Priority Issues for British Columbians Living with Spinal Cord Injury

Catherine Backman, Susan Forwell, Christine Carpenter and Lyn Jongbloed

Abstract

The British Columbia Paraplegic Association wished to ascertain the needs and expectations of its constituents in order to guide the organization's future advocacy and rehabilitation activities. This study identifies the priority needs of individuals with spinal cord injury living in communities in British Columbia. A questionnaire was designed in consultation with an advisory committee and people with SCI, based on results from an earlier focus group study. All 12 community service needs surveyed were endorsed by varying proportions of the 357 respondents. The three most frequently cited priorities were to lobby for better home support services (endorsed by 43%), lobby for equitable income policies (38%), and educate employers (34%). Priorities differed based on gender, years living with SCI, functional classification, household income, employment status and vehicle ownership. The priorities identified by study respondents may be shared by others with disabilities and need to be addressed by advocacy organizations and service providers.

Introduction

Community-based services for people with disabilities may be provided by a number of health and social service agencies. Non-profit societies addressing the needs of individuals with specific disabilities or health conditions are prevalent in Western society, frequently created by consumers to fill perceived gaps in services for a specific target population. The British Columbia Paraplegic Association (BCPA) is a non-profit organization established in 1957, with a specific mission to assist persons with spinal cord injuries and other physical disabilities to achieve independence, self-reliance and full community participation. The BCPA sought a research partnership to evaluate whether or not its activities were addressing the needs and priorities of its constituents, especially in light of competing priorities and changes in health care and social service sectors. This paper reports on a survey designed to identify the community-based service priorities of British Columbians living with SCI, and ascertain whether or not the priorities differed based on demographic characteristics.

Literature Review

Previous studies have examined several aspects of perceived needs of individuals with SCI related to reintegration to the community following rehabilitation, and explored relationships among services or characteristics of living arrangements and quality of life. It is assumed that if needs are met, quality of life will be enhanced. In a study of quality of life and social support among 125 persons with SCI, Anson, Stanwyck and Krause (1993) note that those who received support from and contributed back to their community perceived themselves to be better adapted to living with SCI and reported significantly fewer health problems than those who believed they received less support. In a pilot study (n=22) of individuals with newly acquired SCI, Cushman and Scherer (2002), found that the most frequently reported perceived needs were related to personal care (44%), transportation (44%), assistive technology (35%) and work/education (35%). Social and leisure activities and sexual counseling were priorities to lesser numbers of participants.

In a study based in the Netherlands, availability and satisfaction with services were explored with 318 community-living adults with SCI (Post, van Asbeck, van Dijk & Schrijver, 1997). While satisfaction with availability of community services was high, it was low for actual delivery of services, because of delays or refusal for services when they were requested (Post, van Asbeck, van Dijk & Schrijver, 1997). The level of satisfaction of availability of service was not associated with type of SCI, age, education or income, indicating that no sub-set of respondents (based on these characteristics) were having different experiences than the group as a whole.

Much of the SCI research agenda has been determined by those with a vested interest in a particular area of expertise and rarely based on meaningful consumer input (Weaver, et al, 2001). Hammell (2004) critiques the status of quality of life research, and recommends greater attention to research that will influence public policy and community planning. "Commitment to reducing, for example, pain, spasticity, pressure sores and respiratory problems... should be matched by a commitment to reducing, for example, nursing home admissions, occupational deprivation, inadequate access to health care and poverty" (p. 498). Disability is part of the continuum of an individual's life and as such it is a dynamic construct changing over time and intimately involving others in the experience (Carpenter, 1994; DeLateur, 1997).

Different consumers will have different needs, and health and community service needs are likely to change across the life span. For example, it has been reported that women are less likely than men to be employed after SCI and less likely to be independent with regard to transportation within their community (Pentland, Walker, Minnes, Tremblay, Brouwer & Gould, 2002), which may subsequently lead to different priorities for services than those desired by men. Women with SCI have experienced barriers in accessing health care, particularly primary and preventive services (McColl, Charlifue, Savic & Meehan, 2002), finding answers about menopause and SCI, (Pentland, Walker, Minnes, Tremblay, Brouwer & Gould, 2002) and how to deal with the physical effects of aging and health risks for stroke, arthritis and osteoporosis (Pentland, Walker, Minnes, Tremblay, Brouwer & Gould, 2002; McColl, Charlifue, Savic & Meehan, 2002). Women with SCI want strategies and resources to access assistive technology, flexible attendant care, community centers and health service providers (Pentland, Walker, Minnes, Tremblay, Brouwer & Gould, 2002). Age is also associated with different needs: Krause (1998) reported an association between older age at time of SCI and lower subjective well-being, poorer health and less active lifestyle.

Context for the Present Study

There is a need to more actively engage with consumers in identifying gaps in services to ensure their recovery from injury and facilitate full participation in life. In an earlier qualitative study using focus groups to gather data primarily from persons with SCI, their family members, and personal care attendants, Carpenter and Forman (2004) found that many needs remain unmet. Ten themes emerged from that study, as relevant to individuals living in the community after SCI. This focus group study was the first phase of an anticipated step-by-step initiative of the BCPA, aimed at advancing the organization's mission to ensure self-reliance and full community participation. It was expected that activities would unfold over time, each step based upon the findings of the previous step(s). This paper presents the second step of the project, further exploring 12 specific needs arising from the 10 major themes identified in the focus group study (see list in Table 1). It should be noted that the needs are diverse and include advocacy, education, and community resources and services. When referring to this list of needs as a whole, we use the term community services. Resolving any one of these needs has the potential to enhance the quality of life for at least some people living with the consequences of SCI.

Purpose of the Study

The purpose of the present study was to verify and prioritize the community service needs identified by the focus groups with a larger sample, and to determine if needs varied for sub-groups of the sample based on selected demographic characteristics. It was hypothesized that individual circumstances would influence perceived needs, and that if priorities differed based on specific characteristics, this would help to target services to those who most need or want them. Identifying priorities that support people and potentially enable them to fully participate in the community will guide not only the future activities of the BCPA, but other community advocacy and service organizations with similar goals.

Method

A cross-sectional survey was conducted using a self-report, mailed questionnaire. The study was approved by the Behavioral Research Ethics Board of the University of British Columbia.

Participant Recruitment

The BCPA database was used to identify participants. The data base is predominantly comprised of individuals with SCI, although its listings include non-disabled members (e.g., family members, health professionals) and individuals with disabilities other than SCI (e.g., spinal bifida, cerebral palsy). While the database indicates whether or not a member has a disability, it does not indicate if it is a SCI. There were 970 people with a disability listed in the database, all of whom were invited to participate in the survey. To be eligible for inclusion in the current analysis, participants were adults 18 years of age and older, had sustained a spinal cord injury, and were residing in British Columbia communities. Those who had disabilities other than SCI, resided in a hospital or institutional setting, or were unable to respond to an English survey were excluded. For those unable to complete a pencil/paper self-report questionnaire, a telephone interview was offered.

Questionnaire

A systematic approach to questionnaire design was followed, including item generation, selection, and pilot testing (Streiner & Norman, 1995). The questionnaire was designed in consultation with the Rehabilitation Advisory Committee of the BCPA to ensure content was relevant to the organization, and with consumers living with SCI to ensure items were relevant to and easily understood by study participants. The Advisory Committee includes members with SCI, physicians and health professionals, and BCPA staff. Item selection was based on consensus among the authors, BCPA Rehabilitation Committee, and consumer consultants to ensure comprehensive coverage of the key issues of interest, as well as clarity.

The broad issues identified in the focus group study formed the basis for questions. Basing questions on the 2001 focus group findings (Carpenter & Forman, 2004) ensured the topics were derived from the "grass roots," that is, people genuinely interested in and grappling with issues related to living successfully in the community after SCI. The topic areas were employment, social activities and community participation, computer use, transportation and community accessibility, physical activity and fitness, accessing information and resources on SCI, home support services, social relationships, and access to professional services. Each topic was explored with forced-response questions (yes/no, nominal categories, or 10-point scales), or open-ended questions, and each topic concluded with an open-ended question to elicit personal experiences and additional information about that topic. Respondents were then asked to select the three most important issues from the list of 12 needs identified in the earlier study (Table 1, column 2). Demographic characteristics included age, gender, year of injury, level of injury, and four functional items regarding sensation, movement, mobility and feeding (with or without assistive devices). Geographic location of residence was determined based on the first three digits of respondents' postal code.

The questionnaire was pilot tested with 32 individuals with SCI, and only minor revisions were made to improve clarity. The final questionnaire, administered over several months in 2004, contained 84 questions and took 45 to 60 minutes to complete.

Procedures

The surveys were mailed to the 970 individuals with disabilities in the BCPA data base, and followed up with reminder post cards sent two and four weeks after the initial mailing to encourage response. As a small incentive to participate, all survey packets included a $10 grocery store gift card, and stamped return envelope.

Data Analysis

Data were entered into a desktop statistical program (SPSS version 12) and descriptive statistics generated. Priorities were ranked according to the proportion of respondents who endorsed each need as being, in their opinion, one of the three most important needs requiring the attention of BCPA or similar organizations. Pearson Chi square analyses were used to determine if priorities differed based on demographic characteristics: age, gender, geographic region, household income, type of SCI, duration of SCI, employment status, use of home support services, vehicle (car or van) ownership, and living alone or with others. Alpha of 0.05 was used to judge a significant difference. The data described in this paper are limited to the analyses of priority needs. The detailed analysis of other sections of the questionnaire (exploring employment, social participation, computer use, transportation and accessibility, home support services, and professional services) will be described elsewhere.

Results

Sample

Of the 970 questionnaires mailed, 128 were returned as undeliverable, leaving 842 as the target group. Three hundred and eighty surveys (48%) were returned, and 27 were not eligible for this analysis because the individuals identified disabilities caused by conditions other than SCI. Nineteen were incomplete, blank or spoiled, leaving 357 for data entry, a response rate of 44%. Not all respondents answered every question, and missing data were coded as such. For the majority of questions less than 2% of responses were missing, and for cross-tabulations complete information was available for more than 95% of respondents.

Respondents

Participants ranged in age from 17 to 98 years (mean = 46, SD = 14.7), and sustained their spinal cord injury 1 to 52 years ago (mean = 13, SD = 11.1). On average, the men were older than the women (47.4 years compared to 43.8 years, p = 0.04). The difference in duration of SCI between men and women was not statistically significant. Characteristics of study respondents are listed in Table 2. There are 5 geographical health regions in BC, and based on postal codes, the distribution of respondents was similar to that of the general population (BC Stats, 2001).

Because of the self-report nature of the survey, it was not possible to obtain medical verification of the nature and level of injury. Instead, participants were classified into three groups based on interpretation of their responses to questions about level of injury, sensation and use of muscles below the level of injury, mobility, and ability to feed themselves independently: complete tetraplegia (n=92), complete paraplegia (n=142), or incomplete lesions and able to walk, with or without assistive devices ("walkers," n=108). A small proportion of respondents were judged to have high level lesions, because the majority of respondents (n=337, 94%) stated they were able to feed themselves independently.

Over half the respondents (53%) had attained some education beyond high school or completed a post-secondary diploma or degree prior to their SCI, which is partly influenced by age at time of injury. Approximately 20% of the respondents had increased their level of education subsequent to SCI, and at the time of survey completion, 71% of respondents had some post-secondary education or higher, compared to 63% of the general adult population in BC (BC Stats, 2001).

Just under one-third of respondents reported an annual household income of $20,000 or less, while another 30% indicated between $20,000 and $40,000. This distribution indicates lower incomes among study participants compared to annual household incomes among BC households as reported in the 2001 Census (BC Stats, 2001).

Community Service Priorities

Three hundred and fifty respondents (98%) completed the priority-setting exercise. All twelve of the community service priority needs ranked within the three most important issues for some respondents (Figure 1). The priorities endorsed by the greatest proportion of respondents related to lobbying the government for home support and equitable income policies, as well as educating employers and health care providers. Because it was anticipated that priorities would differ depending on individual circumstances, sub-group analyses were conducted.

Priorities for Men and Women

A higher proportion of men selected "lobby government for fair income policies" than did women (43% and 26%, respectively, Chi square = 11.54, p = .009), whereas a higher proportion of women selected "improve access to public spaces" than did men (36% and 21%, respectively, Chi square = 11.19, p = .01). "Networking with others with SCI" was endorsed as a priority by 18% of women compared to 10% of men (Chi square = 6.54, p = .09). None of the other priorities were notably different between men and women, nor were they statistically significant.

Priorities and SCI Functional Classification

The most frequently endorsed priorities for people with tetraplegia and paraplegia were identical and were the same as the sample as a whole. While the ranking was slightly different, "walkers" also selected the same top three priorities. There were three significant differences in priorities: Lobbying for flexible home support policies was endorsed by more people with tetraplegia (53%) than paraplegia (43%) or those able to walk (34%; Chi square = 10.3, p=0.02). Improving transportation was similarly a priority for more people with tetraplegia (33%) than those with paraplegia (23%) or "walkers" (11%; Chi square = 14.4, p=0.002). The third difference was the need to educate health care providers about caring for people with SCI, which was highly ranked by more "walkers" (29%) than those with paraplegia (27%) or tetraplegia (22%; Chi Square = 7.91, p=0.05).

Priorities and Duration of SCI

There were several significant differences in the ranking of priorities based on duration of spinal cord injury, as illustrated in Table 3.

Priorities and Annual Household Income

Due to the small proportion of respondents in the higher income groups, two income groups were used for this analysis: annual household income $40,000 or less (n=218, 65%) and over $40,000 (n=128, 36%). Five priorities differed based on income group, noted in Table 4.

Priorities and Use of Home Support Services

Based on the earlier focus group study it was apparent that home support issues were hugely important to those who were dependent on these services. Of survey respondents, 273 (76%) use at least one home support service, such as personal care attendants or homemaking services. Their priorities were compared to those who do not use home support services, and there were statistically significant differences in the proportion of each group endorsing three issues. A higher proportion of home support users (48%) endorsed lobbying for flexible home support policies than did non-users (30%) (Chi square=8.75, p=0.003). Educating employers was the highest ranking need among non-users of home support, endorsed by 45% compared to 31% of home support users (Chi square=5.89, p=0.02). And reliable, accurate information about SCI was endorsed by 23% of home support users and 36% of non-users (Chi square=5.07, p=0.02). The remaining differences were not statistically significant.

Priorities and Vehicle Ownership

A large proportion of respondents (52%) drive their own vehicle as their main form of transportation, while the others use a variety of other modes. Three of the needs differed between vehicle owners/drivers and non-owners. Improving transportation was endorsed as an important priority by 33% of the non-owners compared to 12% of vehicle owners (Chi square = 21.3, p < 0.001); it was the third most frequently endorsed priority among non-owners, and ranked 11th for vehicle owners. Lobbying for home support was the top ranked priority for non-owners, endorsed by 52%, while it was ranked second for vehicle owners, endorsed by 37% (Chi square = 8.6, p = 0.003). The proportion endorsing lobbying for equitable income policies was 34% for vehicle owners and 45% for non-owners (Chi square = 4.51, p = 0.03).

Priorities and Employment Status

Of those who completed the priority setting exercise, 111 were employed and 239 were not. Educating employers was the only significantly different priority, endorsed by 42% of the employed sub-group compared to 31% of those not employed (Chi square = 4.68, p = 0.03).

Discussion

Participants were asked to identify the three most important priorities from a list of 12 generated by the earlier focus group study (Carpenter & Forman, 2004). Twelve percent or more of survey participants endorsed each of the twelve priorities. This is important information for the BCPA and similar organizations when planning services - all community service areas are important to some constituents. The most frequently endorsed needs are "big picture" issues that are difficult for individuals to address on their own, and provide clear direction to consumer-driven organizations.

Issues of Concern to People with Disabilities

Based on a comprehensive federal report on disability (Social Development Canada, 2001), people with other disabilities or chronic conditions share many of the needs identified in the present study of adults with SCI. In the federal report, six topics were identified as important to advancing inclusion of people with disabilities: disability supports, skills development and learning, employment, income, capacity of the disability community, and health and well-being. Disability supports include personal help with everyday activities, such as home support workers. Thus, the priority needs identified in the present study (related to home support, income policies, and employment) are consistent with the findings of this federal initiative, as well as a previous pilot study of persons with SCI (Cushman & Scherer, 2002). These top three issues of home support policies, income policies and employment issues will be discussed in turn.

Home Support Policies

The need to lobby governments for more flexible policies for funding home support services was the top ranked issue for our survey respondents. In BC, home support is typically provided by health authorities or private agencies, and people are assessed to determine eligibility and hours of help. Eligibility criteria include income and severity of the disability. Over the past decade, home support services have been cut, creating a gap between what people need and what they receive. The focus is on practical issues such as eating and bathing, or medical needs, and not on issues such as social inclusion or facilitating employment. Yet social issues, including income and employment, are primary health determinants, and home support is integrally linked to social participation in the community.

A provincial demonstration program provides home support funds to disabled individuals, enabling them to create and manage care to meet their specific needs, such as hiring and scheduling personal care attendants. This is a step in the right direction, because it allows for greater choice, flexibility and control for individuals with disabilities. However, the program is not available to all, is not portable across health regions and does not allow for the hiring of a trusted friend or family member to provide personal care. Instead, the system assigns an agency home support worker. A self-managed attendant services program has been implemented in Ontario serving 691 participants with an additional 300 applications pending (Yoshida, Willi, Parker & Lockner, 2006). The appeal of such a program is supported by the findings from the present survey, ranking flexible home support a high priority; the size of existing programs indicates there remains an unmet need. Designing a system of appropriate and effective home support funding remains an important and unresolved area to be considered by consumer advocacy organizations and agencies responsible for providing home support.

Income Policies

The second-ranked priority also focused on a need to lobby government, with regard to more equitable income policies. Recent history regarding income and employment policies (Boyce, Boyce & Krogh, 2006) provides important background for understanding this priority. After several improvements to policies related to people with disabilities in the 1980s there was a shift in the social and political climate in the 1990s toward increased valuing of economic growth and deficit reduction. There were massive cuts to income assistance, social assistance, employment insurance and disability pensions, and community-based employment training programs (Boyce, Boyce & Krogh, 2006). There is a further inequity in income assistance based on how the SCI was acquired. Injuries that result from motor vehicle or workplace accidents tend to have more generous compensation schemes than those acquired in a recreational accident, because of the automobile insurance or workers' compensation plan benefits. Insurers may limit or prohibit some services, for example, funding of specialized equipment to accommodate physical limitations for persons who are employed. There are disincentives to employment, such as risk of losing one's disability pension if an individual needs more than one attempt to re-enter the work force. Survey respondents in the present study gave detailed examples of the restrictive and complex nature of funding policies and it is not surprising that this issue was ranked as a high priority for advocacy organizations such as the BCPA. Interestingly, this priority was more highly ranked by men than women, which may reflect a predominant societal expectation that men are the primary wage earners in a household.

Employment Issues

The third most frequently endorsed priority related to the need to educate potential employers and co-workers regarding the skills and abilities of workers with SCI and the resources available for appropriate accommodations in the workplace that would facilitate job tasks or enhance the quality of the workplace experience for people with disabilities. Sub-group analyses demonstrated that this need to educate employers was endorsed by a larger proportion of respondents who had lived with SCI for longer duration compared to those more recently injured. Those individuals who are still adjusting to the major life changes associated with a recent SCI may be more concerned with rehabilitation, community living skills and completing their education, that is, pre-employment issues, than with educating employers and co-workers. It is not until 4 or more years after SCI that employment issues increase in importance, suggesting there may be an optimal time to introduce vocational counseling.

A potential barrier to implementing programs that address these top three priorities relates to cost. We hypothesize that educating employers and raising awareness regarding the abilities of workers with disabilities would be less costly than implementing changes to home support and income assistance policies. However, estimating the cost of each priority is complex and beyond the scope of this paper, but remains a goal for advancing the agenda to meet the needs of people living with SCI. Because home support, income support, and employment are issues that extend beyond people with SCI, there is likely a large benefit to be derived for people with any disability in addressing these important needs. Changes of this nature require political will, are influenced by how society values the groups of people affected, and require public support (Felske & Krassioukova-Enns, 2006; Jongbloed, 2006). In this regard, consumer-driven organizations like the BCPA may be able to influence public opinion and political agendas by partnering with other organizations in their lobbying efforts, thus advancing their organizational mission to serve the interests of their constituents.

Priorities Specific to People with SCI

Some study respondents found it difficult to find knowledgeable health care providers to address their ongoing health needs. Educating health care providers about SCI was in the top half of ranked priorities for all regions except Vancouver Coastal Health (VCH, data not shown) and is not surprising given that specialist services, tertiary and quaternary care facilities are located in VCH. The need for multi-disciplinary, specialized outreach services is consistent with an Australian study that proposed telephone consultation with experts as a means for providing consultation (Cox, Amsters & Pershouse, 2001). Telehealth, collaborative practice, and continuing education are examples of ways to link consumers and practitioners (in all health fields) to more specialized services and clinicians in major centers.

Policy Implications

The needs identified in this study cannot be adequately addressed by any one discipline, thus the findings have implications for interdisciplinary practice, advocacy, and research. Rehabilitation is neither complete nor successful if persons living with SCI are unable to have their home support needs met, live in poverty, or are excluded from employment opportunities. Although these were the top three priorities, all 12 issues were endorsed by a reasonable proportion of study respondents, indicating that much work remains to be done to foster full participation and inclusion in community activities taken for granted by those without disabilities. Future interdisciplinary research could, for example, evaluate demonstration programs that use alternative health and social policies to resolve inequities in home support and income assistance. The need to better educate employers about the skills and potential contribution of people with disabilities, and primary health care providers about the needs of people living with SCI each suggest that inter-professional rehabilitation teams with specialized knowledge should offer greater outreach services to ensure full community reintegration for people with SCI, and evaluate the effects of such services and programs. Based on this survey, many people with SCI are still struggling with fundamental issues preventing full participation in their communities, such as transportation. Advocacy organizations, researchers, and practitioners could more effectively support people with SCI by collaborating to study ways of resolving the barriers to a truly inclusive society. In fact, based on the priorities identified in the present study, the BCPA Board of Directors approved an advocacy strategy on community action, focused on six key areas: personal supports, housing, income support, employment and labour participation, transportation, and universal design. The implementation of this plan included hiring a community capacity coordinator to seek development opportunities and help influence policy at municipal, provincial and national levels. Further, the BCPA continues and is building upon its partnerships with other advocacy organizations to address specific issues relevant to particular sub-groups of its membership, such as the need for special equipment and assistive devices to foster independence.

Strengths and Limitations

A strength of the present study is that it was designed in close consultation with the end user of the results (BCPA) and with consumers living with SCI. Given previous findings that people with SCI who contribute to their community experience better health (Anson, Stanwyck & Krause, 1993), involving consumers as research collaborators is one way to foster full participation in community life.

A probable limitation of the study is a selection bias among study participants. Approximately one-third of British Columbians living with SCI were listed in the BCPA data base and due to privacy legislation it was not possible to identify the two-thirds who were not. Further, just under half of those contacted responded to the survey. The demographic data do not suggest that we missed any particular segment of the target population, nevertheless, a response bias may exist, such as over-representation of individuals eager to assist the BCPA, or those who have specific complaints.

Cross-sectional studies are inherently limited in their ability to assess cause and effect relationships and assumptions of this nature have been avoided. However, a cross-sectional approach is appropriate to a needs assessment, because it provides a snapshot of the issues that are important "here and now" and consequently can provide guidance for community service development.

Future Research

Subsequent research is required to develop and evaluate services that address the priorities identified by study participants. Given that all 12 priorities were endorsed by a portion of respondents, there are at least as many potential community services to research more thoroughly for their ability to improve community participation and quality of life. Such research needs to carefully consider individual characteristics and social factors when assessing the outcomes of community services, given that the present study found differences based on gender, years living with SCI, functional class, household income, employment status and vehicle ownership.

Conclusion

This cross-sectional study represents the perspective of 357 persons with spinal cord injury who completed a comprehensive survey, the purpose of which was to identify priority needs related to community services and the mission of a consumer advocacy organization. The priority setting exercise noted that all 12 areas studied are important to some people living with SCI, and that priorities differ depending on individual circumstances. The most frequently endorsed priorities relate to improving home support services, income assistance policies, and educating employers and health care providers. This list of priorities is a call for action to advocacy, health and social service organizations, and helps to identify specific target audiences who have the greatest need for each priority. This study, designed through consultation with consumers living with SCI, and a rehabilitation advisory committee to a non-profit organization aimed at promoting full participation in life, provides an example of a client-centred needs assessment.

References

Anson, C.A., Stanwyck, D., & Krause, J. (1993). Social support and health status in spinal cord injury. Paraplegia, 31, 632-638.

BC Stats. 2001 Census Profile: British Columbia. Retrieved April 01, 2005 from http://www.bcstats.gov.bc.ca

Boyce, W., Boyce, E., & Krogh, K. (2006) Income support and employment policy reforms in the early 1900s: Implications for people with disabilities and their organizations (pp. 254-266). In: McColl, M. & Jongbloed, L. (Eds.). Disability and social policy in Canada, (2nd ed.). Concord, ON: Captus Press.

Carpenter, C. (1994). The experience of spinal cord injury: The individual's perspective -implications for rehabilitation practice. Physical Therapy, 74 , 614-629.

Carpenter, C. & Forman B. (2004). Provision of community programs for clients with spinal cord injury: Use of qualitative research to evaluate the role of the British Columbia Paraplegic Association. Topics in Spinal Cord Injury Rehabilitation, 9(4) , 57-72.

Cox, R.J., Amsters, D.I., & Pershouse, K.J. (2001). The need for a multidisciplinary outreach service for people with spinal cord injury living in the community. Clinical Rehabilitation, 15 , 600-606.

Cushman, L.A., & Scherer M.J. (2002). A pilot study of perceived needs of persons with new spinal cord injury. Psychological Reports, 90, 1153-1160.

DeLateur, B. (1997). Quality of life: a patient-centered outcome. Archives of Physical Medicine & Rehabilitation, 78, 237-239.

Felske, A.W. & Krassioukova-Enns, O. (2006). Social change partnerships: Advocates, business and government (pp. 176-187). In: McColl, M. & Jongbloed, L. (Eds.). Disability and social policy in Canada, (2nd ed.). Concord, ON: Captus Press.

Hammell, K.W. (2004). Exploring quality of life following high spinal cord injury: A review and critique. Spinal Cord, 42, 491-502.

Jongbloed, L. (2006). Disability income and employment policies in Canada: Historical development (pp. 243-253). In: McColl, M. & Jongbloed, L. (Eds.). Disability and social policy in Canada, (2nd ed.). Concord, ON: Captus Press.

Krause, J.S. (1998). Aging and life adjustment after spinal cord injury. Spinal Cord, 36, 320-328.

McColl, M., Charlifue, S., Savic, G., & Meehan, M. (2002). International differences in aging and spinal cord injury. Spinal Cord, 40, 128-136.

Pentland, W., Walker, J., Minnes, P., Tremblay, M., Brouwer, B. & Gould, M. (2002). Women with spinal cord injury and the impact of aging. Spinal Cord 40,, 374-387.

Post, M.W., van Asbeck, F.W., van Dijk, A.J., & Schrijvers, A.J. (1997). Services for spinal cord injured: availability and satisfaction. Spinal Cord, 35, 109-115.

Social Development Canada. (2004). Advancing the inclusion of people with disabilities. Social Development Canada: Ottawa, ON.

Streiner, D.L., & Norman G.R. (1995). Health measurement scales: A practical guide to their development and use. (2nd ed.). Oxford University Press: Oxford.

Weaver, F.M., Guihan, M., Pape, T.L., Legro, M., LaVela, S., Collins, E., Langbein, W.E., & Goldstein, B. (2001). Creating a research agenda in SCI based on provider and consumer input. SCI Psychosocial Process, 14, 77-88.

Yoshida, K., Willi, V., Parker, I. & Lockner, D. (2006). The emergence of self-managed attendant services in Ontario (pp. 314-335). In: McColl, M. & Jongbloed, L. (Eds.). Disability and social policy in Canada, (2nd ed.). Concord, ON: Captus Press.


Table 1
Summary of themes from prior study* and list of needs evaluated in present survey

Focus Group Study Themes (areas for further study)

Needs arising from each theme (directives to BCPA and similar organizations)

Can't afford to work

Lobby government or policy-makers for equitable income policies for people with disabilities

Educate employers and co-workers about the employability of people with disabilities

Flexible home support is the key

Lobby government or policy-makers for changes in funding and management of home support services for people with disabilities

You've got to feel good about yourself

Enhance networking with others with SCI

Role of family and friends

Improve support and services for family and friends of persons with disabilities

Accessing information and resources

Improve availability of reliable, accurate and accessible information for persons with SCI

I'm tired of coming in the back door

Find ways to improve access to public spaces

Find ways to support persons with disabilities to participate in their communities

Transportation and parking

Find ways to improve transportation services for those with disabilities

Rehabilitation and medical services

Better educate health care providers about SCI

Keeping fit and staying healthy

Improve access to fitness facilities and availability of advice on physical fitness for persons with SCI

Computer technology

Improve access to computer technology, ongoing support and funding technology for people with SCI

           

 

* Cited from Carpenter & Forman, 2004.

  Words in bold indicate short labels for priorities.


Table 2
Participant Characteristics

Characteristic

n

%

range

mean

SD

Ages (yrs)

17-98

46

14.7

Years since SCI

1-52

13

11.1

Sex

Male

243

68

Female

103

29

Missing

11

3

Functional level of injury

Complete tetraplegia

92

26

Complete paraplegia

142

40

Incomplete SCI

108

30

Unable to verify*

15

4

* insufficient data provided, or missing data

           

 


Submitted by

Catherine L. Backman, PhD, OT(C), Susan J. Forwell, PhD, OT(C), Christine M. Carpenter, PhD, PT, and Lyn Jongbloed, PhD, OT(C)

Contact Information

Catherine Backman, Associate Professor, catherine.backman@ubc.ca

Susan Forwell, Senior Instructor, sue.forwell@ubc.ca

Lyn Jongbloed, Associate Professor, lyn.jongbloed@ubc.ca

From the Department of Occupational Science & Occupational Therapy, The University of British Columbia, T325-2211 Wesbrook Mall, Vancouver, BC, Canada, V6T 2B5 www.rehab.ubc.ca

Christine Carpenter, Senior Lecturer, c.carpenter@coventry.ac.uk Faculty of Health and Life Sciences, Coventry University, Coventry, CV1 5FB, UK.

Biographical Note

Catherine Backman is an occupational therapist and researcher interested in how people participate in everyday occupations. Susan Forwell is an occupational therapist and occupational scientist studying the impact of chronic neurological conditions and spinal cord injury on occupations. Lyn Jongbloed is an occupational therapist and researcher interested in health policy and its impact on occupation. Christine Carpenter is a physiotherapist and researcher interested in qualitative approaches to understanding health care and rehabilitation experiences of people living with spinal cord injury. Dr. Carpenter was at the University of British Columbia at the time this study was conducted.

Acknowledgements

This study was funded by a Rick Hansen Foundation BC Neurotrauma Initiative Community Grant to the BC Paraplegic Association.

The authors acknowledge the initiative of the BCPA Rehabilitation Advisory Committee: Bert Forman (Director of Rehabilitation, BCPA), Barb Parson (Chair), Robb Dunfield, Jean Hobbs, Gordon Hogg, Dennis Magrega, Lisa Schultz, Claire Weeks, and Peter Wing. Vivian Lee capably assisted with participant recruitment, and research assistants Marilyn Borougian and Cory Anderson attended to numerous details in support of the project.


 

International Journal of Disability, Community & Rehabilitation
Volume 6, No. 1
www.ijdcr.ca
ISSN 1703-3381