According to the Universal Declaration of Human Rights by the United Nations (1948), the right to work is a universal human right. Employment can be defined as “engaging in all aspects of work, as an occupation, trade, profession or other forms of employment, for payment or where payment is not provided, as an employee, full or part-time, or self-employed” (Organization 2001). The value of employment and its benefits on the individual’s daily functioning and psychosocial well-being has been well documented in the literature. Past research has shown that active participation in the workforce can lead to increased independence and social integration, greater life satisfaction, and improved quality of life in those with SCI (Hess et al. 2004; Ottomanelli & Lind 2009).
Most people with SCI are capable of contributing to their communities through employment post-injury and can benefit greatly from vocational rehabilitation (Bickenbach et al. 2013). However, their potential to participate in the workforce is often hampered by various physical and social barriers. As suggested in a report from the Spinal Cord Injury Research Evidence on work and employment post-SCI in the adult population, facilitators and barriers to returning to work following SCI consists of both modifiable and non-modifiable factors and are situated at both the individual and systemic levels (Escorpizo R 2018).
Demographic and clinical characteristics, such as being male and Caucasian, earlier onset of injury, lower injury severity, and higher pre-injury education participation in the workforce, have been identified as non-modifiable personal factors that increase the likelihood of employment post-SCI; post-injury factors such as the lower occurrence of health complications, higher level of education, functional independence, and desire to work are modifiable personal characteristics that predict better vocational outcomes. Within the broader social environment, access to assistive devices and transportation, workplace accommodations, as well as adequate social support, serve as facilitators of return to work following SCI, while inadequate financial assistance, negative societal attitudes toward people with disabilities, and lack of environmental accessibility contribute to negative vocational outcomes (Anderson & Vogel 2002; Miriam Hwang et al. 2015; Vogel et al. 1998).
In Western society where autonomy, independence, and productivity are highly valued during late adolescence and young adulthood, it is especially important to create an environment that enables young people living with SCI to thrive in the workforce. In this section, we review current evidence on employment in individuals with pediatric-onset SCI and identify gaps in the existing literature.
To date, no intervention studies on work and employment in individuals with pediatric-onset SCI have been conducted; all eight studies summarized above are observational studies. Among those, all but one originated from the United States, and six were conducted within a single pediatric specialty hospital system for children and adolescents with SCI (Shriner’s Hospital). Participants involved in the studies were primarily young adults with pediatric-onset SCI. Overall, the employment rates in study participants with pediatric-onset SCI ranged from 47.5% to 64% (Anderson & Vogel 2002; Anderson et al. 2006; Miriam Hwang et al. 2015), which is higher than that in the adult-onset population but significantly lower than the employment rate in the age-matched general population (Lidal et al. 2007; U.S. Bureau of Labor Statistics 2013). In the most recent study examining the occupational characteristics of adults with pediatric-onset SCI using the 2010 Standard Occupational Classification system, Hwang and colleagues (2015) found that 219 of 461 participants were employed in a variety of occupations, with education, law, community service, arts, and media occupations being the most common.
Similar to findings from studies conducted with individuals who acquired SCI as adults, Secondary health conditions, such as the occurrence of AD, spasticity, pressure ulcers, and respiratory complications, were found to decrease the odds of employment for persons with pediatric-onset SCI (Anderson & Vogel 2002; Anderson et al. 2006; Hwang et al. 2014b). level of injury was found as a predictor of employment outcomes among those with pediatric-onset SCI. More specifically, those with paraplegia were more likely to be employed compared to those with tetraplegia (Miriam Hwang et al. 2015; Massagli et al. 1996). Interestingly, unlike those who acquired SCI later in life, males with pediatric-onset SCI were no more likely to be employed compared with their female counterparts (Miriam Hwang et al. 2015). Not surprisingly, high household income, functional independence, community mobility, and active community participation were identified as facilitators of employment (Vogel et al. 1998; Anderson & Vogel 2002; Anderson et al. 2006; Hwang et al. 2014b; Vogel et al. 1998; Anderson et al. 2002).
As suggested by Massagli et al. (1996), the overall education attainment is high among those with pediatric-onset SCI. In addition, high levels of education, especially completion of post-secondary education, seem to predict positive employment outcomes (Anderson & Vogel 2002; Hwang et al. 2014b; Miriam Hwang et al. 2015; Kannisto & Sintonen 1997a; Massagli et al. 1996; Vogel et al. 1998). However, despite their high level of educational achievement, the employment prospect and outcomes in individuals with pediatric-onset SCI are much less positive than those of those without disabilities (Kannisto & Sintonen 1997a). In their study involving 46 young adults with pediatric-onset SCI, Vogel et al. (1998) found that the employment rate of participants with pediatric-onset SCI (full time or part-time) was 54%, which was considerably lower than that of the general population (84%). Findings from Hwang and colleagues’ (2014b) work which took a closer look at the relationship between levels of education and employment rates in adults with pediatric-onset SCI may help explain the discrepancy in employment prospects between those with and without pediatric-onset SCI. The study revealed that although the employment rate in participants with baccalaureate or higher degree (71.3%) was similar to the employment rate in the general population with the same level of education (76%), the employment rates in participants with a high school diploma and some college/associate’s degree were considerably lower than that in the general population with the same educational attainment. This difference may be attributed to the nature of the work available for individuals with a high school diploma or associate’s degree, which often requires activities than may be too physically demanding for those with SCI (Hwang et al. 2014b).
It is worth noting that employment may be associated with psychosocial well-being. Several studies demonstrated that life satisfaction was rated higher among participants with pediatric-onset SCI who were employed, compared to those who were unemployed (Anderson & Vogel 2002; Anderson et al. 2006; Hwang et al. 2014b; Vogel et al. 1998). In addition, for participants who were employed, the levels of life satisfaction tended to increase over time (Miriam Hwang et al. 2015). Hwang et al. (2012) examined self-reported data on substance abuse in young adults with pediatric-onset SCI in the United States. Logistic regression indicated that unemployment was a contributor to tobacco use and depression in participants. Interestingly, the study also showed that alcohol use was more prevalent among participants who were employed than those who were unemployed (Hwang et al. 2012).
No studies identified from our literature search investigated the role of socio-environmental factors in shaping employment outcomes in individuals with pediatric-onset SCI, representing a notable gap in the literature. Moreover, with the lack of intervention studies, the evidence concerning the employment outcomes of those with pediatric-onset SCI is primarily drawn from observational studies, making it challenging to establish guidelines for clinical practice. If the ultimate goal of rehabilitation for children and adolescents who sustain an SCI is to assure that they grow up to lead productive and satisfying lives, more research on vocational rehabilitation and educational planning in adolescents and youth with SCI is needed in the future.