The onset of an SCI in infancy, childhood, or adolescence is a life-altering event that has major psychosocial implications for survivors. Depression is the most common health condition in individuals with SCI. In the adult SCI population, it is estimated that 22% of individuals are living with depression (Williams & Murray 2015). In addition, during inpatient rehabilitation, as many as 42% of individuals with SCI experience depression (Krause et al. 2000). Often closely linked to depression, anxiety is also prevalent among individuals with SCI. According to a meta-analysis by Le and Dorstyn (2016), approximately 27% of adults with SCI experience clinically significant symptoms of anxiety. Previous research has found that health complications (e.g., pain), financial strain, and unsafe use of alcohol are associated with heightened risks of depression and/or anxiety in individuals with SCI (Budh et al. 2005; Hoffman et al. 2011; Zürcher et al. 2019), whereas factors such as social support, resilience, and community participation serve as protective factors against depression and/or anxiety (Kraft & Dorstyn 2015; Min et al. 2014; Müller et al. 2015). In terms of interventions various psychological (e.g., cognitive behavioral therapy) and physical interventions (e.g., physical activity courses) have demonstrated effectiveness in treating depression and anxiety in those with SCI (Burke et al. 2019; Craig et al. 1998; Curtis et al. 2017).
In individuals with and without SCI, levels of depression and anxiety are key determents of life satisfaction, as well as the physical, emotional, and social domains of QoL (Garma et al. 2011; Van Leeuwen et al. 2012). Compared to their counterpart without disabilities, individuals with SCI tend to have lower QoL and decreased life satisfaction (Dijkers 2005; Evans et al. 1994). As suggested by Evans et al. (1994), those with more severe injuries are at particularly high risk of having compromised QoL and life satisfaction. The onset of an SCI may also impact the mental and social aspects of life caregivers, especially parents of children with SCI, as the presence of a disability may contradict the “normal” life that they envisioned for their child (Lynch & Cahalan 2017). However, the adverse psychological impact of SCI may be buffered by adaptive coping strategies (Chevalier et al. 2009). Coping can be defined as “cognitive and behavioral efforts to manage external and/or internal demands that exceed the resources of the individual” (Kelly, Mulcahey et al. 2012). In a study by King and Kennedy (1999), the findings demonstrate that group-based interventions aiming to enhance adaptive coping in individuals with SCI may help reduce depression and anxiety.
Research tackling the psychosocial aspect of SCI has primarily focused on the adult population. It is not until recently that the psychosocial aspect of SCI in the pediatric population received growing interest from practitioners and researchers. Given the dynamic nature of childhood and adolescence, the psychosocial consequences of SCI may have profound developmental implications for the pediatric-SCI population. The purpose of this section is to summarize and review the current evidence related to depression, anxiety, coping, QoL, and life satisfaction in the pediatric SCI population.
The literature search yielded 35 studies concerning the psychosocial adjustment of individuals with pediatric-onset SCI and/or their caregivers; The majority of those were observational studies and utilized a self-report survey design.
The prevalence of both depression and anxiety in children with SCI seems to be comparable to that in their typically developing peers and lower than that in adults with SCI (Klaas et al. 2014). In Klass and colleagues (2014) study, 236 adolescents with SCI, depression, and anxiety were present in 5.5% and 10.6% of participants, respectively. In another study involving 24 children with transverse myelitis and their parents, approximately 8.7% of the children experienced clinical levels of depression according to parent reports (Harder et al. 2013). For adults with pediatric-onset SCI, the overall severity and incidence of depressive symptoms did not differ from those who acquired SCI during adulthood (Ma et al. 2016). Kelly et al. (2011) investigated the incidence of depression and anxiety in 203 primary caregivers of children with SCI and found that 6 and 21% of caregivers scored in the range of moderate or severe anxiety and depression, respectively.
Like in children without disabilities, the incidence of depression and anxiety in children with SCI differ by gender and age. When comparing psychosocial outcomes among adolescents with SCI between ages 12 and 18, Klaas et al. (2014) found that older adolescents were more likely to experience depression than their younger peers. Older Adolescent girls with SCI, in particular, were more likely to experience anxiety than their male counterparts and younger girls with SCI. Researchers have also identified various clinical factors associated with depression and/or anxiety in the pediatric SCI population. For example, in children with SCI, a shorter duration of injury is associated with the occurrence of anxiety (Anderson et al. 2009), and poor social relationships, having a caregiver with mental health problems and having a caregiver with less education predicted both anxiety and depression (Kelly et al. 2011). In adults with pediatric-onset SCI, low levels of community participation, polypharmacy (i.e., having to take multiple medications), hazardous drinking, bladder incontinence, and pain have been identified as predictors of depression (M. Hwang et al. 2015; January et al. 2014). Interestingly, adults with pediatric-onset SCI who have incomplete injury seem to be at higher risk of experiencing depression than those with complete injury, and incomplete injury was found to predict depression in two studies (Anderson et al. 2007; January et al. 2014). Furthermore, according to a recent study by January et al. (2015), poor sleep quality may contribute to both depression and anxiety in adults with pediatric-onset SCI. In their work examining predictors of caregiver psychological functioning and relationships between caregiver and child psychological outcomes., Kelly et al. (2011) found that having a child who was older at the time of injury predicted depression among caregivers; in addition, being female and having a child with mental health problems predicted caregiver anxiety and depression.
Depression and anxiety have been linked to a wide range of negative health and social outcomes in the pediatric-SCI population, such as low health-related quality of life (Anderson et al. 2009; Anderson et al. 2007; Garma et al. 2011). As demonstrated by Anderson et al. (2007), depression, in particular, is associated with unemployment, low income, as well as, less life satisfaction in children and adolescents with SCI. Lower depression in children with SCI, on the other hand, is related to favorable outcomes such as better parent-child relationships (Morrison et al. 2017). Moreover, it is worth noting that depression and anxiety may impact patterns of community participation in children with SCI. Specifically, children with SCI who are more anxious or depressed are more likely to engage in activities close to their homes rather than at someone else’s house or in the community (Anderson et al. 2009)
With respect to life satisfaction, no significant differences have been observed between individuals who acquired SCI during their childhood and those who sustained SCI as adults (Ma et al. 2016). Within the pediatric SCI population, life satisfaction is not significantly associated with gender, duration of injury, or race/ethnicity (Anderson et al. 2002). In their study involving 216 adults with pediatric-onset SCI, Anderson et al. (2002) also found that participants with tetraplegia had significantly lower satisfaction than those with paraplegia, and participants who were injured in their late adolescence had significantly lower life satisfaction than those with earlier onset of the injury. In addition, community and occupational participation, being married/having a partner, not using illicit drugs, high perceived mental health, functional independence, and low occurrence of medical complications have been identified as significant predictors of life satisfaction in individuals with pediatric-onset SCI (Anderson et al. 2002; Anderson & Vogel 2003; Anderson et al. 2006; Chen et al. 2008; Chlan et al. 2011; Vogel et al. 2002a). Anderson and Vogel (2013) investigated domain-specific satisfaction levels in 216 adults with pediatric-onset SCI. The results revealed that the highest satisfaction ratings occurred for the domains of transportation, education, and social/recreation. Dating opportunities, job opportunities, and income, in contrast, had the lowest ratings but were found to contribute significantly to participants’ overall life satisfaction (Anderson & Vogel 2003). Studies examining the longitudinal trend of life stratification in adults with pediatric-onset SCI have shown that life satisfaction tends to increase over time, especially among participants who remained employed (Chen et al. 2008; Hwang et al. 2014b). However, as pointed out by Chen et al. (2008), adults with pediatric-onset SCI who are unsatisfied with life initially are likely to stay unsatisfied over time if the critical factors impeding their levels of life satisfaction remain unchanged or unaddressed.
Previous research has shown that QoL in both children with SCI and adults with pediatric-onset SCI is considerably lower than that in those without disabilities or chronic conditions (Abresch et al. 2007; Garma et al. 2011; Kannisto & Sintonen 1997a). Interestingly, as revealed in Kannisto and Sintonen’s (1997a) study, individuals with and without pediatric-onset SCI tend to place different emphases when evaluating their QoL. In their sample of 372 adults with pediatric-onset SCI and 36 without disabilities, The SCI group assigned higher importance to the dimensions of mental functioning, communicating, social participation, and seeing and lower for moving, working, sleeping, and eating compared to participants without disabilities, when assessing their QoL (Kannisto & Sintonen 1997a). Among children with SCI, those with paraplegia have demonstrated higher QoL, especially in the social aspect, than their peers with tetraplegia (Garma et al. 2011; Riordan et al. 2015). Kelly, Klaas et al. (2012) looked at the relationship between participation and QoL in children (between ages 6-12) and adolescents (between ages 13-18) with SCI. The study found that children, participating in activities further from home predicted higher QoL for children, and participating in activities with a more diverse group predicted higher QoL. These findings suggest that encouraging activity participation outside the home may promote QoL of children with SCI, and fostering participation with a more diverse group may improve QoL in adolescents with SCI (Kelly, Klaas, et al. 2012). The role of parental characteristics in influencing the QoL in children with SCI has also been highlighted in the literature. As revealed in a recent study by Kelly et al. (2016), parents’ effective problem solving was related to high physical and social health-related quality of life in children with SCI. To date, only one small-scale intervention study targeting QoL in the pediatric SCI population has been conducted. In their pilot study involving six children with SCI, Castello et al. (2012) found that FES cycling exercises were effective in improving QoL in study participants.
Smith et al. (2013) examined coping strategies and their association with psychosocial outcomes in 282 adolescents with SCI and found that cognitive restructuring and resignation were the most frequently used coping strategies among participants, whereas blaming others and self-criticism were the least frequently used. Furthermore, active coping strategies were perceived as effective in reducing SCI-related distress by participants. Escape-oriented coping, in contrast, was linked to negative psychosocial outcomes, such as depression and anxiety. (Smith et al. 2013). In adults with pediatric-onset SCI, religion has been identified as a commonly used and effective tool of coping. In their sample of 298 adults with pediatric SCI (Chlan et al. 2011), approximately half (55%) of the participants reported using religion as a way of coping. Furthermore, the higher perceived importance of religion was linked to higher life satisfaction among study participants.
Overall, while many studies have tackled the psychosocial domain of pediatric SCI, intervention studies focusing on this area are clearly lacking. Moreover, given the influences of caregivers on the well-being of children with SCI, it is important for future clinical interventions aiming to promote psychosocial adjustment in the pediatric SCI population to target both children with SCI and their caregivers.