Heterogeneity and Its Impact on Rehabilitation Outcomes and Interventions for Community Reintegration in People With Spinal Cord Injuries: An Integrative Review

We used an integrative review approach to conduct this study, which allowed us to present a comprehensive understanding of the problem to inform evidence-based practice for rehabilitation professionals working for people with SCIs.19 The steps followed for this integrative review are presented here:

1. Purpose identification. The purpose of this study was to find out how various attributes that make SCI population heterogeneous affect successful community reintegration of people with SCI in order to design appropriate rehabilitation interventions.

2. Literature search. We systematically searched MEDLINE, PubMed, CINAHL, EMBASE, Google Scholar, and PsycINFO to find pertinent studies that were published until May 2017. The search was updated on August 1, 2018. The terms used for literature search were a combination of medical subject headings and free text terms that included [spinal cord injur* OR quadriplegia OR paraplegia OR tetraplegia], AND [community reintegration OR participation OR social adjustment OR independent living] AND [rehabilitation]. These key words varied to some extent depending on the different indexing schemes of included bibliographic databases. We also searched reference lists of the key articles to identify articles that did not emerge in the initial database search. To be included in this study, studies had to focus on the impact of one or more of personal, injury-related, or socio-environmental attributes on outcomes related to community reintegration among the SCI population. Articles were included if they were empirical studies (ie, involving primary data and directly measuring the outcome of interest within the population of interest), secondary studies involving the analysis of primary research (ie, systematic or literature reviews), or discussion papers. The included studies could have a quantitative, qualitative, or mixed-method design. Apart from published research articles, we also included relevant books, book chapters, or research reports. Commentaries, letters to the editor, opinions, or media articles were excluded. Resources available in languages other than English were also excluded. The study selection process is shown in Figure 1. The first author (S.G.) performed the search and reviewed the titles and abstracts of the articles retrieved from the initial database search. Then, using the inclusion and exclusion criteria, full text of potentially relevant retrieved resources was reviewed by first and second authors (S.G., A.J.) to create the final pool of the articles. Any discrepancies were resolved by the senior authors (K.N., V.D.P.).

3. Data extraction and evaluation. The information extracted for data charting included author(s), year of publication, location, study design, study setting, sample size, population characteristics, level of evidence, factors looked at for their impact on community reintegration, and key outcomes or results. Data extraction was performed by two authors (S.G., A.J.).

4. Data analysis. Each of the included articles was reviewed according to the criteria for evidence-based medicine by Sackett and colleagues.20 Results were organized according to three categories of factors that have been shown to differentiate persons with SCI from one another: (1) injury-related, (2) personal, and (3) socio-environmental factors. For each of the factors, we identified subcategories of characteristics and the relationship of these characteristics to successful community reintegration. We also analyzed relevance of these findings to rehabilitation approaches directed at optimizing community reintegration of people with SCI.

5. Presentation. Data were organized under relevant themes and categories and presented in the form of tables and figures. Table 1 summarizes the characteristics and findings from the 49 individual studies. These studies are organized as per the level of evidence and then organized alphabetically. Table 2 summarizes the evidence on the relationship of various attributes that make the SCI population heterogeneous with rehabilitation outcomes related to community reintegration. Figure 2 depicts the synthesis in the form of a model that was developed to comprehensively portray the factors leading to heterogeneity in SCI and approaches to community reintegration.

A total of 670 resources were retrieved, out of which 49 articles presented evidence on impact of various attributes that make the SCI population heterogeneous on outcomes related to community reintegration. Of the 49 individual studies, 27 studies were quantitative, four were qualitative, six were mixed-method, and 12 were review articles (including systematic, scoping, critical, and clinical reviews). Of 27 quantitative studies, 11 were cross-sectional, 10 had prospective or longitudinal research designs, and six collected data retrospectively. The sample mostly included individuals with traumatic SCI, and sample size ranged from 1 to 2,839 participants. There were four studies that offered level 1 evidence (ie, systematic reviews), although no randomized controlled designs were found. Ten studies offered level 2 evidence (ie, longitudinal or prospective cohort studies), five studies provided level 3 evidence (retrospective studies), one study provided level 4 evidence (ie, retrospective chart review), and 14 provided level 5 evidence (ie, cross-sectional or observational studies and surveys). The rest of the included studies (n = 15) were qualitative or descriptive studies and were categorized under level 6 evidence.

• 1. Heterogeneity due to injury-related factors and its relevance to community reintegration

  • a)

    Cause. Cause of injury divides people with SCI into two groups: traumatic versus nontraumatic. Traumatic causes of injury commonly include motor vehicle accidents, falls, acts of violence, and sports-related activities. The most common nontraumatic causes include spinal degenerative disorders, spinal tumors, stenosis, infections, or other metastatic disorders.21,22 Injuries due to nontraumatic causes often lead to incomplete and thoracic level injuries whereas traumatic events lead to more severe injuries or multiple injuries.23,24 Whereas motor vehicle accidents remain the main cause of injury worldwide, the number of SCIs due to falls, spinal degenerative diseases, and infections is increasing.22,25 

    A large number of studies have examined the relationship between cause of injury and rehabilitation outcomes. A majority of the longitudinal studies found that among clinically similar patients matched for demographics, AIS, and level of injury, no significant differences were detected in the rehabilitation functional outcomes between persons with traumatic versus nontraumatic causes of injury, however long-term survival was significantly lower in persons having nontraumatic SCI.26–31 The occurrence of secondary health conditions that significantly affect quality of life and participation was also not different between persons with traumatic and persons with nontraumatic SCI.32 Within people affected by nontraumatic SCI, Kennedy and Hasson found in their retrospective study that people with an SCI caused by infection had the highest rehabilitation needs and poorer rehabilitation outcomes, particularly in physical health, activities of daily living, and bowel management, as compared to people with an SCI caused by spinal degenerative disorders.33 

  • b)

    Level and severity of injury. The involvement and completeness of neurological level of injury divide people with SCI into many diverse groups. For example, injuries involving high-cervical segments (C1-C4) are the most severe, if neurologically complete, leading to the paralysis of limbs and trunk where breathing is severely affected (ie, higher tetraplegia). In neurologically complete injuries at the thoracic, lumbar, or sacral regions, the muscles of the upper chest, abdomen, trunk, and legs are involved to varying degrees based on the nerve involvement, whereas upper limb and hand functions are usually preserved (ie, paraplegia). Distinct from the matter of neurological level, there is also the extent of neurological completeness to consider. Individuals may have complete injuries (loss of motor, sensory, and autonomic functions below the level of injury) or incomplete injuries (either or both motor and sensory functions are preserved below the neurological level of injury) to varying degrees.34 

    Evidence regarding the impact of level and severity of injury on community integration has been mixed. In a recent cross-sectional study, a higher level and more severe injury along with spasticity was related with more limitations on activity.35 These injury characteristics in turn were strongly related to the extent of medical complications associated with SCI.35 Mingaila and Krisciunas in their longitudinal study also found that during early phases of rehabilitation, the level of independence achieved for daily activities was much lower in patients with cervical level or complete injuries than in the patients having injury at thoracic-lumbar level or incomplete injuries.36 Barclay and associates found in their qualitative study that individuals with more severe or higher injuries were more reliant on others to assist them to get out of the house and to complete household tasks for them.37 A literature review also reported better outcomes related to return to work post SCI in those who had less severe injuries.38 Two other mixed-method studies also concluded that level of impairment or completeness of injury were most influential for community participation.39,40 However, a cross-sectional survey conducted with 216 adults found that level of injury was not associated with community integration,41 which was concurrent with another study that found that participation among adults with SCI was independent of level or completeness of injury.42 

  • c)

    Age at injury and duration of injury. Based on the heterogeneity in age at injury and duration or time since injury, individuals with SCI can be broadly classified into four categories: (a) younger with acute injury (ie, injured at a young age with a recent injury), (b) younger with chronic injury (ie, injured at a young age but sustaining SCI for a long duration), (c) older with acute injury (ie, incurred a recent SCI at an old age), and (iv) older with chronic injury (ie, incurred SCI at an old age and living with it for a long duration).43 However, it must be noted that these are arbitrary distinctions as literature does not provide a clear classification of the acute versus chronic injuries among younger and older adults. In a Canadian study, the age of people living with SCI varied between 18 to 90 years (mean age, 50 years), with duration of injury ranging between 1 to 81 years (mean duration, >18 years).44 

    Although the four subgroups based on age and duration are somewhat arbitrary, there is evidence that these subgroups have different rehabilitation needs and outcomes.9,45,46 Examining the effects of age at injury on rehabilitation outcomes related to independence, Scivoletto and colleagues in their matched cohort study found that younger patients showed better neurological recovery and hence a higher level of independence in bowel and bladder management and independent walking.47 Another quantitative study suggested that elderly patients with paraplegia were more likely to have a longer length of stay and lesser functional and neurological status gains than younger individuals with paraplegia and tetraplegia.48 El-Masry and Haboubi also reported in their clinical review that younger age at onset of injury and longer time since injury both appeared to be positively correlated with life adjustment, securing employment post injury, and overall social functioning.49 However, a cross-sectional study looking at life satisfaction among older adults with long-term SCI concluded that overall life satisfaction improves as one grows or lives longer with the injury.35 A few other cross-sectional studies also found no statistically significant positive relationship between age and time since injury with participation in activities42,50 or community reintegration.41 

• 2. Heterogeneity due to personal characteristics and its relevance to community reintegration

  • a)

    Demography. Age, gender, race, ethnicity, education, marital status, employment status, and income divide individuals with SCI into many subgroups. Large international epidemiological studies report that there is a bimodal distribution in the age of onset of SCI with a peak at ages 15 to 29, a relatively low distribution through middle age, and another peak at ages >65 years.5,25 The average age of SCI onset is increasing as the incidence of nontraumatic SCI increases with age.21,22,51,52 A study from the United States looking at the epidemiological trends of SCI over the last four decades reported that the incidence of SCI is higher for males than females regardless of age, although it reports an overall increasing trend of injury in females.51 

    A large number of studies have examined the effects of age on rehabilitation needs and outcomes for people with SCI.9,45,46,53 Some investigators suggest that a person with SCI experiences functional declines from aging that are superimposed on their disability.32,54 Krassioukov et al in their retrospective chart review (N = 58) found that older adults had more susceptibility toward having comorbidities, which also had an impact on their rehabilitation care pathways.55 Having higher income, employment and insurance coverage at the time of injury, and better education were reported as having positive effects on reintegration, especially on vocational gains after SCI.38,41,56 However, neither gender nor race were found to be significantly affecting rehabilitation outcomes such as discharge destination, rehabilitation length of stay, or functional status gains.48 

  • b)

    Physical or mental illness and other comorbidities. The presence or absence of physical or psychological comorbidities or secondary health conditions along with SCI make individuals with SCI diverse in terms of their overall health status, and hence this factor has a substantial effect on the rehabilitation gains or outcomes. For example, in their survey of persons with SCI (N = 2,839), Tonack et al reported that the presence of psychological and medical complications was related to decreased community participation and reintegration.57 Another systematic review reported that cognitive impairment was significantly predictive of poorer rehabilitation gains.58 Likewise, patients who experienced complications such as neuropathic and musculoskeletal pain, pressure ulcers, urinary tract infections, bowel problems, autonomic dysreflexia, and depression had higher rehabilitation needs.32 In a survey study (N = 73), Lundström et al reported that physical limitations such as pain, fatigue, and spasticity were the major reasons cited by the participants with SCI for not participating in active recreation.50 A mixed-method study also found that secondary health conditions and functional independence were independently associated with community participation.40 

  • c)

    Personal skills and attitude toward disability. As with any other group, people with SCI can vary in terms of their personal skills and perceptions and attitudes toward their disability.59 These differences may affect their overall adjustment with the injury and disability.60 A systematic review found that higher levels of self-efficacy and self-esteem were associated with higher well-being and better mental health, and spirituality and purpose in life were the potential determinants of adjustment outcomes in long-term SCI.61 Similarly, a cross-sectional study found that self-efficacy and self-esteem were significant predictors of participation of people living with SCI.42 Many other studies involving a diverse group of individuals (such as children, adolescents, veterans with SCI) identified self-efficacy beliefs, locus of control, and self-rated health as significant predictors of life satisfaction, community integration, and quality of life among people with SCI.16,41,62–64 

• 3. Heterogeneity due to socio-environmental factors and its relevance to community reintegration

  • a)

    Access to formal support. Among people with SCI, there is a spectrum with regard to access to resources and social support. At one end of the spectrum, a few have good access to resources and social support; at the other end, some have very limited access to income resources and have little or no social support at all. Based on the social welfare policies, the available funding or community resources vary from individual to individual and affect their access to rehabilitation and subsequently influence life-long outcomes.65 For instance, studies from Canada report that individuals who incur SCI at a workplace or as a result of motor vehicle accident often have work benefits or insurance benefits to fund the services of a physical therapist, occupational therapist, a nurse and/or counselor, a psychologist, or a social worker. However, individuals without these benefits have to rely on federal disability support and may face long waiting lists for provincially funded services; many times they are turned away from tertiary outpatient therapy services, with no financially feasible therapy alternative.66,67 Similarly, Australian studies found that participants who were in receipt of compensation were able to get the paid services or care they needed, whereas those without compensation had more limited access to care and assistance and were forced to rationalize how they used their limited resources.37,68 It is noteworthy that both of these countries (Canada and Australia) have universal health insurance for patients within hospitals so the challenges in access to resources occur during the post-hospitalization period. However, individuals living in less-developed or low-income countries face more barriers in terms of accessing skilled rehabilitation services, assistive devices, supported employment, education, or health care services that can facilitate long-term community reintegration after an SCI.8,69,70 

  • b)

    Availability of informal support. Evidence on the role of informal social support has been well-established in the successful rehabilitation and community reintegration of people with SCI.71,72 A systematic review found social support to have a positive relationship with both physical and mental health such as dealing with depression or pain, adjustment with injury, and overall life satisfaction after having an SCI.59 Having positive social relationships also led to reduced likelihood of experiences related to depression, suicidal ideation, psychosocial disability, and posttraumatic stress disorder in people with SCI.59 In a number of studies, social relationships and availability of informal social networks were found to be one of the most significant factors that improved participation and helped patients to deal with secondary health conditions and overall management of life with SCI.16,63,64,73 

  • c)

    Geographical variation. The etiology, incidence, prevalence, and demographics of SCI change with respect to the countries and geographical regions within countries. These geographical differences affect the availability of general level of health and social care, which in turn affect the rehabilitation service delivery.5 Furthermore, urban–rural differences also affect the availability and accessibility of rehabilitation services.74 For example, a qualitative study of health professionals working with individuals with SCI highlighted that individuals living in rural areas were significantly worse-off with respect to the availability of rehabilitation services and other resources related to accessible housing or transportation than those living in urban areas.75 

  • d)

    Other aspects of environment (such as technology access, policy, community characteristics). People with SCI are also diverse based on the frequency and magnitude of environmental barriers that they do (or do not) face in the community. For example, in a study by Whiteneck and associates, around 80% of participants reported confronting barriers, ranging from minor or infrequent problems to major problems encountered on the daily basis.76 Several studies report the influence of environmental factors on the experiences of community reintegration and participation of people with SCI.10,37 A qualitative study exploring the factors affecting participation among people with SCI revealed that mobility aids, transportation, and home accessibility were identified as most influential factors.39 In one study, 136 people with traumatic SCI, 41% of whom were African American, were interviewed regarding the relationship between environmental barriers and community reintegration.77 The authors found that after natural environment, the topmost barriers perceived by the participants affecting their community reintegration were government policies, transportation, and availability of health care services. In a Canadian survey study (N = 357), accessible transportation, community access, and adapted and special equipment were found to be the most significant factors to improve participation in physical and social activities after SCI.73 

In this study, we examined an array of 10 common factors within three categories that make the population with SCI heterogeneous and pose significant implications on their rehabilitation needs and outcomes related to community reintegration (Table 2). The available literature on SCI rehabilitation suggests that all these factors affect rehabilitation outcomes to varying extent. There is level 1 evidence that social support, self-efficacy, and self-esteem facilitate community reintegration among people with SCI, whereas there is level 5 evidence that presence of psychological or medical complications decreases it. There is lack of clarity on the impact of injury-related factors on community reintegration. However, it is well established that none of these factors predict community reintegration independently, rather a combination of these factors interact with each other and predict the community reintegration and participation, life satisfaction, and overall quality of life of people with SCI. Therefore, rehabilitation approaches directed at optimizing community reintegration may involve components of physical, psychosocial, and vocational rehabilitation while considering injury-related, personal, and societal aspects of an individual's life.

Overall, literature indicates that community integration of individuals with SCI is a function of their injury as well as their personal and social factors. Consequently, rehabilitation interventions directed toward community reintegration should involve a multidisciplinary approach that may include components of physical, psychosocial, and vocational rehabilitation directed at personal and environment levels.78 All three types of rehabilitation approaches are interrelated and have their direct or indirect impact on community reintegration of individuals with SCI66 (see Figure 2).

The heterogeneity manifested through individuals' injury-related and personal characteristics determine the approaches to physical rehabilitation. Depending on these factors, the goals for rehabilitation may be varied and can be achieved through the outpatient or community-based physiotherapy, occupational therapy services, a fitness center, assistive technology support, and other health services related to urology, obstetrics, gynecology, and sexual health.66 

For example, in people with less severe injuries or paraplegia, rehabilitation goals can range from maintaining or improving walking, regaining motor control, and facilitating performance in the tasks such as transfers or pushing a wheelchair.8 In people with moderate level of injuries such as at the higher thoracic regions, maintaining or improving reach, grasp, and manipulation and ameliorating neuropathic pain can be of importance. Whereas in people with more severe injuries such as higher tetraplegia, attaining independence in breathing and optimizing the management of spasticity would be priorities,66,79 in addition to other goals, such as bowel and bladder management, skin care, and pain management, which are common across all groups. Likewise, individuals who are older at the time of injury and have complete or more severe injuries will have different (and probably more) rehabilitation needs than those who are younger and have less severe injuries.

The interventions for improving functioning in important areas such as mobility or bladder functions will also depend on personal and other lifestyle factors. For example, individuals with paraplegia will most likely need to use a manual wheelchair. Attaining independence in breathing, learning to use assistive technologies, and gaining skill in direction of care would be priorities. Across the population of people with SCI, management of spasticity, bowel and bladder management, skin care, and pain management are common goals.8 

As discussed earlier, the impact of SCI on a person's life has positive to negative effect that depend partly on the individual and partly on the psychosocial support an individual receives. Therefore, the psychosocial rehabilitation of an individual with SCI often involves a comprehensive approach of building a supportive environment involving family members. It also involves helping patients access and navigate legal, federal, or provincial resources or services available to them, such as those related to accommodation, housing, insurance, health, or other disability benefits.80,81 

The extent, nature, and frequency of these interventions will depend on the availability of formal and informal social support such as family or other caregivers and eligibility for funding or other resources (eg, attendant care services).78 In cases where family support is available, a comprehensive evaluation is required in which the family's understanding of the injury, expectations for the future, and capacity to provide support and assistance are assessed. Potential caregivers are identified and educated about rehabilitation needs of an individual with SCI and resources available in the community.80 In case of individuals living alone, special attention should be given to improve their social participation (eg, health promotion activities in the community) to the maximum extent possible and provide appropriate information to improve their access to various community resources.74,82 Social skills and recreational training can be of particular importance to promote physical and psychological health and provide avenues for reintegration into the society.83 Likewise, depending on the individual's mental health needs, rehabilitation interventions may include individualized or group-based programs involving education and counselling, cognitive behavior therapy (CBT), psychotherapy, or a coping effectiveness training (CET) by a psychologist or psychiatrist if needed.84 

Return to work including both vocational and avocational activities has been the key to independent living and has a significant impact on life satisfaction, quality of life, psychological adjustment, and overall community reintegration of people with SCI.40,85 Evidence suggests that in addition to health-related issues, various personal, environmental, and policy-related factors affect return to work or initiating employment after incurring SCI.86 Therefore, keeping these factors in consideration, several approaches to vocational rehabilitation can be considered for a person for whom return to work is an important goal. Some of these approaches include program-based, supported employment and case-coordinated approaches.87 The critical components within each of these approaches will vary according to individual needs and may include any of the following: job readiness assessments and work preparedness programs to evaluate and improve person's ability to perform the job demands; evaluation of environmental factors such as transportation, accessibility of the work premises, or availability of an attendant; knowing employer's expectations and addressing concerns related to worksite modifications, equipment, or flexible work schedule; and providing ongoing support to both the individual and the employer.86,88,89 In situations where return to work or school is not a primary or feasible goal for an individual, efforts can be geared toward improving meaningful engagement in self-directed activities, such as resuming hobbies and home-making activities and exploring options for volunteer work, adapted sporting, or continuing education to improve the feelings of self-worth and increase avenues for social interaction and involvement.90,91 

One major limitation of this study was that we only included studies that were available in English. Inclusion of studies in languages other than English might have given us more comprehensive results. Another limitation of this study might be related to the generalizability of its findings. Because most of the cited literature came from developed countries, the results might not be completely applicable to the context of less developed or developing countries. In addition, we conducted our search from six major databases using key words based on our operational definition of community reintegration. Therefore, results we obtained are limited to the articles based on our search strategy.

The available literature on SCI rehabilitation suggests that an array of personal, injury-related, and environmental factors create significant heterogeneity in rehabilitation needs and outcomes among people with SCI that further affect their community reintegration. Understanding the heterogeneity posed by these aspects will help rehabilitation professionals to address the needs and concerns of people with SCI in a holistic but unique way and help them achieve a satisfying life that they desire. This integrative review found that social support and individuals' self-efficacy can improve community reintegration of people with SCI. However, evidence regarding the impact of injury characteristics on community reintegration is still underdeveloped. Therefore, approaches directed at community reintegration should involve components of psychosocial, physical, and vocational rehabilitation while considering personal and societal aspects of an individual's life.