceiling effects respectively.165 The standard error of measurement (SEM) was calculated to provide an indication of the minimal change in score that would reflect a meaningful change beyond measurement error for a group of individuals.160 Change scores that exceeded this amount were considered to indicate real change to wheelchair confidence. The smallest real difference (SRD) was also calculated as the smallest measurement change that can be interpreted as a real difference for a single individual.166 This estimate of responsiveness provides an indication of how well the WheelConM would be able to detect a clinically relevant change. 5.2.6.2 Validity The validity of the WheelCon-M was determined by testing hypotheses generated when considering how the measure would be expected to correlate with other measures. Spearman‟s ρ correlation coefficients were calculated to determine the association between the WheelCon-M and the comparison construct. The strength of the correlation coefficients was interpreted according to Domholdt‟s167 classification where a ρ value ≤ 0.25 indicates a weak correlation, a ρ between 0.26 and 0.49 a low correlation, a ρ between 0.5 and 0.69 moderate correlation, and high correlation was considered when a ρ value was ≥ 0.7. We hypothesized that the WheelConM would have: a positive moderate (ρ ≥ 0.5) correlation with the WST, WST-Q, BI, and LSA; a positive low (ρ ≥ 0.4) correlation with the FEW and years of experience using the wheelchair; a positive low (ρ ≥ 0.3) correlation with the ISEL; and a negative moderate (ρ ≥ -0.5) correlation with the HADS and age. The remaining hypotheses were evaluated using Mann-Whitney and Kruskal-Wallis tests as follows: men would have higher WheelCon-M scores than women (Mann-Whitney test); total WheelCon-M scores would be affected by age, with scores highest in 93  the younger cohorts when compared to older cohorts (Mann-Whitney test); and total WheelConM scores would be affected by years of wheelchair experience (Kruskal-Wallis test). Age was divided into two groups < 50 and ≥50 and years of wheelchair experience was categorized into tertiles (< 6 years, 6-20.5 years, and > 20.5 years) for even group comparisons. The level of statistical significance was set at p<0.05. All analyses were completed using SPSS version 14.1, except for the bootstrapping which was completed using Stata version 11. 5.3  Results  5.3.1 Sample Demographic, clinical, and wheelchair-usage characteristics of the sample are presented in Table 5.1. The sample of 83 participants had a mean age of 49.6 ±13.7 years (range 21-80). Men accounted for 70% of the participants and most of the total sample had a diagnosis of spinal cord injury (60.3%). The WheelCon-M scores demonstrated a negatively skewed distribution and the non-normal distribution was confirmed by the Shapiro-Wilk test (p value < 0.001). The WheelCon-M took a mean of 21.7 ± 7.3 minutes to complete and had a mean score of 80.6 (±15.6). Mean scores of individual WheelCon items ranged from a low of 38.5 for As of now, how confident are you moving your wheelchair up a standard height curb (15cm) without a curb cut? to a high of 93.7 for As of now, how confident are you moving your wheelchair over thresholds, such as between rooms? (Table 5.2). The participants were high functioning in terms of their ability to perform basic ADLs, had on average „borderline abnormal‟ ranges of anxiety and depression156 and a fair degree of social support.  94  Table 5.1 Demographic, clinical, and wheelchair-usage characteristics of the sample Demographics  Values  WheelCon-M Mean ± SD  Age, mean (SD) years < 50 (n=40) ≥ 50 (n=43) Sex Male % Female % Diagnosis % Spinal cord injury (paraplegia) Spinal cord injury (tetraplegia) Lower extremity amputation Multiple sclerosis Stroke Spina bifida Other Years with diagnosis, mean (SD)  49.6 (13.7) 37.7(7.8) 60.5(7.4)  85.3 ± 11.1 76.2±17.9  69.9 30.1  83.0 ± 12.9 75.0 ± 19.7  43.4 16.9 10.8 9.6 3.6 3.6 12.0 20.3 (14.6)  84.8 ± 11.7 81.9 ± 15.3 68.0 ± 24.9 72.6 ± 17.3 88.9 ± 7.5 79.6 ± 9.0 79.3±14.7  Years using wheelchair, mean (SD) < 6 (n=27) 6-20.5 (n=28) > 20.5 (n=28) Two hand method of wheelchair propulsion % Married or common-law % Other Education % Less than high school High school degree Post-secondary education SD=standard deviation  16.5 (13.8) 71.6 ± 19.2 84.2± 11.2 85.6 ±11.6 94.0 41.0 59.0  81.2±14.6 80.2±16.4  6.0 37.3 56.7  65.4±21.2 78.2±16.9 83.8±13.0  95  Table 5.2 Individual WheelCon-M item statistics WheelCon-M Item  % of group at 100  % of group at 0  As of now, how confident are you moving your wheelchair… 69.9 0 around furniture in your own home?  Median Min Max  100  20  100  over carpet?  59.0  0  100  20  100  over thresholds, such as between rooms?  69.9  0  100  30  100  over freshly mowed grass?  25.3  0  80  20  100  through snow? along a paved sidewalk that is cracked and uneven?  8.4  6.0  50  0  100  30.1  1.2  90  0  100  through a pothole on a sidewalk?  21.7  3.6  75  0  100  along a level path with unpacked gravel? across a street with light traffic, at a crosswalk without traffic lights? across a street with traffic, at a crosswalk with traffic lights?  18.1  0  70  2  100  34.9  1.2  85  0  100  56.6  1.2  100  0  100  up a standard ramp?  61.4  1.2  100  0  100  down a standard ramp?  66.3  1.2  100  0  100  up a steep slope?  18.1  4.8  70  0  100  down a steep slope? down a steep slope and stopping as soon as you are off the slope?  32.5  4.8  80  0  100  27.7  4.9  80  0  100  through a crowded mall? through a store with just enough space between the aisles for your wheelchair?  59.0  0  100  20  100  41.0  0  95  21  100  in tight spaces, such as elevators?  60.2  0  100  25  100  through an elevator door?  62.7  0  100  25  100  up a curb cut?  39.8  1.2  90  0  100  down a curb cut?  48.2  0  98  20  100  over a drainage grate and then up a curb cut?  25.3  4.8  80  0  100  down a curb cut then over a drainage grate?  25.3  4.8  80  0  100 96  % of group at 100  % of group at 0  through a puddle then up a curb cut?  32.5  2.4  85  0  100  down a curb cut then through a puddle?  32.5  0  90  5  100  through slush then up a curb cut?  12.0  3.6  70  0  100  down a curb cut then through slush?  16.9  1.2  70  0  100  down a curb cut then through snow?  8.4  3.5  62.5  0  100  through snow then up a curb cut?  3.6  6.0  50  0  100  9.6  31.3  30  0  100  26.5  20.5  60  0  100  53.0  0  100  10  100  39.8  3.6  90  0  100  65.1  1.2  100  0  100  57.8  1.2  100  0  100  56.6  4.8  100  0  100  51.8  2.4  100  0  100  13.3  24.1  50  0  100  59.0  4.8  100  0  100  43.4  8.4  90  0  100  32.5  7.2  85  0  100  44.6  3.6  90  0  100  50.6  1.2  100  0  100  43.4  1.2  95  0  100  53.0  3.6  100  0  100  WheelCon-M Item  up a standard height curb (15cm) without a curb cut? down a standard height curb without a curb cut? through a doorway you have just opened and then closing the door behind you? through a doorway with a spring loaded door? moving from your wheelchair to your bed? moving from your wheelchair to your toilet? moving from your wheelchair to your bathtub or shower? moving from your wheelchair to your car? moving from the floor to your wheelchair by yourself? making a meal while using your wheelchair? moving your wheelchair on or off public transportation? carrying a hot drink while moving in your wheelchair? managing toileting activities in public bathroom facilities? doing leisure activities, such as going to church or clubs? carrying items, such as groceries, while using your wheelchair? know what your wheelchair can and can't do, separate from your own abilities?  Median Min Max  97  WheelCon-M Item can recognize a maintenance problem with your wheelchair, such as low tire pressure? can figure out how to move your wheelchair in new situations? can tell someone how to move your wheelchair if it gets stuck? can tell a stranger how to help you safely get back into your wheelchair if you tip over? can tell a cab driver how to fold/unfold your wheelchair, making sure all parts are taken off and put back on properly? advocate for changes to your wheelchair, such as a different cushion to be more comfortable? advocate for changes in your community, such as having a curb cut added in your neighborhood to improve your accessibility? advocate for changes in your home, such as doorways widened or a ramp installed? advocate for changes to your place of work or school, such as modifications in the bathroom? put others at ease if they are uncomfortable around a person who uses a wheelchair? comfortably correct other people's wrong assumptions about people who use wheelchairs? ask people to move out of your way while moving in your wheelchair? present the self-image you want others to see while doing regular daily activities in public? present yourself as you wish to be seen while doing challenging activities in public? present the image you want in situations where there is a desire or need to impress others, such as during a job interview? manage any anxious or nervous feelings you may have when moving your wheelchair in new environments?  % of group at 100  % of group at 0  54.2  1.2  100  0  100  47.0  0  95  20  100  59.0  0  100  30  100  59.0  0  100  40  100  65.1  1.2  100  0  100  59.0  1.2  100  0  100  43.4  1.2  90  0  100  59.0  0  100  10  100  50.6  1.2  100  0  100  45.8  0  90  20  100  45.8  0  90  20  100  61.4  0  100  25  100  43.4  0  95  25  100  39.8  0  90  4  100  33.7  1.2  90  0  100  38.6  0  90  10  100  Median Min Max  98  WheelCon-M Item manage any anxious or nervous feelings you may have when trying new or more difficult wheelchair skills? stay calm in stressful situations, such as if your wheelchair were to get stuck or your tire were to blow out?  % of group at 100  % of group at 0  28.9  0  85  25  100  20.5  0  90  10  100  Median Min Max  99  5.3.2  Reliability  The 1-week retest ICC was 0.84 (95% BCa CI 0.70-0.92), the SEM was 5.9, and the SRD was 16.4. Cronbach‟s α coefficient was 0.92 and scaling using stepwise deletion revealed that α did not change by more than 0.0008 with the exclusion of any item. The Bland-Altman plot (Figure 5.1) showed a fairly equal distribution of values above and below the mean difference illustrating an unsystematic variability in performance at the second test session. There were five outliers who did not fall between the limits of agreement (14.6 to -16.6); two outliers had improved and three had worse WheelCon-M scores beyond the limits of agreement. Most of the values clustered at the higher score end of the WheelCon-M, indicating a ceiling effect. Regarding ceiling effect, upon further examination it was determined that the proportion of participants reporting complete confidence (100%) exceeded 20% for 54 of the 63 WheelCon-M items (Table 5.2). The five items with the greatest ceiling effects were: As of now, how confident are you… moving your wheelchair around furniture in your own home (69.9%); moving your wheelchair over thresholds, such as between rooms (69.9%); moving your wheelchair down a standard ramp (66.3%); moving from your wheelchair to your bed (65.1%); and that you can tell a cab driver how to fold/unfold your wheelchair, making sure all parts are taken off and put back on properly? (65.1%). With respect to floor effects, the proportion of participants reporting no confidence (0%) exceeded 20% for only two WheelCon-M items. These items were: As of now, how confident are you… moving your wheelchair up a standard height curb (15cm) without a curb cut (20.5%) and moving from the floor to your wheelchair by yourself (24.1%)? There were no floor or ceiling effects for the total score on the WheelCon-M, no one scored 0% and only one person scored 100%. Forty-one percent of participants scored between 20% and 80% on the WheelCon-M.  100  Figure 5.1 Bland-Altman plot of the mean versus the difference in baseline and follow-up WheelCon-M scores  101  5.3.3 Validity All correlations were in the direction hypothesized (Table 5.3) and apart from the ISEL and age, all correlations were statistically significant (p<.01). For the majority of the associations, the strength of the correlations was lower than anticipated. However, the magnitude of the relationship between the WheelCon-M and the WST and WST-Q was as expected. As hypothesized, men scored better than women on the WheelCon-M with an eight-point score difference between the sexes (Table 5.1); however, this relationship was not statistically significant (Mann-Whitney U = 577.5, p=0.14). Also as hypothesized, WheelCon-M scores decreased with age (Table 5.1) but, there was not a statistically significant difference between those < 50 and ≥ 50 years of age (Mann-Whitney U = 647.5, p=0.053). WheelCon-M scores increased with years of wheelchair experience (Table 5.1). There was a statistically significant difference between the three groups (Kruskal-Wallis test, p<0.0). Table 5.3 Mean scores for the study measures Study Measures  Mean (SD)  Correlation (ρ)with the WheelCon-M  WheelCon-M (baseline) ( /100) Wheelchair Skills Test ( /100) Wheelchair Skills Test – Questionnaire version ( /100) Barthel Index( /100) Hospital Anxiety and Depression Scale ( /21) Functioning Everyday with a Wheelchair (/60) Interpersonal Support Evaluation List -12 item ( /36) Life Space Assessment ( /120) Age Years of wheelchair experience *p < 0.01  80.6 (15.6) 79.6 (14.9) 83.4 (11.9) 74.7 (12.7) 10.1 (5.9) 52.8 (6.9) 26.1 (6.4) 53.4 (19.8) 49.6 (13.7) 16.5 (13.8)  0.52 * 0.58* 0.32 * -0.43* 0.37* 0.21 0.38* -0.19 0.33*  102  5.4  Discussion  This research provides evidence for the reliability and validity of the WheelCon-M, version 2.1. Participants in this research were community dwelling adults ranging in age from 21 to 80 with a variety of diagnoses. They were an experienced group of wheelchair users who had a high mean ± SD level of wheelchair skill (79.6 ± 14.9) when compared to a similar group of communitydwelling wheelchair users from a previous study (70.8 ± 14.0).8 They lived in three major cities across Canada. 5.4.1 Reliability The WheelCon-M items had a high degree of internal consistency according to Nunnally and Bernstein`s standards161 and stepwise deletion of each item suggested that all of the WheelConM items made an important contribution to the scale. Although an α of 0.92 may suggest item redundancy,116 it may be that there are clinically important differences between the items. The skill required to go up a curb without a curb cut, for instance, is very different from the skill required to go down a curb without a curb cut. Differences between seemingly similar skills were supported by the health care professionals and wheelchair users during the development phase of the WheelCon-M, version 1.0.117 The WheelCon-M retest reliability did not quite reach Streiner and Norman`s recommended 0.85 116  and the 95% BCa CI was wide (0.70-0.92), which may be explained by the outliers illustrated  by the Bland-Altman plot. In fact, removal of the outliers when calculating the retest reliability increased the ICC to 0.92. Regarding the outliers, one participant‟s increase in scores may be explained by her participation in wheelchair skills training during the one-week interval between the testing sessions. In fact, she reported that her confidence in using the wheelchair had increased as a result of this training. The large change in scores for the other four outliers is 103  difficult to determine based on the data collected. Unreported changes or experiences such as medical, therapeutic, environmental, or personal may have occurred. The clustering of scores at the higher score end of the WheelCon-M demonstrated by the BlandAltman plot and the large number of items that illustrated ceiling effects may be explained by the sample. In order to determine the reliability of the WheelCon-M, an experienced group of wheelchair users were recruited. As demonstrated in this research, confidence increased with wheelchair experience. Therefore, it stands to reason that many of the experienced wheelchair users in this research would have developed a high level of confidence in many of the WheelCon-M items. This notion is supported in the wheelchair skills training literature where participants have made qualitative comments about their confidence improving as a result of skills training.8, 70 The SEM of 5.9 and the SRD of 16.4 represent the minimal change in WheelCon-M score that reflects a meaningful change beyond measurement error for a group and an individual respectively. These values are small given the 0-100 response scale allowing for important statistical changes to occur post intervention. Determination of the minimal clinically important difference will also be important.168, 169 If the clinically important differences exceed the SEM and SRD, we will be able to deduct that the WheelCon-M is valid for this purpose. 5.4.2 Validity The corroboration (to varying degrees) of most of the 12 hypotheses constructed a priori for psychometric evaluation provides evidence of the validity of the WheelCon-M. That some relationships were weaker than expected requires explanation. We hypothesized a positive, but low (≥ 0.3) correlation between wheelchair confidence and the ISEL (social support). Although  104  emotional support, for example in the form of positive reinforcement, may improve the confidence of wheelchair users,2 too much social support in the form of physical assistance may have the opposite effect. Research has shown that independence is often discouraged and more physical assistance than necessary is provided for wheelchair users by friends, family, and even strangers.141, 142 As described in the introduction, this abundance of support can limit wheelchair users` opportunities to build confidence through attempting and practicing the tasks and activities of which they are capable. Successes achieved with external assistance carry little efficacy value because they are likely credited to the assistance provided rather than to personal capabilities.2 In this sample, it is possible that the degree of physical assistance provided may have been even greater than expected, or, perhaps more likely, that social support in any capacity was not very important to this experienced group of wheelchair users. Interestingly, this notion of social support impeding confidence is in contrast to Bandura‟s theory whereby he suggests social support helps to build confidence.2 There was a weak relationship between age and WheelCon-M scores and there were no statistically significant differences between either the <50 and ≥50 age groups or sexes. A twoway, between-groups analysis of variance post hoc analysis revealed a large statistically significant age x sex interaction (F=8.90, p = 0.004, partial eta-squared = 0.10). It appears from our sample that we may have had two distinct groups of participants: young males with spinal cord injury versus older, frail females. Therefore, the main effects of age and sex on WheelConM scores cannot be concluded from this sample. The 0.38 correlation between the WheelCon-M and the LSA was lower than anticipated. Upon reflection, this value may be explained by the means in which the LSA is scored. When computing the composite score, an individual is penalized for using a wheelchair when 105  calculating the independence component. As such, when using the LSA, wheelchair users will always score lower than individuals who do not use a mobility aid. Finally, the 0.32 correlation between the WheelCon-M and the BI may have been lower than expected as there is little overlap between the items on the BI (2/10) and WheelCon items, which is important to consider given that self-efficacy is task specific.2 There were limitations to our research. The sample consisted of wheelchair users with at least six months of experience using a manual wheelchair which limits the generalizability of the results. Further testing of the measure is needed with the group that we feel will most benefit from this outcome measure, new wheelchair users. The process of having the researcher present while the participant completed the WheelCon-M could have resulted in social desirability bias, particularly with those participants who required physical assistance in completing the scale. As suggested by Bandura,105 appraisals of self-efficacy should be completed in private to reduce evaluative concerns and increase consistency. Validation of a measure is an ongoing process. Future directions for the WheelCon-M include testing the psychometric properties with new wheelchair users, conducting factor analysis using a larger sample, and conducting further responsiveness testing, specifically determining the minimal clinically important difference. 5.5  Conclusion  To the best of our knowledge, the WheelCon-M is the first measure of confidence with wheelchair use to have been rigorously developed106 and tested for psychometric properties. Results obtained in this research provide evidence for reliability and validity of this new  106  measure. The WheelCon-M provides an excellent means of measuring confidence with wheelchair use both from a clinical and research perspective.  107  6 6.1  Discussion and Future Direction Overview  This thesis described the development and validation of a new instrument designed to measure confidence with manual wheelchair use, the Wheelchair Use Confidence Scale (WheelCon-M). As Bandura‟s Social Cognitive Theory, of which self-efficacy is the core component, has provided the conceptual framework for this research, his guidelines for constructing a selfefficacy scale105 were used in the development of the WheelCon-M. Further direction was provided by Frei et al.‟s systematic approach for the development and validation of self-efficacy instruments,106 which was based on identified methodological limitations in the development and validation of self-efficacy scales. Finally, Messick‟s sources of evidence to support construct validity were used.6 Table 6.1 presents a summary of how these three sets of guidelines were used throughout the entire development and validation process of the WheelCon-M.  108  Table 6.1 A summary of the development and validation procedures used in creating the WheelCon-M Bandura’s Guidelines105 Develop scale on conceptual analysis Include task demands that represent gradations of challenge Phrase items in terms of „can do‟ rather than „will do‟ Use 100 point scale Frei et al’s Systematic Approach106 Definition of aim of instrument Definition of a priori considerations Identification of items Selection of items Validation of instrument  Messick’s Sources of Validity6 Test content Response process Internal structure Relations to other variables Consequences  Yes, based on qualitative interviews, Delphi survey, and think aloud Yes, based on qualitative interviews and Delphi survey Yes Yes Evaluative – to detect change over time Administration format – self-administered; based on Bandura‟s guidelines Sources: wheelchair users and health care professionals Sources: wheelchair users, health care professionals, and researchers Measurement properties for evaluative instrument: Test-retest - yes Internal consistency – yes Longitudinal Validity – no Responsiveness – yes  Qualitative interviews and Delphi survey Think aloud Reliability (internal consistency and test-retest) Validity testing Future directions  Using Messick‟s overarching framework of the five sources of construct validity (the degree to which a test score can be interpreted as representing the underlying construct),6 I will synthesize and draw conclusions regarding the development and validation of the WheelCon-M. 6.1.1 Test content Evidence of test content involves assessing the relationship between a test‟s content and the construct it is intended to measure.6 Given the lack of literature regarding confidence with  109  manual wheelchair use, the first step in the development of the WheelCon-M involved in-depth qualitative interviews with wheelchair users and health care professionals, as described in Chapter Two. As the first qualitative exploration of confidence with wheelchair use, the themes described in this chapter provided important insights into this potentially modifiable invisible barrier. This qualitative research also provided a conceptual basis regarding confidence with wheelchair use and data from which to generate items for the development of the 83-item WheelCon-M, version 1.0. The Delphi survey phase, described in Chapter Three, was used to assess item relevance, item clarity, and the ability of the items to distinguish between high and low confidence. Results from the Delphi survey were used as a method of final item selection resulting in a 62-item WheelCon-M, version 2.0. These two phases of the development and validation of the WheelCon-M represented rigorous methodology that incorporated important aspects of developing a self-efficacy scale, specifically, the development of a conceptual analysis105 and the use of experts, in particular the wheelchair users themselves, to generate and select items.106 6.1.2 Response process Response process is defined as the relationship between the intended construct and the thought processes of participants or observers.6As described in Chapter Four, it is an underutilized, yet critical source of construct validity in the development of self-efficacy scales. The use of the think aloud process in this phase of the development and validation of the WheelCon-M, version 2.0 was enlightening. It highlighted that an item being „clearly worded‟ as assessed during the Delphi survey, is not the same as an item being „interpreted as intended‟. The sheer number of items that were not interpreted as intended demonstrated the importance of conducting this type of validity assessment in the development of new instruments. If this important source of  110  construct validity had been neglected, it may have appeared as though WheelCon-M, version 2.0 items were interpreted as intended, when, in fact, they were not. This process also indicated the need for an additional item. Overall, this process resulted in a refined 63-item WheelCon-M, version 2.1. 6.1.3 Internal structure Evidence based on internal structure refers to the degree to which the relationship among test items and test components conform to the construct on which the proposed test score interpretations are based.6 Reliability and factor analysis are generally considered evidence of internal structure.7 As reported in Chapter Five, the internal consistency and test-retest reliability of the WheelCon-M, version 2.1 were tested. Cronbach‟s alpha indicated that there may be some item redundancy. However, it may also be that there are clinically important differences between the items that might be lost if relying solely on statistical association to select items. The high Cronbach‟s alpha may also have been the result of the WheelCon-M having a large number of items (n=63). The test-retest intraclass correlation coefficient did not quite reach Streiner and Norman‟s116 recommendation for good reliability; however, this may have been a result of the individuals falling outside of the limits of agreement. The reliability of the WheelCon-M, version 2.1 requires further assessment, including factor analysis. 6.1.4 Relations to other variables The correlation of WheelCon-M, version 2.1 scores with scores from other instruments or outcomes for which a correlation would be expected supports interpretation consistent with the underlying constructs.7 Chapter Five outlined the a priori hypotheses and the finding that that all correlations were in the direction hypothesized. Some relationships were weaker than expected, however. The low correlation between the WheelCon-M and social support was surprising, 111  especially given that it contradicts Bandura‟s theory that social support helps to build confidence.2 As discussed in Chapter Five, it appears as though social support provided to wheelchair users, in the form of physical assistance, may in fact decrease confidence as successes may be attributed to the assistance provided, rather than personal capability. The weak relationship between age and WheelCon-M, version 2.1 scores was also unexpected. Post-hoc analysis, however, revealed that an age x sex interaction was present and that two groups were mainly represented in the sample (young, male individuals with spinal cord injury and older, frail females). This phase of the research provided additional evidence of the construct validity of the WheelCon-M, version 2.1. 6.1.5 Consequences Evaluating the intended or unintended consequences of an assessment may inform validity decisions.7 The legitimate test use of the WheelCon-M, version 2.1 has not been assessed as the tool has not yet been used in practice. The most legitimate use of this test may be to identify individuals who require further individualized training regarding wheelchair use. A misuse of the WheelCon-M would be the creation of policies to restrict funding of a wheelchair that would potentially otpimize wheelchair use based on low confidence scores. As described in this dissertation, a rigorous process, grounded in qualitative and quantitative methods recommended for the development and validation of new instruments,6, 105, 106 was used in developing the WheelCon-M. Prior to this work, there was no instrument available to measure confidence with manual wheelchair use. Development of the WheelCon-M paves the way toward enabling clinicians and researchers to measure confidence in this area in order to identify individuals who have low confidence with wheelchair use.  112  6.2  Strengths and limitations  The mixed-methods design was a strength of this research. Qualitative interviews provided a conceptual basis of the as yet unexplored area of confidence with manual wheelchair use. The six areas of concern that were identified provided insight into this novel area of research. The combination of qualitative (think aloud) and quantitative (Delphi, think aloud, and psychometric testing) methods that were used in the remainder of the research allowed for a rigorous procedure for the development and validation of the WheelCon-M. Further, the use of wheelchair users in both the qualitative and quantitative phases of this research ensured that the most relevant areas of confidence with wheelchair use were included in the WheelCon-M. Use of a semi-structured interview guide for the qualitative interviews enabled us to modify the questions as the interviews progressed in order to explore emerging ideas from the participants. This methodology resulted in a comprehensive generation of items for the WheelCon-M. However, interviewing the participants only once did not allow for exploration of all of the areas with all participants. It would have been beneficial, in particular, to explore self-presentational efficacy (part of the managing social situations area that was recognized in the later interviews) with all of the participants in order to fully understand the meaning of this construct for this sample of wheelchair users. Ending the Delphi survey after three rounds, rather than continuing until consensus was reached for all items, may be seen as a limitation of this phase of the research. However, despite not reaching consensus for 14 out of the 84 items across the wheelchair user, health care professional, and researcher experts, use of the wheelchair users‟ responses to make the final decision was appropriate as they are, after all, the true experts of wheelchair use.  113  Incorporating the assessment of response process using the think aloud approach was instrumental in the development and validation of the WheelCon-M and represented an underutilized, but critical approach to testing the validity of a new measure. As this research demonstrated, it is important to assess whether items are interpreted as intended by the developers of a new measure. The think aloud process for identifying that items require revision is outlined in the literature131 and it was followed. However, there are no guidelines that outline the method by which to modify items to improve their interpretation. Modifying an item does not necessarily mean that it has been improved. Assessing test-retest reliability is one method of assessing the improvement of items. To determine the effectiveness of the think aloud process in improving the interpretation of the WheelCon-M, version 2.0 items, a post hoc analysis of the test-retest reliability of the sample of seven think aloud participants was conducted and compared to the test-retest reliability of the sample of 83 participants in the psychometric testing phase of the research. Results demonstrated that the reliability of the sample of 83 participants who used the refined WheelCon-M, version 2.1 (ICC=0.84) was higher than the reliability of the seven think aloud participants who completed version 2.0 (ICC=0.73). However, the small sample of participants in the think aloud research warrants caution in drawing conclusions from these results. Another limitation of the think aloud phase of the research relates to the comprehensiveness of data collected. While the think aloud process facilitates gathering of information regarding the participant‟s comprehension of the item and retrieval of information, it does not provide information regarding the judgement process (e.g., the process of the individual determining whether or not the item applies to them, whether it is asking for information they have) and response (e.g., participants may edit their answer before they communicate it to conform to social desirability norms). The use of verbal probing in conjunction with the think  114  aloud process may have assisted with obtaining this type of information. Finally, the written recording of the think aloud process is a limitation of this phase of the research as important information may have been missed or misrepresented. Audio recording would have improved the accuracy of this component of the process. A limitation of the psychometric testing phase of this research is the small sample size (n=83) in that it did not allow the investigation of factor analysis and Rasch analysis. Factor analysis would have enabled us to confirm that there are six dimensions in the WheelCon-M. Further, the classical test theory used in this research would have been augmented by applying principles of item response theory by moving the focus from total score and its relationship with a theoretical true score to placing more emphasis on item level information. Analyses using this approach would have enabled confirmation that the WheelCon-M, version 2.1 reflects a multi-dimensional construct, that the scale items progress hierarchically from easy to difficult without redundancy, and that the scale can discriminate within and across individuals. Conducting factor and Rasch analysis is recommended for future studies. The sampling strategy and resultant sample of participants has both strengths and limitations. First, all participants were volunteers and therefore the potential bias of self-selection exists, which affects the generalizability of the results. Second, the qualitative phase of this work included the use of experienced wheelchair users (at least six months) and experienced health care professionals which were important to glean information from individuals who had exposure to different experiences in manual wheelchair use. However, family members, caregivers, and vendors were not included in item generation and selection, which is a limitation in that the perspectives from these important groups were not represented. The perspectives of new wheelchair users are also missing from both the qualitative and quantitative phases of this 115  work. This group was intentionally not sampled in order to acquire information from individuals who had the opportunity to experience a wide variety of wheelchair use challenges and also for the purpose of the test-retest design of the psychometric testing. However, without this group, it is possible that the perspective of wheelchair users who abandon their wheelchair early (e.g., within the first six months) due to low confidence may have been missed. The think aloud and psychometric testing phase of the research also did not include individuals who live in a long term care setting. The WheelCon-M, version 2.1 will need to be validated with new wheelchair users and wheelchair users in long term care as the intention was that this tool would be appropriate for use across the continuum of care. Third, recruitment of subjects from three major cities across Canada improves the generalization of the results of this research to the Canadian context. However, it is important to note that the sample of wheelchair users in this research had a higher than average percentage of males and a high percentage of spinal cord injury diagnosis in comparison to Canadian wheelchair users as a whole.11 As well, the number of participants that were not Caucasian was minimal and so the results of this work cannot be generalized to culturally diverse populations. Finally, restricting the sampling strategy to the Canadian context is a limitation in that culturally diverse perspectives were missed (e.g., vendors in other countries may play a more active role in training). As well, despite having a small rural representation included in this research sample from the rural towns outside of the three major Canadian cities, the impact of different geographies and climates on wheelchair use outside of Canada was also missed. Moreover, other sub-populations such as those with mild to moderate were not included in this work. Future studies should test the WheelCon-M with these populations.  116  6.3  Implications  This research resulted in the development of the WheelCon-M, version 2.1 a novel assessment tool for measuring confidence with manual wheelchair use. Until now, assessing this aspect of wheelchair use has not been possible using a standardized measure. Developed in part based on the notion that wheelchair confidence is a potentially important clinical area to address suggests that it might be of value to clinicians who wish to detect individuals who would benefit from targeted interventions to improve wheelchair use. Knowledge translation about the WheelConM, version 2.1 to clinicians and researchers will be important. 6.4  Future directions  Validation is an evolving process which depends on the accrual of evidence from different sources. As above, further qualitative exploration of self-presentational efficacy, conducting factor and Rasch analysis, and validating the WheelCon-M, version 2.1 with all populations of wheelchair users, including cross-cultural validation is important. The next step in development will be to assess the responsiveness, in particular clinically important change, of the WheelConM, version 2.1. Additional studies examining the item structure may reveal that the number of items could be reduced which may be appealing to busy clinicians. However, at a mean of approximately 20 minutes, the current length does not seem arduous. Determination of the prevalence of low confidence with manual wheelchair use is important to identify if low confidence with wheelchair use is in fact a clinical concern. Ultimately, if it is confirmed, treatment strategies designed to address low confidence based on Bandura‟s Social Cognitive Theory2 will be developed and randomized controlled trials designed to assess the efficacy of these strategies. This novel construct of wheelchair confidence may enable us to account for more of the variance in manual wheelchair use and participation than in existing 117  models.80, 81 Finally, a logical continuation of this work will be to develop a power version of the WheelCon (WheelCon-P) to assess low confidence with power wheelchair use.  118  References 1. Johnson RB, Onwuegbuzie AJ, Turner LA. Toward a definition of mixed methods research. J Mix Methods Res. 2007;1:112-133.  2. Bandura A. Self-Efficacy: The Exercise of Control. New York: W. H. Freeman and Company; 1997.  3. Corbin J, Strauss A. Basics of Qualitative Research: Techniques and Procedures for Developing Grounded Theory. 3rd ed. Thousand Oaks, California: Sage Publications, Inc.; 2008.  4. 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Many faces of the minimal clinically important difference (MICD): A literature review and directions for future research. Curr Opin Rheumatol. 2002;14:109-114. 139  Appendices  140  Appendix A Wheelchair User Demographic Form (Phases 1 and 2) WHEELCHAIR USERS  D.O.B.  Gender  ___________ (dd/mm/yyyy) Location  0  1  Male  Female  Time Spent Using Wheelchair  ___________  ___________  City  Months/Years  Education Level  0 > Grade 12  1 High School  2 Bachelor’s  3 Master’s  4 PhD  5 Post-Doc  Diagnosis  ___________  141  Appendix B Health Care Professional Data Collection Form (Phases 1 and 2) HEALTH CARE PROFESSIONALS  D.O.B.  Gender  ___________ (dd/mm/yyyy) Location  0  1  Male  Female  Type of Health Care Professional ___________  ___________ City  Education Level  0  1  > Grade 12  High School  2 Bachelor’s  3 Master’s  4 PhD  5 Post-Doc  Number of Years Practicing  ___________ Years  142  Appendix C Semi-Structured Interview Guide Confidence with Wheelchair Use Semi-Structured Interview Questions  1. What personal factors contribute to an individual‟s ability to use their wheelchair?  Prompts: Promotes? Limits? What characteristics related to the person impact wheelchair use? 2. How do the factors you describe contribute to an individual‟s ability to use their wheelchair?  Prompts: Explore each of the factors described above. 3. If not identified in question 1, how does _____contribute to an individual‟s ability to use their wheelchair? [Motivation, Cognition] 4. What role does confidence play in an individual‟s ability to use their wheelchair?  Prompts: low confidence vs. high confidence. 5. How do individuals who use wheelchairs demonstrate confidence or lack of confidence?  Prompts: what situations (social, environmental, physical) may challenge confidence?  Prompts: examples to provide include rolling wheelchair across a sloped surface or climbing a curb or wheeling in a large crowd of individuals, dealing with snow and icy conditions. 6. How might you go about measuring an individual‟s confidence in their ability to use a wheelchair?  143   Prompt: If you were to ask an individual about their confidence using a wheelchair what situations, conditions, circumstances would you include in a questionnaire? 7. Is there anything I‟ve missed?  144  Appendix D WheelCon-M, version 1.0 WHEELCHAIR MOBILITY CONFIDENCE SCALE Instructions: The purpose of this questionnaire is to assess your level of confidence in using your wheelchair while performing various tasks and activities. For the purpose of this assessment, confidence refers to your belief in your ability to do the tasks and activities in the following questions. For each question, please indicate your level of confidence by choosing a corresponding number from the following rating scale. For example, an answer to the question “How confident are you that you can lift a 5 lb. box?” might be 82%. Please try to answer all items even if they are activities you would not normally do or are unsure about.  NOTE: IF YOU DO NOT USE A WHEELCHAIR FOR MOBILITY, PLEASE COMPLETE THIS DRAFT VERSION OF THE WHEELCHAIR MOBILITY CONFIDENCE SCALE AS THOUGH YOU DO.  Rate your degree of confidence by recording a number from 0 to 100 using the scale below:  0  10  20  30  40  50  60  70  80  90  100  Not  Moderately  Completely  confident  confident  confident  145  PHYSICAL ENVIRONMENT SUBSCALE As of now, how confident are you moving your wheelchair:  1) through open doorways? _____ 2) around tight corners? _____ 3) around furniture in your home? _____ 4) over thresholds (e.g., the lip into your house or onto your patio)? _____ 5) over carpet? _____ 6) over grass? _____ 7) through puddles? _____ 8) through slush? _____ 9) through snow? _____ 10) along a paved sidewalk? _____ 11) along a bumpy sidewalk? _____ 12) along a sidewalk that has potholes? _____ 13) along a cobblestone walkway? _____ 14) along a gravel path or driveway? _____ 15) up a curb cut? _____ 16) down a curb cut? _____ 17) up a curb with no curb cut? _____ 146  PHYSICAL ENVIRONMENT (continued) 18) down a curb with no curb cut? _____ 19) across the street at a crosswalk with no traffic lights? _____ 20) across the street at a crosswalk with traffic lights? _____ 21) up a gentle slope? _____ 22) up a steep slope? _____ 23) down a gentle slope? _____ 24) down a steep slope? _____ 25) down a steep slope and then stopping? _____ 26) through a crowded mall? _____ 27) through a store with lots of space between the aisles? _____ 28) through a store with little space between the aisles? _____ 29) moving your wheelchair in tight spaces, such as elevators? _____ 30) through an elevator door?______ 31) over a drainage grate and then up a curb? _____ 32) down a curb cut and then over a drainage grate? _____ 33) through puddles and then up a curb cut? _____ 34) through slush and then up a curb cut? _____ 35) through snow and then up a curb cut? _____  147  PHYSICAL ENVIRONMENT (continued) 36) through a doorway you have just opened and then closing the door behind you? _____ 37) through a doorway with a spring loaded door? _____ 38) up 3 to 5 steps? _____ 39) down 3 to 5 steps? _____ ACTIVITIES PERFORMED WHILE USING A MANUAL WHEELCHAIR SUBSCALE As of now, how confident are you in doing the following activities: 1) moving your wheelchair in tight spaces, such as elevators? _____ 2) moving from your wheelchair to your bed? _____ 3) moving from your wheelchair to the toilet? ______ 4) moving from your wheelchair to you bathtub or shower? _____ 5) moving from your wheelchair to your car? _____ 6) moving from your wheelchair to a chair in a restaurant? _____ 7) moving from your wheelchair to a seat in a movie theatre? _____ 8) positioning your wheelchair at a dining table? _____ 9) moving from the floor to your wheelchair by yourself? _____ 10) reaching an item off of a high shelf while using your wheelchair? _____ 11) picking a magazine off of the floor while using your wheelchair? _____ 12) getting dressed while using your wheelchair? _____ 148  ACTIVITIES PERFORMED WHILE USING A MANUAL WHEELCHAIR (continued) 13) sponge bathing while using your wheelchair? _____ 14) doing toileting activities while using your wheelchair? _____ 15) making a meal while using your wheelchair? _____ 16) doing laundry while using your wheelchair? _____ 17) cleaning your home while using your wheelchair? _____ 18) folding your wheelchair? _____ 19) unfolding your wheelchair? _____ 20) putting your wheelchair in your vehicle? _____ 21) moving your wheelchair on or off public transportation? _____ 22) positioning your wheelchair on public transportation? _____ 23) carrying a hot drink while moving in your wheelchair? _____ 24) managing toileting activities in public bathroom facilities? _____ 25) doing leisure activities, such as going to church or clubs? _____  KNOWLEDGE AND PROBLEM SOLVING SUBSCALE As of now, how confident are you that you: 1) know the capabilities of your wheelchair regardless of your own skill? _____ 2) can identify a maintenance problem with your wheelchair (e.g., low tire pressure)? _____ 149  KNOWLEDGE AND PROBLEM SOLVING (continued) 3) can figure out how to move your wheelchair in new situations (e.g., through snow or over a large threshold)? _____ 4) can tell someone how to help you move your wheelchair if it gets stuck, such as in a pothole in the sidewalk? _____ 5) can tell a stranger how to help you safely get back into your wheelchair if you tip over? _____ 6) can tell a cab driver how to fold/unfold your wheelchair making sure all parts are taken off and put back on properly? _____  ADVOCACY SUBSCALE (Advocacy is the act of pleading or arguing in favour of something) As of now, how confident are you that you can: 1) advocate for changes to your wheelchair, such as a different cushion or a change in wheel position? _____ 2) advocate for physical changes in your community environment, such as sidewalks fixed or curb cuts added? _____ 3) advocate for physical changes in your home environment, such as doorways widened or a ramp installed? _____  150  ADVOCACY SUBSCALE (continued) 4) advocate for physical changes to your place of work or school, such as modifications in the bathroom? _____ SOCIAL SITUATIONS SUBSCALE As of now, how confident are you that you can: 1) put others at ease if they are uncomfortable around a person who uses a wheelchair? _____ 2) comfortably dispel „disability myths‟, such as needing help or needing people to speak louder just because you are in a wheelchair? _____ 3) ask people to move out of your way while moving in your wheelchair though a crowded area such as a mall or street crossing? _____ 4) make a good impression in front of others in social situations with friends or colleagues when doing more challenging wheelchair activities, such as wheeling across gravel or moving from your wheelchair to another seat like in a movie theatre? _____ 5) do wheelchair activities that are challenging to you where there is risk of failure while out in public, such as in social situations with peers or colleagues? _____ 6) do wheelchair activities in social situations with peers or colleagues when you are concerned about the speed or quality of your performance? _____  151  EMOTIONS SUBSCALE As of now, how confident are you that you can: 1) manage any anxious or nervous feelings you may have when moving your wheelchair in new environments? _____ 2) manage any anxious or nervous feelings you may have when trying new or more difficult wheelchair skills in the community, such as going up or down ramps or curb cuts, or crossing a busy intersection? _____ 3) stay calm in stressful situations, such as if your wheelchair stops working properly or gets stuck? _____  152  Appendix E WheelCon-M, version 2.0 THE WHEELCHAIR MOBILITY CONFIDENCE SCALE  Instructions: The purpose of this questionnaire is to assess your level of confidence in using your wheelchair while performing various tasks and activities. For the purpose of this assessment, confidence refers to your belief in your ability to do the activities in the following questions. For each question, please indicate your level of confidence by choosing a corresponding number from the following rating scale. For example, an answer to the question “How confident are you that you can lift a 5 lb. box?” might be 82%, where as “How confident are you that you can lift a 10 lb box?” might be 48%. Please try to answer all items even if they are activities you would not normally do or are unsure about.  Rate how confident you are by recording a number from 0 to 100 using the scale below:  0  10  Not confident  20  30  40  50  60  70  80  90  100  Completely confident 153  PHYSICAL ENVIRONMENT SUBSCALE  As of now, how confident are you moving your wheelchair:  Confidence Level  1) around furniture in your home? 2) over thresholds (e.g. the lip into your house or onto your patio)? 3) over carpet? 4) over grass? 5) through snow? 6) along a bumpy sidewalk? 7) along a sidewalk that has potholes? 8)  along a gravel path or driveway?  154  As of now, how confident are you moving your wheelchair:  9)  Confidence Level  across the street at a crosswalk with no traffic lights?  10) across the street at a crosswalk with traffic lights? 11) up a gentle slope? 12) up a steep slope? 13) down a gentle slope? 14) down a steep slope? 15) down a steep slope and then stopping? 16) through a crowded mall? 17) through a store with little space between the aisles?  155  As of now, how confident are you moving your wheelchair:  Confidence Level  18) moving your wheelchair into tight spaces, such as elevators? 19) through an elevator door? 20) up a curb cut? 21) down a curb cut? 22) up a curb with no curb cut? 23) down a curb with no curb cut? 24) down a curb cut then through a puddle? 25) through puddles then up a curb cut? 26) through slush then up a curb cut?  156  As of now, how confident are you moving your wheelchair:  Confidence Level  27) down a curb cut then through slush? 28) through a doorway you have just opened and then closing the door behind you? 29) through a doorway with a spring loaded door?  157  ACTIVITIES PERFORMED WHILE USING A MANUAL WHEELCHAIR SUBSCALE  As of now, how confident are you in doing the following activities:  Confidence Level  1) moving from your wheelchair to your bed? 2) moving from your wheelchair to the toilet? 3) moving from you wheelchair to your bathtub or shower? 4) moving from your wheelchair to your car? 5) moving from the floor to your wheelchair by yourself? 6) making a meal while using your wheelchair? 7) moving your wheelchair on or off public transportation? 8) carrying a hot drink while moving in your wheelchair?  158  As of now, how confident are you in doing the following activities:  Confidence Level  9) managing toileting activities in public bathroom facilities? 10) doing leisure activities, such as going to church or clubs? 11) carrying items, such as groceries, while using your wheelchair?  159  KNOWLEDGE AND PROBLEM SOLVING SUBSCALE  As of now, how confident are that you:  Confidence Level  1) know the capabilities of your wheelchair regardless of your own skill?  2) can identify a maintenance problem with your wheelchair (e.g., low tire pressure)? 3) can figure out how to move your wheelchair in new situations (e.g., through snow or over a large threshold)? 4) can tell someone how to move your wheelchair if it gets stuck, such as in a pothole in the sidewalk? 5) can tell a stranger how to help you safely get back into your wheelchair if you tip over? 6) can tell a cab driver how to fold/unfold your wheelchair making sure all parts are taken off and put back on properly?  160  ADVOCACY SUBSCALE (Advocacy is the act of pleading or arguing in favour of something) As of now, how confident are that you can:  Confidence Level  1) advocate for changes to your wheelchair, such as a different cushion or a change in wheel position? 2) advocate for physical changes in your community environment, such as sidewalks fixed or curb cuts added? 3) advocate for physical changes in your home environment, such as doorways widened or a ramp installed? 4) advocate for physical changes to your place or work or school, such as modifications in the bathroom?  161  SOCIAL SITUATIONS SUBSCALE As of now, how confident are that you can:  Confidence Level  1) put others at ease if they are uncomfortable around a person who uses a wheelchair? 2) comfortably dispel „disability myths‟, such as needing help or needing people to speak louder just because you are in wheelchair? 3) ask people to move out of your way while moving in your wheelchair though a crowded area such as a mall or street crossing? 4) do wheelchair activities that are challenging to you where there is a risk of failure while out in public, such as in social situations with peers or colleagues? 5) do wheelchair activities in social situations with peers or colleagues when you are concerned about the speed or quality of your performance?  162  EMOTIONS SUBSCALE As of now, how confident are that you can:  1) manage any anxious or nervous feelings you may have when moving your wheelchair in new environments? 2) manage any anxious or nervous feelings you may have when trying new or more difficult wheelchair skills in the community, such as going up or down ramps or curb cubs, or crossing a busy intersection? 3) stay calm in stressful situations, such as if your wheelchair stops working properly or gets stuck?  Total Score  163  Appendix F Mini Mental Status Exam  The Folstein Mini-Mental Status Examination (MMSE) Score 1 for every correct answer: 1. What year is it?  _____  2. What season are we in?  _____  3. What month are we in?  _____  4. What is today‟s date?  _____  5. What day of the week is it?  _____  6. What country are we in?  _____  7. What province are we in?  _____  8. What city are we in?  _____  9. What hospital are we in?  _____  10. What floor of the hospital are we on?  _____  Name three objects (“Ball,” “Car,” “Man”). Take a second to pronounce each word. Then ask the patient to repeat all 3 words. Take into account only correct answers given on the first try. Repeat these steps until the subject learns all the words. 11. Ball?  _____  12. Car?  _____  13. Man?  _____  Either “please spell the word WORLD and now spell it backwards” or “Please count from 100 subtracting 7 every time” 14. “D” or 93  _____  164  15. “L” or 86  _____  16. “R” or 79  _____  17. “O” or 72  _____  18. “W” or 65 What were the 3 words I asked you to remember earlier?  _____  19. Ball?  _____  20. Car?  _____  21. Man?  _____  Show the subject a pen and ask: “Could you name this object?” 22. Pen.  _____  Show the subject your watch and ask: “Could you name this object?” 23. Watch  _____  Listen and repeat after me: 24. “No ifs, ands, or buts.”  _____  Put a sheet of paper on the desk and show it while saying: “Listen carefully and do as I say.” 25. Take the sheet with your left/right (unaffected) hand.  _____  26. Fold it in half.  _____  27. Put in on the floor.  _____  Show the patient the visual instruction page directing him/her to “CLOSE YOUR EYES” and say: 28. Do what is written on this page.  _____  165  Give the subject a blank sheet and a pen and ask: 29. Write or say a complete sentence of your choice.  _____  Give the patient the geometric design page and ask: 30. Could you please copy this drawing?  Total Score: (/30)  _____  _____  166  Appendix G Wheelchair User Demographic Form (Phases 3 and 4) Demographic Information Sheet 2) Sex: male  female   1) Date of birth: _________________ (day/month/year)  3) Marital status: 0 Married  1  2  3  Single  Separated  Divorced  4  5  Common Law  Widowed  4) Education level (Highest grade or degree completed): Less than high school:    What grade level?________  High school:    What grade level?________    Professional degree Bachelor’s  Please specify__________________  Masters   PhD   5) Primary language: ______________  6) Diagnosis: _____________________  7) Years with Disability: _____________  8) Time using Wheelchair __________ (yrs or months)  9) Method of Wheelchair Propulsion:   two hands    two feet    one hand: R or  L (circle one)    one foot:  L (circle one)    one hand, one foot: Hand R or L (circle one), Foot R or one)    two hands, two feet  R or  L (circle  10) Where do you use your wheelchair?  Home  Work  School  Community  Recreation or sports  Other: ____________________ 11) Medication List _________________________________ ________________________________ _________________________________  ________________________________  _________________________________  ________________________________  167  12) Co-morbidities _________________________________  ________________________________  _________________________________  ________________________________  _________________________________  ________________________________  168  Appendix H WheelCon-M, version 2.1 THE WHEELCHAIR MOBILITY CONFIDENCE SCALE Instructions: This questionnaire will assess your level of confidence when using your wheelchair to do different activities. For this assessment, confidence refers to your belief in your ability to do the activity itself.  For example, an answer to the question “How confident are you that you can lift a 5 lb. box?” might be 82%, whereas “How confident are you that you can lift a 10 lb box?” might be 48%.  Answer all items even if they are activities you would not normally do or are unsure about.  Rate how confident you are by recording a number from 0 to 100 using the scale below:  0  10  Not confident  20  30  40  50  60  70  80  90  100  Completely confident 169  PHYSICAL ENVIRONMENT SUBSCALE  As of now, how confident are you moving your wheelchair:  Confidence Level  1) around furniture in your own home? 2) over carpet? 3) over thresholds, such as between rooms? 4) over freshly mowed grass? 5) through snow? 6) along a paved sidewalk that is cracked and uneven? 7) through a pothole on a sidewalk?  170  As of now, how confident are you moving your wheelchair:  Confidence Level  8) along a level path with unpacked gravel? 9) across a street with light traffic, at a crosswalk without traffic lights? 10) across a street with traffic, at a crosswalk with traffic lights? 11) up a standard ramp? 12) down a standard ramp? 13) up a steep slope? 14) down a steep slope? 15) down a steep slope and stopping as soon as you are off the slope? 16) through a crowded mall?  171  As of now, how confident are you moving your wheelchair:  Confidence Level  17) through a store with just enough space between the aisles for your wheelchair? 18) in tight spaces, such as elevators? 19) through an elevator door? 20) up a curb cut? 21) down a curb cut? 22) over a drainage grate and then up a curb cut? 23) down a curb cut then over a drainage grate? 24) through a puddle then up a curb cut? 25) down a curb cut then through a puddle?  172  As of now, how confident are you moving your wheelchair:  Confidence Level  26) through slush then up a curb cut? 27) down a curb cut then through slush? 28) down a curb cut then though snow? 29) through snow then up a curb cut?  30) up a standard height curb (15cm) without a curb cut? 31) down a standard height curb without a curb cut? 32) through a doorway you have just opened and then closing the door behind you? 33) through a doorway with a spring loaded door?  173  ACTIVITIES PERFORMED WHILE USING A MANUAL WHEELCHAIR SUBSCALE  As of now, how confident are you in doing the following activities:  Confidence Level  1) moving from your wheelchair to your bed? 2) moving from your wheelchair to your toilet? 3) moving from your wheelchair to your bathtub or shower? 4) moving from your wheelchair to your car? 5) moving from the floor to your wheelchair by yourself? 6) making a meal while using your wheelchair? 7) moving your wheelchair on or off public transportation? 8) carrying a hot drink while moving in your wheelchair?  174  As of now, how confident are you in doing the following activities:  Confidence Level  9) managing toileting activities in public bathroom facilities? 10) doing leisure activities, such as going to church or clubs? 11) carrying items, such as groceries, while using your wheelchair?  175  KNOWLEDGE AND PROBLEM SOLVING SUBSCALE  As of now, how confident are you that you:  Confidence Level  1) know what your wheelchair can and can‟t do, separate from your own abilities? For example, a wheelchair with rear anti-tips in place is not able to go up a standard curb, even if the individual is able to do this skill. 2) can recognize a maintenance problem with your wheelchair, such as low tire pressure? 3) can figure out how to move your wheelchair in new situations? 4) can tell someone how to move your wheelchair if it gets stuck? 5) can tell a stranger how to help you safely get back into your wheelchair if you tip over? 6) can tell a cab driver how to fold/unfold your wheelchair, making sure all parts are taken off and put back on properly?  176  ADVOCACY SUBSCALE (Advocacy is the act of pleading or arguing in favour of something)  As of now, how confident are you that you can:  Confidence Level  1) advocate for changes to your wheelchair, such as a different cushion to be more comfortable? 2) advocate for changes in your community, such as having a curb cut added in your neighborhood to improve your accessibility? 3) advocate for changes in your home, such as doorways widened or a ramp installed? 4) advocate for changes to your place of work or school, such as modifications in the bathroom?  177  SOCIAL SITUATIONS SUBSCALE As of now, how confident are you that you can:  Confidence Level  1) put others at ease if they are uncomfortable around a person who uses a wheelchair? 2) comfortably correct other people‟s wrong assumptions about people who use wheelchairs? 3) ask people to move out of your way while moving in your wheelchair? 4)present the self-image you want others to see while doing regular daily activities in public? 5) present yourself as you wish to be seen while doing challenging activities in public? 6) present the image you want in situations where there is a desire or need to impress others, such as during a job interview?  178  EMOTIONS SUBSCALE  As of now, how confident are you that you can: 1) manage any anxious or nervous feelings you may have when moving your wheelchair in new environments? 2) manage any anxious or nervous feelings you may have when trying new or more difficult wheelchair skills? 3) stay calm in stressful situations, such as if your wheelchair were to get stuck or your tire were to blow out?  Total Score  179  Appendix I Interpersonal Support Evaluation List Interpersonal Support Evaluation List (ISEL) -- General Population This scale is made up of a list of statements each of which may or may not be true about you. For each statement check "definitely true" if you are sure it is true about you and "probably true" if you think it is true but are not absolutely certain. Similarly, you should check "definitely false" if you are sure the statement is false and "probably false" if you think it is false but are not absolutely certain.  definitely true  probably true  probably false  definitely false  1. There are several people that I trust to help solve my problems.          2. If I needed help fixing an appliance or repairing my car, there is someone who would help me. 3. When I feel lonely, there are several people I can talk to.                  4. There is no one that I feel comfortable talking to about intimate personal problems. 5. I often meet or talk with family or friends.                  6. If I needed a ride very early in the morning, I would have a hard time finding someone to take me. 7. I feel like I'm not always included by my circle of friends.                  180  8. I have no one who can give me an honest view of how I handle my problems. 9. There are several different people I enjoy spending time with. 10. If I were sick and needed someone (friend, family member, or acquaintance) to take me to the doctor, I would have trouble finding someone. 11. If I wanted to go on a trip for a day, I would have a hard time finding someone to go with me. 12. If I needed a place to stay for a week because of an emergency (for example, water or electricity out in my apartment or house), I could easily find someone who would put me up. 13. I feel that there is no one I can share my most private worries and fear with. 14. If I were sick, I could easily find someone to help me with my daily activities. 15. There is someone I can turn to for advice about handling problems with my family. 16. If I decide one afternoon that I would like to go to a movie that evening, I could easily find someone to go with me. 17. When I need suggestions on how to deal with a personal problem, I know someone I can turn to. 18. If I needed an emergency loan of $20, there is someone (friend, relative, or acquaintance) I could get it from.  definitely true  probably true  probably false  definitely false                                                                                          181  definitely true  probably true  probably false  definitely false  19. Most people I know do not enjoy the same things that I do.          20. There is someone I could turn to for advice about changing or seeking a job. 21. I don't often get invited to do things with others.                                                          27. It would be difficult to find someone who would lend me their car for a few hours. 28. If a family crisis arose, it would be difficult to find someone who could give me good advice about how to handle it. 29. There is at least one person I know whose advice I really trust.                          30. If I needed some help in moving to a different house or apartment, I would have a hard time finding someone to help me.          22. If I had to go out of town for a few weeks, it would be difficult to find someone who would look after my house or apartment (the plants, pets, garden, etc.). 23. There really is no one I can trust to give me good financial advice. 24. If I wanted to have lunch with someone, I could easily find someone to join me. 25. If I was stranded 10 miles from home, there is someone I could call who would come and get me. 26. No one I know would throw a birthday party for me.  182  Appendix J Functioning Everyday with a Wheelchair FUNCTIONING EVERYDAY WITH A WHEELCHAIR (FEW) DIRECTIONS: Please answer the following ten questions by placing an ‘X’ in the box under the response (completely agree, mostly agree, slightly agree, etc.) that best matches your ability to function while in your wheelchair. All examples may not apply to you, and there may be tasks you perform that are not listed. Mark each question only one time. If you answer, *slightly, *mostly, *completely disagree for any question, please circle the feature(s) (i.e., size, fit, postural support, functional) contributing to your disagreement, and write a reason for your disagreement in the Comment section. For questions # 2 through # 10: Size (e.g., wheelchair and seating frame – width, length, height) Fit (e.g., not too large, not too small, allows desired movement) Postural Support (e.g., provides support, stability, and control for the body – bones, muscles, tissues) Functional (e.g., speed, wheels, cushion, controller, backrest, legrests, seat belt, tile/recline system, elevator, lap tray, basket, cane holder, horn, lights)  1. The stability, durability, and dependability features of my wheelchair contribute to my ability to carry out my daily routines as independently, safely and efficiently as possible: (e.g., tasks I want to do, need to do, am required to do – when and where needed) Comments:  Completely Agree  Mostly Agree  Slightly Agree  *Slightly Disagree  *Mostly Disagree  *Completely Disagree  Does not apply  183  2. The size, fit, postural support, and functional features of my wheelchair match my comfort needs as I carry out my daily routines: (e.g., heat/moisture, sitting tolerance, pain, stability) Comments:  Completely Agree  Mostly Agree  Slightly Agree  *Slightly Disagree  *Mostly Disagree  *Completely Disagree  Does not apply  3. The size, fit, postural support and functional features of my wheelchair match my health needs: (e.g., pressure sores, breathing, edema control, medical equipment) Comments:  Completely Agree  Mostly Agree  Slightly Agree  *Slightly Disagree  *Mostly Disagree  *Completely Disagree  Does not apply  4. The size, fit, postural support and functional features of my wheelchair allow me to operate it as independently, safely, and efficiently as possible: (e.g., do what I want it to do when and where I want to do it) Comments:  Completely Agree  Mostly Agree  Slightly Agree  *Slightly Disagree  *Mostly Disagree  *Completely Disagree  Does not apply  5. The size, fit, postural support and functional features of my wheelchair allow me to reach  Completely Agree  Mostly Agree  Slightly Agree  *Slightly Disagree  *Mostly Disagree  *Completely Disagree  Does not apply 184  and carry out tasks at different surface heights as independently, safely, and efficiently as possible: (e.g., table, counters, floors, shelves) Comments:  6. The size, fit, postural support and functional features of my wheelchair allow me to transfer from one surface to another surface as independently, safely, and efficiently as possible: (e.g., bed, toilet, chair) Comments:  Completely Agree  Mostly Agree  Slightly Agree  *Slightly Disagree  *Mostly Disagree  *Completely Disagree  Does not apply  7. The size, fit, postural support, and functional features of my wheelchair allow me to carry out personal care tasks as independently, safely, and efficiently as possible: (e.g., dressing, bowel/bladder care, eating, hygiene)  Completely Agree  Mostly Agree  Slightly Agree  *Slightly Disagree  *Mostly Disagree  *Completely Disagree  Does not apply  185  Comments:  8. The size, fit, postural support and functional features of my wheelchair allow me to get around indoors as independently, safely, and efficiently as possible: (e.g., home, work, mall, restaurants, ramps, obstacles) Comments:  Completely Agree  Mostly Agree  Slightly Agree  *Slightly Disagree  *Mostly Disagree  *Completely Disagree  Does not apply  9. The size, fit, postural support and functional features of my wheelchair allow me to get around outdoors as independently, safely, and efficiently as possible: (e.g., uneven surfaces, dirt, grass, gravel, ramps, obstacles) Comments:  Completely Agree  Mostly Agree  Slightly Agree  *Slightly Disagree  *Mostly Disagree  *Completely Disagree  Does not apply  10. The size, fit, postural support Completely and functional features of my Agree wheelchair allow me to use  Mostly Agree  Slightly Agree  *Slightly Disagree  *Mostly Disagree  *Completely Disagree  Does not apply  186  personal or public transportation as independently, safely, and efficiently as possible: (e.g., secure, slow, ride) Comments:  187  Appendix K Wheelchair Skills Test, version 4.1 Wheelchair Skills Test 4.1 Manual Wheelchair - Wheelchair User Name: ______________________________________  Scoring Guide  Date: __________________ Time start: ___________   = pass  = fail NT = not tested (easier skill has been failed) No Part = wheelchair has no such part  Tester: _________________ Time finish: __________ Individual Skills  Skill   1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11. 12. 13. 14. 15. 16. 17. 18. 19. 20. 21. 22. 23. 24. 25. 26. 27. 28.  Rolls forward 10m Rolls forward 10m in 30s Rolls backward 5m Turns 90 while moving forward L&R Turns 90 while moving backward L&R Turns 180in place L&R Maneuvers sideways L&R Gets through hinged door in both directions Reaches 1.5m high object Picks object from floor Relieves weight from buttocks Transfers from WC to bench and back Folds and unfolds wheelchair Rolls 100m Avoids moving obstacles L&R Ascends 5 incline Descends 5 incline Ascends 10 incline Descends 10 incline Rolls 2m across 5 side-slope L&R Rolls 2m on soft surface Gets over 15cm pot-hole Gets over 2cm threshold Ascends 5cm level change Descends 5cm level change Ascends 15cm curb Descends 15cm curb Performs 30s stationary wheelie    Safety      Comments NT  No Part   188  29. 30. 31. 32.  Turns 180 in place in wheelie position L&R Gets from ground into wheelchair Ascends stairs Descends stairs Total Percentage Scores  (Total passed skills/Total applicable skills)  Additional comments: ______________________________________________________________  189  Appendix L Barthel Index The Barthel Index DIRECTIONS: These are some questions about your ability to look after yourself. They may not seem to apply to you. Please answer them all. Tick one box in each section. 1. Bathing In the bath or shower, do you:  manage on your own? need help getting in and out? need other help? never have a bath or shower? need to be washed in bed?  2. Stairs Do you climb stairs at home:  without any help? with someone carrying your frame? with someone encouraging you? with physical help? not at all? don’t have stairs?  3. Dressing Do you get dressed?  without any help? just with help with buttons? with someone helping you most of the time?  190  4. Mobility Do you walk indoors:  without any help apart from a frame? with one person watching over you? with one person helping you? with more than one person helping? not at all? or do you use a wheelchair independently?  5. Transfer Do you move from bed to chair:  on your own? with a little help from one person? with a lot of help from one or more people? not at all?  6. Feeding Do you eat food:  without any help? with help cutting food or spreading butter? with more help?  7. Toilet Use Do you use the toilet or the commode:  without any help? with some help but can do something? with quite a lot of help?  191  8. Grooming Do you brush your hair and teeth, wash your face and shave:  without help? with help?  9. Bladder Are you continent of urine?  never? less than once a week? less than once a day? more often? or do you have a catheter managed for you?  10. Bowels Do you soil yourself?  never? occasional accident? all the time? Or do you need someone to give you an enema?  192  Appendix M Life Space Assessment Life Space Level During the past four weeks, have you been to …  Life Space Level 1 Other rooms of your home besides the room where you sleep? Life Space Level 2 An area outside your home such as your porch, deck or patio, hallway (of an apartment building) or garage, in your own yard or driveway? Life Space Level 3 Places in your neighborhood, other than your own yard or apartment building? Life Space Level 4 Places outside your neighborhood, but within your town? Life Space Level 5 Places outside your town?  Yes  Frequency How often did you get there?  No  1  0  Yes  No  2  0  Yes  No  3  0  Yes  No  4 Yes  0 No  5  0  Less than 1/wk 1  1-3 times/ wk 2  4-6 times/ wk 3  Less than 1/wk  1-3 times/ wk  4-6 times/ wk  1 Less than 1/wk 1 Less than 1/wk 1 Less than 1/wk 1  2 1-3 times/ wk 2 1-3 times/ wk 2 1-3 times/ wk 2  3 4-6 times/ wk 3 4-6 times/ wk 3 4-6 times/ wk 3  Daily 4  Daily  Independence Did you use aids or equipment? Did you need help from another person? 1 = personal assistance 1.5 = equipment only 2 = no equipment or personal assistance 1 = personal assistance 1.5 = equipment only 2 = no equipment or personal assistance  4 Daily 4 Daily 4 Daily 4  1 = personal assistance 1.5 = equipment only 2 = no equipment or personal assistance 1 = personal assistance 1.5 = equipment only 2 = no equipment or personal assistance 1 = personal assistance 1.5 = equipment only 2 = no equipment or personal assistance  Score Level x Frequency x Independence  ___________ Level 1 Score  ___________ Level 2 Score  ___________ Level 3 Score  ___________ Level 4 Score  ___________ Level 5 Score  193  Appendix N Hospital Anxiety and Depression Scale Hospital Anxiety and Depression Scale (HADS)  This questionnaire is designed to help us know how you feel. Read each item and circle the number corresponding to the response that comes closest to how you have been feeling in the past week. Don‟t take too long over your replies. Your immediate reaction to each item will probably be more accurate than a long thought out response.  A  I feel tense or 'wound up': Most of the time A lot of the time From time to time, occasionally Not at all  D  I still enjoy the things I used to enjoy: Definitely as much Not quite so much Only a little Hardly at all  A  3 2 1 0  0 1 2 3  I get a sort of frightened feeling as if something awful is about to happen: Very definitely and quite badly Yes, but not too badly A little, but it doesn't worry me Not at all  3 2 1 0  194  D  I can laugh and see the funny side of things: As much as I always could Not quite so much now Definitely not so much now Not at all  A  Worrying thoughts go through my mind: A great deal of the time A lot of the time From time to time, but not too often Only occasionally  D  3 2 1 0  I feel cheerful: Not at all Not often Sometimes Most of the time  A  0 1 2 3  3 2 1 0  I can sit at ease and feel relaxed: Definitely Usually Not Often Not at all  0 1 2 3  195  D  I feel as if I am slowed down: Nearly all the time Very often Sometimes Not at all  A  I get a sort of frightened feeling like butterflies in the stomach: Not at all Occasionally Quite Often Very Often  D  0 1 2 3  I have lost interest in my appearance: Definitely I don't take as much care as I should I may not take quite as much care I take just as much care as ever  A  3 2 1 0  3 2 1 0  I feel restless as I have to be on the move: Very much indeed Quite a lot Not very much Not at all  3 2 1 0  196  D  I look forward with enjoyment to things: As much as I ever did Rather less than I used to Definitely less than I used to Hardly at all  A  I get sudden feelings of panic: Very often indeed Quite often Not very often Not at all  D  0 1 2 3  3 2 1 0  I can enjoy a good book or radio or TV program: Often Sometimes Not often Very seldom  0 1 2 3  197  

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