Community Participation After Spinal Cord Injury

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Community Participation After Spinal Cord Injury Christine Carpenter, PhD, Susan J. Forwell, PhD, Lyn E. Jongbloed, PhD, Catherine L. Backman, PhD ABSTRACT. Carpenter C, Forwell SJ, Jongbloed LE, Backman CL. Community participation after spinal cord injury. Arch Phys Med Rehabil 2007;88:427-33. Objectives: To describe participation among a communitybased sample of adults with spinal cord injury (SCI) and to explore the relationship between participation and life satisfaction. Design: Survey. Setting: Community. Participants: A sample of 357 people (response rate, 44%) with SCI recruited through the British Columbia Paraplegic Association. The mean age ⫾ standard deviation was 46.0⫾14.7 years, mean time since SCI was 13.0⫾11.0 years, and 68% of the respondents were men. Interventions: Not applicable. Main Outcome Measures: Descriptive survey data on community participation specifically related to social involvement, physical activity and relationship with others, transportation, and community access. Life satisfaction and happiness assessed using the Satisfaction With Life Scale and Happiness Scale. Results: No limitations to participation were experienced by 18.5% of the respondents. Satisfaction with transportation was associated with owning one’s own vehicle (P⬍.001). There was overall satisfaction with access to community buildings (mean score range, 6.9 – 8.5; where 10 is most satisfied). Being physically active was important to a majority and 75% were currently engaged in physical activity. Those living alone were less satisfied (mean, 7.3⫾2.7; where 10 is most satisfied) with the support they received than those living with others (8.5⫾1.7). Respondents were generally happy (5.0⫾1.4) and satisfied with life (18.6⫾7.6). Conclusions: This study provides a rich description of the multifaceted nature of participation and its association with life satisfaction as identified by people with SCI living in the community. Key Words: Patient participation; Patient satisfaction; Rehabilitation; Spinal cord injuries. © 2007 by the American Congress of Rehabilitation Medicine and the American Academy of Physical Medicine and Rehabilitation

Department of Physiotherapy and Dietetics, Faculty of Health and Life Sciences, Coventry University, Coventry, UK (Carpenter); and School of Occupational Therapy, Department of Rehabilitation Sciences, Faculty of Medicine, University of British Columbia, Vancouver, BC, Canada (Forwell, Jongbloed, Backman). Supported by the Rick Hansen Man-in-Motion Foundation ⫺ BC Neurotrauma Initiative Community grant. No commercial party having a direct financial interest in the results of the research supporting this article has or will confer a benefit upon the author(s) or upon any organization with which the author(s) is/are associated. Correspondence to Christine Carpenter, PhD, Dept of Physiotherapy and Dietetics, Faculty of Health and Life Sciences, Coventry University, Priory St, Coventry, CV1 5FB UK, e-mail: [email protected]. Reprints are not available from the author. 0003-9993/07/8804-11009$32.00/0 doi:10.1016/j.apmr.2006.12.043

HE INTERNATIONAL CLASSIFICATION of Functioning, T Disability and Health (ICF) identifies a number of domains that exemplify the multifaceted nature of participation: learning and applying knowledge, general tasks and demands, communication, mobility, self-care, domestic life, interpersonal interactions and relationships, major life areas, and community, social and civic life.1,2 The ICF definition of participation incorporates the concept of “involvement,” which can mean taking part, being included or engaged in an area of life, being accepted, or having access to needed resources.1 The impact of personal factors, such as individual interests and lifestyles, are recognized but no attempt is made to classify them.1 Community reintegration is a similar construct to participation as defined by the ICF.1,2 It can be defined as the process of becoming part of the mainstream of family and community life, participating in normal roles and responsibilities, and being an active and contributing member of one’s social groups and society as a whole.3 Research studies investigating the multifaceted nature of participation after the onset of disability have, not surprisingly, tended to use different methodologic approaches and outcome measures and to focus on the influence of environmental factors4; for example, social attitudes, architectural characteristics, or legal and social structures,2(p10) on participation or specific domains of participation; for example, vocational and leisure,4 life habits,5 and physical activity.6,7 As a result, it has been difficult to systematically analyze or synthesize participation study results. Noreau and Fougeyrollas, for the purposes of their study, broadly conceptualized participation in terms of life habits which they defined as the “activities of daily living and social roles recognized by the socio-cultural milieu and normally attributed to [persons in their] life context.”5(p173) They identified 3 most disrupted life habits in relation to the consequences of spinal cord injury (SCI): residence maintenance, participation in occupational (family roles, domestic tasks, employment) and recreational (attending cultural events, sports, fitness, games) activities. The least disrupted life habits were identified as verbal communicating skills, making friends, and maintaining an emotional relationship with family. They concluded that the quality of an individual’s environment (eg, climate, accessibility, labor market, social support) and level of injury appear to significantly influence their ability to maintain their life habits. Greater life satisfaction has been documented when people with SCI were involved in productive activities, such as work, leisure, and education8 and is associated with community reintegration.9,10 Schonherr et al11 found that, in general, persons with SCI were satisfied with their lives but when reduced quality of life was identified it was particularly related to unsatisfactory work and leisure situations. Krause12 reported a study that used the Life Situation Questionnaire–Revised to identify the dimensions of subjective well-being after SCI. These were engagement, negative affect, health problems, career opportunities, living circumstances, and interpersonal relations. An active engagement in life appeared to be most central to the subjective well-being. Cushman and Scherer,8 in a study of people 2 years post-SCI, contend that perception of life Arch Phys Med Rehabil Vol 88, April 2007

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events (not their character or number) is most closely linked to the subjective experience of a successful life. Research studies involving disabled athletes or people engaging in sport activities as part of a rehabilitation program indicated the benefits of sports particularly as a therapeutic tool in rehabilitation programs.6,13,14 The impact of participation in recreation and sports, however, on the part of those people with an SCI who are not athletes has not been well researched.7,15 Some researchers have explored the less tangible psychologic and social benefits of participation in regular physical activity.16-19 These findings suggest that these benefits take the form of renewed self-esteem and a belief in individual ability as well as enhanced social interactions. The aims of this report were to provide a rich description of the respondents’ experiences of community participation specifically in the domains of social involvement, physical activity, and relationships with others; to identify the influence on participation of transportation issues and community access; to discuss the factors that facilitate or constrain community participation; and finally to relate participation to life satisfaction and happiness. METHODS The information about community participation presented in this report was obtained in the context of a 2-phase needs assessment study involving adults with SCI and undertaken in collaboration with a community-based advocacy and service organization, the British Columbia Paraplegic Association (BCPA).20 The first phase was a qualitative study focused on describing and evaluating the community services provided by the BCPA and on determining the community rehabilitation priorities of consumers living with SCI.21 The second phase explored these priorities with a larger sample using a community-based survey, henceforth referred to as the BCPA survey. Approval was obtained from the Behavioral Research Ethics Board at the University of British Columbia. It became clear during the data analysis process that issues related to community participation were of critical importance to the BCPA survey respondents as evidenced by the details provided in their responses to many of the questions. It is this information that is presented in this study. Because the primary purpose of the original study was to investigate health and community reintegration needs and priorities, however, participation was not the primary predetermined construct. BCPA Survey Design We designed a self-report, mail survey, with item generation based on the results of the qualitative study21 and in consultation with consumer representatives. Questions were designed to explore respondents’ experiences in 10 priority areas: employment, social activities, computer use, transportation and community access, physical activity, accessing information and resources, home support services, relationships with others, access to professional services, and life satisfaction. The importance of these areas was measured using a 1 to 10 scale (with 10 being very important). Demographic data were also collected. Items were a mix of forced response (from a list of options), yes-no, numeric scales, and open-ended questions. After field testing the questionnaire with a group of 32 people with SCI, minor changes were made to improve clarity. The final questionnaire consisted of 84 items and took 45 to 60 minutes to complete. The questionnaire is available from the authors on request. This report focuses on the results related to community participation among people with SCI. Arch Phys Med Rehabil Vol 88, April 2007

Relevant BCPA Survey Content A number of open-ended questions specifically explored the impact of personal factors on participation (appendix 1). Openended questions were used because available scales did not adequately address the themes arising from phase 1 of this study and more descriptive data was desirable to explore the concept.21 Participation domains included social involvement (questions 12–15), physical activity (questions 29 –32), relationships with others (questions 42–51), transportation (questions 22–25), and community access factors (questions 26 –28). Two brief measures—the 5-item Satisfaction With Life Scale (SWLS)22 and the 4-item Happiness Scale23 were selected to measure life satisfaction. SWLS scores may range from 5 to 35 and Happiness Scale scores from 1 to 7, with higher scores indicating greater satisfaction or happiness. Factors, such as a person’s attitude or general satisfaction with life are identified in the ICF as part of the larger context of health that has an impact on participation.1 With this in mind the responses to the open-ended questions of participants with higher life satisfaction (top quartile of SWLS scores) were compared with the responses of those reporting the lowest life satisfaction (bottom quartile of SWLS). Demographic questions ascertained age, sex, time since injury, educational attainment, household composition (marital status, children and adults at home), household income, and health region of residence (using first 3 digits of the postal code). Because of the self-report nature of the survey, it was not possible to obtain medical verification or to use the American Spinal Injury Association classification to determine the level of injury. Instead, participants were identified as having tetraplegia or paraplegia based on an interpretation of their responses to questions about level of injury, sensation, and use of muscles below the level of injury, and mobility and ability to feed independently. BCPA Survey Implementation We mailed surveys to all persons in the BCPA database who were identified as “disabled” (N⫽914). Reminder postcards were sent at 2 and 4 weeks. Instructions included an offer to complete the survey via telephone interview for those who had difficulty with writing or who preferred that option. Data Analysis Numeric data were entered into a desktop statistical programa and descriptive statistics generated. Chi-square tests, t tests, and 1-way analysis of variance were used to compare subgroups based on selected demographic characteristics, such as sex or level of injury. Histograms indicated approximate normal distribution for SWLS and Happiness Scale data in support of parametric statistics. Correlation coefficients and linear regression analyses were used to identify factors associated with life satisfaction. Responses to open-ended questions were predominantly in the form of phrases, sentences or paragraphs, and some required only 1 response and were therefore suitable for frequency counts. These responses were compiled verbatim as lists and re-read several times by the first author. Phrases or words reflecting information or ideas related to the question topic were highlighted and sorted into categories representing common concepts, for example, descriptors of assistance received from family or friends. These descriptors were then reduced to 3 to 5 main themes for each topic area. RESULTS Surveys were mailed to 914 addresses; 104 were returned as undeliverable, leaving 810 as the target group and 371 were returned. There was no way, in advance, of determining the

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nature of the disability of the BCPA members who were sent the questionnaire. Some respondents indicated that they did not have an SCI, so those questionnaires were excluded, as were those that were blank, spoiled, or incomplete (n⫽46). After we included the pilot test respondents (n⫽32), 357 surveys were available (response rate, 43%) for analysis. For a typical forced response questionnaire item, less than 2% of responses were missing, and there were rarely more than 6% of responses missing for any one item. Respondent Profile Respondents ranged in age from 17 to 98 years, with an average age ⫾ standard deviation (SD) of 46.0⫾14.7 years. They had been living with SCI for an average of 13⫾11 years (range, 1–52y). Forty-eight percent lived in a spousal relationship and 31% never married. Twenty-six percent gave responses consistent with having complete tetraplegia, 40% complete paraplegia, and 30% incomplete lesions. We were unable to determine the level of injury for 4% of respondents. Respondents represented all 5 health regions in the province of British Columbia in approximate proportion to the population for each region. Participation in Social Activities Participants were asked to give examples of activities that were typical of their social life (question 12). The majority responded with 3 examples. The most common activities were visiting and going out with family members or friends (71%), attending social gatherings and events (37%), engaging in physical activity (36%), volunteer work (16%), and going to the movies or theater (14%). Other valued activities included shopping (6%), raising children (6%), fishing (4%), traveling (4%), using the computer and accessing the Internet (4%), reading (4%), and listening to and playing music (3%). Approximately two thirds of the respondents described one or more factors that supported participation in their chosen activities (question 13) and the main themes were: ● ●

help and support from family members and friends (35%); transportation, such as availability and/or scheduling of publicly funded transportation options (the transit authority’s HandyDART nonprofit service for people with disabilities), use of Skytrain (a light rail system in the greater Vancouver area), and ability to drive their own vehicle (22%); ● adapted and special equipment, such as power wheelchair, adapted golf cart, tractor or big tire chairs for access to forests and beaches (20%); and ● clubs and advocacy organizations, such as BCPA and the BC Wheelchair Sports Association (7%). Approximately two thirds of the respondents documented several special activities they would like to participate in if they could (question 14). These responses clearly reflected some very personal and individual interests (or wishes), for example, flying model airplanes, picking berries, using a playground swing, and having a one-night stand. The majority of the responses, however, focused on: (1) physical activity, fitness, and sports (including sailing, kayaking, dancing, pool, tennis, horseback riding, hand cycling, wheelchair basketball, swimming) (52%); and (2) attending more social events including theater, movies, concerts, sporting events, and dining out in restaurants (18%). No limitations to participation were experienced by 18.5% of the respondents (question 15). For the remaining respondents, 5 primary themes emerged (unrelated responses, 5.5%):

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(1) poor health, not feeling well and complications related to pain, incontinence, aging, poor bladder and bowel management, and fatigue (23%); (2) physical limitations, such as paralysis, poor balance, unable to get out of wheelchair, unable to walk or stand, inadequate strength or endurance, and special needs requirements (22%); (3) accessibility issues particularly related to parks, beaches, stairs, absence of ramps, accessible washrooms, and parking (11%); (4) lack of money and funding issues (10%); and (5) transportation issues, such as no accessible buses, problems with HandyDART, no vehicle, and lack of driver’s license (10%). Physical Activities Being physically active was important (question 29), with an average rating ⫾ SD of 7.9⫾2.6, and 75% of the respondents were currently engaged in physical activity. The most frequently reported physical activities (question 30) were doing one’s own exercise routine (67%), breathing and relaxation exercises (49%), weight training (45%), swimming (28%), long distance wheeling (19%), playing sports (18%), and arm ergometry (11%). Eighty-six percent of the respondents reported participating in a diversity of “other activities.” These included a myriad of sports both outdoor (eg, fishing, kayaking, hand cycling, skidooing, scuba diving) and indoor (eg, Pilates, yoga, curling, Tai Chi) activities, as well as exercises (eg, walking, stretching, standing frame, aquafit/pool), and activities at home (eg, gardening, playing with children, stacking firewood, woodworking) and in the community (eg, shopping and physical work). Of those people who responded to the question, 56% used a gym or community facility for at least one physical activity. Nine percent of respondents indicated that nothing limited their participation in the physical and fitness activities of their choice (question 31). Fifty-two percent, however, indicated that the level of their SCI was a limiting factor and 17% stated that pain limited their participation. Respondents’ suggestions about what would support engagement in physical activities (question 32), primarily focused on: (1) accessibility and availability of fitness facilities and gyms in their communities (14%); (2) availability of exercise equipment in facilities and funding to purchase equipment for use at home (9%); and (3) availability of a fitness trainer to advise on appropriate exercise choice and progression (4%). Relationships With Others On average, respondents were satisfied with the support they receive from others (question 47), with a mean rating of 8.1⫾2.2. It should be noted, however, that 15% do not have someone with whom to share their joys and achievements (question 42), 25% do not have someone to share decision making (question 43), and 8% do not have someone they could ask for assistance when required (question 44). A higher proportion of respondents who lived alone noted the lack of someone to rely on for support and those living alone were less satisfied with support from others (mean, 7.3⫾2.7) than those who lived with others (mean, 8.5⫾1.7; P⬍.001). The person providing emotional and moral support (question 45) was most frequently a spouse (33%). Fifty-two percent of respondents had a pet or service animal (questions 50, 51) and were very satisfied with their pet(s) as a source of companionship (mean satisfaction rating, 8.4). For the 27% of respondents who wished to have a pet but did not, the main reasons were restrictions on pets in their apartment or condominium, not Arch Phys Med Rehabil Vol 88, April 2007

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Table 1: Satisfaction With Primary Transportation by Main Mode of Transportation Main Form of Transportation

Drive own car Walk or wheel Public bus Public HandyDART Taxi Friend or family drives Other All categories combined, except drive own car Overall

N

Mean Satisfaction Rating*

180 25 23 13 2 47 8

8.8⫾2.0 6.3⫾3.0 6.2⫾2.6 6.2⫾2.4 8.5⫾0.7 7.2⫾2.7 6.5⫾3.4

118 298

6.7⫾2.9 7.8⫾2.6

*Values are mean ⫾ SD. Range is 1 to 10, with 10 being very satisfied.

being able to provide pet care, and having inadequate time, space or money for a pet. Transportation and Community Access Satisfaction with their main form of transportation (question 22) was clearly enhanced by owning a vehicle (table 1). A 1-way analysis of variance (ANOVA) showed that the differences in mean satisfaction ratings for types of transportation are statistically significant (main effect for form of transportation on satisfaction with transportation, F⫽12.9, P⬍.001). Collapsing these data into 2 groups, the difference in mean satisfaction with transportation between those who drive their own vehicle (mean, 8.8) and those who are non-vehicle owners (mean, 6.7) was statistically significant (t⫽⫺7.2, P⬍.001). Respondents who drove their own vehicles indicated that monitoring of disabled parking places (50%), availability of full service gas stations (36%), and more convenient disabled parking (33%) would improve their satisfaction with transportation (question 25). Some respondents indicated that no improvement was required (32%). Non-vehicle owners selected increased availability of HandyDART (38%), more convenient

bus routes and stops (30%), as well as availability and close monitoring of disabled parking places (32%). Overall, respondents were satisfied with access to many community buildings (question 26), with relatively high mean satisfaction with access ratings, and even higher medians (table 2). Among the lowest rated accessible buildings were hotels and motels, swimming pools and fitness centers and gyms. Respondents (n⫽329) identified one thing that they would change to improve accessibility of public spaces (question 28) and 2 main themes emerged from these responses: (1) accessibility issues, which included access to washrooms, beaches and trails, swimming pools, and public marinas, and the need for ramps, automatic doors, lower elevator buttons, wider doors, maintained sidewalks, wider aisles in shops, and more space in offices (67%); and (2) availability of designated parking for people with disabilities, including: larger spaces for vans, parking closer to the buildings they wished to enter, and covered parking (25%). Satisfaction With Life and Happiness The mean SWLS score ⫾ SD was 18.6⫾7.6 and mean Happiness Scale score was 5.0⫾1.4. Age was not associated with life satisfaction or happiness. Using a 1-way ANOVA, no relationship between level of injury and mean ratings of life satisfaction (F⫽1.0, P⫽0.4) or happiness scores (F⫽0.9, P⫽0.4) was shown. In this analysis, level of injury was a categorical variable: complete tetraplegia, complete paraplegia, and walkers. Duration of SCI showed a modest, significant, positive association with life satisfaction, but was not associated with happiness. Satisfaction with social support was significantly associated with both life satisfaction (r⫽0.4, P⬍.001) and happiness (r⫽0.5, P⬍.001). Household income had a significant effect on SWLS scores, with higher income categories reporting greater life satisfaction (F⫽7.5, P⬍.001) but income did not affect Happiness Scale scores. Impact of Level of Life Satisfaction on Participation Responses to the open-ended questions of participants reporting higher life satisfaction (top quartile of SWLS scores) were compared with the responses of those reporting the lowest

Table 2: Satisfaction With Access to Selected Community Buildings and Ease of Access to the Services Within That Venue Ease of Access to Services†

Satisfaction With Building Access* Venue

N‡

Median

Mean

SD

N‡

Median

Mean

SD

Grocery store Bank Doctor’s office Hospital Community center Fitness center or gym Swimming pool Library Theatre Schools or colleges Place of worship Restaurants, coffee shop Government offices Malls, stores Hotels, motels

318 319 334 316 213 168 158 237 248 180 123 287 245 287 185

9.0 9.0 8.0 9.0 8.0 8.0 8.0 9.0 8.0 8.0 8.0 7.0 8.0 8.0 7.0

8.5 8.3 7.4 8.3 8.0 6.9 7.0 8.1 7.5 7.7 7.6 7.2 7.2 8.0 6.4

1.7 2.0 2.7 2.2 2.0 2.9 3.0 2.0 2.4 2.2 2.6 2.2 2.5 2.0 2.6

309 315 326 319 199 163 151 226 241 171 114 279 229 284 177

8.0 8.0 8.0 9.0 8.0 7.0 8.0 8.0 8.0 8.0 8.0 8.0 8.0 8.0 7.0

7.6 7.9 7.3 8.0 7.8 6.7 7.0 8.2 7.3 7.8 8.0 7.4 7.4 7.7 6.4

2.2 2.3 2.7 2.3 2.2 2.8 2.8 1.8 2.3 2.0 2.2 2.2 2.4 2.2 2.6

*Range is 1 to 10, with 10 being very satisfied. † Range is 1 to 10, with 10 being very easy. ‡ Not everyone wished to access or use all buildings and services listed.

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life satisfaction (bottom quartile of SWLS). Both groups responded in similar numbers and identified similar patterns of participation. Activities and socializing with family members, however, were cited nearly twice as much by the high life satisfaction group. For both groups activities typical of their social life and involvement with others in their home or community included volunteering in the community and involvement with church, visiting and involvement with friends (as opposed to family), organizing friends and family social events, and participation in fitness and sport activity. The high life satisfaction group cited volunteering as an important activity approximately 4 times more than the less satisfied group, however, and church involvement twice as much. It appears from the responses of the high life satisfaction group that, in comparison with the least satisfied group, they are more likely to own their own vehicle and see external factors like accessibility to community buildings and washrooms as the main limiting factor to their participation. In contrast, twice as many of the less satisfied group cited the consequences and complications of SCI and funding as the primary limiting factors. DISCUSSION The BCPA is 1 of 10 provincial divisions of the Canadian Paraplegic Association. The consultation process with the BCPA board of directors and consumers living with SCI, and the findings of earlier focus group study that were used to inform the BCPA survey design are strengths of the overall study and the nature of the questions asked. This report has described participation (the domains of social involvement, physical activities and relationship with others, and influencing factors, such as transportation and community access) from the perspective of a large group of BCPA members with SCI living throughout British Columbia. Involvement in social activities was primarily characterized by the respondents’ satisfaction with the support they receive from family members and friends and this support was significantly identified with both life satisfaction and happiness. The negative impact of not having people to socialize with and rely on for assistance, however, is reflected in the relatively large proportion of respondents who identified that they did not have anyone to share their joys and achievements, and decision making, or to ask for assistance when required. Given the challenges of living with an SCI, isolation from family and lack of supportive relationships clearly makes it difficult for these people to fully engage in community participation. Factors associated with social support and strategies that enhance and promote community inclusion are rarely the focus of research5 or follow-up by multidisciplinary rehabilitation teams.10 Peer support programs, linking people with recent SCI with others who have more experience of managing SCI over time, are being increasingly implemented with the aim of facilitating participation after SCI. Program evaluation research is needed to determine if such programs can fulfill that aim. No research was found linking life satisfaction or participation after SCI with the companionship and nurturing of pets or the contribution made by service animals. Pets, however, for more than half the respondents, were an important source of companionship and a positive influence in their lives. More consistent inclusion of this topic in designing research studies may be useful in the ongoing discussion of participation and quality of life after an SCI. People with SCI typically identify transportation and accessibility (eg, public buildings) among the primary environmental barriers they encounter.4,24 The availability of scheduled and accessible public transportation, and in particular, the ability to drive one’s own vehicle were identified as facilitating

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social activity and participation. Conversely, transportation problems, largely associated with not having a vehicle and inadequate public services, were identified as limiting participation. Geographic location was not a factor influencing satisfaction with the main form of transportation despite the differences in provision and nature of public services that exist between smaller towns and more rural areas and the larger urban areas in British Columbia. Overall respondents were satisfied with access to many public buildings in their communities. Interestingly, there was no significant difference between levels of satisfaction and people with different levels of function with the exception of access to hotels and motels, which were rated lowest along with swimming pools and fitness clubs or gyms. Whiteneck et al4 similarly found that environmental factors were not critical determinants of societal participation (compared with personal factors, impairments, and activity limitations) but were more strongly related to life satisfaction. The contribution of recreational and sports activities to community participation have been less rigorously studied.14,15,25 Accessibility and availability of fitness facilities, exercise equipment and expert resources in the community were identified as strategies that would support participation in physical activity and these would be particularly relevant for those with higher levels of SCI. Not surprisingly, exercise and sports have been shown to benefit the health of people with disabilities, for example, decreasing secondary health complications and hospitalization, improving cardiorespiratory function and physical independence,7,19,26 and less tangible psychologic and social benefits.16,17 A majority of the respondents, however, were limited in their ability to participate in these activities by pain and the level of SCI. It is often assumed that long-term SCI has a negative impact on quality of life. Studies have reported a lack or only a weak association, however, between impairment severity resulting from SCI and perceptions of life satisfaction and wellbeing.11,27-32 Our findings support this research with regard to level of injury and it is of interest that respondents who identified that they could walk did not report higher SWLS or Happiness Scale. Household income had a significant effect on life satisfaction but not happiness, with higher incomes reporting greater life satisfaction. A small proportion of the respondents in this study identified lack of income as a primary barrier to social participation. Many people with SCI require personal (eg, attendant care, homemakers, home adaptations) and technologic (eg, technical aids and equipment and vehicle adaptations) supports in order to participate in valued roles and engage in social and physical activities. Such support requires considerable funding and the amount needed can vary greatly depending on the nature and cause of the SCI.33 In this study, participation in social and physical activities was found to be facilitated by environmental factors; however, participants also experienced activity limitations related to their SCIs. The literature on the ICF frequently states that the constructs of activity and participation are blurred. In our study it was clear that activity and participation were distinct domains; and this concurs with the findings of other authors.34 The study findings highlighted how important environmental factors are in facilitating or hindering participation thereby supporting a central thesis of the ICF. The ICF lists a number of environmental factors but gives no indication of the interaction among these factors or between aspects of the environment and the person.35 Thus our understanding of how, and under what circumstances, environmental factors influence participation is not well developed. Participants in other phases of Arch Phys Med Rehabil Vol 88, April 2007

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this research clearly described how social policies adversely affected their ability to participate, identified the need for social policy reform and ranked lobbying for policy changes, in particular related to funding, as among the highest priorities for the BCPA to address. Social policies constitute an important environmental factor influencing participation, but applications of the ICF in social policy analysis require rigorous research.36 Study Limitations The larger study was designed to investigate the health and community reintegration needs and priorities of people living with SCI of which participation is a component. Participation was, however, not the primary construct investigated and therefore no specific standardized measure was developed or used to specifically assess participation. The information provides an in-depth description of community participation but the lack of standardized measures makes it difficult to compare the results with those of previous research. Nevertheless, these descriptive data may contribute to refining existing measures or designing new measures of participation relevant to persons living with SCI. The BCPA membership database (predominantly composed of people with SCI) was used to identify potential study participants. The original study design proposed a random sample of adults with SCI (diagnostic codes 344 or 806 of the International Classification of Diseases, Ninth Revision), selected through the Ministry of Health database(s). Access to such a sample could not be attained within a reasonable time frame, however. Approximately one third of British Columbians living with SCI in the BCPA database and just under half of those contacted responded to the BCPA survey. This suggests a potential selection bias but the demographic data do not indicate that we missed any particular segment of the target population. We cannot claim that a representative sample of persons with SCI living in British Columbia was studied, however, and this sample may over-represent people eager to assist the BCPA, or those who have specific complaints about services. We did not follow up on the nonrespondents so we are unable to make comparisons between the profiles of those that responded to the survey and those that did not. CONCLUSIONS Participation is essentially a unique individual response to the integration of environmental, personal, and cultural factors with the reality of living with a disability. There are a growing number of literature references37,38 addressing issues of participation over the continuum of a person’s life rather than solely in terms of rehabilitation outcomes and community reintegration immediately postinjury. The results discussed in this article support previous research4 indicating that life satisfaction is more strongly related to community participation than impairment and activity limitations. It is our hope that the insights about community participation gained from the BCPA survey results will contribute to the growing body of research on participation after SCI and be of interest to those who are involved in SCI and community rehabilitation. Acknowledgments: We thank the members of the Rehabilitation Committee of the Board of the BCPA who initiated and supported the research: Bert Forman, MSW (director of rehabilitation services, BCPA), Barb Parson (chair), Robb Dunfield, Jean Hobbs, Gordon Hogg, Dennis Magrega, Lisa Schultz, Claire Weeks, MD, and Peter Wing, MD. Vivian Lee capably assisted with participant recruitment, and research assistants Marilyn Borougian and Cory Anderson attended to numerous details in support of the project. Arch Phys Med Rehabil Vol 88, April 2007

APPENDIX 1: SURVEY QUESTIONS RELATED TO PARTICIPATION Section about social activities and community participation—things that contribute to leading a full and productive life beyond work 12. What three activities, other than work, are most typical of your social life and your involvement with others in your home or in your community? 13. Is there anything in particular that helps you participate in the three activities you listed above? 14. Are there social activities you would like to do, but you are currently unable to do? 15. What limits your involvement in the activities you listed above? Section about transportation and accessibility in your community 22. What is the main way you get around your community on a daily basis, that is, to get to work, appointments, shopping, school and the like? Check one main one. (List of seven options including “other” provided) 23. How satisfied are you with your main form of transportation? 25. What would improve your satisfaction with your transportation arrangements? Check all that apply. 26. How satisfied are you with access to each of the following buildings in your community (Don’t use it option plus scale 1–10 not at all satisfied – very satisfied). Eleven options provided plus “other buildings important to you.” 27. Once in the building, how easy is it for you to access the actual services within that building? (Same options and scale as #26.) 28. What one thing would you change to improve the accessibility of public spaces in your community? Section about physical activities and fitness 29. How important is it to you to be physically active or participate in fitness activity? (Scale 1–10 not at all important – very important.) 30. Check all fitness activities that you participate (ten options provided including “other” and “I do not participate”) also asked to indicate — tick box — whether the activity is related to “at home” or “at gym or community facility.” 31. Does anything limit your participation in fitness activities? (Three options plus specify “another reason” provided.) 32. What one thing would support or improve your participation in fitness and physical activities? Section about relationships with others 42. Is there anyone with whom you share your joys and accomplishments? 43. Is there someone who helps you make decisions or solve problems? 44. Is there someone you can call on when you need assistance? 45. Who is the main person who provides you with support? (List of seven options including “at this time, I am unable to identify anyone.”)

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46. 47. 48. 51.

APPENDIX 1: SURVEY QUESTIONS RELATED TO PARTICIPATION (cont’d) Who are the additional people who provide you with support? (Same options.) People contribute to a sense of well-being. In general, how satisfied are you with the level of support provided by the people in your life? (Scale 1–10.) Do you have any pets or service animals? (Yes/No and what sorts of pets?) Is there anything else you think we should know about social or emotional support?

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