There is a fundamental belief among consumers with SCI that there needs to be a paradigm shift in the approach to rehabilitation from an institutionally based physical restoration model to a community-based independent living model (Rick Hansen SCI Network 2005). Going home is a frequent goal established by patients newly admitted to hospital and 79% of individuals with traumatic SCI injuries return home. Only 62% of individuals with complete tetraplegia return home with 15% discharged back to acute care and 18% to long term care (CIHI 2006a). In a study of high lesion SCI (C1-C4), it was found that 40% of these clients were discharged to extended care units post rehabilitation, while the majority of these respiratory dependent patients returned to the community (Anzai et al. 2006).
Life expectancy is less than normal, particularly for people with tetraplegia and who are ventilator-dependent (NSCISC 2008). The life expectancy of a 40 year old with paraplegia who has survived at least 1 year post-injury is 11 years less than a person without a SCI (NSCISC 2008). Although the mortality rate during the first 2 years after SCI has been reduced over the past 30 years, Strauss et al. (2006) noted that there has not been a substantial change in life expectancy following the second year post-injury. In contrast, there has been an increase in life expectancy over the last 2 decades in the general population. SCIRE’s review on aging after SCI examines the effect SCI has on bodily systems and addresses the hypothesis that SCI is a model of premature aging.
Given that the majority of traumatic SCI occur in young adults, return to work or school is of high importance, but often necessitates a change in vocation. Of the 30-50% of individuals that return to work after an SCI, less than 18% of those employed at the time of injury were able to return to the same job (CPA 1997). Within 3-6 months post inpatient rehabilitation, 14% of people with SCI are employed, while 64% were employed prior to injury. Approximately 9% are students (roughly double the pre-injury status). The majority are unemployed (26%) or on disability status (35%) at 3-6 months follow-up (CIHI 2006a). Canadians living with SCI tend to have a higher level of education than the general Canadian population (CPA 1997). In a survey of Canadians who had been injured at least 5 years, 62% were unemployed while 38% are employed (CPA 1997). Education is key to employment – higher education or increasing education following injury result in more success with employment. Of those who find employment, 44% do so within 2 years of injury while 77% find employment within 5 years (please see SCIRE’s work and employment section for more information on factors influencing return to work and employment post-SCI).
Accessible infrastructure and disability support are two major areas which people with SCI feel would improve quality of life (RHMIMF 2004). When considering priorities for research, individuals living with SCI rank finding a cure for SCI similarly to developing advances in rehabilitation/therapy (RHMIMF 2004). Regaining arm and hand function has been cited as one of the most important priorities among individuals with tetraplegia, while regaining sexual function has been cited as the highest priority for those with paraplegia (Anderson 2004). Improving bladder and bowel function was important to both injury groups (Anderson 2004). Although the majority of participants indicated that exercise was important to functional recovery, more than half did not have access to exercise (Anderson 2004). Anderson (2004) emphasized the need for researchers to be aware of the needs of SCI consumers in their quest for discovery.
The continuum of health care in the community includes mechanisms for people to access information resources about living with a SCI. In fact, Gontkovsky et al. (2007) found that individuals with an SCI had an interest in acquiring information about aging and current research. However, it appears that people with SCI do not approach traditional health care sources for their information (e.g., physician, hospital). For people living with SCI, the internet was by far the number one source for information about SCI (48%), while support groups and media ranked higher than hospitals, books, rehab centres, physicians and peers (RHMIMF 2004). It appears that the internet can be an ideal medium for promoting health-related education. To facilitate accessibility of information, the SCIRE information is available on CD, print version, as well as through web-access (www.scireproject.com).
In a recent survey, the majority (70%) of individuals with SCI rated the quality of life of people with SCI as good or very good while 23% rated it as poor or very poor (RHMIMF 2004). It is encouraging that 65% of individuals with SCI felt that the quality of life of people with SCI has improved over the past 5 years (RHMIMF 2004). As enhancing quality of life is an inherent goal of rehabilitation, there is a continual challenge to close the gap between treatment activities and functional competence in the individual’s actual environment.