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Social participation, quality of life and attendance at brain injury drop-in centres : an exlporation… McLean, Alison May 2010

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SOCIAL PARTICIPATION, QUALITY OF LIFE AND ATTENDANCE IN BRAIN INJURY DROP-IN CENTRES: AN EXPLORATORY STUDY by Alison May McLean  B.Sc. (OT), The University of British Columbia, 1989  A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE in The Faculty of Graduate Studies (Rehabilitation Sciences)  THE UNIVERSITY OF BRITISH COLUMBIA (Vancouver) April 2010  © Alison May McLean, 2010  ABSTRACT Introduction Many individuals with traumatic brain injury (TBI) experience long term or life-long changes in social participation and quality of life, including social isolation, loneliness, reduced involvement in social and leisure activities, decreased social support networks and reduced satisfaction with life. There are few community-based interventions available to address these issues, and little research on their effectiveness. The brain injury drop-in centre (BIDC) is an innovative model of long-term support not yet addressed in the literature. Purpose (a) To determine if there is a relationship between social participation and subjective quality of life (SQOL) for community-dwelling individuals with TBI. (b) To compare social participation and SQOL for individuals with TBI who attend BIDCs with individuals who do not attend but who have been identified as potentially benefitting from attending. Methods Subjects. Participants were 23 individuals recruited from BIDCs (‘BIDC group’) and 19 individuals recruited through community-based clinicians and service providers (‘Comparison group’). The Comparison group was found to consist of 7 participants who stated that maybe they would attend a BIDC but for the most part were too busy to attend (‘Maybe group’), and 12 participants who stated that yes they would attend but were not aware of BIDCs or experienced a contextual barrier to attendance (‘Yes group’). Design. A cross sectional design was implemented with convenience sampling.  ii    Results The correlational analysis (Chapter Two) showed statistically significant associations involving SQOL and the social and subjective measures of social participation. The comparison study (Chapter Three) found the BIDC group to have, on average, higher levels of SQOL and social participation than the Comparison group, in particular as compared to the Yes group. Conclusions This exploratory study contributes to the TBI literature in showing that it is the more subjective and not objectively measured nature of participation that is associated with SQOL. Findings provide tentative support that attendance at BIDCs may benefit social participation and SQOL. This study provides a foundation for more rigorous quantitative investigation of the effectiveness and efficacy of BIDCs, as well as direction for qualitative studies to further explore social participation, SQOL and the experience of attending BIDCs.    iii    TABLE OF CONTENTS Abstract......................................................................................................................................... ii Table of contents ......................................................................................................................... iv List of tables ............................................................................................................................... vii List of abbreviations .................................................................................................................. viii Acknowledgements...................................................................................................................... ix Co-authorship statement ............................................................................................................... x Chapter One: Introduction and Literature Review ....................................................................... 1 Epidemiology and impact of traumatic brain injury.............................................................. 1 Participation and quality of life ............................................................................................. 2 Community integration or participation ......................................................................... 2 Social participation outcomes.................................................................................... 4 Predictors of social participation ............................................................................... 6 Quality of life ................................................................................................................. 6 Quality of life outcomes and predictors..................................................................... 8 Association between participation and quality of life .................................................... 8 Community-based TBI rehabilitation interventions .............................................................. 9 The brain injury drop-in centre............................................................................................ 11 The hypotheses/research questions...................................................................................... 14 The following chapters ........................................................................................................ 15 References ........................................................................................................................... 18 Chapter Two: The correlational study ........................................................................................ 29 Introduction ........................................................................................................................ 29 Methods ............................................................................................................................... 32 Participants ................................................................................................................... 32 Study design ................................................................................................................. 33 Measures....................................................................................................................... 35 Participant characteristics ........................................................................................ 35 Social participation .................................................................................................. 36 Subjective quality of life.......................................................................................... 37 Statistical analysis ........................................................................................................ 37 iv    Results ................................................................................................................................. 39 Participant characteristics............................................................................................. 39 Social participation and subjective quality of life ........................................................ 40 Correlational analyses .................................................................................................. 40 Discussion and conclusions ................................................................................................. 41 Limitations.................................................................................................................... 45 Future research ............................................................................................................. 45 Clinical implications..................................................................................................... 46 Conclusion.................................................................................................................... 48 References ........................................................................................................................... 55 Chapter Three: The comparison study........................................................................................ 66 Introduction ......................................................................................................................... 66 The research question ................................................................................................... 68 Methods ............................................................................................................................... 69 Participants ................................................................................................................... 69 Study design ................................................................................................................. 70 Measures....................................................................................................................... 72 Participant characteristics ........................................................................................ 72 Involvement in a BIDC............................................................................................ 73 Social participation .................................................................................................. 73 Subjective quality of life.......................................................................................... 74 Statistical analysis ........................................................................................................ 75 Results ................................................................................................................................. 76 Participant characteristics............................................................................................. 77 Descriptive findings relating to attendance at a BIDC................................................. 79 Comparison of social participation and SQOL ............................................................ 80 Discussion and conclusion................................................................................................... 82 Limitations.................................................................................................................... 86 Future research ............................................................................................................. 88 Clinical implications..................................................................................................... 90 Conclusion.................................................................................................................... 91 v    References ........................................................................................................................... 99 Chapter Four: Final discussion and conclusions ...................................................................... 108 Overview ........................................................................................................................... 108 Summary of findings ......................................................................................................... 109 Correlational study ..................................................................................................... 109 Comparison study....................................................................................................... 110 Clinical significance ................................................................................................... 111 General community integration ............................................................................. 112 Happiness............................................................................................................... 113 Global quality of life.............................................................................................. 113 Perceived social supports....................................................................................... 114 Summary................................................................................................................ 114 Concluding discussion with future directions ................................................................... 114 Limitations.................................................................................................................. 114 Future directions for research..................................................................................... 116 Clinical recommendations .......................................................................................... 117 Summary..................................................................................................................... 119 References ......................................................................................................................... 122 Appendices: Appendix A – Ethics certificates ....................................................................................... 125 Appendix B – Participant consent form ............................................................................ 132 Appendix C – Measures used: details about each measure ............................................... 136 References .................................................................................................................. 148 Appendix D – Study-specific questionnaires (‘Subject Characteristics’ and ‘Brain Injury Drop-In Centre Attendance Patterns’) ...................................................... 153 Appendix E – Missing data ............................................................................................... 160 References .................................................................................................................. 161 Appendix F – Correlational study: linearity ...................................................................... 162 Appendix G – Comparison study: sample size testing ...................................................... 166 References .................................................................................................................. 169  vi    LIST OF TABLES Table 1.1  Community-based rehabilitation interventions addressing activity and participation for individuals with TBI............................................. 16  Table 2.1  Measures used ..................................................................................................... 49  Table 2.2  Participant characteristics (correlational study).................................................. 51  Table 2.3  Outcome variables............................................................................................... 53  Table 2.4  Intercorrelations between social participation and subjective quality of life....................................................................................................... 54  Table 3.1  Participant characteristics: mean scores (standard deviations) proportions (n) and comparison results............................................................... 92  Table 3.2  Social participation and SQOL: mean scores (standard deviations) and comparison results........................................................................................ 96  Table 3.3  Social participation and SQOL: percentages representing clinical Significance, and comparison results.................................................................. 98  Table 4.1  Clinical significance in relation to other published studies .............................. 120  vii    LIST OF ABBREVIATIONS AKHS  Abdel-Khalek Happiness Scale  ASAP  Adult Subjective Assessment of Participation  BIDC  brain injury drop-in centre  CIQ-SI  Community Integration Questionnaire, Social Integration Scale  FrSBe  Frontal Systems Behavior Rating Scale  ICF  International Classification of Functioning, Disability and Health  M  mean score  MoCA  Montreal Cognitive Assessment  MPAI-4  Mayo Portland Adaptability Inventory, version 4  NS  not statistically significant  SD  standard deviation  SF-36 GHQ  Short Form 36 General Health Question  SQOL  subjective quality of life  SRDS  Zung Self-Rating Depression Scale  QOL  quality of life  QOLHQ  Quality of Life and Health Questionnaire  SPS  Social Provisions Scale  TBI  traumatic brain injury  UCLA-LS  University of California at Los Angeles Loneliness Scale  UK  United Kingdom  USA  United States of America  WHO  World Health Organization  viii    ACKNOWLEDGMENTS I thank a number of individuals who supported me through, and contributed toward, my research studies. In particular, I thank Dr. Tal Jarus for her never waning encouragement and always thoughtful input and feedback, for always making time for me, and for being instrumental in guiding me through the many steps it took to evolve my skills from clinician to fledgling researcher. I also thank my other committee members, Dr. Lyn Jongbloed and Dr. Anita Hubley, from whom I have learned so much (including in their courses) and who have provided me with such insightful feedback and suggestions along the way. I extend a heartfelt thank you to all of the participants in this study. I hope that by sharing the results of the study to a wide audience, I will be able to contribute to continued improvement of community-based supports for individuals with brain injury. I thank very much the brain injury drop-in centres in the Lower Mainland and Fraser Valley for their warm welcome, support and recruitment efforts, and also the many clinicians and service providers who were so encouraging of this research project and assisted with recruitment. I thank my occupational therapist colleague, Adele MacNeill, whose professionalism, insights, and contribution and patience as a research assistant helped enormously in the process of data collection for this research project. I am also very grateful to my funders: the Canadian Institutes of Health Research, the UBC College of Health Disciplines (Cedar Lodge Endowment Fund), the Canadian Occupational Therapy Foundation, and the University of British Columbia (for the Cordula and Gunter Paetzold Fellowship and the Louise McGregor and Margaret Hood scholarships). Thank you for helping to make this research project possible!  ix    CO-AUTHORSHIP STATEMENT  Chapters Two and Three will each be revised into a manuscript co-authored with Dr. Tal Jarus, Dr. Lyn Jongbloed and Dr. Anita Hubley at the University of British Columbia (UBC). As the first author of each of these manuscripts, my contributions included formulating the hypotheses/research questions, conducting the literature reviews, identifying the research design, selecting the measurements, preparing the ethics submissions, recruiting participants, collecting the data (with some assistance from a research assistant), analyzing the data, interpreting the data, and preparing the first version of each manuscript. I will be responsible for rewriting the manuscripts and submitting them for publication. Dr. Tal Jarus provided feedback and input throughout each step of the project. All coauthors contributed to finalizing the hypotheses/research questions, research design and selection of measurement tools. In addition, Dr. Anita Hubley reviewed the submission to the UBC Behavioural Research Ethics Board and contributed to planning the statistical analyses. All coauthors reviewed the results of data analyses and contributed to the interpretation of data.  x    CHAPTER ONE: INTRODUCTION AND LITERATURE REVIEW Epidemiology and impact of traumatic brain injury Traumatic brain injury (TBI) is a major health issue, with potential serious long-term outcomes1. Worldwide, TBI is a leading cause of disability2. Each year in developed countries, 100 to 200 people out of 100,000 require hospitalization as a result of TBI3, 4. In the USA, this represents the highest incidence rate of all injury categories5. In Canada, in 2003 to 2004, hospital admissions for TBI represented 9% of all trauma admissions6. It is estimated that 43% of those who are hospitalized with TBI go on to experience long-term disability7. There is a significant cost of TBI and the resulting disability to society and to the individual with TBI. The cost to society includes the expense of medical care and lost productivity. A Canadian study investigated 10-year outcomes following initial hospitalization for TBI and found that, as compared to the general population, individuals with TBI had higher physician claims and more frequent and longer hospital stays8. This included that, after controlling for pre-injury mental health and other confounders, individuals with TBI had almost three times the number of hospitalizations for mental health-related issues as compared to the general population8. For all individuals hospitalized in the USA in 2000 with a TBI, the total lifetime cost for medical care has been calculated at US$7.4 billion, including physical care only and not other services such as mental health or vocational rehabilitation5. For the same cohort, the total lifetime cost for productivity losses has been estimated at US$51.2 billion, higher than for any other injury category5. Individuals with TBI, in particular when the injury is moderate to severe, may experience physical, cognitive, communication, behavioural, and/or emotional impairments for many years, if not indefinitely9. These impairments may affect all aspects of a return to successful living in 1    the community, including for work or school, independent living, personal and social relationships, and leisure activities9‐13. For example, 20 to 40% of individuals with TBI who were employed prior to injury are unable to return to work in any capacity11, 14‐16, despite provision of vocational rehabilitation services17. A high proportion of individuals with TBI experiences reduced involvement in social and leisure activities11, 18‐20, as well as reduced social networks and increased social isolation20‐22. This includes disruption in family relationships14, 20,  . In addition, many individuals with TBI experience low quality of life such as measured by  23, 24  subjective well-being and life satisfaction21, 25, 26. Participation and quality of life For individuals with TBI, it has been suggested that the primary goals for rehabilitation include a return to active and purposeful roles and activities at home and in the community27‐29, or, more succinctly, community integration30 or participation27, 31. Another primary goal is enhanced quality of life30, 32‐35 . Following are findings from the literature relating to these goal areas. Community integration or participation For individuals with TBI, an early conceptualization of community integration was level of functional independence for social, productive, and home activities, as constituted by the three subscales of the Community Integration Questionnaire (CIQ) 36. This understanding was broadened by McColl and colleagues34, 37 who identified that, for individuals with TBI, community integration includes not only social, productive and home activities, described by McColl as occupation (referring to leisure and productivity) and independent living, but also social support. Other researchers have also recognized that successful independent living is measured not only by level of involvement in an activity, but also the individual’s subjective 2    experience of integration into a community38. More recently in the rehabilitation sciences literature in general39, and TBI rehabilitation literature more specifically13, 27, 40‐43, community integration has been seen as closely related and perhaps analogous to participation. Both community integration and participation involve consideration of preferences and interests44, satisfaction with performance44‐46, enjoyment44, frequency and intensity of involvement in activities44, 45, motivation to change level of engagement in activities40, feelings of belonging and sense of community42, and availability of support and opportunities to participate47. The World Health Organization’s (WHO) International Classification of Functioning, Disability and Health (ICF), one of the best known models of disability48, defines participation as involvement in a life situation49. This model’s proposed definition of involvement includes ‘...taking part, being included or engaged in an area of life, being accepted, or having access to needed resources…’49 (p. 15). The ICF indicates that an individual’s level of participation is the result of an interaction between their health condition, personal and environmental contextual factors, body structures and functions, and performance of activities (execution of a task or action). The nine domains of activity and participation are learning and applying knowledge, general tasks and demands, communication, mobility, self-care, domestic life, interpersonal interactions and relationships, major life areas, and community, social and civic life49. Social participation is another term found in the literature. This is considered by some as interchangeable with community integration and participation27, 43. However, others see community integration and participation as broader constructs, and social integration or social participation as only one dimension36. This study takes the latter perspective. For this study, social participation is operationalized as involvement in leisure activities, social interactions and a social network. This study recognizes that, in assessing social participation, there needs to be 3    consideration not only of diversity, frequency and intensity of social and leisure activities and roles, but also to the individual’s subjective experience, including satisfaction with performance, enjoyment, and availability of social supports. Social participation outcomes. More than 35 outcome studies have addressed social participation outcomes for individuals with TBI. A common finding is that reduced participation in leisure and social activities is a major concern, including for many individuals with TBI who have been successful in returning to work in some capacity19, 36, 50. One of the early landmark TBI outcome studies51 found that, for individuals with TBI, including those who were successful in returning to work, there was a significant change in leisure and social participation. At two years post injury, half of the sample participated in fewer leisure activities than prior to injury, with the more severely injured having the fewest social encounters and social outings. Subsequent outcome studies, whether at 6 months or 24 years post TBI, have reported similar findings. Individuals with TBI have fewer hobbies, pastimes, recreation and interests than prior to injury11, 14, 20, 52‐54 and compared to individuals without TBI40, 55. There is a greater reduction in participation in active pursuits and activities outside of the home or involving others than for passive and solitary activities11, 18, 40. Not only are individuals with TBI participating less in leisure and social activities, but they also have low satisfaction in these areas56. A number of studies have reported a large proportion (40 to 45%) of individuals responding that they would like to find places and opportunities to socialize with others, participate in physical leisure activity, and/or do more activities outside of the home18, 57, 58. Individuals with TBI report fewer friends21, 23, 54 and less social interaction with others, in particular outside of their home and family20, 55. Although some of these individuals may not want any relationships, many of them report wanting friends and a partner54. Not only do 4    individuals with TBI experience smaller social networks than individuals without TBI22, but they also have low satisfaction with their interpersonal relationships16, 26, 56. In one qualitative study19, a major theme was loss of friends, with one participant describing this as ‘...an enormous source of sorrow...’ (p. 44). In another qualitative study, individuals with TBI described a strong need for services to foster human connectedness and social belonging59. Even though the size of social networks overall tends to decrease, the extent of contact with, and support from, family members may increase21, 60, 61. This may relate to the need to move back with parents and become financially dependent on family20, 21, 59, 62. However, there is evidence of persistent and long term problems with marital and other family relationships14, 20, 23, 24, and family members may experience a high sense of burden23. It may be that perceived support (quality of support) is more critical than the actual number of individuals in a person’s support network (quantity of support). Stronger associations have been found between health outcomes and measures of perceived support, than measures of received supports22, 63. Measures of perceived available supports have also been found to not be related to measures of received support and support networks64. A recent study involving individuals with TBI found that, despite the size of their support networks remaining similar to pre-injury, their satisfaction with support tended to be decreased22. Social participation outcomes do not appear to improve over the long term and may worsen11, 22, 65. One study found that, at 10 to 20 years post injury, 31.1% of respondents had no friends outside of their family, and 8.2% of respondents had no social support at all23. Another study found that, at 20 years post TBI, 42% of respondents had no interests, many of the remainder had only one interest, and 61% of respondents had no friends or acquaintances although they did have contact with one or more family members54. 5    Predictors of social participation. There are a number of factors associated with low levels of community integration or social participation. These include more severe TBI13, more challenging behaviours such as disinhibition, impulsivity, frequent mood changes and irritability13, 61, lack of insight54, and other personality changes and executive impairment, such as lack of initiative and difficulty carrying out plans11, 54. Inappropriate behaviours may lead to rejection from peers, and individuals with TBI lack the strength, durability, reciprocity, and commitment required of more enduring relationships61. Of note is that cognitive and behavioural changes, as well as fatigue, depression, and anxiety, are stronger predictors than physical impairment of reduced social participation66. Quality of life Despite the term ‘quality of life’ having evolved over time67, there is no consensus or clarity as to a conceptual model or operational definition68. There is agreement, however, that quality of life is multi-dimensional in nature, and that there is a strong subjective component25, 68,  . The WHO69 defines quality of life as an ‘...individual’s perception of their position in life in  69  the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns…’ (p. 1405). The WHO gives six broad dimensions or domains: the individual’s physical state, cognitive and affective state, level of independence, social relationships, environment and spirituality/religion/personal beliefs, with the latter relating to the person’s perception of meaning in life69. Quality of life is often viewed as having two distinct components: objective, that is, external to the individual’s perspective, and subjective, involving the individual’s emotional evaluation and cognitive perception of their life experience25, 70, 71. Subjective quality of life (SQOL) is defined by the person72. SQOL may involve or be synonymous with life satisfaction, 6    subjective well-being25, 65, 73, happiness74 and ‘the good life’75. Subjective quality of life or subjective well-being reflects an individual’s evaluation of their life76. It reflects their perspective of the match or mismatch between their current life status and achievements on the one hand and, on the other hand, their expectations, priorities and how they would like their life to be, including as it relates to goals, aspirations, values, standards, desires, wants, and needs25,  . Subjective well-being is defined in simple terms as how an individual thinks (cognitive  70  component) and feels (affective component) about his or her life77. Life satisfaction has been identified as representing the cognitive and global appraisal of one’s life as a whole78, 79, based on information relevant to the individual80. This may be broken down into specific domains, such as satisfaction with work life, transportation, health care, public health, social services, parks and recreation, families and environment81. The affective perspective of subjective wellbeing includes presence of positive affect, such as contentment or joy, and absence of negative affect, such as anger, sadness, anxiety, worry, guilt, shame, loneliness or helplessness81. A review of the TBI literature indicates that, to date, the primary dimension of SQOL that has been addressed is life satisfaction82‐84. Few, if any, studies have considered the affective perspective of SQOL for individuals with TBI. For this study, SQOL will be operationalized in terms of an individual’s overall appraisal of their quality of life, as well as their self-perceived levels of happiness and feelings of loneliness. Happiness was selected to represent the individual’s appraisal of presence of positive affect, because it is the best recognized component of pleasant affect described in the literature and is often used interchangeably with subjective well-being76, 84, 85. Loneliness was selected because feelings of loneliness have been found to predict lower levels of life satisfaction86 and SQOL87. Furthermore, by anecdotal reports, 7    happiness and loneliness are the components of affect that may be most strongly influenced by attendance at a brain injury drop-in centre (BIDC), a primary focus of this study. Quality of life outcomes and predictors. Individuals with TBI have been found, on average, to have low subjective well-being or life satisfaction as compared to their pre-injury status25 and as compared to adults without disability21, 25, 26, 83. Much research has explored factors associated with, and predictors of, subjective well-being. For the general population, variables such as income, education, age, gender, and social class have been found to have no or low correlation with subjective well-being, whereas number of close friends and recreational activities are amongst those factors with moderate correlations75. It is suggested that, for individuals with acquired physical disability, connections to other people such as socializing with others and helping others are among those actions that promote the good life or subjective well-being75. For individuals with TBI, there is some evidence that severity of injury predicts quality of life88. Other and perhaps stronger predictors include multiple losses in the areas of work, income, friendships and other relationships, opportunity to help and encourage others, active and passive recreation, understanding and expressing oneself, physical and mental health, and sense of a future25. Association between participation and quality of life For individuals with TBI, a relationship has been found between participation and quality of life, although this relationship is not yet clear and there is mixed evidence as to which aspect of participation is more strongly associated with quality of life89. Studies have found life satisfaction and global quality of life to be associated with general community integration21, 70, 88, social integration26, 65, the ability to engage in leisure activities71, and emotional and social  8    support21, 71. However, one study found that, even though perceived social support was a predictor of life satisfaction, the degree of involvement in community activities was not90. Community-based TBI rehabilitation interventions For many individuals with TBI, rehabilitation is long-term, and for some, life-long. There are three phases to TBI rehabilitation: acute, post-acute, and community. The acute and postacute phases focus on medical stabilization, remediation of cognitive, physical and behavioural impairments, and restoration of function such as for self-care, mobility and communication. Restoration of function may continue in the community phase, but the primary focus shifts to reintegration into the community. Much research has focused on identifying best practice for rehabilitation in the acute and post-acute stages91, 92. However, although it has been identified that long-term rehabilitation and support service interventions are required for individuals with TBI11, 59, there has been little empirical research addressing community-based interventions. Studies on the effectiveness of rehabilitation have only just begun to address the areas of social participation and quality of life27. This includes that there are very few reports of interventions addressing the social network and support needs of individuals following TBI93. Further studies aimed at interventions for improving community integration30 and to better define the contributors to quality of life for people with TBI88, 92 are required. A number of different community-based therapies, programs, services and supports (to be referred to collectively as ‘interventions’) have been developed over the past 10 years that address activity and participation for individuals with TBI, including in North America, Australia, and the UK. Many of these interventions, as shown in table 1.1, are described in the research literature, although not all of them have undergone empirical scrutiny.  9    For the purposes of this study, these interventions are categorized as (a) clinical interventions which are provided by health care clinicians, (b) support service interventions which are provided by paid staff but not health care clinicians, and (c) unpaid supports, which are provided by family members, friends or co-workers. Because support service interventions do not rely on costly health care professionals, they are potentially more cost effective and feasible to provide on an ongoing basis than clinical interventions. Unpaid supports are the most-cost effective of all, but they depend on the goodwill of others to be maintained, and there is a risk of caregiver distress and burn-out to family and others94, 95. As can be seen in table 1.1, a number of these interventions specifically address social participation. Unfortunately, as is evident not only from the author’s clinical experience but also from a review of the literature, many if not most of these clinical and support service interventions are not widely available. This is for a number of reasons. For example, the clinical interventions, where they exist, are typically time-limited owing to the costs involved with the clinical specialization required. Some interventions that are described in the literature were pilot studies and it is not known if they continued past that point. Some of the non-clinical support services may not exist because they often do not meet the mandate of health care funders and therefore may not be funded and/or they are difficult to sustain. Because many of the paid interventions are not widely available, as noted by Kalpakjian21, ‘...the burden of community integration and social support often falls on the family who themselves may have limited resources and energies…’ (p. 263). It is promising that so many different and innovative social participation interventions have been described in the literature, and that those interventions that have undergone empirical investigation have shown some benefit to individuals with TBI34, 35. However, more research is 10    required30, 35, 91, 96, including on those interventions that do exist. In particular, the BIDC, a long term support service that does not depend on costly clinical expertise and is not yet addressed in the literature, warrants investigation. The brain injury drop-in centre A BIDC is located in a community setting rather than a hospital or health clinic and provides formal and informal social and recreational activities, peer support and educational inservices for adults with brain injury. There are at least nine BIDCs located in British Columbia, most of which are funded in whole or in part by health authorities. Some of these BIDCs are open each weekday and others are open once or twice per week. Many BIDCs offer at least one or two meals during the week. A referral is not required from a physician or other clinician for attendance. Criteria for attendance typically include that the individual has experienced an acquired brain injury, provides his or her own attendant caregiver if one is required, and follows basic rules of conduct relating to use of appropriate behaviours, for example, no use of alcohol or drugs on the premises. No appointments are necessary, although participants may need to sign up for, and commit to, attendance in specific activities, group outings or education sessions. Individuals may attend as often or little as they choose, and for as long as they like. BIDCs may be cost effective not only in comparison to clinical interventions, but also to support services that provide one-to-one support. BIDCs have a low staff to client ratio; for example, there may be one to two staff members for a dozen or more attendees in a day. A BIDC provides a comprehensive array of activities and supports for the long term and, by the nature of these, would appear to address social participation and quality of life. Anecdotal reports from staff, participants, family members, and caregivers indicate that individuals who attend a BIDC may experience improved social skills, reduced social isolation, improved mood, 11    and improved well-being. However, there is no empirical evidence to support these reports. To the best of my knowledge, to date, there has been no systematic investigation of these claimed benefits to date. There is no description in the literature of a BIDC. There is some description of drop-in centres for individuals with mental illness97, although I am not aware of any empirical research on such drop-in centres. There are other programs described for individuals with brain injury which have some commonalities to a drop-in centre and which do have some empirical support. The Clubhouse, initially developed for individuals with mental illness98, is one such program. A Clubhouse is described in the TBI rehabilitation literature99 as a ‘...consumer-directed, community-based, day program that is operated by and for its members who experience disability after brain injury…’ (p. 17). However, the primary focus of a Clubhouse is on employment skills. TBI research relating the effects of attendance at a Clubhouse has focused on return-to-work outcomes99. As determined in an extensive literature search on TBI community-based rehabilitation interventions, there are no published research findings relating the Clubhouse model and outcomes for social participation. The two other programs described in the literature with some similar characteristics of a BIDC are the Headway program with over 100 groups and branches located in the UK100, 101 and SteppingStones, a day program located in the USA102, 103. Both are similar to a BIDC in that there is a primary focus on improving social participation and quality of life. However, by their description, SteppingStones and many of the Headway programs appear to be more structured than a BIDC, involve professional health care providers, and include a focus on providing support to caregivers. There may also be a stronger emphasis on involvement by members and  12    volunteers to perform infrastructure activities and run the programs, than is the case for a BIDC. Both of these programs are funded through charities. The literature provides some qualitative information relating to social participation outcomes for the Headway and SteppingStones programs. Using qualitative research, a Headway program was found to provide a sense of purpose and a safety net, an opportunity to develop social contacts and form long-lasting relationships, emotional and social support during times of struggle with family relationships, and valuable peer support100. A survey of SteppingStones members found that members felt that their emotional, social, and quality of life needs were being met both through formal programs (an emotions group and ‘Brain Power’ group) and the informal social environment103. One member stated, ‘...My day is so much better when I come here than if I’d stayed home. If I’d stayed home, and there wasn’t a SteppingStones, I’d be so depressed…’103 (p. 1275). Leisure outcomes are not discussed in the literature relating to the Clubhouse, Headway, or SteppingStones programs. However, there is some indication from other studies that positive leisure outcomes may be achieved through the type of programming offered at a BIDC. For example, in a study of 25 individuals with severe TBI who participated for six months in a funded ‘Community Group Program’ where they were assisted to participate in leisure activities, those individuals who engaged regularly in these activities over the six months reported improvements in social integration, a reduction in frequency of symptoms of depression, and increased happiness and sense of belonging104. Findings from an investigation specific to BIDCs would assist funders, the agencies that staff them, referrers, and the individuals who attend to better understand the benefits specific to BIDCs, and perhaps ways to enhance BIDCs.  13    The hypotheses/research questions The aim of this research is to compare social participation and SQOL for a group of individuals who attend a BIDC, with a group who do not. Another aim is to determine if there is a relationship between social participation and SQOL for the total sample. Specific hypotheses are as follows. 1. For community-dwelling adults with TBI, there will be positive correlations between social participation and SQOL measures. This will be determined by analyzing the association between each measure of SQOL and each measure of social participation. Social participation will be measured by (a) the social integration scale of the Community Integration Questionnaire, (b) the Social Provisions Scale and (c) six of the scales of the Adult Subjective Assessment of Participation (diversity, frequency/intensity, with whom one participates, where one participates, enjoyment, and satisfaction with performance). SQOL will be measured by (a) the global rating scale of the Quality of Life and Health Questionnaire, (b) the University of California Los Angeles Lneliness Scale and (c) the Abdel-Khalek Happiness Scale. 2. Community-dwelling adults with TBI and who attend a BIDC will have higher social participation than these who are identified as potentially benefitting from attending BIDCs but who do not attend. 3. Community-dwelling adults with TBI and who attend a BIDC will have higher SQOL (subjective well-being) than these who are identified as potentially benefitting from attending BIDCs but who do not attend.  14    The following chapters This study was conducted to fulfill the requirements of a Master of Science thesis. The results are provided in a manuscript-based format, that is, two manuscripts (chapters) suitable for submission for publication, prefaced by this introductory chapter and followed by a concluding discussion chapter. The appendices contain copies of the ethics certificates and participant consent form, detailed information about the measures used, and details relating to the statistical analyses used including management of missing data, linearity and sample size testing. In total, there are four chapters to this thesis. Chapter 2, the first manuscript, consists of the correlational analyses, focusing on the first hypothesis. This portion of the study involved all 46 individuals who participated in the study. Chapter 3, the second manuscript, provides the methods and results of the cross-sectional comparison analyses, focusing on the second and third hypotheses. The comparisons were between the BIDC group, which consisted of 23 individuals who attend a BIDC, and the Comparison group, which was comprised of 19 of the individuals who do not attend a BIDC. Chapter 4 provides a final discussion and conclusions.  15    Table 1.1: Community-based rehabilitation interventions addressing activity and participation for individuals with TBI Rehabilitation interventions Clinical interventions  Activity and participation categories Independent living -home-based programs*  105‐107  Productivity -supported employment, job coaching*  Social Participation 9, 108‐110  -vocational case coordination + 111  -clinician-led support groups* 112‐114  -social skills training* 115, 116 -network of support + 117 Multi-focus clinical interventions (independent living, productivity, social participation) -psychologist-led comprehensive (holistic) day treatment program/therapeutic milieu program* 118‐120 -modified psychologist-led comprehensive day treatment program* 121, 122 -outpatient services (multi/inter-disciplinary)* 123‐125 -psychological counselling* 126, 127 -residential and transitional living programs* 128‐130 -home/community-based program (multi/inter-disciplinary)* 125, 131, 132 -community outreach team*133 -telephone follow-up* 134, 135 -family education/support/empowerment program* 136 -case management + 91, 137 -substance abuse programs + 138, 139  16    Table 1.1 (continued): Community-based rehabilitation interventions addressing activity and participation for individuals with TBI Independent living  Productivity  Social Participation  Support service  -independent living centres + 140  -community day program* 103,   interventions  -group home ++  141  -family care home ++  -peer support* 12  -life skills worker ++  -one-to-one volunteer 142 -community leisure groups* 104 -psychosocial support group* 143 -circle of support + 144 -life skills worker ++ -drop-in centre ++ Dual focus support service interventions (productivity and social participation) -Clubhouse + 99  Unpaid supports  -employer/co-worker support and accommodations +  145, 146  -family and friends as supports + 61, 93, 147  * Empirical studies are provided in the literature +Descriptions of interventions/supports are provided in the literature, but with no empirical evidence ++No information is found in the literature, but the intervention/support is in existence as per author’s clinical experience  17    References [1]  Stålnacke B. 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TBI club: A psychosocial support group for adults with traumatic brain injury. Journal of Cognitive Rehabilitation 2000;18:22-7. [144] Kuipers P, Kendall M, Fleming J, Tate R. Comparison of the Sydney Psychosocial Reintegration Scale (SPRS) with the Community Integration Questionnaire (CIQ): Psychometric properties. Brain Injury 2004;18:161-77. [145] Curl RM, Fraser RT, Cook RG, Clemmons D. Traumatic brain injury vocational rehabilitation: Preliminary findings for the coworker as trainer project. Journal of Head Trauma Rehabilitation 1996;11:75-85. [146] Inge K, Strobel W, Wehman P, Todd J, Targett P. Vocational outcomes for persons with severe physical disabilities: Design and implementation of workplace supports. NeuroRehabilitation 2000;15:175-87. [147] Zencius AH, Wesolowski MD. Is the social network analysis necessary in the rehabilitation of individuals with head injury? Brain Injury 1999;13:723-7.  28    CHAPTER TWO: THE CORRELATIONAL STUDY 1 The association between social participation and subjective quality of life for nonemployed, community-dwelling adults with moderate to severe traumatic brain injury  Introduction Worldwide, traumatic brain injury (TBI) is a leading cause of lifelong disability1‐4. It is estimated that, in 2005, 3.17 million people in the USA, or 1.1% of the total US population, were living with disability resulting from TBI5. Disability is conceptualized by the World Health Organization’s International Classification of Functioning, Disability and Health (ICF) as impairment, activity limitations and participation restrictions6. For many individuals with TBI, in particular when moderate to severe, long term disability is experienced in terms of physical, cognitive, behavioural and/or emotional impairment1, 3, 7 and activity limitations and participation restrictions for work or school, independent living, and/or social and leisure activities8‐12. In addition to disability, many individuals with TBI experience a reduced quality of life13‐15. It has been suggested that the primary goals of TBI rehabilitation are community integration or participation16‐19 and quality of life18, 20‐23. Community integration is concerned with a person’s activities and life roles, and physical and social inclusion in community life11. In the rehabilitation sciences literature, community integration has largely been replaced by the term participation16, 24, 25. The ICF defines participation as involvement in a life situation6, with the proposed definition of involvement to include ‘...taking part, being included or engaged in                                                              1  A version of this chapter will be submitted for publication: McLean AM, Jarus T, Jongbloed L, Hubley AM. The association between social participation and subjective quality of life for individuals with moderate to severe traumatic brain injury.  29    an area of life, being accepted, or having access to needed resources…’6 (p. 15). For individuals with TBI, the objective perspective of community integration or participation considers the level of functional independence for home, social and productive activities26, the frequency and intensity of involvement26‐28, and having disability-needs identified and supported29. Participation also involves the subjective experience of integration into a community30, including a sense of belonging31, 32, perceived relationships or social supports31, 32, satisfaction with living arrangement31, preferences and interests27, enjoyment27, satisfaction with performance27, 28, 33, and motivation to change level of engagement in activities24. One aspect of participation of particular concern for individuals with TBI is social participation9, 34, 35, that is, involvement in social and leisure activities and within a social network. A high proportion of individuals with TBI, including many of those individuals who have been successful in returning to work26, 36, experiences reduced involvement in social and leisure activities24, 34, 37. Reduced involvement refers to a decline in leisure and social activities38‐ , low satisfaction for social and leisure activities41, and a reduction in active pursuits and  40  activities outside of the home9, 42. Further, many individuals with TBI experience social isolation and reduced social networks35, 39, 43, including fewer friends15, 44, disruption in family relationships38, 39, 44, 45, and low satisfaction with interpersonal relationships41, 46, 47. Quality of life, the other primary goal of TBI rehabilitation, is a multi-dimensional construct14, 48, 49. Quality of life is defined by the World Health Organization as an ‘...individual’s perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns…’48 (p. 1405). The subjective or ‘insider’ dimension of quality of life is defined by the person50 and involves the 30    individual’s emotional evaluation and cognitive perspective of his or her life experience14, 51, 52. Subjective quality of life (SQOL), or subjective well-being14, 53‐55, has a cognitive component and an affective component14, 51, 52, 56. The cognitive component may be represented by life satisfaction or a global appraisal of one’s life as a whole14, 57. The affective component includes presence of positive affect, such as happiness, and absence of negative affect, such as sadness or loneliness14, 58, 59. An individual’s SQOL needs to be understood to broaden our understanding of his or her experience and overall quality of life50, 52, 60 and better guide our rehabilitation interventions50, 52,  . For individuals with TBI, more is known about the life satisfaction aspect of SQOL than  61  about the affective dimensions such as happiness14. For example, researchers have learned that people with TBI experience lower levels of life satisfaction than individuals with spinal cord injury60 and without disability14, 15, 47, 62‐64. For individuals with TBI, many studies have found life satisfaction to be most strongly associated with the participation dimension of disability, less strongly related to activity, and weakly if at all related to impairment61, 65, although some studies have found severity of TBI to have some contribution in predicting life satisfaction or overall SQOL62, 66. Being employed may be the aspect of participation that is most strongly associated with higher levels of life satisfaction63, 67‐69. For this population, life satisfaction is also associated with social participation, specifically with social integration as measured by the Community Integration Questionnaire47, 53, 63. There is still much to be learned about social participation and SQOL for individuals with TBI, including further examination of the association between social participation and SQOL. The aim of this research study was to test the hypothesis that, for community-dwelling individuals with moderate to severe TBI, there is a positive correlation between measures of 31    social participation (involvement in social and leisure activities and a social network) and measures of SQOL (cognitive and affective appraisal of subjective well-being). Methods Participants The sample consisted of 46 community-dwelling and unemployed adults with TBI. Participants were recruited throughout urban and suburban areas within the southwest region of mainland British Columbia, Canada. Participants were recruited through community-based case managers, health care clinicians, brain injury service providers and brain injury drop-in centres. Information was provided to potential participants through information posters, letters of initial contact and presentations at drop-in centres. Individuals interested in participating were invited to contact the researchers directly or through their service providers. Participants needed to meet the following inclusion criteria: age 19 to 65 years, moderate to severe TBI that had occurred at least one year prior, living in the community, fluent in English, and able to provide informed consent. Moderate to severe TBI (which relates to initial severity of injury) was determined by information provided by the participant or his/her clinician demonstrating at least one of the following70: an initial Glasgow Coma Scale of 12 or less, post traumatic amnesia of 1 hour or more, and/or loss of consciousness of more than 15 minutes. If no information was available for these measures, then hospitalization of at least 48 hours as related to the TBI71 was sufficient evidence for the purposes of this study. Individuals were excluded if they had aphasia or were otherwise unable to complete questionnaires, were currently working (paid or unpaid) unless doing volunteer work for only a few hours per week, were currently involved in a formal rehabilitation program, or they had an Axis 1 psychiatric  32    diagnosis72 other than mild to moderate depression (for depression, they were excluded if their index score was 0.70 or greater on the Zung Self-Rating Depression Scale). Study design A cross-sectional design was used in this study of the association between social participation and SQOL. Each participant met with a researcher (the first author) or the research assistant (the ‘assessors’), both registered occupational therapists, to complete the consent form and all of the measures. The research assistant was otherwise not involved in the research project. Prior, each participant was advised that they were welcome to have a friend, family member or caregiver present. 13 out of the 46 participants chose to have someone present (8 participants from the BIDC group, 5 participants from the Comparison group). An assessor met with each participant to administer all of the measures; this included reading the instructions out loud for each measure and ensuring that the participant understood the instructions prior to proceeding. For the self-report questionnaires, participants were then provided with the option of reading the items on their own or having the items read out loud by the assessor. Questionnaires were presented in the same order for every participant. The assessor ensured that all of the questions were answered and, in the event of any missing responses, confirmed that this was because the participant had chosen not to provide a response and had not just overlooked the item. Quality of data was further enhanced by asking the attending friend, family member or caregiver to verify objective information (such as history of injury and rehabilitation) as well as participant responses to the Frontal Systems Behavior Rating Scale (FrSBe), a measure of frontal lobe functions (apathy, executive function and disinhibition). Three participants (1 from the BIDC group and 2 from the Comparison group) who were not accompanied by a family member provided permission for the assessor to telephone a family 33    member or caregiver for details relating to their injury and history of rehabilitation therapies and support services. Some participants, on their own initiative or at the suggestion of the assessor, made use of a day timers or calendar to verify details about their social participation, in particular frequency/intensity of their social and leisure activities. Short breaks were provided as requested by the participant or if the assessor observed the participant to show signs of physical discomfort or fatigue including onset of difficulties with concentration; for some individuals, the session was terminated altogether and completed on another day, with all sessions completed within a 2-week period for each participant. Participants required an average of 2.78 hours (ranging from 1.75 to 4.67 hours) to complete all of the measures, with no single session lasting more than 3.25 hours (including at least one 10 to 15-minute break). 33 participants (71.7%) completed all measures in one session, 11 individuals (23.9%) required two sessions, and 2 participants (4.3%) required three sessions. Inter-rater reliability and procedural consistency were enhanced by the assessors meeting together, prior to any data collection, to review all of the questionnaires, procedures, and the scoring of the performance-based measure (Montreal Cognitive Assessment). Then, for the first 2 participants, one assessor administrated all of the measures and the other assessor observed (alternating between the two sessions), so that any issues relating to procedure could be discussed afterwards. For all participants, the assessor recorded information relating to duration of session(s) and frequency and duration of breaks taken, whether or not someone else was present, the measures completed during each session, the general presentation of the participant and, in the event that more than one session was required, the reasons for this. Ethical approval was provided by the Behavioural Research Ethics Board of the University of British Columbia and the relevant health authorities. Copies of the Ethics 34    certificates are provided as Appendix A. Written information about the study was provided to, and written consent obtained from, all participants. A copy of the consent form is provided as Appendix B. Participants were provided with a small monetary compensation for their participation in the study. Measures The measures used are summarized in Table 2.1. More details about each measure are provided in Appendix C. A copy of the study-specific questionnaire relating to participant characteristics is provided in Appendix D. Participant characteristics. A short questionnaire was used to collect information about demographics and injury characteristics, including gender, age, cause of TBI, time post injury, rehabilitation interventions, education, employment, living situation and income. Formal measures were used to obtain information about health status and physical, cognitive and neurobehavioural impairment. A measure of perceived general health was obtained using the General Health Question from the Short Form-36 Health Survey (SF-36 GHQ)73. The full SF-36 has been found to have good concurrent validity for individuals with TBI74. Two measures were used to characterize participants in terms of their cognitive function: (a) the performance-based Montreal Cognitive Assessment (MoCA)75 and (b) the self-report Frontal Systems Behavior Rating Scale (FrSBe)76. The MoCA, which screens for a number of different cognitive functions, has been found to have good internal consistency and high test-retest reliability75, and validation studies are underway with an acquired brain injury population77. The FrSBe was used to provide a more in-depth assessment of frontal lobe functions, has demonstrated high internal consistency, good test-retest reliability and good construct validity (convergent and discriminant)76, 78, 79. The Zung Self-Rating Depression Scale (SRDS)80 provides a screen of 35    depressive symptoms. Most individuals with depression have an index score between 0.50 and 0.60; an index score of 0.70 or greater indicates severe depressive symptoms81. The SRDS has demonstrated high test-retest reliability 82, fair internal consistency83, 84 and good convergent validity with other depression measures83. The Mayo Portland Adaptability Inventory, version 4, (MPAI-4)85 was used to collect additional information about the participants’ level of physical, cognitive and communication impairment using the abilities subscale, and their level of pain, fatigue, emotional and interpersonal adjustment using the adjustment subscale. For individuals with acquired brain injury, there is acceptable internal consistency for the measure as a whole and each of the subscales, acceptable item agreement (between individuals with brain injury, significant others and rehabilitation staff), moderate convergent validity, and some predictive validity (in terms of long term vocational and independent living outcomes86‐88.. Social participation. Social participation was operationalized as involvement in social and leisure activities and a social network. Three measures were used: (a) the social integration scale of the Community Integration Questionnaire (CIQ-SI)26, (b) the Social Provisions Scale (SPS)89 and (c) the Adult Subjective Assessment of Participation (ASAP)90. The Community Integration Questionnaire is one of the most widely used and recommended measures of outcome following TBI91, 92. The CIQ-SI, considered a measure of general social integration, focuses on frequency of participation in social and leisure activities and, to some degree, the nature of a person’s social supports. Modest inter-correlations between subscales, moderate inter-rater reliability (between individuals with TBI and their caregivers), and high face validity have been found for the TBI population19, 26, 93‐96. The SPS, which focuses on the degree to which a person perceives his/her social relationships as providing different dimensions of social support, has been low internal consistency for subscales (and therefore this study considers only 36    the total score), and adequate construct validity (discriminant and convergent)89 including for individuals with TBI15. The ASAP examines level of participation in different life occupations or situations beyond basic self-care activities and outside of paid or unpaid work. This study used the scales relating to participation in social and leisure activities. There is a score for each scale: diversity of activities, frequency/intensity of participation, enjoyment, satisfaction with performance, with whom the individual participates and where the individual participates. The ASAP has demonstrated good test-retest reliability and construct (discriminant) validity90. Subjective quality of life. SQOL refers to the cognitive and affective appraisal of one’s subjective well being58. Three self-report measures of SQOL were used in this study: (a) the Quality of Life and Health Questionnaire (QOLHQ)97 98, (b) the Abdel-Khalek Happiness Scale (AKHS)99 and (c) the University of California at Los Angeles Loneliness Scale (UCLA-LS)100. The QOLHQ includes a single item, numerical scale used for appraising global quality of life, ranging from 0, ‘worse possible quality of life’, to 10, ‘best possible quality of life’. Fair to moderate construct (convergent) validity of this scale has been found for individuals with cancer97 and individuals with TBI101. The AKHS is another numerical scale, ranging from 0 (minimum happiness) to 10 (maximum happiness). It has good test-retest reliability, and construct (adequate discriminant and good convergent) validity99. The UCLA-LS, which is considered to focus on intimate and interpersonal loneliness102, has high internal consistency, high test-retest reliability, high face validity, and good convergent validity100. We used a 10-item version103. Statistical analysis Data analyses were conducted using descriptive and correlation statistics, using SPSS for Windows version 17.0. Descriptive statistics (means, standard deviations, ranges and 37    proportions) were used to describe the group in terms of participant characteristics and measures of social participation and SQOL. Correlational analyses were used to examine the bivariate associations between the measures of social participation and SQOL. Data were missing on three of the measures of participant characteristics (FrSBe, SRDS and income), but not from any of the measures of social participation or SQOL. Missing data were handled based on directions provided in the instruction manual for the FrSBe104 and on directions provided by Shrive et al. for the SRDS105. Details are provided as Appendix E. Missing data had no influence on the correlational analyses. Seven outliers were identified for the main outcome variables (social participation and SQOL). However, none of the outliers were extreme and none had a Mahalanobis distance exceeding the critical value of 13.82 and, therefore, none of the outliers were removed from the analysis. Tests for normality were conducted, including examination of skewness and kurtosis values, the Kolmogorov-Smirnov statistic, box plots and normal and detrended probability plots. It was found that the scores were not normally distributed for the majority of the main outcome variables, including two of the three SQOL measures, and, therefore, for the majority of correlational analyses. The non-parametric Spearman rho was therefore used instead of the Pearson product-moment correlation coefficient. Linearity was confirmed for all of the statistically significant correlations through inspection of scatter plots and the fit of a quadratic line. Detailed findings are provided in Appendix F. To avoid an inflated risk of Type I errors in conducting multiple correlations, the level of significance was set at alpha= 0.01. The strength of the correlation coefficients was interpreted according to Cohen’s classification106, where a correlation coefficient ranging between 0.10 and 0.29 is considered small, between 0.30 and 0.49 is considered medium, and between 0.50 and 1.0 is considered large. 38    Results Participant characteristics Results are shown in table 2.2. As is typical for the TBI population107, the majority of participants were male and the largest proportion of participants had been injured in a motor vehicle accident. At the time of injury, just over half of the participants had completed grade 12 education or less, and the majority of participants had been working. At the time of assessment, about 15% of participants were living in a community-based supported living situation (group home or family care home), and, for the other participants, it was a fairly even split between living alone and with others. The majority of participants were on a fixed disability income of less than $12,000.00 per year, which falls below the poverty line, labelled by Statistics Canada as the ‘after-tax low-income cut-off’108. On average, participants were found to rate themselves at just above good health (i.e., just above the mid point between poor and excellent health), with almost the same SF-36 GHQ mean scores as were found by two other studies involving individuals with moderate and severe TBI51, 74. A majority of participants were found to have cognitive impairment, with 84.8% of individuals scoring within the range of impairment on the MoCA and almost half of the participants falling within the range of frontal lobe impairment as measured by the FrSBe. Results of the MPAI-4 abilities scale revealed that about 40% of participants fell within the range of a moderate to severe level of current impairment, with further analyses identifying the areas rated at the highest levels of impairment to be memory, mobility, and attention/ concentration. The MPAI-4 adjustment scale found about a quarter of participants to have a moderate to severe level of current adjustment limitations, with the highest scores being for  39    fatigue, irritability/anger/ aggression, and family stress. Nearly 60% of the group fell within the range of having depressive symptoms. Social participation and SQOL Table 2.3 shows the results of the social participation and SQOL measures. On the ASAP, only a small percentage of participants fell within the ‘not enjoying’ range of the enjoyment scale and ‘not satisfied’ range of the satisfaction with performance scale. On average, participants were found to perform almost two thirds of their social and leisure activities outside of home and to be with others for just over half of such activities. With regard to SQOL, participants provided mean ratings that were higher than the midpoint on the global quality of life scale and the happiness scale. Only about a quarter of participants rated themselves below the midpoint between worst possible and best possible quality of life, and an even smaller proportion of participants rated themselves below the midpoint between minimum and maximum happiness. For the measure of loneliness (UCLA-LS), on average, the mean score was just above 20, with a majority of individuals scoring above this cut-off point, that is, as more lonely than is considered a normal experience. Correlational analyses Results of the correlational analyses between measures of SQOL and measures of social participation are summarized in table 2.4. Higher levels of loneliness were associated with lower levels of perceived social support and lower levels of social integration. There were statistically significant correlations between both the global rating of quality of life and rating of happiness and three of the ASAP scores: satisfaction with performance, enjoyment and proportion of activities performed with others. That is, higher levels of global quality of life and happiness were associated with higher proportions of activities performed with others and higher levels of 40    satisfaction and enjoyment. In applying Cohen’s classification of strength of correlations106, all of these associations were medium or large. There were no other statistically significant correlations at p< 0.01, and no correlations otherwise at p<0.05. Discussion and conclusion This study analyzed the association between social participation and SQOL for a group of 46 community-dwelling adults with moderate to severe TBI. Social participation was measured in terms of perceived social supports, an overall measure of social integration, and various dimensions of involvement in social and leisure activities: diversity, frequency/intensity, enjoyment, satisfaction with performance, where, and with whom. SQOL was measured in terms of an overall appraisal of quality of life, a rating of happiness, and a measure of loneliness, thus capturing dimensions of the cognitive and affective appraisal of subjective wellbeing. We found statistically significant associations involving all three aspects of SQOL and five out of the eight measures of social participation: a general measure of social integration, perceived social supports, enjoyment, satisfaction with performance, and proportion of activities performed alone. There were no associations found between SQOL and the measures of diversity, frequency/intensity, or proportion of activities performed outside of home. Interestingly, both global quality of life and happiness were correlated with the same measures of participation while loneliness was correlated with other measures of participation. The strong association found between loneliness and perceived social supports was not surprising, considering that one definition of loneliness is ‘…an aversive state experienced when a discrepancy exists between the interpersonal relationships one wishes to have, and those that one perceives they currently have…’109 (p. 698). To the best of our knowledge, there are no published studies that have investigated the association between loneliness and social supports 41    in individuals with TBI. There are very few studies altogether that have investigated the experience of loneliness for individuals with TBI, although a number of studies have addressed social supports110‐113, with some researchers equating social isolation with loneliness45. However, the subjective state of loneliness is separate from the objective state of social isolation114, and loneliness is a multidimensional concept, with an emotional dimension in addition to a social dimension109. Loneliness and social support have been studied to some extent in other populations. Russell115 measured loneliness and perceived social support in groups of college students, nurses, teachers, and the elderly using the same perceived supports measure as our study (i.e., SPS) and a revised version of the UCLA-LS. Comparable to our results, Russell found loneliness to have a large, negative association with perceived social support. Mellor and colleagues116 explored loneliness and satisfaction with personal relationships in the general population, and found that the less satisfied one is with personal relationships, the lonelier one feels. Also not surprising, considering the subjective nature of the variables involved, was our finding of an association between each of the SQOL measures of global quality of life and happiness, and each of the social participation measures of enjoyment and satisfaction with performance. There were no associations found between these two SQOL measures and the more objective and quantitative aspects of social participation, that is, diversity and frequency/intensity. Our findings are consistent with other TBI studies that have explored SQOL. Brown et al.65 tested various predictive models of SQOL for individuals with TBI and found that individuals’ subjective perspective tells more about their SQOL than do objective measures. Seibert and colleagues117 found global ratings of quality of life to be associated with 42    enjoying social and recreational activities, although only for men and not for women. Eriksson et al.’s118 findings suggested that higher levels of SQOL may be associated with more participation in everyday activities only if the activities are desired by the individual. Beyond the TBI population, a study that focused on older adults found that satisfaction with accomplishment was more associated with quality of life than the performance itself119 To the best of our knowledge, no studies have investigated the experience of happiness for individuals with TBI. However, our findings are congruent with recent literature in the area of positive psychology. For example, Vella-Brodrick et al.120 reported on a study of Americans and Australians where it was found that pleasure, life meaning, and engagement or ‘flow’ in activities are contributors to happiness and subjective well-being. Dunn and Brody59 explained that ‘flow’ involves being involved and fully engaged in the present moment where skill and challenge are in balance, and which often occurs when pursuing creative or stimulating activities, aesthetic experiences, hobbies or sport. Dunn and Brody recommended to individuals with disability that they seek positively reinforcing experiences, as this has been found to help regulate emotional well-being and, in turn, promote subjective well-being or ‘the good life’. We also found that higher levels of happiness and global quality of life are associated with more participation in activities with others than alone. These findings are consistent with previous research involving individuals with TBI that has shown that there is an association between SQOL and emotional and social support15, 51. Beyond the TBI population, Diener and Seligman121 found that college students with the highest ratings for happiness and overall quality of life spent the least amount of time alone and the most time socializing with others. Dunn and Brody59 reviewed research findings that show the importance of participating in activities with others as a contributing factor to achieving happiness or ‘the good life’. Reyes-Garcia et al.122 43    found that, for a non-clinical population, there was a negligible or negative association between solitary leisure and subjective well-being, but a positive and statistically significant association between social leisure and subjective well-being. There were no correlations reaching statistical significance between SQOL and the other dimensions of social participation as measured by the ASAP: diversity, frequency/intensity and proportion of social participation activities performed outside of home. That is, there appears to be little or no relationship between SQOL and how varied a person’s social participation activities are, how often they engage in social participation activities, and whether social participation takes place at home or elsewhere. Instead, it is the subjective and social factors that have the greatest relationship with SQOL. An interesting finding was that loneliness was the only dimension of SQOL that was found to be associated with the CIQ-SI. Other studies have found the CIQ-SI to have a small to medium association with the Life Satisfaction Index-A53, the Quality of Life Rating47, and the Satisfaction with Life Scale63. However, the CIQ-SI measures more than one aspect of social integration (i.e., frequency of participation and social support) and the first two of these SQOL quality of life measures are multidimensional; it is not known which dimensions of the CIQ-SI are more strongly associated with which dimensions of SQOL. Of note is that Corrigan et al.123 found that, although higher scores on the CIQ-SI were related to higher levels of life satisfaction (as measured by the Satisfaction with Life Scale), this did not contribute substantially to a prediction model for life satisfaction. Limitations The study design used does not allow for determination of a cause and effect relationship between social participation and SQOL for individuals with TBI. It may be that, by enhancing 44    the social and subjective aspects of an individual’s social participation, the individual’s subjective well-being will be bolstered. Alternately, it may be that it is individuals with higher SQOL who tend to perceive higher levels of social support, engage in a higher proportion of their social participation activities with others, and have an enhanced subjective experience of social and leisure activities. However, if improved social participation can result in improved subjective well-being, then these study results can provide some direction to clinicians in terms of a focus for community-based TBI rehabilitation interventions. Another study limitation is that the group size of 46 individuals with TBI is too small to represent a broader population of community-dwelling individuals with TBI. Findings from this study can be extended only to individuals similar to the participants in the study. Future research This study highlights the need for further study of the subjective aspects of participation and quality of life. As demonstrated in this study and also found by others24, 124, 125, there is still much to be learned about community integration and social participation for individuals with TBI, in particular the subjective factors. There is also much to be learned about SQOL, including about the experience of happiness and loneliness for individuals with TBI, and the relationship between social participation and SQOL. Larger studies, with a better representation of community-dwelling individuals post TBI, are required to confirm the results of this study. Further, as is also noted by Corrigan and Deming63, more research is needed to develop a fuller understanding of all of the factors that influence SQOL after TBI, including environmental and personal factors. Comparison studies are needed to assess cause and effect such as by measuring the effect of social participation interventions on SQOL for individuals with TBI. Some of the social 45    participation interventions that have been investigated to date include one-to-one volunteers for social and recreation activity126, peer support127 , circle or network of support128, 129, a supported leisure program130, community day programs131, and a Tai Chi program132. However, few studies have measured SQOL as an outcome of social participation interventions. Based on the results of our study, it is recommended that future studies include measurement of both objective and subjective dimensions of participation and quality of life. Further, as has been recommended by others15, qualitative research methods may provide a richer understanding of SQOL and the subjective dimensions of social participation for individuals with TBI. To date, Häggström and Lund133 have explored the meaning of participation and complexity of strategies that influence participation, Jumisko et al.37 have explored the experiences of ‘feeling well’ after moderate to severe TBI, and Fraas and Calvert134 have investigated the characteristics that lead to a meaningful or productive life following brain injury. Future studies could focus in more depth on happiness and loneliness as dimensions of SQOL for individuals with TBI. Clinical implications The findings from this study may provide clinicians with some increased awareness of factors to consider when assisting individuals with TBI to achieve increased social participation and SQOL. It may not be possible to influence SQOL directly. However, findings from this study support Johnston et al.’s50 suggestion that, if gains can be made in the areas of function most valued by a person, in this case social participation, it may be possible to maximize quality of life. Findings from our study suggest that there may be no positive influence on SQOL by simply increasing the variety and frequency of social and leisure activities, but instead, by increasing the opportunities for individuals to participate with others and by enhancing the 46    subjective experience of social and leisure activities. These findings are congruent with those of other researchers. Quality of life researchers have found that (a) connections with others and (b) the subjective experiences relating to engagement and meaning are associated with SQOL, regardless of whether SQOL is conceptualized as ‘the good life’59, happiness120, or subjective well-being135. Hemmingsson and Jonsson (2005)136 discuss that the subjective experience of meaning is an important aspect of participation. Specific to individuals with TBI, Fraas et al. (2009)134 found that the characteristics of a meaningful life include developing a social support network, redefining oneself through new roles, and participating in fulfilling and meaningful activities (such as activities that enable goal attainment and provide a sense of empowerment). Ylvisaker and colleagues137‐139 provide a role model in the approach that they describe for community-based TBI interventions, with a focus on positive relationships with others and engagement in meaningful activities. Of course, clinicians need to also consider other factors that may influence SQOL and/or social participation, such as level of employment, health conditions (including depression), cognitive or physical impairment, and environmental factors. These factors may have a direct impact on social participation or SQOL, or may modify or mediate the relationship between social participation and SQOL. For example, depression has been found to be strongly and negatively associated with quality of life24, 41, 51, 63, 118. Other contributors to SQOL include personality, health, religion, the type and quality of personal relationships, and an individual’s economic situation and political environment 135, 140. Finally, as is also cautioned by others65, 141, clinicians must maintain an individualized approach when working with individuals with TBI. In our study, there was large variance in scores for SQOL and social participation, a reminder that the TBI population is not 47    homogenous, and that statistical findings that are based on mean scores do not necessarily reflect individual experiences. Conclusion Despite its limitations, this exploratory study provides some insight into aspects of social participation and SQOL that, to date, have had very little attention in the TBI literature. If interventions that focus on the subjective and social dimensions of social participation prove to have a positive influence on SQOL, then this will provide clinicians with more effective tools to assist their clients in achieving optimal quality of life.  48    Table 2.1: Measures used Category Participant characteristics  Measurement tool Study-specific questionnaire  Construct measured Demographics and injury characteristics  Subscales or scores  Interpretation of score  SF-36 General Health Question  General health perception  Total score: 1-5  The lower the score, the higher the self-perceived health  Montreal Cognitive Assessment (MoCA)  Cognition (visuospatial/ executive function, attention, memory, language, abstraction, orientation)  Total score: 0-30  ≥26: normal  Frontal Systems Behavior Rating Scale (FrSBe)  Cognition (apathy, disinhibition, apathy)  Age and education-corrected t-score: 0-100 (M=50, SD= 10)  Zung Self-Rating Depression Scale (SRDS)  Depressive symptoms  Total index score: 0.25-1.00  <60: not clinically significant 60-64: borderline impairment ≥65: clinically significant <0.50: no depression 0.50-0.69: depression ≥0.70: severe depression  Mayo Portland Adaptability Inventory (MPAI-4)  Physical, cognitive, emotional, behavioural and social abilities and difficulties  Three scales: abilities, adjustment, participation. For each, a t-score: 0-100 (M= 50, SD=10)  <30: relatively good outcomes 30-40: mild limitations 50-60: moderate limitations >60: severe limitations  49    Table 2.1 (continued): Measures used Category Measure Social Community Integration participation Questionnaire, social integration scale (CIQ-SI)  Subjective quality of life  Construct measured Frequency of social and leisure activities; social supports  Subscales or scores Social integration scale: 0-12  Interpretation of score The higher the score, the higher the social integration  Social Provisions Scale (SPS)  Dimensions of perceived social support  Total score: 24-96  The higher the score, the greater the degree of perceived support  Adult Subjective Assessment of Participation (ASAP): social and leisure activities  Dimensions of participation in social and leisure activities  Diversity: 0-100% Frequency/intensity: 1-7 Enjoyment: 1-6 Satisfaction with performance: 1-6 With whom (others): 0-100% Where (outside of home): 0-100%  Higher scores represent: -more diversity -performed more often -higher enjoyment -more satisfaction with performance -more activities with others -more activities outside of home  Quality of Life and Health Questionnaire, numerical rating scale (QOLHQ)  Global rating of quality of life  Score: 0-10  The higher the score, the higher the global rating of quality of life  Abdel-Khalek Happiness Scale (AKHS)  Overall rating of happiness  Score: 0-10  The higher the score, the higher the rating of happiness  UCLA Loneliness Scale (UCLA-LS) (10-item version)  Loneliness  Total: 10-40  15-20: normal experience of loneliness >30: severe loneliness  50    Table 2.2: Participant characteristics (n=46) Characteristic  Mean (SD) and range  Gender - male Age - years  Proportion (number of participants) 67.4% (31)  44.17 (10.87) range 23-63  Cause of injury (5 participants had 2 TBIs): Motor vehicle accident  69.6% (32)  Fall  17.4% (8)  Sports injury  8.7% (4)  Gunshot  6.5% (3)  Other (assault, explosion)  4.4% (2)  Years post injury  15.66 (10.56) range 2-44  Education status prior to injury: Less than grade 12  39.2% (18)  Grade 12  13% (6)  Some post secondary  13% (6)  Post secondary completed  34.8% (16)  Employment status prior to injury: Student or trainee  8.7% (4)  Employed  73.9% (34)  Unemployed  17.4% (8)  Current living situation Living alone  43.5% (20)  Living with family or roommate  41.3% (19)  Supported living  15.2% (7)  51       Table 2.2 (continued): Participant characteristics (n=46) Characteristic  Mean (SD) and range  Proportion (number of participants)  Annual income – CAN$ Less than $12,000.00  63.0% (29)  $13,000.00-$20,000.00  11.1% (5)  $21,000.00-$40,000.00  4.4% (2)  >$40,000.00  6.6% (3)  No information provided  15.6% (7)  General health rating (SF-36 GHQ)  2.72 (1.03) range 1-5  General cognitive status (MoCA)  21.76 (4.28) range 4-29  84.8% (39) with general cognitive impairment (score<26)  Frontal systems cognitive/behavioural impairment (FrSBe) (n=45)  57.62 (18.80) range 24-98  46.7% (21) with frontal systems impairment (t-score ≥65)  Depression symptoms (SRDS)  0.48 (0.98) range 0.29-0.69  58.7% (27) with depression symptoms (score ≥0.50)  Impairment (MPAI-4 abilities scale)  45.8 (8.82) range 7-58  39.1% (18) with moderate to severe impairment limitations (t-score ≥50)  Adjustment (MPAI-4 adjustment scale)  42.24 (10.53) range 12-64  23.9% (11) with moderate to severe adjustment limitations (t-score ≥50)  SD=standard deviation; TBI=traumatic brain injury; CAN$ = Canadian dollars; SF-36 GHQ=general health question from the Short Form-36 Health Survey; MoCA=Montreal Cognitive Assessment; FrSBe=Frontal Systems Behaviour Rating Scale; SRDS=Zung SelfRating Depression Scale; MPAI-4=Mayo Portland Adaptability Inventory, version 4.  52    Table 2.3: Outcome variables (n=46) Outcome variable  Maximum score possible  Obtained score: mean (SD) and range  Social Participation: General social integration (CIQ-SI)  12  8.24 (2.17) range 3-12  Perceived social supports (SPS)  96  78.28 (9.49) range 60-95  Diversity of activities  100%  40.31% (11.51%) range 16.22%-56.76%  Frequency/intensity  7  4.27 (0.56) range 2.8-5.81  Enjoyment  6  5.14 (0.64) range 3.11-6  Satisfaction with performance  6  5.11 (0.74) range 2.76-6  Where: proportion of activities performed outside of home  100%  64.81% (13.46%) range 37.5%-90%  With whom: proportion of activities performed with others  100%  56.08% (18.84%) range 0%-100%  Global rating of quality of life (QOLHQ numerical scale)  10  6.43 (2.25) range 2-10  Happiness (AKHS)  10  7.05 (2.16) range 1-10  Loneliness (UCLA-LS)  40  22.11 (7.10) range 10-37  ASAP social participation scores:  Subjective quality of life:  SD=standard deviation; CIQ-SI=Community Integration Questionnaire, social integration scale; SPS=Social Provisions Scale; ASAP=Adult Subjective Assessment of Participation; QOLHQ=Quality of Life and Health Questionnaire; AKHS=Abdel-Khalek Happiness Scale; UCLA-LS=University of California at Los Angeles Loneliness Scale.  53      Table 2.4: Intercorrelations between social participation and subjective quality of life (n=46)  Subjective quality of life Social participation  Global rating of QOL (QOLHQ)  Happiness (AKHS)  Loneliness (UCLA-LS)  General social integration (CIQ-SI)  0.218 p=0.146  -0.004 p=0.980  -0.393* p=0.007  Perceived social supports (SPS)  0.220 p=0.143  0.211 p=0.159  -0.516* p< 0.001  Diversity of activities (ASAP)  0.145 p=0.338  0.130 p=0.389  -.0211 p=0.159  Frequency/ intensity (ASAP)  0.100 p=0.509  0.223 p=0.136  -0.051 p=0.736  Enjoyment (ASAP)  0.452* p=0.002  0.525* p<0.001  -0.232 p=0.121  Satisfaction with performance (ASAP)  0.431* p=0.003  0.585* p< 0.001  -0.254 p=0.089  Where: proportion of activities outside of home (ASAP)  0.151 p=0.316  0.291 p= 0.050  0.027 p=0.857  With whom: proportion of activities with others (ASAP)  0.399* p=0.006  0.508* p<0.001  0.068 p=0.656  *p< 0.01 QOL=quality of life; 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Brain Injury 2006;20:391-407.  65    CHAPTER THREE: THE COMPARISON STUDY 2 Differences in social participation and subjective quality of life between individuals with traumatic brain injury who do and do not attend brain injury drop-in centres  Introduction Traumatic brain injury (TBI) is a major health issue1 . It is estimated that 43 percent of individuals who are hospitalized with TBI go on to experience long-term disability2. Disability may be experienced in terms of physical, cognitive, communication, behavioural, and/or emotional impairment3, as well as reduced participation for work, school, independent living, leisure and social activities3‐7. As few as 30% of individuals who were employed prior to TBI are successful in returning to work following TBI8, 9. Leisure and social activities therefore become an important aspect of everyday life for individuals with TBI. However, a high proportion of individuals with TBI experiences a decline in participation in social and leisure activities6, 10‐12. Other areas of concern include social isolation13, 14 with fewer friends15‐17 and less social interaction outside of the home and family12, 18. Many individuals with TBI also experience low quality of life as measured in terms of health-related quality of life19, 20 and subjective well-being, including life satisfaction16, 21‐25 . It has been suggested that the primary goals of TBI rehabilitation are to improve participation or re-integration into the community26 and restore quality of life27, 28. Inpatient                                                              2  A version of this chapter will be submitted for publication. McLean AM, Jarus T, Hubley AM, Jongbloed L. Differences in social participation and subjective quality of life between individuals with traumatic brain injury who do and do not attend brain injury drop-in centres.    66    rehabilitation alone is not sufficient for achieving successful, long-term community integration5,29. Social participation, defined for this study as involvement in social and leisure activities and within a social network, does not appear to improve simply by passage of time alone17, 30, 31 and may worsen6, 13, 32. It appears, therefore, that long term rehabilitation therapies and support services are required to assist individuals with TBI in achieving these goals14, 15. It may be that, by focusing on social participation, such services can also improve an individual’s subjective quality of life (SQOL) or subjective well-being, considering that some studies have found a positive relationship between participation or community integration and SQOL including life satisfaction16, 22, 24, 33, 34. There are a number of community interventions and programs described in the research literature which aim to enhance social participation for individuals with TBI, including support groups35‐37, peer support7, case management29, 38, circles or networks of support39, 40, community day programs41, 42, one-to-one volunteer support43, community leisure groups44, and community outreach teams45. However, the research evidence base for the effectiveness and efficacy of such programs is in its infancy46. More research is required to focus on community-based programs and services to meet the long term needs of individuals with TBI29, 44, 47, 48, including for social participation and quality of life49, 50 . One type of support service that has the potential to be both effective and feasible in addressing social participation and quality of life over the long term is the brain injury drop-in centre (BIDC). A search of the research literature and Internet reveals that BIDCs may exist only in British Columbia, Canada, and in the UK. A BIDC, located in a community setting and not a hospital or health centre, provides formal and informal social and recreational activities, peer support and educational in-services for adults with brain injury. Some BIDCs are open each 67    weekday and others are open two or three times per week. A physician’s referral is not required and no appointments are necessary. Individuals may attend as often or little as they choose, and for as long as they like. The expertise of a health care professional is not required for operating a BIDC. A BIDC typically has a staff to client ratio of about one to two staff for a dozen or more attendees in a day. By the nature of the activities and supports provided by BIDCs, it may be that, by attending BIDCs, individuals with TBI experience improved social participation and SQOL. Furthermore, BIDCs may provide a more comprehensive array of services than other long term support services, and BIDCs may be more cost effective than other rehabilitation interventions, certainly as compared to individual or group programs staffed by health care clinicians. However, we are unaware of any systematic investigation of outcomes for individuals attending BIDCs and, to the best of our knowledge, there is no published research specific to BIDCs. It is important to understand the unique contribution of BIDCs in meeting the ongoing needs of individuals with TBI, in particular as relates to the primary rehabilitation goals of improving participation and quality of life. The value of such information for service providers and funders includes not only justifying the existence of current BIDCs but also in deciding whether or not to set up a BIDC in other communities. The research question The focus of this study was on the potential benefits of BIDCs as they relate to social participation and SQOL for individuals with moderate to severe TBI. The aim of this study was to understand the level of importance of a BIDC for individuals who attend, and to compare two groups, individuals who do and do not attend a BIDC. For the comparison, it was hypothesized that individuals who attend a BIDC have higher levels of social participation and SQOL than 68    individuals who do not attend but who have been identified as potentially benefitting from attending. Methods Participants We recruited 46 participants, 23 for each of two groups: individuals attending a BIDC and individuals not attending a BIDC but who may benefit from attending. Reasons for not attending may include not knowing about BIDCs or there being a barrier to attendance such as the person lacking transportation or living too far from a BIDC. Details regarding sample size testing are provided as Appendix G. Participants were recruited through BIDCs for the BIDC group, and through community-based case managers, health care clinicians and service providers for the Comparison group. Participants needed to meet the following inclusion criteria: age 19 to 65 years, sustained a moderate to severe TBI (which relates to initial severity of injury) that had occurred at least one year prior, living in the community, fluent in English, and able to provide informed consent. Moderate to severe TBI (which relates to severity of initial injury) was determined by information provided by the participant or his/her clinician demonstrating at least one of the following51: an initial Glasgow Coma Scale of 12 or less, post traumatic amnesia of 1 hour or more, and/or loss of consciousness of more than 15 minutes. If no information was available for these measures, then hospitalization of at least 48 hours as related to the TBI52 provided sufficient evidence for the purposes of this study. Individuals were excluded if they had aphasia or were otherwise unable to complete questionnaires, were currently working (paid or unpaid) unless doing volunteer work for only a few hours per week, were currently involved in a formal rehabilitation program, or they had an Axis 1 psychiatric diagnosis53 (other than mild to moderate depression). For depression, they were excluded if 69    their index score was 0.70 or greater on the Zung Self-Rating Depression Scale. Individuals for the BIDC group were included if they had been attending a BIDC on average at least once per week over the previous three months. Individuals in the comparison group were deemed ineligible if they had made more than three visits to a BIDC over the previous six months. Study design A cross-sectional design was used in this study of the association between social participation and SQOL. Each participant met with either the researcher (the first author) or the research assistant (the ‘assessors’), both registered occupational therapists, to complete the consent form and all of the measures. The research assistant was otherwise not involved in the research project. Prior, each participant was advised that they were welcome to have a friend, family member or caregiver present. 13 out of the 46 participants chose to have someone present. An assessor met with each participant to administer all of the measures; this included reading the instructions out loud for each measure and ensuring that the participant understood the instructions prior to proceeding. For the self-report questionnaires, participants were then provided with the option of reading the items on their own or having the items read out loud by the assessor. Questionnaires were presented in the same order for every participant. The assessor ensured that all of the questions were answered and, in the event of any missing responses, confirmed that this was because the participant had chosen not to provide a response and had not just overlooked the item. Quality of data was further enhanced by asking the attending friend, family member or caregiver to verify information such as history of injury and rehabilitation as well as participant responses to the Frontal Systems Behavior Rating Scale (FrSBe), a measure of frontal lobe functions (apathy, executive function and disinhibition). Three participants provided permission for the assessor to telephone a family member or caregiver to confirm 70    information relating to their injury and history of rehabilitation services. Some participants, on their own initiative or at the suggestion of the assessor, made use of their day timers/calendars to verify details about their social participation, in particular frequency/intensity of their social and leisure activities. Short breaks were provided as requested by the participant or if the assessor observed the participant to show signs of physical discomfort or fatigue including onset of difficulties with concentration; for some individuals, the session was terminated altogether and completed on another day, with all sessions completed within a 2-week period for each participant. Participants required an average of 2.78 hours (ranging from 1.75 to 4.67 hours) to complete all of the measures, with no single session lasting more than 3.25 hours (including at least one 10 to 15-minute break). 33 participants (71.7%) completed all measures in one session, 11 individuals (23.9%) required two sessions, and 2 participants (4.3%) required three sessions. Inter-rater reliability and procedural consistency were enhanced by the assessors meeting together, prior to any data collection, to review all of the questionnaires, procedures, and the scoring of the performance-based measure (Montreal Cognitive Assessment). Then, for the first 2 participants, one assessor administrated all of the measures and the other assessor observed (alternating between the two sessions), so that any issues relating to procedure could be discussed afterwards. For all participants, the assessor recorded information relating to duration of session(s) and frequency and duration of breaks taken, whether or not someone else was present, the measures completed during each session, the general presentation of the participant and, in the event that more than one session was required, the reasons for this. Ethical approval was provided by the Behavioural Research Ethics Board of the University of British Columbia and the relevant health authorities. Written information about 71    the study was provided to, and written consent obtained from, all participants. Participants were provided with a small monetary compensation for their participation in the study. Measures A summary of the measures used, with one exception, are listed in Table 2.1. The exception is a questionnaire relating to involvement (BIDC group) or potential involvement (Comparison group) in a BIDC. More details about each measure are provided in Appendix C. A copy of each of the study-specific questionnaires (relating to participant characteristics and involvement in a BIDC) is provided as Appendix D. Participant characteristics. A short questionnaire collected information about the participants including gender, age, cause of TBI, time post injury, education, employment, living situation and income. In response to the General Health Question from the Short Form-36 Health Survey (SF-36 GHQ)54, individuals rated their overall health on a 5-point scale from ‘poor’ (rated 5) to ‘excellent’ (rated 1). The GHQ has good test-retest reliability55, 56 , and the full SF-36 has been found to have good concurrent validity for individuals with TBI19. Two measures were used to characterize participants in terms of their cognitive function: (a) the performance-based Montreal Cognitive Assessment (MoCA)57 and (b) the self-report Frontal Systems Behavior Rating Scale (FrSBe)58. The MoCA, which screens for a number of different cognitive functions, has been found to have good internal consistency and high test-retest reliability57, and validation studies are underway with an acquired brain injury population59 . The FrSBe, which provided more in-depth assessment of frontal lobe functions, has demonstrated high internal consistency, good test-retest reliability and good construct validity (convergent and discriminant)58, 60, 61. The Zung Self-Rating Depression Scale (SRDS)62 provides a screen of depressive symptoms. Most individuals with depression have an index score between 0.50 and 72    0.60; an index score of 0.70 or greater indicates severe depressive symptoms63. The SRDS has demonstrated high test-retest reliability64, fair internal consistency65, 66, and good convergent validity with other depression measures65. The Mayo Portland Adaptability Inventory, version 4, (MPAI-4)67 was used to collect additional information about the participants’ level of physical, cognitive, and communication impairment using the abilities subscale, and their level of pain, fatigue, emotional, and interpersonal adjustment using the adjustment subscale. For individuals with acquired brain injury, there is acceptable internal consistency for the measure as a whole and each of the subscales, acceptable item agreement (between individuals with brain injury, significant others and rehabilitation staff), moderate convergent validity, and some predictive validity (in terms of long term vocational and independent living outcomes)68‐70. Involvement in a BIDC. Individuals in the BIDC group were asked about their current involvement in a BIDC including frequency of attendance, barriers to attendance, and the importance of a BIDC in their lives. This included one open-ended question, ‘How would life look if you were not attending at a brain injury drop-in centre?’. Participants either wrote down their own responses, or their responses were recorded in writing by the assessor. Individuals in the Comparison group were asked if they would like to attend a BIDC and, if so, why they were not currently attending. Social participation. Social participation was operationalized as involvement in social and leisure activities and a social network. Three measures were used: (a) the social integration scale of the Community Integration Questionnaire (CIQ-SI)71 , (b) the Social Provisions Scale (SPS)72 and (c) the Adult Subjective Assessment of Participation (ASAP)73. The Community Integration Questionnaire is one of the most widely used and recommended measures of outcome following TBI. The CIQ-SI, a measure of general social integration, focuses on 73    frequency of participation in social and leisure activities and, to some degree, the nature of a person’s social supports. Modest inter-correlations between subscales, moderate inter-rater reliability (between individuals with TBI and their caregivers), and high face validity have been found for the TBI population71, 74‐78. The SPS, which focuses on the degree to which a person perceives his/her social relationships as providing different dimensions of social support, has been found to have low internal consistency for subscales (and therefore this study considers only the total score), and adequate construct validity (discriminant and convergent)72 including for individuals with TBI16, 79. The ASAP examines level of participation in different life occupations or situations beyond basic self-care activities and outside of paid or unpaid work. This study used the scales relating to participation in social and leisure activities. There is a score for each scale: diversity of activities, frequency/intensity of participation, enjoyment, satisfaction with performance, with whom the individual participates and where the individual participates. The ASAP has demonstrated good test-retest reliability and construct (discriminant) validity73 . Subjective quality of life. SQOL refers to the cognitive and affective appraisal of one’s subjective well being80. We used three self-report measures of SQOL: (a) the Quality of Life and Health Questionnaire (QOLHQ)81, (b) the Abdel-Khalek Happiness Scale (AKHS)82 and (c) the University of California at Los Angeles Loneliness Scale (UCLA-LS)83. The QOLHQ includes a single item numerical scale used for appraising global quality of life, ranging from 0, ‘worse possible quality of life’, to 10, ‘best possible quality of life’. Fair to moderate construct (convergent) validity of this scale has been found for individuals with cancer 84 and individuals with TBI85. The AKHS is another numerical scale, ranging from 0 (minimum happiness) to 10 (maximum happiness). It has good test-retest reliability, and construct (adequate discriminant 74    and good convergent) validity82. The UCLA-LS, which is considered to focus on intimate and interpersonal loneliness83, 86, has high internal consistency, high test-retest reliability, high face validity, and good convergent validity83. We used a 10-item version87. Statistical analysis Data analyses were conducted using descriptive and comparison statistics using SPSS for Windows version 17.0. Descriptive statistics (means, standard deviations, ranges and proportions) were used to describe the group in terms of participant characteristics, the dependent variables of social participation and SQOL and, for the BIDC group, the importance ratings of attending a BIDC. Comparison statistics revealed whether or not there were any statistically significant differences between the groups for participant characteristics and the dependent variables. Multiple univariate analyses were used and not multivariate analyses, following Huberty and Morris88. This study matches three situations for which Huberty and Morris suggest use of multiple univariate analyses: (a) the research project is exploratory in nature, (b) the outcome variables are conceptually independent (for example, for social participation, involvement in a social network and frequency/intensity of social and leisure activities), and (c) some of the dependent variables have been previously studied in a univariate context (which, for this study, applies to all of the main outcome variables). In comparing the groups, normally distributed data were analyzed using independent samples t-tests, and effect sizes for differences in mean scores were calculated using eta-squared89 . When results indicated that the groups were not normally distributed, the non-parametric Mann-Whitney U test was used, and effect sizes were calculated using the approximate value of r89. Where participants could be categorized into dichotomous groupings based on the dependent variable, the chisquare test for independence was used to analyze differences in proportional representation 75    between groups, and effect sizes were determined using the phi coefficient value89. Criteria for effect sizes (small, medium or large) were taken from Cohen 1988 90 . To avoid inflated risk of Type I errors in conducting multiple comparisons, the level of significance for all comparison analyses was set at alpha= 0.01, although, considering the exploratory nature of this study, results that fall within the level of significance of alpha = 0.05 are also reported. There were no missing data for the dependent variables of social participation and SQOL. Missing data were as a result of participants choosing not to answer a response. Data were missing for 13 out of 840 responses on the SRDS, managed as per Shrive91, six out of 1,932 responses on the FrSBe, managed by following directions provided in the instruction manual92, and for 7 participants for level of income. Further details are provided in Appendix E. Results An unexpected finding was that the Comparison group was found to be comprised of three distinct subgroups based on their response to the question, ‘Would you like to attend a BIDC?’ The first subgroup (n=12) was comprised of individuals who replied that yes, they would attend a BIDC. The primary reasons for not currently attending were that the individuals were not aware of BIDCs or there were barriers to attendance, for example, the BIDC was too far away, they had difficulties accessing transportation to get to a BIDC, or they did not have the necessary caregiver support. Four participants reported that they planned to attend a BIDC but had not yet started. One individual reported being too busy with other activities and one person stated that they were focused on trying to get back to working, but on learning about BIDCs and the activities offered, both of these individuals stated that they would consider changing their schedule or priorities to attend a BIDC. This subgroup will be referred to as the Yes group. The second subgroup (n=7) was comprised of participants who responded that maybe they would 76    attend a BIDC. All but one of these individuals explained that they were interested in attending at BIDC, but that they were too busy to do so; the other individual expressed concerns that he or she might not relate to anyone at a BIDC. This subgroup will be referred to as the Maybe group. The third subgroup was comprised of 4 individuals who stated that they would definitely not attend a BIDC, with the primary reason given that they were busy focusing on getting back to work and driving and two participants stating that they had no interest in doing things with other people with brain injuries. This group will be referred to as the No group. There was no indication (based on their responses to questionnaires, observed behaviours, and information from their community service providers) that any of these 4 individuals lacked insight into their needs. While these individuals did meet the study’s inclusion criteria, the No group was too small to be considered as a separate group in the analyses. Participant characteristics As can be seen in table 3.1, most of the participant characteristics were found to be similar across the BIDC, Maybe and Yes groups. The most notable differences, at p<0.01, were as follows: the participants in the Maybe and Yes groups were found to have more current involvement with rehabilitation therapies than individuals in the BIDC group. It was determined that this was for physiotherapy, acupuncture treatment, and/or intermittent psychological counselling. These group differences included the mean scores for frequency of attendance as well as the proportions of individuals in each group in receipt of rehabilitation therapies. The BIDC group was found to have a higher proportion of individuals currently receiving support services than the Yes group (p<0.01). The Maybe group also had a higher proportion of individuals currently receiving support services than the Yes group, but this did not reach statistical significance. All members of the BIDC and Maybe groups were in receipt of 77    support services, whereas only two-thirds of the Yes group were in receipt of support services. For the BIDC group, it was found that the support services consisted primarily of BIDCs, with one person also in receipt of help from a life skills worker and one person also attending an adapted fitness program. For both the Yes group and Maybe group, the support services consisted of support from a one-to-one life skills worker, attendance at an adapted fitness program, and/or involvement of a circle of support, and for the Maybe group, services also included support from a one-to-one volunteer and/or attendance at an adapted art program. The only other differences between groups (p<0.01) were for the MPAI-4 adjustment scale. The Comparison group as a whole, and more specifically the Yes group, was found, on average, to have more adjustment problems than the BIDC group. The Maybe group was also found to have more adjustment problems than the BIDC group, but at p<0.05. On inspection of the specific items on the MPAI-4 adjustment scale, the greatest differences between the Yes group and BIDC group were that the Yes group had less social contact with others beyond professionals and family (i.e., a measure of social participation), and more fatigue. Of interest was that the Maybe group had the highest mean score for fatigue out of the three groups. A few additional differences were found on subject characteristics at p<0.05. There was a higher proportion of individuals living alone in the Comparison group as compared to the BIDC group, with the highest proportion of individuals living on their own found to be in the Maybe group. In addition, on average, individuals in the BIDC group were found to be older (although generally within the same age range) and more years post injury than the Comparison group.  78    Descriptive findings relating to attendance at a BIDC There were six BIDCs represented in this study. Four BIDCs were open twice per week, and the other two locations were open five days per week. On average, individuals in the BIDC group reported that they had attended at a BIDC for 5.42 years (SD=4.74 years, range 4 months to 15 years). Frequency of attendance was from one to five times per week, on average about twice per week (M=2.22, SD=0.84). Almost half of the BIDC group (47.8%) reported that, if they could, they would attend a BIDC more often than they do currently, with the primary limiting factor being that the BIDC is not open often enough. Of interest was that the individuals in the Comparison group reported that, if they were to attend a BIDC, then they would attend on average once or twice per week (M=1.66, SD=1.15, range once every 2 weeks to 5 times per week). On average, individuals in the BIDC group rated the importance of attending a BIDC at 4.44 out of 5 (SD=0.65), where 1 represents ‘not at all important’ and 5 represents ‘very important’, with no-one providing a rating below 3 (‘somewhat important’). Using the ASAP, participants in the BIDC group reported that, on average, 36.9% of their current social and leisure activities take place at a BIDC (SD=19.2%, range 13% to 82%). When selecting their five core or most important activities from the full ASAP measure, 82.6% of individuals selected as at least one of these activities attendance in general at a BIDC and/or a specific activity that they perform primarily at a BIDC. In response to the open-ended question about how life would look if they were not attending a BIDC, all but one participant responded that life would be lacking in some way. This one person stated that life would not be much different because they had lots of other things to do. It was found that most of the responses of the other 22 participants could be categorized under the themes of social participation and SQOL. In terms of social participation, participants 79    reported that a BIDC gave them something to do and, without a BIDC, they would miss the activities, would not have much to do, find it difficult to find something to do, or have less confidence trying new activities. They stated that there would be less chance to get out, and one participant responded that he would miss the volunteering that he does at the BIDC. Participants reported that attending a BIDC has helped them with meeting new friends and that the people at the BIDC feel like family. Two individuals stated that, without a BIDC, the only people they would spend time with would be caregivers or family members. Two participants responded that they would miss having the opportunity to talk with people about shared experiences relating to having a brain injury. One person reported that without having the BIDC to attend, his activities would consist primarily of eating, sleeping and smoking. With regard to the theme of SQOL, individuals reported that, without a BIDC to attend, life would become boring, difficult, blank, ‘could be bleak’, gloomy, ‘a lot less fun’, and/or ‘not very good’. They expected that they would become lonely, frustrated or mad, unproductive or negative, or ‘lost’. One person stated that now, ‘I feel crappy when I miss a day’. A number of individuals felt that they would become depressed. One person felt that he might no longer have anyone to talk to when he feels depressed. Another person stated, ‘I wouldn’t be able to handle it out there.’ One individual reported having been quite depressed upon starting at the BIDC less than six months prior, that the BIDC had helped improve the depression, and that, without the BIDC, ‘I’d be right back to where I was before, stuck in my own corner of the world. I’d be lost…if I have nowhere to go, I stagnate…’ Comparison of social participation and SQOL Table 3.2 shows the mean scores for each group on measures of social participation and SQOL and summarizes the results of the comparison analyses. First, the BIDC group was 80    compared to the Comparison group as a whole. The BIDC group had a higher ASAP home score (p<0.01), that is, they participated in more activities outside of the home, than the Comparison group. At p <0.05, there were a number of other statistically significant differences. The BIDC group was found to have a higher general social integration score (as measured by the CIQ-SI) than the Comparison group and, as measured by the ASAP, more frequency/intensity of social participation activities, a higher percentage of activities spent with others, and a higher score for satisfaction with performance for social and leisure activities. All effect sizes were medium or large. The BIDC group was then compared to the Yes group, because the Yes group best represents the individuals who had been sought for the study’s comparison group. At p<0.01, statistical significance was reached on two of the measures: the BIDC group was found to have a higher rating for happiness and to engage in more social participation activities outside of the home than the Yes group. At p <0.05, additional differences were found: the BIDC group had a higher score for overall quality of life, general social integration, frequency/intensity of social participation activities, enjoyment, and satisfaction with performance. Again, all effect sizes were medium or large. Furthermore, as can be seen in table 3.2, a pattern is observed where, for many of the social participation and SQOL measures, the BIDC group and Maybe group are more similar to each other than to the Yes group, with more desirable scores than the Yes group. The exceptions are (a) three measures where it appears that the Maybe group is more similar to the Yes group than the BIDC group (i.e., general social integration, proportion of activities performed with others, and proportion of activities performed outside of the home) and (b) three measures  81    where the mean scores appear similar across groups (i.e., loneliness, perceived social supports, and diversity). Table 3.3 shows the results of more clinically significant findings for social participation and SQOL, that is, the proportion of individuals in each group placing above a clinically significant cut-off point (where such cut-off points are available). It can be seen that, with the exception of loneliness, the BIDC and Maybe groups appear to have the highest proportions of individuals at or above the cut-off points and the Yes group appears to have the lowest proportions. For loneliness, the Maybe group appears to have the highest proportion of individuals who are lonelier than what is considered a normal experience, and the BIDC group appears to have the lowest proportion. None of these differences reached statistical significance. However, there were medium effect sizes found in comparing the BIDC group with the Comparison group for enjoyment and satisfaction with performance, and comparing the BIDC group with the Yes group for enjoyment, satisfaction with performance, and happiness. Discussion and Conclusion This exploratory study provides the first report of brain injury drop-in centres. The hypotheses were supported in that individuals who attend BIDCs (i.e., the BIDC group) were found to have higher levels of SQOL and social participation than individuals who do not attend BIDCs but who had been identified as potentially benefitting from attending (i.e., the Comparison group). The strongest support for the study’s hypotheses came after the Comparison group had been broken down into the Yes group (individuals who stated that they would like to attend a BIDC but either did not know about BIDCs or experienced a barrier to attending) and the Maybe group (individuals who might attend a BIDC but, for the most part, felt they were too busy to attend). For many of the measures of SQOL and social participation, it 82    was the Yes group and not the Maybe group that had lower mean scores than the BIDC group. Of interest was that the pattern of results showed that the Maybe group appeared to be more similar to the BIDC group than to the Yes group on many of the measures of social participation and SQOL. Of most statistical significance (p<0.01) were the higher mean scores for the BIDC group (than the Comparison group and/or Yes group) in ratings of happiness and proportion of activities performed outside of home. Of lower statistical significance (p<0.05) were the BIDC group’s higher mean scores (as compared to the Comparison group and/or Yes group) in global quality of life, general social integration and, for performance of social and leisure activities, frequency/intensity, proportion of activities performed with others, enjoyment and satisfaction with performance. It may be that attendance at a BIDC contributes to higher levels of social participation and SQOL as compared to non-attendance. The cross-sectional design of the study does not allow for conclusions to be made relating to the cause and effect of attendance in a BIDC. However, in considering the nature of a BIDC (located in a community setting and providing a variety of group activities), it would not be surprising to find that attendance at a BIDC contributes to performing a higher proportion of one’s social and leisure activities outside of their house and with other people. With regard to the other outcome measures, results of other TBI studies lend support to programs similar to BIDCs contributing to various dimensions of social participation and SQOL. This includes studies that have investigated participation in community-based leisure activities44, a social and leisure day program42, a leisure and prevocational skills program93, 94, and a drop-in program offering social and leisure activities, education classes and training in communication and interpersonal skills95. Quantitative and 83    qualitative findings for all of these studies indicate that individuals who participated in these programs perceived themselves to benefit in many areas of social participation and SQOL. This includes improved scores for general social integration (CIQ-SI) and global quality of life (QOLHQ), over time and as compared to individuals who had not participated, as well as reports of happiness with involvement in the leisure activities, enjoyment of being with others, and making friends44. The participants in the drop-in program reported having benefited from the emotional and social support and the opportunity to develop social contacts and form longlasting relationships95. The study of the day program found that the program met the emotional, social, recreational, and quality of life needs for the attendees42. One member reported, ‘…My day is so much better when I come here than if I’d stayed home. If I’d stayed home, and there wasn’t a SteppingStones, I’d be so depressed…’42 (p. 1275). One description of the leisure and pre-vocational skills program reports an attendee having stated, ‘…I lost my social life after my car wreck…I was bored out of my mind at home…I look forward to coming here instead of sitting at home all day…’94 (p. 42). Our findings relating to involvement of the BIDC group in BIDCs provide further evidence that attendance in a BIDC may contribute to higher levels of SQOL and social supports. The participants in the BIDC group provided high ratings of the importance of a BIDC in their lives, and gave many examples of the positive influence of a BIDC on their SQOL and social participation. It was interesting to find a pattern where, for many of the measures of SQOL and social participation, the Maybe group appeared more similar to the BIDC group than to the other individuals not attending a BIDC, the Yes group. It may be that this pattern has some relationship to current levels of support services, the only participant characteristic where we 84    found a similar pattern of results in comparing the three groups. The Maybe group was more similar to the BIDC group than the Yes group for support services in terms of current number of support services and percentage of participants receiving support services. It may be that the types of support services received by the Maybe group provide some similar benefits to social participation and SQOL as does attendance at a BIDC. Unfortunately, however, there are very few TBI studies that have investigated SQOL and social participation outcomes as related to the types of support services that were reported by our participants, such as one-to-one life skills support workers and volunteers, adapted fitness programs, adapted art programs, and peer support groups. However, those TBI studies that have been conducted provide some evidence of such programs contributing to improved SQOL and social participation. Such studies include investigation of an adapted Tai Chi program96 , the use of one-to-one volunteers to assist individuals with TBI to increase their social contacts and become engaged in an increased variety of community activities 43 and peer support programs7, 37. However, for many individuals with TBI and their funders, BIDCs may have a number of advantages over these other support services. These advantages may include the comprehensiveness and variety of social and leisure activities and supports offered by one support service. In addition, because the focus of BIDCs includes involving members in selecting and planning the activities, contributing by participating in members’ meetings and volunteering, and learning skills to connect with other community social and leisure activities, BIDCs may be more empowering than other support services. It is more difficult to find an explanation for our finding that there were no differences across groups for loneliness, perceived social supports, and diversity of social and leisure activities. Across groups, there were fairly high levels of loneliness and fairly low levels of 85    perceived supports. These findings are despite the differences between groups for other measures including happiness, global quality of life, and subjective dimensions of participation. Other researchers have also reported high levels of social isolation and loneliness for individuals following TBI30, 97‐99. We are not aware of any TBI studies that have explored in any depth the experience of loneliness for individuals with TBI. We have found no TBI studies that have investigated the association between loneliness and social participation, or between loneliness and other aspects of SQOL such as life satisfaction or happiness. It may be that BIDCs are unable to influence many of the personal, social and environmental factors that might contribute to loneliness and/or social isolation. For example, qualitative research has found that, for individuals at 10 years post TBI, barriers to social integration include break-up of relationships, dependence on family, disruption in living situation, and poor coping and adaptation to disability100. It would appear by the nature of a BIDC that these issues are unlikely to resolve through attendance at a BIDC. Limitations There are a number of limitations to this study. Therefore, the results and conclusions must be considered tentative. First, the study’s design does not allow claims to be made of a cause and effect relationship between BIDCs and social participation and SQOL. Some or all of the statistically significant differences found in this study may represent a Type I error, considering the multiple comparisons performed; however, we reduced this risk by increasing the level of significance to 0.01. However, it may also be that there were Type II errors, in particular when considering the small sizes of the comparison subgroups. Sample size had been estimated using information from the literature on the CIQ-SI, the only one of our outcome variables used with sufficient information available on means and standard deviations for the 86    TBI population. With larger group sizes, there may be a greater number of statistically significant findings. There may have been limitations relating to the measures used. For example, participants may have had differing interpretations of some of the questions asked of them, in particular in defining ‘quality of life’ for the numerical rating scale of the QOLHQ. Another limitation may be that lack of insight or self-awareness influenced how participants responded. However, the literature does not support this perspective, and instead, as summarized by Hawthorne et al.14, indicates that individuals with impaired cognition are able to provide meaningful insights about their own conditions and experiences. Some of the measures used may not have been sensitive enough to capture differences between groups, in particular the measures of loneliness and perceived social supports. Other researchers have also questioned the sensitivity of the UCLALS and have recommended development of tools to better measure feelings of loneliness and social isolation101. Some of the measures have not had reliability or validity tested with individuals with TBI. However, reliability was enhanced by using no more than two assessors, both registered occupational therapists, with every attempt made to ensure consistency between them. Furthermore, we did not depend on a single measure for each of our constructs of interest but instead, as has been recommended by others102, we used multiple measures in an attempt to most accurately capture information about social participation and SQOL. Results from this study cannot be generalized beyond the participants involved in the study. Our group provides only a small representation of individuals with TBI who do and do not attend BIDCs, although it is comparable in many ways to much larger groups reported in TBI outcome studies. This includes the male to female ratio, primary cause of accident, and proportion of individuals with grade 12 education or less at the time of injury103‐105 . Another 87    limitation is that only individuals with TBI were recruited for this study, whereas many individuals who attend BIDCs or who may potentially benefit from attending have other types of acquired brain injury, such from brain tumour, aneurysm, or stroke. It may be that these other individuals have differing experiences than individuals with TBI, and that more could be learned about the influence of a BIDC on SQOL and social participation by including these other individuals in future research. Despite our study’s limitations, this research project provides the first exploration of BIDCs and gives some indication of the potential benefits of BIDCs. Because of the very small group size, we were unable to analyze the results of the No group, that is, the 4 individuals who stated that they would definitely not attend a BIDC. Future studies could explore differences between individuals with TBI who are interested in and available for specific support services (such as was represented by our study’s Yes group), individuals who are interested but not available (similar to our Maybe group) and individuals who are not interested in specific support services (similar to our No group), to better understand what support services can best meet the needs of what types of individuals. Future research Despite the numerous difficulties in conducting research on rehabilitation interventions14,  106  and long term supports14 for individuals with TBI, in particular within community settings107,  the findings from our study support that further research is warranted in investigating BIDCs. It may not be possible to conduct more rigorous clinical trials, considering that, for example, a lengthy period of time would be required to recruit a sufficient number of participants, and there would be a high risk of attrition. There are also many challenges to using randomized assignment in brain injury research, including ethical issues that arise in assigning some individuals to no treatment or a waitlist108. It would also be very difficult to blind individuals to 88    their group assignment. Instead, it may be more feasible to investigate specific aspects of a BIDC. For example, one could compare outcomes of those individuals attending more sociallyoriented programming at a BIDC with those people attending more leisure-focused activities at a BIDC. A survey research design could collect information about commonalities and differences in activities and programs between BIDCs and better identify the unique features of a BIDC as compared to other support services. Qualitative research, such as involving in-depth interviews of individuals attending BIDCs, would provide rich data to better understand the personal experiences associated with attending a BIDC and the value of a BIDC in a person’s life. Regardless of study design, it would be valuable to expand research efforts to include participants who have other types of acquired brain injury. One topic in particular that warrants further investigation is the experience of loneliness for individuals with TBI. Our study failed to find differences across groups using the UCLA-LS, and yet individuals in the BIDC group reported that, in the event they were no longer able to attend a BIDC, they would become lonely and lose friends and social contacts. It may be that what we measured as loneliness (using the UCLA-LS) does not measure what individuals with TBI experience as loneliness. Our review of the TBI literature reveals that there has been very little if any investigation of the experience of loneliness for individuals with TBI, other than to equate it with social isolation30. Also of interest would be investigation of the experiences of family members and caregivers, (e.g., burden of care), and the experiences of individuals who staff the BIDCs. Such information could be collected using quantitative and/or qualitative research designs. Findings from this study also indicate that, beyond further investigation of BIDCs, more research is needed to better understand other community-based support services. Research to date has 89    identified a number of different types of community-based support services that benefit individuals with TBI26, 109 , but there has been little attention so far in identifying the common characteristics of these support services that contribute to meeting the long-term needs of individuals with TBI. One review of post-acute programs for individuals with acquired brain injury concluded that early intervention, social support and individualized, contextualised programming are important features109, but there is little information on long-term supports. Clinical implications It may be that BIDCs can provide cost effective and sustainable benefits to individuals with TBI as compared to other support services such as one-to-one life skills worker or volunteer supports, in addition to a wide variety of social and leisure opportunities within one program. However, despite any advantages that a BIDC might offer, including for social participation and SQOL, this type of support service is not necessarily the best match for every person with a TBI, for example, may not contribute to meeting his/her personal goals. This was certainly demonstrated by the 4 No group participants in our study: despite a clinician or service provider having identified each of these individuals as potentially benefitting from attending a BIDC, the individuals themselves felt that they were not a good match. Results of this study, similar to previous findings44, 110, also provide a reminder that attention needs to be paid to addressing the barriers to accessing support services. This may be as simple as ensuring that individuals are provided with information about existing programs and supports. Contextual barriers (e.g., lack of transportation, too far to travel or unavailability of an accompanying caregiver) may be more difficult to address.  90    Conclusion Studies have found there to be a large proportion of individuals with TBI who have the need to find places and opportunities to socialize with others, participate in physical leisure activity, and/or do more activities outside of the home10, 110, 111 . This current study, despite its limitations, provides evidence to suggest that such needs might be met by attending a BIDC. One benefit of attendance at a BIDC may be to social participation and SQOL. The findings from our study will assist clinicians to better understand the potential benefits of attendance at a BIDC for their clients. Further research will help to improve the knowledge of the benefits specifically of BIDCs and also, in general, of other long-term support services for individuals with TBI.  91    Table 3.1: Participant characteristics: mean scores (standard deviations) or proportions (n), and comparison results Comparison group Characteristic  BIDC group, n=23  Comparison group, n=19  Maybe group, n=7  Yes group, n=12  Statistically significant differences BIDC & C: NS BIDC & M: NS BIDC & Y: NS  Effect size Phi=0.03S Phi=0.19S Phi=0.07S  Gender : male  65.2% (15)  68.4% (13)  85.7% (6)  58.3% (7)  Age  48.61 (10.76) range: 28-63  41.58 (8.66) range: 28-57  40.43 (9.50) age: 29-57  42.25 (8.49) range: 28-51  Cause of TBI: MVA  73.9% (17)  68.4% (13)  85.7% (6)  58.3% (7)  Years post injury  20.02 (12.30) range: 2-44  12.63 (5.82) range: 4-25  13.0 (5.77) range: 5-19  12.42 (6.09) range: 4-25  Pre-TBI education: grade 12 or less  56.5% (13)  47.4% (9)  57.1% (4)  41.7% (5)  BIDC & C: NS BIDC & M: NS BIDC & Y: NS  Phi=0.09S Phi=0.01S Phi=0.14S  Pre-TBI employment: student/working  78.3% (18)  84.2% (16)  85.7% (6)  83.3% (10)  BIDC & C: NS BIDC & M: NS BIDC & Y: NS  Phi=0.08S Phi=0.08S Phi=0.06S  Currently doing volunteer work  21.7% (5)  31.6% (6)  42.9% (3)  25% (3)  BIDC & C: NS BIDC & M: NS BIDC & Y: NS  Phi=0.11S Phi=0.20S Phi=0.04S  *BIDC & C: t(40)=2.30, p=0.027 η²=0.12M BIDC & M: NS η²=0.10M BIDC & Y: NS r=0.33M BIDC & C: NS BIDC & M: NS BIDC & Y: NS  Phi=0.06 S Phi=0.12 S Phi=0.16 S  *BIDC & C: t(40)=2.40, p=0.021 η²=0.13M η²=0.17L BIDC & M: NS η²=0.15L BIDC & Y: NS  92    Table 3.1 (continued): Participant characteristics: mean scores (standard deviations) or proportions (n), and comparison results Comparison group Characteristic  BIDC group, n=23  Comparison group, n=19  Maybe group, n=7  Yes group, n=12  Statistically significant differences *BIDC & C: χ²=5.84, p=0.016 *BIDC & M: χ²=5.66, p=0.017 BIDC & Y: NS  Effect size Phi=0.37M Phi=0.52L Phi=0.24S  Current living situation: alone  26.1% (6)  63.2% (12)  85.7% (6)  50.0% (6)  Personal care: support required  17.4% (4)  26.3% (5)  28.6% (2)  25% (3)  Number of therapies since TBI  3.09 (1.56) range: 0-6  3.84 (1.95) range: 0-6  5.14 (1.21) range: 3-6  3.08 (1.93) range: 0-6  Current number of therapies  0.30 (0.56) range: 0-2  0.84 (1.07) range: 0-3  1.0 (1.16) range: 0-3  0.75 (1.06) range: 0-3  Participants now receiving therapies  4.3% (1)  47.4% (9)  57.1% (4)  41.7% (5)  **BIDC & C: χ²=8.38, p=0.004 **BIDC & M: χ²=7.30, p=0.007 *BIDC & Y: χ²=5.33, p=0.021  Phi=0.50L Phi=0.60L Phi=0.47M  Current frequency per week  0.04 (0.21) range: 0-1  0.48 (0.68) range:0-2  0.48 (0.73) range: 0-2  0.48 (0.68) range: 0-2  **BIDC & C: U=125, p=0.002 **BIDC & M: U=39, p=0.002 **BIDC&Y: U=86, p=0.006  r=0.49 M r =0.57L r=0.46 M  2.04 (0.98) range: 1-4  1.58 (1.07) range:0-1  2.29 (1.11) range: 1-4  1.17 (0.84) range: 0-3  BIDC & C: NS BIDC & M: NS BIDC & Y: NS  Phi=0.11S Phi=0.12S Phi=0.09S  Therapies: BIDC & C: NS **BIDC & M: U=24.5, p=0.005 BIDC & Y: NS BIDC & C: NS BIDC & M: NS BIDC & Y: NS  r=0.51L r=0.51L r=0.02S r=0.03S r=0.32M r=0.20S  Support services: Number of support services since TBI  BIDC & C: NS BIDC & M: NS BIDC & Y: NS  r=0.23S r=0.10S r=0.42M  93    Table 3.1 (continued): Participant characteristics: mean scores (standard deviations) or proportions (n), and comparison results Comparison group BIDC group, Statistically significant Effect Comparison Maybe Yes group, Characteristic n=23 differences size group, n=19 group, n=7 n=12 r=0.33M 1.35 (0.49) 0.95 (0.62) 1.29 (0.49) 0.75 (0.62) *BIDC & C: U=147, p=0.033 Current number range: 1-2 range: 0-2 range: 1-2 range: 0-2 BIDC & M: NS of support r=0.05S **BIDC&Y: U=71.5, p=0.007 services r=0.46 M Participants now receiving support services  BIDC & C: NS (BIDC & M: no difference) *BIDC & Y: χ²=5.68, p=0.017  Phi=0.36M (no effect) Phi=0.50L  100% (23)  78.9% (15)  100% (7)  66.7% (8)  Homemaking (CIQ-HI)  5.03 (3.41) range: 0-10  6.00 (2.88) range: 0-10  6.71 (1.19) range: 5-8.75  5.58 (3.51) range: 0-10  BIDC & C: NS BIDC & M: NS BIDC & Y: NS  η²=0.09M η²=0.13M η²=0.01S  Transportation: driving  26.1% (6)  15.8% (3)  14.3% (1)  16.7% (2)  BIDC & C: NS BIDC & M: NS BIDC & Y: NS  Phi=0.13S Phi=0.12 S Phi=0.11S  Annual income < $12,000.00  60.9% (14)  63.2% (12)  57.1% (4)  66.7% (8)  BIDC & C: NS BIDC & M: NS BIDC & Y: NS  Phi=0.02S Phi=0.07S Phi=0.07S  General health rating (SF-36 GHQ)  2.41 (0.89) range: 1-4  3.03 (1.16) range: 1-5  2.79 (1.52) range: 1-5  3.17 (0.94) range: 2-5  BIDC & C: NS BIDC & M: NS BIDC & Y: NS  η²=0.07M η²=0.02S η²=0.17L  General cognitive impairment (MoCA)  21.26 (4.59) range: 4-27  21.95 (4.03) range: 15-29  20.43 (2.82) range: 16-23  22.83 (4.47) range: 15-27  BIDC & C: NS BIDC & M: NS BIDC & Y: NS  r=0.04S r=0.17S r=0.17S  Frontal systems cognitive impairment (FrSBe)  58.87 (19.27) range: 26-94  58.56 (18.02) range: 24-98 n=18  46.50 (14.56) range: 24-67 n=6  64.58 (16.93) range: 44-98  BIDC & C: NS BIDC & M: NS BIDC & Y: NS  η²<.001S η²=0.07S r=0.11S  94    Table 3.1 (continued): Participant characteristics: mean scores (standard deviations) or proportions (n), and comparison results Comparison group Maybe Yes group, group, n=7 n=12  BIDC group, n=23  Comparison group, n=19  Depression symptoms (SRDS)  0.46 (0.09) range: 0.290.69  0.51 (0.10) range: 0.350.68  0.52 (0.13) range: 0.360.68  0.50 (0.08) range: 0.350.65  BIDC & C: NS BIDC & M: NS BIDC & Y: NS  η²=0.08M η²=0.05S η²=0.03S  Participants with depression symptoms  30.4% (7)  57.9% (11)  57.1% (4)  58.3% (7)  BIDC & C: NS BIDC & M: NS BIDC & Y: NS  Phi=0.28S Phi=0.23S Phi=0.27S  Mobility aid required outside home  34.8% (8)  52.6% (10)  71.4% (5)  33.3% (4)  BIDC & C: NS BIDC & M: NS BIDC & Y: NS  Phi=0.13S Phi=0.31M Phi=0.01S  MPAI-4 abilities scale  44.26 (11.08) range: 7-58  48.47 (5.08) range: 32-55  48.0 (2.31) range: 45-51  48.75 (6.25) range: 32-55  BIDC & C: NS BIDC & M: NS BIDC & Y: NS  r=0.20S r=0.13S r=0.22S  MPAI-4 adjustment scale  38.96 (10.71) range: 12-54  47.21 (8.53) range: 23-64  45.00 (10.28) range: 23-55  48.50 (7.51) range: 35-64  Characteristic  Statistically significant differences  **BIDC & C: U=91.5, p=0.001 *BIDC & M: U=37, p=0.033 **BIDC & Y: U=54.5, p=0.004  Effect size  r=0.50L r=0.39M r=0.49M  BIDC=brain injury drop-in centre; NS=not statistically significant; C=Comparison group; M=Maybe group; Y=Yes group; TBI=traumatic brain injury; MVA=motor vehicle accident; CIQ-HS=Community Integration Questionnaire, home integration scale; SF-36 GHQ= Short Form-36 Health Survey general health question; MoCA=Montreal Cognitive Assessment; FrSBe=Frontal Systems Behaviour Rating Scale; SRDS=Zung Self-Rating Depression Scale; MPAI-4=Mayo Portland Adaptability Inventory, version 4. * p < 0.05, ** p < 0.01 S  small effect size; M medium effect size; L large effect size  95       Table 3.2: Social participation and SQOL: mean scores (standard deviations) and comparison results Comparison group Dependent variable  BIDC group, n=23  Comparison group, n=19  Maybe group, n=7  Yes group, n=12  Statistically significant differences  Effect size  Social participation *BIDC & C: t(40)=2.68, p=0.011 *BIDC & Y: t(33)=2.395, p=.046  η²=0.15L η²=0.15L  General social integration (CIQSI)  8.83 (1.88)  7.16 (2.17)  7.43 (1.27)  7.00 (2.59)  Perceived social supports (SPS)  79.70 (8.58)  76.53 (10.94)  76.57 (9.59)  76.50 (12.06)  BIDC & C: NS BIDC & Y: NS  η²=0.03S r=0.06S  ASAP diversity  40.78 (10.43)  39.98 (13.88)  40.15 (16.17)  38.29 (13.08)  BIDC & C: NS BIDC & Y: NS  η²=0.01S r=0.10S  ASAP frequency/intensity  4.38 (0.57)  4.06 (0.45)  4.30 (0.33)  3.93 (0.47)  *BIDC & C: U=134, p=0.034 *BIDC & Y: U=68.5, p=0.014  ASAP activities with others  63.27 (16.99)  48.67 (19.98)  47.35 (19.23)  49.44 (21.21)  *BIDC & C: t (40)=2.56, p=0.014 η²=0.14L r=0.27S BIDC & Y: NS  ASAP activities outside of home  71.20 (12.11)  59.35 (11.90)  62.82 (12.45)  57.32 (11.62)  ASAP enjoyment  5.25 (0.52)  4.93 (0.76)  5.35 (0.51)  4.68 (0.78)  BIDC & C: NS *BIDC & Y: t(33)=2.57, p=0.015  η²=0.06M η²=0.17L  ASAP satisfaction with performance  5.31 (0.58)  4.77 (0.86)  5.09 (0.65)  4.59 (0.94)  *BIDC & C: U=138, p=0.042 *BIDC & Y: U=75, p=0.038  r=0.31M r=0.37M  **BIDC & C: U=98.5, p=0.002 **BIDC & Y: U=50.5, p=0.002  r=0.33M r=0.41M  r =0.47M r=0.51L  96       Table 3.2 (continued): Social participation and SQOL: mean scores (standard deviations) and comparison results Comparison group Dependent variable  BIDC group, n=23  Comparison group, n=19  Maybe group, n=7  Yes group, n=12  Global quality of life (QOLHQ)  6.83 (2.48)  5.71 (1.97)  6.71 (1.70)  5.12 (1.93)  Happiness (AKHS)  7.43 (2.27)  6.39 (2.05)  8.00 (1.53)  5.46 (1.72)  Loneliness (UCLA-3)  21.39 (7.44)  22.95 (6.76)  23.86 (7.31)  22.42 (6.69)  Statistically significant differences  Effect size  SQOL BIDC & C: NS η²=0.06M *BIDC & Y: t(33)=2.07, p=0.046 η²=0.12M BIDC & C: NS **BIDC & Y: U = 61, p=0.007 BIDC & C: NS BIDC & Y: NS  r=0.27S r=0.46M η²=0.01S r=0.12S  NS=not statistically significant; BIDC=brain injury drop-in centre group; C=Comparison group; Y=Yes group; CIQ-SI=Community Integration Questionnaire, social integration scale; SPS=Social Provisions Scale; ASAP=Adult Subjective Assessment of Participation; SQOL=subjective quality of life; QOLHQ=Quality of Life and Health Questionnaire; AKHS=Abdel-Khalek Happiness Questionnaire; UCLA-LS=UCLA Loneliness Scale. * p < .05, ** p < .01 S  small effect size; M medium effect size; L large effect size  97       Table 3.3: Social participation and SQOL: percentages representing clinical significance, and comparison results Comparison group Dependent variable  Statistically significant differences  Effect size  BIDC group, n=23  Comparison group, n=19  Maybe group, n=7  ASAP enjoyment: participants with a rating at or greater than ‘somewhat enjoying’ (≥ 4)  100%  89.5%  100%  83.3%  BIDC & C: NS BIDC & Y: NS  Phi=0.25M Phi=0.34M  ASAP satisfaction: participants with a rating at or greater than ‘somewhat satisfied’ (≥ 4)  100%  84.2%  100%  75%  BIDC & C: NS BIDC & Y: NS  Phi=0.31M Phi=0.42M  Global quality of life (QOLHQ): participants with a rating at or greater than the midpoint (≥ 5)  73.9%  73.7%  85.7%  66.7%  BIDC & C: NS BIDC & Y: NS  Phi=0.003S Phi=0.08S  Happiness (AKHS): participants with a rating at or greater than the midpoint (≥ 5)  91.3%  78.9%  100%  66.7%  BIDC & C: NS BIDC & Y: NS  Phi=0.18S Phi=0.31M  Loneliness (UCLA-LS): participants with higher loneliness than the cut-off for ‘normal experience of loneliness’) (> 20)  52.2%  68.4%  71.4%  66.7%  BIDC & C: NS BIDC & Y: NS  Phi=0.17S Phi=0.14S  Yes group, n=12  Social participation  SQOL  NS=not statistically significant; ASAP=Adult Subjective Assessment of Participation; SQOL=subjective quality of life; QOLHQ=Quality of Life and Health Questionnaire; AKHS=Abdel-Khalek Happiness Questionnaire; UCLA-LS=UCLA Loneliness Scale. 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[108] Teasell R, Bayona N, Marshall S, Cullen N, Bayley M, Chundamala J, Villamere J, Mackie D, Rees L, Hartridge C, Lippert C, Hilditch M, Welch-West P, Weiser M, Ferri C, McCabe P, McCormick A, Aubut J, Comper P, Salter K, Van Reekum R, Collins D, Foley N, Nowak J, Jutai J, Speechley M, Hellings C, Tu L. A systematic review of the rehabilitation of moderate to severe acquired brain injuries. Brain Injury 2007;21:107-12. [109] McColl MA. Postacute programming for community integration: A scoping review. Brain Impairment 2007;8:238-50. [110] Pickelsimer EE, Selassie AW, Sample PL, Heinemann AW, Gu JK, Veldheer LC. Unmet service needs of persons with traumatic brain injury. Journal of Head Trauma Rehabilitation 2007 Jan-Feb;22:1-13. [111] Heinemann AW, Sokol K, Garvin L, Bode RK. Measuring unmet needs and services among persons with traumatic brain injury. Archives of Physical Medicine and Rehabilitation 2002;83:1052-9.  107       CHAPTER FOUR: FINAL DISCUSSION AND CONCLUSIONS Overview As reported in many outcome studies and summarized in a recent systematic review1, TBI has been found to have long-term, adverse effects on community integration or participation and quality of life. This includes two areas of particular concern for individuals with TBI: social participation and SQOL. It is, therefore, important not only to better understand which interventions might assist in improving social participation and SQOL, but also to better understand the nature of the relationship between social participation and SQOL. Our review of the literature revealed that, to date, the majority of TBI intervention studies have been concerned with the acute and inpatient rehabilitation stages of TBI rehabilitation. Furthermore, a number of studies have investigated clinical interventions for the community phase of rehabilitation2. However, we found that only a few researchers have investigated non-clinical support service interventions. We also found that only a few studies have explored the relationship between social participation and SQOL for individuals with TBI. This thesis reported on an exploratory study of social participation, SQOL, and attendance at brain injury drop-in centres (BIDCs) for community-dwelling adults with moderate to severe TBI. The correlational study (Chapter Two) examined the association between social participation and SQOL. The comparison study (Chapter Three) investigated differences in social participation and SQOL between a group of individuals who attended BIDCs and a group of individuals who did not attend BIDCs but who had been assessed as potentially benefitting from attending. Social participation was measured in terms of general social integration, perceived social supports, and dimensions of participation in social and leisure activity (diversity, frequency/intensity, proportion of activities performed outside of the 108       home, proportion of activities performed with others, satisfaction with performance and enjoyment). SQOL was measured in terms of global quality of life, presence of happiness, and absence of loneliness. Each of the study’s three hypotheses were generally supported, although, considering the exploratory nature of this research project and its limitations, the conclusions must be considered tentative. Findings are in support of, and provide direction for, further research into social participation, SQOL and BIDCs for individuals with TBI. Summary of Findings Correlational study The results of the correlational study support the hypothesis that there is an association between SQOL and social participation for community-dwelling adults with moderate to severe TBI. Of interest was that statistically significant correlations were found between SQOL and the more qualitative (social and subjective) dimensions of social participation, and not between SQOL and the more quantitative or objective aspects of social participation. Specifically, it was found that higher levels of happiness and global quality of life are associated with higher levels of enjoyment, satisfaction with performance, and proportion of activities performed with others. Lower levels of loneliness were found to be associated with higher levels of perceived social supports and higher levels of general social integration. There were no statistically significant correlations found between SQOL and diversity, frequency/intensity, or proportion of activities performed outside of home. We found little in the TBI literature with which to compare our correlational findings. To date, most TBI studies that have explored SQOL have focused on the cognitive appraisal of SQOL as measured by life satisfaction. There are few TBI studies that have investigated the affective appraisal of SQOL including loneliness and happiness. However, as is discussed in 109       Chapter Two, our correlational results are consistent with the few TBI and non-TBI studies that have measured similar constructs as our study, and add to these findings. Further, our project is one of the first TBI studies to consider the multi-faceted nature of social participation, thus investigating the association of both objective and subjective aspects of social participation and SQOL. Comparison study The results of the comparison study provide tentative support for the hypotheses that, for community-dwelling adults with moderate to severe TBI, individuals who attend BIDCs have higher social participation and higher SQOL than individuals who do not attend BIDCs but who have been identified as potentially benefitting from attending. Of interest was that we found the Comparison group to be comprised of two distinct subgroups, which we termed the Yes group and the Maybe group. The Yes group were individuals who stated that yes, they would like to attend a BIDC, but were not attending because they had not yet heard of a BIDC or experienced contextual barriers to attending. The Maybe group was comprised of individuals who stated that they might attend a BIDC but, for the most part, reported being too busy to attend. When we broke down the Comparison group into the Maybe group and Yes group, we found that the differences between the BIDC group and Comparison group were mainly between the BIDC group and Yes group. The only measures for which there were no statistically significant differences between the BIDC group and Comparison group or between the BIDC group and Yes group were loneliness, perceived social support, and diversity of social and leisure activities. The comparison findings suggest that attendance at a BIDC benefits many areas of social participation and SQOL. This suggestion is further supported by our descriptive findings 110       relating to involvement in a BIDC: the individuals in the BIDC group provided a high mean rating of the importance of a BIDC in their lives, reported that BIDC activities comprise a large proportion of their current social and leisure activities, and stated that they expected that they would experience a negative impact on many aspects of their social participation and SQOL if they were to no longer attend a BIDC. Furthermore, there is some consistency between our findings and reports in the literature of other types of day programs and community-based leisure programs in terms of the positive influence of attendance on various aspects of social participation and SQOL3, 4. When considering the information that we collected on participant characteristics, we found only one factor that might help explain why the Maybe group was more similar to the BIDC group than to the Yes group in terms of social participation and SQOL. This factor was current involvement in support services. The BIDC and Maybe groups had similar levels of involvement in support services, with both groups higher than the Yes group. It may be that a number of different types of support services, not just BIDCs, provide benefits in terms of social participation and SQOL. However, BIDCs may offer advantages to other types of support services in terms of cost effectiveness, comprehensiveness of the social participation activities offered, and opportunities to empower the participants through membership and volunteer activities and linkages with the community. Clinical Significance The above summarized findings take into consideration statistical significance, which is concerned with whether or not the obtained results are simply a chance finding5. However, clinical significance is also important6 and therefore warrants further discussion. Clinical significance speaks to the efficacy of a treatment, that is, the benefits of the treatment to 111       individuals or its ability to make a difference in peoples’ lives5. One criterion for clinical significance, or practical importance, is the statistically reliable magnitude of results7. In our study, for both the correlational and comparison studies, we found the effect sizes to be medium or large. Another criterion for clinical significance is the clinical relevance of scores in comparison to the range of normal functioning, for example by considering the percentage of participants whose scores fall beyond a specific cut-off point7. These percentages can be analysed for statistically significant differences between groups or simply be used descriptively to augment the results of between-group comparisons of mean scores7. As is shown in table 3.3 in Chapter Three, we were able to identify clinically relevant cut-off points for a number of our social participation and SQOL measures. These cut-off points generally represent the division between less desirable and more desirable scores. Although we found no statistically significant differences between groups for the percentage of individuals on either side of the cut-off score for each dependent variable, the findings were of interest descriptively. With the exception of loneliness (which is similar across groups), there is a pattern of the BIDC group and Maybe group having the highest proportions of individuals with the more desirable scores, and the Yes group having the lowest proportions. This pattern is similar to our findings when examining differences in mean scores. As another indication of clinical significance, it is interesting to compare our findings with the results of other studies. Such a comparison is possible for four of our measures. General community integration. As shown in table 4.1, the mean CIQ-SI scores for the Maybe group and Yes group appear to fall within the range of mean scores for individuals with TBI8‐11, whereas our BIDC group’s mean score is more similar to that of individuals without disability8, 10. Furthermore, when comparing our results to a study that investigated a six-month 112       program of community-based group leisure activities3, our BIDC group’s mean CIQ-SI score is more similar to the post-test scores for the study’s ‘sustained activity’ group, whereas our Maybe and Yes groups’ mean scores are more similar to the pre-test score for the ‘sustained activity’ group and to both the pre- and post- test scores of the ‘non sustained activity’ group. Altogether, these findings suggest that the outcome of attending a BIDC may be similar to attending other programs that offer group leisure activities, and that attendance in such programs may be associated with a CIQ-SI score that is within the range of normal functioning. Happiness. As shown in table 4.1, it appears that, on average, the individuals within our BIDC group and Maybe group have a similar or higher level of happiness as individuals without disabilities, as represented by groups of university undergraduates and government employees12. We also note that almost all of the individuals in our BIDC group (91.3%) and all of the individuals in our Maybe group rated themselves at or above the midpoint on the AKHS. These results appear consistent with the finding that most people, including individuals with disabilities, report being relatively happy13. In contrast, our Yes group reported a lower mean rating of happiness than the non-disabled groups, and only 66% of individuals in this group rated themselves at or above midpoint on the happiness scale. Thus, it may be that individuals who attend BIDCS have a level of happiness that is within a normal range of functioning; this might also be the case for individuals who are involved in other types of support services as represented by our Maybe group. Global quality of life. As shown in table 4.1, it is clear that the mean ratings of global quality of life for our Yes group are below ratings of other groups with TBI as well as below a range of ratings for individuals without disability. Our BIDC group and Maybe group have mean ratings similar to other groups of individuals with TBI14‐16, and this may also fall within 113       the range of ratings for individuals without disability14, 15. However, using global quality of life measures other than numeric rating scales, a number of researchers have found individuals with TBI to have a lower SQOL than individuals without disability17‐20. Perceived social supports. Mean ratings for perceived social supports were similar across the groups in our study but it is difficult to know the clinical relevance of these ratings. There is no published, clinically-significant cut-off point for the Social Provisions Scale (SPS). As shown in table 4.1, the mean SPS scores in our study appear somewhat lower than for a group of college students, teachers and nurses21 and a group of university students22, although somewhat higher than for a group of community-dwelling adults with TBI19. Summary. In summary, the clinically significant findings augment the statistically significant findings of our research project. The clinically significant findings suggest that associations found between social participation and SQOL, and the differences found between groups on the dependent variables, are more than just trivial in size. Furthermore, specific to the comparison study, the clinically significant findings suggest that, for a number of social participation and SQOL measures, individuals within the BIDC group, and perhaps also the Maybe group but not the Yes group, might approximate a non-disabled population. Concluding discussion with future directions Limitations As has been discussed in Chapters Two and Three, there are several limitations that reduce both the internal and external validity of our research project. This includes an inflated risk of Type I error with multiple analyses, although we adjusted for this by setting the level of significance at 0.01, and the possibility of Type II errors. There may also have been measurement errors despite our selection of reliable and valid instruments and use of only two 114       assessors who were well-qualified in administering tests and measures and who made every attempt to ensure consistency in data collection. We also used multiple measures to capture a comprehensive picture of social participation and SQOL outcomes. External validity was compromised by the cross-sectional design and sampling bias. The participants involved in the study may not represent the larger population of individuals with TBI who attend or who do not attend BIDCs. Based on information provided by the BIDCs, it is estimated that our BIDC group was comprised of only about 13.5% of the individuals with TBI who attend a BIDC within the Lower Mainland and Fraser Valley. Individuals who did not participate in the study either did not meet the eligibility criteria or did not volunteer to participate. We do not have information about participant characteristics for the individuals who did not participate. Further, all of the Comparison group participants were known by a TBI service provider, and therefore we missed out on individuals who are not linked to any TBI service providers. This may not provide a good representation of individuals who may benefit from attending a BIDC. However, despite the limitations in generalizing our findings, the results do represent the individuals who participated and therefore may be of value specifically to them, the BIDCs that they attend and the funders of these BIDCs. The comparison study failed to show differences between groups for loneliness and perceived social supports. This was surprising considering the descriptive finding that many individuals in the BIDC group reported that, if they did not attend a BIDC, they would lose friends and social contacts and they would become lonely. It may be that that the instruments that we selected did not adequately measure loneliness and perceived social supports, at least not in terms of how loneliness or perceived social supports may be influenced by attendance at a BIDC. 115       Despite its limitations, this research project contributes to the literature on social participation and SQOL for individuals with TBI and provides the first systematic investigation of BIDCs. This investigation represents an early stage of clinical research, considered an ‘exploratory clinical study’, with the purpose of providing a first step in investigating a treatment innovation23, 24. Exploratory designs are important sources of research evidence25, and more rigorous clinical trials cannot be performed without first investigating and developing treatments using exploratory designs23. Future directions for research The results of this investigation provide direction for future research. In following the maturational phases of neurorehabilitation research23, 26, the next step in researching BIDCs would be to conduct a within-subject, repeated measures experimental design, to be followed by a randomized, comparison group design. However, in considering the difficulties in TBI research in using longitudinal studies27 and randomized control trials25, including challenges in creating appropriate placebo or comparison treatments26 and selecting a representative sample of this highly heterogeneous population28, it is unlikely that these more rigorous designs would be feasible in studying BIDCs. Research methodologies other than randomized clinical trials may be better suited to studying community-based interventions and supports for individuals with brain injuries29. Qualitative investigation, which is much better suited to studying subjective experiences30, would be well suited to gaining an in-depth understanding of loneliness19 and other aspects of SQOL, as well as the subjective dimensions of social participation. This could include exploring the meaning of time use and activity for individuals with TBI, for example, to augment recent qualitative studies that have investigated the experience of participation in daily life31 and the 116       experience of feeling well30. Other topics of interest arising from our study are barriers to participation, and the issue of feeling ‘busy’ as reported by individuals in the Maybe group. Quantitative and qualitative research designs would be appropriate in investigating the perspectives of family members and caregivers, for example to explore whether attendance at a BIDC by the person with TBI contributes to a reduced burden of care for others. Family members, caregivers, friends and BIDC staff members could also provide valuable information as to any changes they have observed in the person with TBI as might relate to their attendance at a BIDC. Beyond research designs that focus on individual experiences, a survey design would elicit descriptive information about BIDCs. Economic and health services research would address issues such as the cost-effectiveness of BIDCs in comparison to therapies and other support service interventions. Clinical recommendations Considering the association that we found between social participation and SQOL, it may be that, by enhancing social participation for individuals with TBI, rehabilitation interventions can in turn benefit SQOL. Based on the findings of our correlational study, the most important aspects of social participation may be the social and subjective dimensions, including enjoyment, satisfaction with performance and performing activities with others (found to be associated with happiness and global quality of life) and perceived social supports (associated with loneliness). Based on the results of our comparison study, a BIDC may not benefit perceived social supports but may enhance enjoyment, satisfaction with performance and performing activities with others, as well as happiness and global quality of life. It may be of value to the agencies/ staff who operate BIDCs to consider that, by assisting individuals with moderate to severe TBI to perform more of their social and leisure activities with others and to 117       address their preferences, thereby aiming to improve enjoyment and satisfaction with performance for social and leisure activities, there may also be the potential to improve happiness and global QOL. It may be of value to other clinicians and service providers to consider that, where there are goals of improved happiness and global quality of life, it may be more beneficial to focus on the more qualitative (social and subjective) dimensions of participation rather than just aiming to increase diversity and frequency/intensity of activities. This may include consideration of a BIDC as a support service intervention to address the social and subjective dimensions of social participation. Findings may be of particular interest to occupational therapists, health care professionals who are concerned with promoting health and well-being through occupation32. For occupational therapists, the traditional view of occupation is in terms of the categories of work, self-care and leisure. However, it may be that these categories of occupation are not as important as the meanings of occupation, for example the meanings associated with positive experiences and engaging with others. Our participants demonstrated that even when unemployed and, for many, with little involvement in homemaking activities, they had the capacity to have high levels of SQOL and that this was associated in particular with high levels of subjective experience in social participation including participating with others. These findings resonate with other researchers who have considered the importance of occupation in terms of meaning rather than activity categories. For example, Hammell33 proposed that occupation might be better described in terms of doing, being, belonging and becoming, rather than as categories of self-care, productivity and leisure. More recently, Hammell34 described the ways in which individuals experience occupation ‘...as restorative, as ways to connect and 118       contribute, as engagement in doing, and as ways to connect the past and present to a hopeful future...’ (p. 107). Hammell reviewed that associations have been found between quality of life and personally meaningful activity34. Specific to individuals with TBI, Ylvisaker35 found that participation in personally meaningful projects resulted in improved self-esteem and sense of competence and reduced anxiety. Summary This study investigated a novel and innovative community-based support service for adults with TBI, the BIDC. Findings provide tentative support that attendance at BIDCs may benefit social participation and SQOL. This investigation also provides support for there being an association between SQOL and the more qualitative (social and subjective) dimensions of social participation. Despite this investigation being exploratory in nature, it provides a foundation for more rigorous quantitative investigation of the effectiveness and efficacy of BIDCs as well as direction for more feasible research designs including qualitative investigation. Results of our study also indicate that further research may be warranted that focuses on other long term support services interventions for individuals with TBI, considering that other support services may also benefit social participation and SQOL. Results from this study and subsequent investigations will be of value for service providers and funders, individuals with TBI, and their families and caregivers.  119       Table 4.1: Clinical significance in relation to other published studies: means (standard deviations)  Dependent variable General social integration (CIQ-SI)  Current study BIDC group: 8.83 (1.88) Maybe group: 7.43 (1.27) Yes group: 7.00 (2.59)  Other published studies (community samples) TBI No disability 8 Willer et al., 19938: TBI model systems data : 8.10 (NA) (n=73 men) 8.97 (NA) (n=105 men) 8.95 (NA) (n=21 women) 9.39 (NA) (n=132 women) Willer et al., 19938: 6.46 (NA) (n=241 men) 7.44 (NA) (n=111 women)  Corrigan et al., 199510 (n=104): 8.33 (2.08)  Corrigan et al., 199510 (n=46): 6.80 (2.01) Burleigh et al. 199811 (n=30): 7.57 (2.11) Wood et al., 20089 (n=80): 7.63 (2.62) Douglas et al., 20063 (leisure group): SA (n=6): Pre-test: 7.2 (2.6) Post-test: 9.3 (1.9) NSA (n=6): Pre-test: 6.7 ( 2.7) Post-test: 7.5 ( 2.0)  120       Table 4.1 (continued): Clinical significance in relation to other published studies: means (standard deviations)  Dependent variable Happiness (AKHS)  Current study BIDC group: 7.43 (2.27) Maybe group: 8.00 (1.53)  Other published studies (community samples) TBI No disability Abdel-Khalek, 200612: Government employees: 7.00 (2.01) (n=227 men) 6.34 (2.47) (n=210 women)  Yes group: 5.46 (1.72)  University undergraduates: 7.36 (2.09) (n=250 men) 6.40 (2.40) (n=253 women) Global quality of life (numeric rating scale, equivalent to a scale of 010)  BIDC group: 6.83 (2.48) Maybe group: 6.71(1.70) Yes group: 5.12 (1.93)  Kreuter et al., 199814: With partner (n=53): 6.69 (2.35) Single (n=39): 5.88 (2.46)  Kreuter et al., 199814: With partner (n=155): 7.42 (1.97) Single (n=109): 6.23 (2.13)  Dawson et al., 200015 : Moderate TBI (n=8): 7.8 (2.0) Severe TBI (n=16): 6.2 (1.8)  Dawson et al., 200015 (n=15): 7.4 (2.2)  Steadman-Pare et al., 200116 (n=275): 7.1 (2.2) Perceived social supports (SPS)  BIDC group: 79.70 (8.58) Maybe group: 76.57 (9.59) Yes group: 76.50 (12.06)  Kalpakjian et al., 200419 (n=50): 72.92 ( 12.75)  Cutrona and Russell, 198721 (n= 1,193 college students, teachers, nurses): 82.45 ( 9.89) Dolbier and Steinhardt, 200022 (n=120 university students): 84.8 (8.7)  CIQ-SI=Community Integration Questionnaire social integration scale; BIDC=brain injury drop-in centre; NA=information not available; TBI=traumatic brain injury; SA=sustained change in activity; NSA=no sustained change in activity; AKHS=Abdel-Khalek Happiness Scale; SPS=Social Provisions Scale  121       References [1]  Temkin NR, Corrigan JD, Dikmen SS, Machamer J. Social functioning after traumatic brain injury. Journal of Head Trauma Rehabilitation 2009;24:460-7.  [2]  Evans L, Brewis C. The efficacy of community-based rehabilitation programmes for adults with TBI. International Journal of Therapy and Rehabilitation 2008;15:446-58.  [3]  Douglas JM, Dyson M, Foreman P. Increasing leisure activity following severe traumatic brain injury: Does it make a difference? Brain Impairment 2006;7:107-18.  [4]  Fraas M, Balz M, DeGrauw W. Meeting the long-term needs of adults with acquired brain injury through community-based programming. Brain Injury 2007;21:1267-81.  [5]  Jacobson NS, Truax P. Clinical significance: A statistical approach to defining meaningful change in psychotherapy research. Journal of Consulting and Clinical Psychology 1991;59:12-9.  [6]  Badr LK. Statistical versus clinical significance for infants with brain injury: Reanalysis of outcome data from a randomized controlled study. Clinical Nursing Research 2009;18:136-52.  [7]  Jacobson NS, Roberts LJ, Berns SB, McGlinchey JB. Methods for defining and determining the clinical significance of treatment effects: Description, application, and alternatives. J Consulting and Clinical Psychology 1999;67:300-7.  [8]  Willer B, Rosenthal M, Kreutzer JS, Gordon WA, Rempel R. Assessment of community integration following rehabilitation for traumatic brain injury. Journal of Head Trauma Rehabilitation 1993;8:75-87.  [9]  Wood RL. Long-term outcome of serious traumatic brain injury. European Journal of Anaesthesiology Supplement 2008;42:115-22.  [10] Corrigan JD, Deming R. Psychometric characteristics of the community integration questionnaire: Replication and extension. Journal of Head Trauma Rehabilitation 1995;10:41-53. [11] Burleigh SA, Farber RS, Gillard M. Community integration and life satisfaction after traumatic brain injury: Long-term findings... presented at the 1997 American Occupational Therapy Association annual conference and exposition, Orlando, Florida. American Journal of Occupational Therapy 1998;52:45-52. [12] Abdel-Khalek AM. Measuring happiness with a single-item scale. Social Behavior and Personality 2006;34:139-50. [13] Dunn DS, Brody C. Defining the good life following acquired physical disability. Rehabilitation Psychology 2008 11;53:413-25. 122       [14] Kreuter M, Sullivan M, Dahllof AG, Siosteen A. Partner relationships, functioning, mood and global quality of life in persons with spinal cord injury and traumatic brain injury. Spinal Cord 1998;36:252-61. [15] Dawson DR, Levine B, Schwartz M, Stuss DT. Quality of life following traumatic brain injury: A prospective study. Brain and Cognition 2000 10;44:35-9. [16] Steadman-Pare D, Colantonio A, Ratcliff G, Chase S, Vernich L. Factors associated with perceived quality of life many years after traumatic brain injury. Journal of Head Trauma Rehabilitation 2001;16:330-42. [17] Corrigan JD, Bogner JA, Mysiw WJ, Clinchot D, Fugate L. Life satisfaction after traumatic brain injury. Journal of Head Trauma Rehabilitation 2001;16:543-55. [18] Dijkers MP. Quality of life after traumatic brain injury: A review of research approaches and findings. Archives of Physical Medicine and Rehabilitation 2004;85:S21-35. [19] Kalpakjian CZ, Lam CS, Toussaint LL, Merbitz N. Describing quality of life and psychosocial outcomes after traumatic brain injury. American Journal of Physical Medicine and Rehabilitation 2004;83:255-65. [20] Huebner RA, Johnson K, Bennett CM, Schneck C. Community participation and quality of life outcomes after adult traumatic brain injury. American Journal of Occupational Therapy 2003;57:177-85. [21] Cutrona CE, Russell DW. The provisions of social relationships and adaptation to stress. Advances in Personal Relationships. 1987;1:37-67. [22] Dolbier CL, Steinhardt MA. The development and validation of the sense of support scale. Behavioral Medicine 2000;25:169. [23] Rothi LG. Cognitive rehabilitation: The role of theoretical rationales and respect for the maturational process needed for our evidence. Journal of Head Trauma Rehabilitation 2006;21:194-7. [24] Rothi LG, Barrett AM. The changing view of neurorehabilitation: A new era of optimism. Journal of the International Neuropsychological Society 2006 11;12:812-5. [25] Teasell R, Bayona N, Marshall S, Cullen N, Bayley M, Chundamala J, Villamere J, Mackie D, Rees L, Hartridge C, Lippert C, Hilditch M, Welch-West P, Weiser M, Ferri C, McCabe P, McCormick A, Aubut J, Comper P, Salter K, Van Reekum R, Collins D, Foley N, Nowak J, Jutai J, Speechley M, Hellings C, Tu L. A systematic review of the rehabilitation of moderate to severe acquired brain injuries. Brain Injury 2007;21:107-12.  123       [26] Whyte J, Gordon W, Gonzalez Rothi L. A phased developmental approach to neurorehabilitation research: The science of knowledge building. Archives of Physical Medicine and Rehabilitation 2009;90:S3-10. [27] Resch JA, Villarreal V, Johnson CL, Elliott TR, Kwok O, Berry JW, Underhill AT. Trajectories of life satisfaction in the first 5 years following traumatic brain injury. Rehabilitation Psychology 2009;54:51-9. [28] Kennedy MRT, Turkstra L. Group intervention studies in the cognitive rehabilitation of individuals with traumatic brain injury: Challenges faced by researchers. Neuropsychological Review 2006 12;16:151-9. [29] McColl MA. Postacute programming for community integration: A scoping review. Brain Impairment 2007;8:238-50. [30] Jumisko E, Lexell J, Söderberg S. The meaning of living with traumatic brain injury in people with moderate or severe traumatic brain injury. Journal of Neurosciences Nursing 2005;37:42-50. [31] Häggström A, Lund ML. The complexity of participation in daily life: A qualitative study of the experiences of persons with acquired brain injury. Journal of Rehabilitation Medicient 2008;40:89-95. [32] Pollard N, Sakellariou D, Lawson-Porter A. Will occupational science facilitate or divide the practice of occupational therapy? International Journal of Therapy and Rehabilitation 2010;17:40-7. [33] Hammell KW. Dimensions of meaning in the occupations of daily life. Canadian Journal of Occupational Therapy 2004 12;71(5):296-305. [34] Hammell KW. Self-care, productivity, and leisure, or dimensions of occupational experience? rethinking occupational "categories". Canadian Journal of Occupational Therapy 2009 04;76(2):107-14. [35] Ylvisaker M, Feeney T, Capo M. Long-term community supports for individuals with cooccurring disabilities after traumatic brain injury: Cost effectiveness and project-based intervention. Brain Impairment 2007;8:276-92.  124       Appendix A: Ethics approvals  1.  UBC Behavioural Research Ethics Board, Certificate of Approval – Full Board, March 26, 2009  2.  Vancouver Coastal Health Research Institute (Vancouver Community), Certificate of Approval, May 7, 2009  3.  Vancouver Coastal Health Research Institute (Coastal), Final Certificate of Approval, May 27, 2009  4.  UBC Behavioural Research Ethics Board, Certificate of Approval, Minimal Risk Amendment, September 17, 2009  5.  Vancouver Coastal Health Research Institute (approval to conduct research at the GF Strong Rehab Centre), Final Certificate of Approval, October 20, 2009  125          126          127          128          129          130       131       Appendix B: Participant consent form  132       133       134       135       Appendix C: Measures used – details about each measure Measure  Details  Participant Characteristics Participant Time to complete: 10 to 15 minutes. characteristics Description: This self-report questionnaire was developed specifically questionnaire for this study. It captured demographic information as well as diagnostic and rehabilitation history relating to the participant’s traumatic brain injury (TBI). General Health Question from the Medical Outcomes Short Form36 Health Survey (SF36 GHQ)1  Time to complete: less than 5 minutes. Description: This single question, self-report item requires the participant to rate his/her overall health on a 5-point scale: ‘excellent’ (rated 1), ‘very good’ (rated 2), ‘good’ (rated 3), ‘fair’ (rated 4) and ‘poor’ (rated 5)2. Psychometrics and use with individuals with TBI: A number of studies have found good test-retest reliability for the SF-36 GHQ. For example, in a study involving two groups of individuals at a medical outpatient clinics, the test-retest reliability was r=0.86 and r= 0.88 over an interval of one to two weeks3. Test-retest reliability for a group of individuals with stroke, with an interval of approximately three weeks, was r=0.814. The full SF-36 has been found to be able to differentiate between individuals with TBI and people without a disability5. Specific to individuals with TBI, on average, for many of the scales (including the GHQ), individuals with mild TBI reported significantly poorer health than individuals with moderate and severe TBI; however, in controlling for depression, the differences in scores between mild and moderatesevere TBI were eradicated5. For individuals with TBI, SF-36 scores were found have statistically significant correlations with other measures of health problems (e.g., a checklist of cognitive, behavioural, affective and physical symptoms, a list of medical problems, and the Beck Depression Inventory). These correlations were higher for individuals with mild TBI than for moderate-severe TBI, suggesting that the SF-36 is more sensitive to health difficulties reported by individuals with mild TBI than with moderate-severe TBI5 . One study found a group of individuals with moderate-severe TBI (n=228), mean of 10.05 years (SD=8.8) post TBI, to have a mean GHQ score of 2.72 (SD=0.96)5. Another study found a group of individuals with mild, moderate and severe TBI (but mostly moderate and severe TBI) (n=272), mean of 14.2 years (SD=4.3) to have a mean GHQ score of 2.70 (SD=1.0)6. Thus, the mean score for both studies falls in 136        between the rating of ‘good’ and ‘very good’. The same study found that higher levels of self rated health, as measured on the GHQ, were positively associated with higher levels of global quality of life, as measured using the Quality of Life and Health Questionnaire’s quality of life numerical rating scale6. Montreal Cognitive Assessment (MoCA)7  Time to complete: 10 minutes. Description: This performance measure is a fairly newly developed screen of cognitive function. The 17 items fall within the cognitive domains of attention and concentration, visuospatial/executive function, memory, language, abstraction, and orientation. The administration and scoring instructions provide the evaluator with guidelines for scoring the evaluee’s performance on each item; these are then summed for a total score. An additional point is given if the evaluee has 12 years or less of education. The highest score is 30; a score of 26 or higher is considered normal. Permission is required to use this questionnaire for research purposes Permission was received from Dr. Ziad Nasreddine for use of the MoCA in our research study. Psychometrics and use with individuals with TBI: In a sample of older adults with mild cognitive impairment or who had been diagnosed with Alzheimer’s Disease, the MoCA was found to have high test-retest reliability over a mean interval period of 35 days (SD=17.6) days (correlation coefficient = 0.92) and good internal consistency (Cronbach alpha = 0.83)7. Also with this sample of older adults, the MoCA was found to have excellent sensitivity to mild cognitive impairment, more so than the Mini Mental Status Examination (MMSE)7. To date, there are no reports in the literature of the MoCA having been studied with the TBI population; however, it has widespread use clinically. It has recently been studied with individuals with brain tumour8, and was found to be more sensitive to cognitive impairment than the MMSE. Validation studies are now underway with individuals with brain tumour8.  Frontal Systems Behavior Rating Scale (FrSBe) 9  Time to complete: 10 minutes. Description: This self-report measure complements the MoCA by providing a more in-depth assessment of executive function. The individual rates himself or herself on 46 items. Each item is a phrase that describes one aspect of behaviour, such as relating to social behaviours, organization, multi-tasking, judgment, planning, and initiative. The 5-point rating scale ranges from 1 (almost never demonstrates the specific behaviour), to 5, (almost always). The 137        individual can provide one rating representing his/her behaviour prior to injury, and another rating representing the present time; only the latter was used for this study. The higher the score is, the greater the executive dysfunction. A raw score can be calculated for each of three subscales (apathy, disinhibition and executive dysfunction) and for the total score. These raw scores are then converted to age- and education-corrected tscores. Psychometrics and use with individuals with TBI: The FrSBe has been found to have high internal consistency. Using the normative sample (individuals without neurological conditions), Grace and Malloy10 reported alpha coefficients varying from 0.72 to 0.88 for the three subscales and total score. Stout et al.11, using a sample of outpatients with a variety of neurological diagnoses, confirmed a factor structure consistent with the three subscales of the FrSBe. Internal consistency was found to be good using a sample of individuals with schizophrenia, with alpha values varying from 0.86 to 0.94 for the three subscales and total score12. Good test-retest reliability was shown for a three-month interval for a group of individuals with schizophrenia, with the correlation coefficients varying from 0.65 to 0.78 for the three subscales and total score12. The FrSBe has good construct validity9. For individuals with dementia, a statistically significant correlation (r=0.64) was found between the FrSBe total score and another measure of neurobehaviour, the Neuropsychiatric Inventory, suggesting convergent validity13. Discriminant validity has been demonstrated, including showing that apathy (one of the scales on the FrSBe) and depression are distinct syndromes14. For the non-clinical population, FrSBe scores correlate with objective measures of executive dysfunction15. For individuals with TBI, the FrSBe has been found to be predictive of community integration as measured by the Community Integration Questionnaire16. Zung SelfRating Depression Scale (SRDS)17  Time to complete: 10 minutes. Description: This self-report measure screens for depressive symptoms, but on its own does not allow for a diagnosis of depression18. There are 20 items, each describing how a person might have felt over the past few days. The individual rates each item on a four-point response scale, from ‘A little of the time’ to ‘Most of the time’. Using the scoring key, the evaluator converts each rating to a numerical score, and sums these up to create the total score, maximum 80, converted to an index score, maximum 1.00 (representing 100%). The interpretation key indicates that most individuals with depression have an index score between 0.50 138        and 0.69. A score of 0.70 or greater indicates severe depressive symptoms17. Psychometrics and use with individuals with TBI: Factor analysis identified that the SRDS measures four dimensions of depression: core depressive, cognitive, anxiety and somatic (using a sample of individuals who had sought consultation from a primary care physician for whatever reason)19. By the first author’s clinical experience and as reported in the literature20, 21, the SRDS has been used with individuals with moderate and severe TBI. However, there may be some limitations to its use for measuring depression in individuals with TBI. One study discussed that the SRDS may not be sensitive enough to diagnose depression for individuals with TBI and that the somatic symptoms that are the result of TBI may overlap with diagnostic features of depression; it was recommended that a psychiatric interview was the ‘gold standard’ for diagnosing individuals with depression within this population20. Another study felt that there was a confounding overlap between the cognitive/psychological symptoms of a neurological disorder such as TBI and the cognitive/ psychological symptoms associated with depression, but did not express any concerns about a potential overlap of somatic symptoms21. To date, reliability studies have focused on internal consistency of the SRDS. The SRDS has been found to have fair internal consistency with an alpha coefficient of (a) 0.86 for a sample of individuals on an inpatient psychiatric unit22, (b) 0.75 for a group of individuals with drug addiction23, (c) 0.79 for a group of university students 23and (d) 0.81 for a group of college students24. Split-half reliability was found to be r=0.73 for a group of individuals on an inpatient psychiatric unit18. One study investigated test-retest reliability of the SRDS using a group of individuals with schizophrenia (time interval not published in English), and found high reliability, rho=0.8725. The SRDS has been shown to be able to distinguish between individuals with depression and other psychiatric diagnoses in a group of outpatients at a psychiatric clinic17, 26, and between individuals with depression and alcohol abusers in a group of individuals referred to vocational rehabilitation services27. A number of studies have shown convergent validity in comparing the SRDS with two other depression measures, the depression scale of the Minnesota Multiphasic Personality Inventory (MMPI-D) and the Beck Depression Inventory (BDI). For example, convergent validity was found with the MMPI-D with two groups of individuals attending a 139       psychiatric outpatient clinic, r=0.7026 and r=0.6517, a group of individuals on an inpatient psychiatric unit, r=0.7322. The SRDS is felt to cover a wider range of depressive symptoms than the MMPI-D, and therefore to be more congruent with Diagnostic and Statistical Manual of Mental Disorders (DSM) depression criteria27. Convergent validity was found with the BDI with a group of individuals on an inpatient psychiatric unit, r=0.8122. Mayo Portland Adaptability Inventory (MPAI-4)28  Time to complete: 15 to 20 minutes. Description: This 35-item self-report questionnaire dates to 1987 with the development of the original Portland Adaptability Inventory. The MPAI-4 is the fourth version. It was designed to assist in the evaluation of physical, cognitive, emotional, behavioural and social abilities and difficulties experienced by individuals in the post-hospital period following acquired brain injury. The MPAI-4 has been recommended as part of a minimum data set for this population29. Each item is measured on a 5-point scale, from 0 (no problems), to 4 (severe problems). Twenty-nine of the 35 items are scored and constitute three indices or subscales. The Ability subscale (12 items) provides a self-report on sensory, motor and cognitive abilities; the Adjustment subscale (12 items, 3 items also contributing to the Participation subscale) on mood and interpersonal interactions; and the Participation subscale (8 items) on single items relating to social contacts, initiation, leisure, self-care, residence, transportation, employment, and money management. A raw score is calculated for each subscale and then summed to create the total raw score which ranges from 0 to 37. Each raw score subscale and the total raw score can then be converted to standard scores (t-scores) ranging from 0 to 100. The higher the score is, the more severe the limitations. A t-score below 30 represents relatively good outcomes, between 30 and 40 suggests mild limitations, between 50 and 60 in the moderate to severe range, and above 60 suggests severe limitations even as compared to other people with acquired brain injury. The final six items assess alcohol use, drug use, psychotic symptoms, law violations, other conditions causing physical impairment, and other conditions causing cognitive impairment. As these items were not directly related to the research question and are not scored, they were not administered. Only the Ability and Adjustment subscales were used in this research project. Psychometrics and use with individuals with TBI: There is demonstrated reliability and validity evidence, using Rasch analysis as well as traditional psychometric analyses. Using a group of communitybased individuals with moderate to severe acquired brain injury, there is acceptable internal consistency for the overall measure, Cronbach’s 140        alpha = 0.89, and for the three rating scales, with the alpha coefficients ranging from 0.76 to 0.83, average 0.7930. Inter-rater (item) agreement has been found for the three potential rating sources (individuals with brain injury, significant other, and rehabilitation staff)31. Convergent validity has been demonstrated for individuals with acquired brain injury in a number of studies32. This includes that moderate correlation has been found between the MPAI and the Disability Rating Scale, Rancho Scale of Cognitive Function, and a number of neuropsychological measures30. An earlier version was found to have some predictive validity in terms of long term vocational and independent living outcomes, and identification of individuals at high risk of needing more extensive community-based services and long-term supports30. Involvement in a brain injury drop-in centre (BIDC) BIDC attendance questionnaire  Time to complete: 10 minutes  Rating of importance of attending a BIDC  Time to complete: less than 5 minutes  Description: This self-report questionnaire was developed specifically for this research project. It captured information about attendance at a BIDC, including frequency, types of activities in which the person participates, and potential barriers to attending. There was a separate version for those who attend BIDCs and those who do not attend BIDCs. Description: In addition to the BIDC attendance questionnaire, individuals who attend BIDCs were asked two questions. The first was, ‘How important is attending a brain injury drop-in centre to you?’, with the following response options rated from 1 to 5: not at all important (scored 1), a little important, somewhat important, quite important, and very important (scored 5). The second question was open-ended, ‘How would life look if you were not attending a brain injury drop-in centre?’  Social Participation Community Integration Questionnaire (CIQ)33  Time to complete: 5 to 10 minutes Description: This 15-item, self-report questionnaire is a measure of frequency and level of independence of participation in social and leisure activities, activities at home, and productive activities. There are six items for the social integration scale, five items for the home integration scale, and four items for the productivity scale. Depending on the item, there are two to five response options from which to select. Using the scoring guidelines, the evaluator converts each selection into a numerical score. A sum score can then be 141        calculated for each of the three scales (social integration, maximum score 12; home integration, maximum score 10; productivity, maximum score 7). These, in turn, can be added to create a total score (maximum 29); the higher the score, the higher the level of community integration. The primary focus of the CIQ for this study was the social integration scale, although the full measure was administered. The CIQ social integration scale (CIQ-SI) has three questions relating to frequency of participation in social and leisure activities, one question asking if the person has a best friend, one question asking if the person participates in leisure activities alone or with others, and one question about level of independence for managing personal finances. The CIQ is one of the most widely used and recommended measures of outcome following TBI34, 35. It was developed to be included in a minimum data set used in ongoing follow-up of individuals with TBI within the TBI Model Systems Database in the USA and, as such, to be fairly brief and reliable for use in telephone follow-up. The developers acknowledge that they therefore had to eliminate any questions relating to satisfaction or psychological well-being as related to community integration33. However, there are limitations to the CIQ. The CIQ has a narrow scope36, 37 and has been criticized for not including subjective measures of community integration, such as satisfaction with participation38, 39. There is a potential ceiling effect for individuals with TBI living in the community40. It may not be sensitive enough to gains made in a post acute rehabilitation program37. There are some concerns relating to concurrent validity with other measures of social integration/social participation, such as the Social Integration scale of the Craig Handicap Assessment and Reporting Technique (CHART)33 and the Social Interaction component of the Functional Independence Measure (FIM)35. This may suggest that these different tools measure different aspects of social integration. The division of items between the three scales was questioned, and following factor analysis with a much larger sample size than had been used in the initial development of the CIQ, it was recommended that two items be eliminated and two others be moved from one subscale to another35. However, many researchers continue to use the original version, and it is the original version that is posted on website of the Center for Outcomes in Measurement in Brain Injury41, for use by clinicians and researchers. Some recent studies have used the original version36, 42, whereas other studies have used a revised version37,  43 , although these studies did not make clear as to what exactly this 142       version consisted of. This study used the original version. For this research study, the CIQ was not used as the primary measure of social participation. However, to allow for results to be compared with those of other studies, it was determined that a consistent measurement tool needed to be used. Permission is required to use this questionnaire for research purposes, and was provided by Dr. Barry Willer for our research project. Psychometrics and use with individuals with TBI: The CIQ has demonstrated modest inter-correlations between subscales44, 45, moderate inter-rater reliability between individuals with TBI and their caregivers46, face validity47 and concurrent validity with other TBI measures of functional outcome33, 47, 48. The CIQ has been found to be sensitive to issues experienced by individuals with TBI35. Social Provisions Scale (SPS)49  Time to complete: 5 to 10 minutes. Description: This self-report questionnaire focuses on the degree to which a person perceives his/her social relationships as providing different dimensions of social support. The focus of the SPS is on perceived support and not the actual numbers of individuals in a person’s support network. The SPS has 24 items. Half of the items describe the presence of a type of support, and the other items describe the absence of a type of support49. Each item is rated on a scale of 1 (strongly disagree) to 4 (strongly agree). A total score is calculated by first reversing the negatively worded items, and summing all items. The total score ranges from 24 to 96; the higher the score, the greater degree of perceived support. Psychometrics and use with individuals with TBI: A confirmatory factor analysis was conducted on a sample of college students, teachers and nurses and confirmed that the measures of individual social provisions form separate but highly correlated factors49. The items adequately represented the five constructs they were designed to assess (attachment, social integration, reassurance of worth, reliable alliance, guidance and opportunity for nurturance), with item loadings ranging from 0.39 to 0.7949. The inter-correlations between each of the factors ranged from r=0.55 to r=0.99)49. Confirmatory factor analysis was also conduced on a group of community residents aged 65 or older, and found four (and not five) scales: intimacy, social integration, reassurance of worth, and opportunity for nurturance, with alphas ranging from 0.93 to 0.9450. In a study of individuals with TBI (former rehabilitation inpatients), the Cronbach’s alpha was 0.8143.  143       For a study involving individuals with TBI, internal consistency was found to be generally low, ranging from 0.20 to 0.75, and therefore subscale scores were not used in that study’s analysis43. We were unable to find any studies addressing test-retest reliability. Support has been provided for construct validity49. Discriminant validity has been shown for a group of college students, with evidence of (a) convergent validity in comparing the results of the SPS with other measures of social support, with correlations varying from r=.035 to r=0.46, and (b) evidence of divergent validity in comparing the SPS with measures of conceptually distinct constructs (e.g. social desirability, personality, depression, number of stressful events), with correlations varying from -0.28 to 0.0349. Hierarchical multiple regression analysis then confirmed that, in considering all of the nonsocial provision variables together, they accounted for only 14.3% of the variance in social provision scores, and that the SPS is related to the other measures of social support over and above the non-social support other variables49. Convergent and divergent validity was also shown for a group of older adults50. Concurrent validity has been found in comparing the SPS with the Sense of Support Scale with a group of corporate and university employees, r=0.7251. Adult Subjective Assessment of Participation (ASAP)52  Time to complete: 30 minutes. Description: This self-report questionnaire examines level of participation in different life occupations or situations outside of work and basic self-care. This is a recently developed measure and to date has been used for research purposes. The ASAP consists of 43 activities, grouped into seven activity categories: taking care of family and home, entertainment/recreation, activities with children, educational and enrichment activities, physical activities and sport, self care and care of others, and quiet activities. The ASAP has seven activity categories, but only those categories that represent social participation were used: learning and applying knowledge, and the three recreation and leisure categories, entertainment/recreation, physical activities and sport, and quiet activities. For this study, an additional activity category was added, religion and spirituality. The five activity categories that were used contain 37 social participation activities. There is a score for each of seven scales. The outcome is a participation profile for each individual, revealing various patterns of social participation. The subject first selects all activities that they have performed within the previous four months, thus providing for a measure of diversity. They then rate their participation for each activity 144        selected, using six additional scales. The scales and scoring for each are as follows: Diversity: maximum 100%, representing percentage of activities in which an individual participates. Frequency/intensity: scale varies from ‘once or twice in the last four months’ (score 1) to ‘several times per day’ (score 7). The total score (maximum 7) is the calculated mean rating for all activities in which an individual participates. Enjoyment: scale varies from ‘not enjoying it at all’ (score 1) to ‘enjoying it very much’ (score 6); total score, maximum 6, is again the mean rating. Satisfaction with performance: scale varies from ‘very much unsatisfied’ (score 1) to ‘very much satisfied’ (score 6). The total score, maximum 6, is again the mean rating. Level of assistance: score for each option is 1 for ‘full assistance’, 2 for ‘partial assistance’, 3 for ‘no assistance’. The total score, maximum 3, is the mean rating. With whom the individual participates: A total score is calculated by determining the percentage of activities performed with others, in proportion to the total activities in which the individual participates. Where the individual participates: A total score is calculated by determining the percentage of activities performed outside of the home, in proportion to the total activities in which the individual participates. Psychometrics and use with individuals with TBI: The ASAP has been found to have good reliability and validity, using four groups of individuals: individuals with mental illness, individuals with orthopaedic upper limb injuries, older adults, and a healthy control group52. Factor analysis, using principle components analysis with varimax rotation, confirmed the seven factors (activity categories). Shopping was found to be a factor on its own, and was therefore merged with the category ‘taking care of family and home’. There was good test-retest reliability for the frequency/intensity scores on all but two of the items, with correlations varying from 0.55 to 1.0. There was evidence of construct (discriminant) validity. The ASAP was found to be sensitive to differences in participation levels between healthy control group and each of the other three groups. The ASAP was used in a recent study involving individuals with TBI and was found to discriminate between adults with TBI and adults without disability53. 145       Subjective Quality of Life (SQOL) Quality of Life and Health Questionnaire (QOLHQ)54, 55  Time to complete: 10 minutes. Description: This self-report scale covers subjective well-being as it relates to physical symptoms, outlook on life, daily activities, and a global rating of quality of life. The first score is the total for the first three items; each is scored using a 4-point scale from ‘none’ (e.g., ‘Emotions and outlook on life are rarely or never a problem’) to ‘severe’ (e.g., ‘Extremely disturbing problem...’). The second score is produced from the fourth item, the global rating of quality of life. This is a single item, 11-point scale, from 0, ‘Worse possible quality of life’, to 10, ‘Best possible quality of life’. Psychometrics and use with individuals with TBI: The validity of the QOLHQ has been tested with individuals with advanced cancer54. It was found that the sum of the first three items correlated with the global quality of life score (r=0.66 to 0.71). Convergent validity was demonstrated by comparing results of the QOLHQ with the results of an in-depth, standardized telephone interview (r=0.43 to 0.71). Specific to individuals with TBI, one study found the global appraisal item to have concurrent validity with moderate correlation with the Sickness Impact Profile (SIP), r=0.4656. The 136-item SIP, developed to measure health status for use in assessing effects of health care services (Gilson 1975) is frequently used to measure health-related quality of life of individuals with TBI57. The benefit of a single item measure over the SIP is the reduced burden (time required and mental fatigue) to the evaluee56. We are not aware of any reliability studies specific to the QOLHQ as a whole, or the single global appraisal item on its own.  Abdel-Khalek Happiness Scale (AKHS)58  Time to complete: less than 5 minutes. Description: The most common assessment technique for subjective well-being or SQOL has been identified as a single-occasion, self-report happiness scale59. The AKHS is a single-item, numerical appraisal of happiness58. The evaluee is asked, ‘Do you feel happy in general?’ and asked to circle a number along a horizontal line, from 0 (minimum happiness) to 10 (maximum happiness). Psychometrics and use with individuals with TBI: For a sample of university undergraduates, the AKHS was found to have good test-retest reliability over an interval of one week, r=0.8658. In the same study, the AKHS was found to have good concurrent validity (with the Oxford Happiness Inventory and the Satisfaction With Life Scale); good convergent validity (high and positive correlations with optimism, hope, 146        self-esteem, and positive affect); and adequate discriminant validity (significant and negative correlations with anxiety, pessimism, and negative affect). We are not aware of any studies having used this happiness scale with individuals with TBI. However, it appears to be simple to understand and take little time to complete, and with its good psychometric properties, a good measure of happiness for this population and our study. University of California at Los Angeles Loneliness Scale (UCLA-LS)60  Time to complete: 10 minutes Description: We used a 10-item version of the UCLA-LS61 instead of the full 20-item version. This self-report questionnaire is considered to focus on intimate and interpersonal loneliness62. Each item is rated on a 4-point scale, from ‘I never feel this way’ (1 point) to ‘I often feel this way’ (4 points). A total score is calculated by summing the ratings. The total score ranges from 10 to 40. Scores between 15 and 20 are considered a normal experience of loneliness and a score above 30 indicates that the individual is experiencing severe loneliness61. Psychometrics and use with individuals with TBI: The UCLA-LS has been found to have high internal consistency, with coefficient alpha of 0.9660. All items were found to have correlations with the total score of at least 0.5060. For a sample of university students, test-retest reliability was found to be high over a two-month interval, with a correlation of 0.7360. The UCLA-LS was found to have face validity, and concurrent validity in correlating scores of the UCLA-LS with self-descriptions of loneliness (r=0.79)60. Evidence of convergent validity was found in that (a) individuals with higher scores on the UCLA-LS were more likely to volunteer for a clinical discussion program for people who selfidentified themselves as lonely, than individuals who did not volunteer to participate in this program, and (b) individuals with higher scores of loneliness on the UCLA-LS had higher scores on measures of emotional correlates of loneliness, including feeling empty, awkward, restless, bored and shy60. To the best of our knowledge, the UCLA-LS has not been used in studies involving individuals with brain injury. However, a revised version was used with community-dwelling adults with intellectual disabilities in an investigation of the relationship between leisure activities, friendships and quality of life 63. 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Leisure activities, friendships, and quality of life of persons with intellectual disability: Foster homes vs. community residential settings. International Journal of Rehabilitation Research 2004;27:289-96.  152       Appendix D: Study-specific questionnaires  153       154       155       156       157       158       159       Appendix E: Missing data Measure  Missing data  Steps taken to deal with the missing data  Participant characteristics questionnaire  -7 subjects did not respond to the question relating to their monthly income, either because they did not know the information, or chose not to respond  -no action taken  Zung SelfRating Depression Scale (SRDS)  -11 subjects (3 in the BIDC group, 8 in the Comparison group) did not respond to item 6: “I still enjoy sex.”  -as per Shrive et al. ¹, each subject’s mean score was imputed in place of the missing response(s)  Frontal Systems Behavior Rating Scale (FrSBe)  -6 participants (2 in the BIDC and 4 in the Comparison group) did not respond to item 38: “Am interested in sex.”  -as per instruction manual ², a raw score of 1 was assigned to each of the missing responses.  -for the entire FrSBe, the responses for 1 participant (Comparison group) were considered to not be an accurate representation of his/ her behaviour, in comparing his/her responses to his/her observed behaviours. He/she chose to not ask a family member, caregiver or friend to assist. For all other situations where the assessor had any concern about the accuracy of the participant’s responses on the FrSBe, there was a family member or caregiver present who was able to contribute to the response.  -one participant was removed from the descriptive analysis of FrSBe scores (correlational study and comparison study)  -one of these 11 subjects (from the Comparison group) also did not answer the items: “I have crying spells or feel like it” and “I feel that others would be better off if I were dead”  160       References (Appendix E) [1]  Shrive FM, Stuart H, Quan H, Ghali WA. Dealing with missing data in a multi-question depression scale: A comparison of imputation methods. BMC Medical Research Methodology 2006;6:57-66.  [2]  Grace M, Malloy PF. Frontal Systems Behavior Scale professional manual. Lutz, Florida: Psychological Assessment Resources Inc.; 2001.  161       Appendix F: Linearity (applicable to correlational study) Social participation  Subjective quality of life Global rating of QOL (QOLHQ)  Happiness (AKHS)  Loneliness (UCLA-LS)  General social integration (CIQ-SI)  R² Quadratic = 0.145 R² Linear = 0.145 Perceived social supports (SPS)  R² Quadratic = 0.269 R² Linear = 0.266 Statistically significant correlations (p<0.01) are shaded in grey  162       Social participation  Subjective quality of life Global rating of QOL (QOLHQ)  Happiness (AKHS)  Loneliness (UCLA-LS)  Diversity of activities (ASAP)  Frequency/ intensity (ASAP)  Statistically significant correlations (p<0.01) are shaded in grey  163       Social participation  Subjective quality of life Global rating of QOL (QOLHQ)  Happiness (AKHS)  Loneliness (UCLA-LS)  Enjoyment (ASAP)  R² Quadratic = 0.189 R² Linear = 0.189  R² Quadratic = 0.308 R² Linear = 0.302  R² Quadratic = 0.205 R² Linear = 0.18  R² Quadratic = 0.323 R² Linear = 0.309  Satisfaction with performance (ASAP)  Statistically significant correlations (p<0.01) are shaded in grey  164       Social participation  Subjective quality of life Global rating of QOL (QOLHQ)  Happiness (AKHS)  Loneliness (UCLA-LS)  Where: proportion of activities away from home (ASAP)  With whom: proportion of activities with others (ASAP)  R² Quadratic = 0.147 R² Linear = 0.141  R² Quadratic = 0.192 R² Linear = 0.165  Statistically significant correlations (p<0.01) are shaded in grey  165       Appendix G: Comparison study – sample size testing  Sample size testing was conducted using information from the Community Integration Questionnaire (CIQ) because this was the only measure (out of all of the social participation and subjective quality of life instruments) that had sufficient information available in the literature e.g., mean scores and standard deviations. As a result of sample size testing1, it was decided to recruit 25 individuals for each group (BIDC group and Comparison group). We were successful in recruiting 23 participants for each group. 1. Cicerone (2004)2, intensive cognitive rehabilitation program for community-dwelling adults with TBI, intervention group (pre and post test, CIQ social integration scale):    Sample Size Input: Expected Average1  7.0  Expected Average2  8.6  Std Dev 1; Tolerance  2.3  Std Dev 2  1.8  Alloc Ratio  1.00  RESULTS for double sided pow er 0.6 0.7 0.8 -----------------------------------------------0.1 13 17 22 0.05 18 22 27 0.01 28 34 41 0.001 44 51 59 alpha  RESULTS for single sided pow er 0.6 0.7 0.8 -----------------------------------------------0.1 9 12 16 0.05 13 17 22 0.01 24 28 35 0.001 40 46 54  0.9 29 36 51 72  alpha  0.9 22 29 45 66  optimum allocation ratio equals: 0.78  Continuity Correction Help Sample Size This procedure by SISA, 1989,1997.  166       2. Douglas (2006)3: community leisure activities group (pre and post for ‘sustained activities’ group, using CIQ social integration scale):  Sample Size  cleared RESULTS for double sided pow er 0.6 0.7 0.8 -----------------------------------------------0.1 9 12 15 0.05 13 16 20 0.01 21 24 29 0.001 32 37 43 alpha  Input: Expected Average1  7.2  Expected Average2  9.3  Std Dev 1; Tolerance  2.6  Std Dev 2  1.9  Alloc Ratio  1.00  RESULTS for single sided pow er 0.6 0.7 0.8 -----------------------------------------------0.1 6 8 11 0.05 9 12 15 0.01 17 20 25 0.001 29 33 38  0.9 21 26 36 51  alpha  Continuity Correction  0.9 16 21 32 47  optimum allocation ratio equals: 0.73  Help Sample Size This procedure by SISA, 1989,1997.  167       3. Geurtsen (2008)4, residential brain injury program, pre and post test, using full CIQ:  Sample Size  cleared RESULTS for double sided pow er 0.6 0.7 0.8 -----------------------------------------------0.1 16 20 26 0.05 21 26 33 0.01 34 41 50 0.001 54 62 72 alpha  Input: Expected Average1  14.0  Expected Average2  17.2  Std Dev 1; Tolerance  3.9  Std Dev 2  5.2  Alloc Ratio  1.00  RESULTS for single sided pow er 0.6 0.7 0.8 -----------------------------------------------0.1 10 14 19 0.05 16 20 26 0.01 29 35 43 0.001 48 56 66  0.9 36 44 62 88  alpha  Continuity Correction  0.9 27 36 54 80  optimum allocation ratio equals: 1.33  Help Sample Size This procedure by SISA, 1989,1997.  168       References (Appendix G) [1]  Sample size testing was conducted using the calculator available at: http://www.quantitativeskills.com/sisa/calculations/samsize.htm (accessed November 19, 2008)  [2]  Cicerone KD, Mott T, Azulay J, Friel JC. Community integration and satisfaction with functioning after intensive cognitive rehabilitation for traumatic brain injury. Archives of Physical Medicine and Rehabilitation 2004;85:943-50  [3]  Douglas JM, Dyson M, Foreman P. Increasing leisure activity following severe traumatic brain injury: Does it make a difference? Brain Impairment 2006;7:107-18  [4]  Geurtsen GJ, Martina, JD, Van Heugten, CM, Geurts, ACH. A prospective study to evaluate a new residential community reintegration programme for severe chronic brain injury: The Brain Integration Programme. Brain Injury 2008;22: 545-554.  169    

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