Psychosocial outcomes among youth with spinal cord injury by neurological impairment.

OBJECTIVE: Examine psychosocial outcomes of youth with spinal cord injury (SCI) as a function of neurological level (paraplegia/tetraplegia) and severity (American Spinal Injury Association (ASIA) Impairment Scale (AIS)). DESIGN: Survey research. SETTING: Three pediatric SCI specialty centers in the USA. Participants Youth with SCI ages 5-18 with neurological impairment classifications of: tetraplegia AIS ABC (tetraplegia ABC), paraplegia AIS ABC (paraplegia ABC), or AIS D. OUTCOME MEASURES: Children's Assessment of Participation and Enjoyment, Pediatric Quality of Life Inventory, Revised Children's Manifest Anxiety Scale, and Children's Depression Inventory. RESULTS: Three hundred and forty youth participated; 57% were male; 60% were Caucasian, 21% Hispanic, 7% African-American, 2% Native American, and 3% reported "other". Their mean age was 8.15 years (standard deviation (SD) = 5.84) at injury and 13.18 years (SD = 3.87) at interview. Ninety-six youth (28%) had tetraplegia ABC injuries, 191 (56%) paraplegia ABC injuries, and 53 (16%) AIS D injuries. Neurological impairment was significantly related to participation and quality of life (QOL). Specifically, youth with paraplegia ABC and AIS D injuries participated in more activities than youth with tetraplegia ABC (P = 0.002; P = 0.018, respectively) and youth with paraplegia ABC participated more often than youth with tetraplegia ABC (P = 0.006). Youth with paraplegia ABC reported higher social QOL than youth with tetraplegia ABC (P = 0.001) and AIS D injuries (P = 0.002). Groups did not differ regarding mental health. CONCLUSION: Interventions should target youth with tetraplegia ABC, as they may need support in terms of participation, and both youth with tetraplegia ABC and AIS D injuries in terms of social integration.

Depression and anxiety in adolescents with pediatric-onset spinal cord injury.

BACKGROUND: Little is known about depression and anxiety in adolescents with spinal cord injury (SCI). OBJECTIVE: To examine how depression, anxiety, suicidal ideation, and usage of treatment differ by age and sex among adolescents with SCI. METHOD: Youth 12 to 18 years old who had acquired SCI at least 1 year prior were recruited from 3 specialty hospitals. They completed the Children's Depression Inventory (ages 12-17 years) or Beck Depression Inventory-II (18 years), and Revised Children's Manifest Anxiety Scale (12-18 years). Analyses assessed differences between younger and older adolescents and between males and females. RESULTS: The 236 participants were an average age of 15.58 years (SD 1.98), 58% were male, and 60% Caucasian. Average age at injury was 10.57 years (SD 5.50), and 62% had paraplegia. For depression, 5.5% of adolescents ages 12 to 17 years exceeded the clinical cutoff and 12.7% of 18-year-old adolescents fell into a range of moderate or severe depression. For anxiety, 10.6% of adolescents ages 12 to 18 years exceeded the clinical cutoff. Univariate results revealed that older adolescents were more depressed than younger adolescents, and girls were more anxious than boys. An interaction between sex and age emerged, in that older adolescent girls were significantly more anxious than other youth. Older adolescents were also more likely to be taking medications for emotional, psychological, or behavioral reasons. Reports of suicidal ideation did not differ by adolescent age or sex. CONCLUSION: For these adolescents, depression differed with age, and anxiety differed based on age and sex. Implications for intervention include early identification and treatment for struggling adolescents.

Assessment and evaluation of primary prevention in spinal cord injury.

Although the incidence of spinal cord injury (SCI) is low, the consequences of this disabling condition are extremely significant for the individual, family, and the community. Sequelae occur in the physical, psychosocial, sexual, and financial arenas, making global prevention of SCI crucial. Understanding how to assess and evaluate primary prevention programs is an important competency for SCI professionals. Assessing a program's success requires measuring processes, outcomes, and impact. Effective evaluation can lead future efforts for program design while ensuring accountability for the program itself. The intended impact of primary prevention programs for SCI is to decrease the number of individuals who sustain traumatic injury; many programs have process and outcome goals as well. An understanding of the basic types of evaluation, evaluation design, and the overall process of program evaluation is essential for ensuring that these programs are efficacious. All health care professionals have the opportunity to put prevention at the forefront of their practice. With the current paucity of available data, it is important that clinicians share their program design, their successes, and their failures so that all can benefit and future injury can be prevented.

Evidence-based practice in primary prevention of spinal cord injury.

A spinal cord injury (SCI) not only causes paralysis, but also has long-term impact on physical and mental health. There are between 236,000 to 327,000 individuals living with the consequences of SCI in the United States, and the economic burden on the individuals sustaining the injury, their support network, and society as a whole is significant. The consequences of SCI require that health care professionals begin thinking about primary prevention. Efforts are often focused on care and cure, but evidence-based prevention should have a greater role. Primary prevention efforts can offer significant cost benefits, and efforts to change behavior and improve safety can and should be emphasized. Primary prevention can be applied to various etiologies of injury, including motor vehicle crashes, sports injuries, and firearm misuse, with a clear goal of eliminating unnecessary injury and its life-changing impact.

Participation and quality of life among youth with spinal cord injury.

AIM: Examine relationships between participation and quality of life (QOL) among youth with spinal cord injury (SCI). METHOD: Youth ages 6-18 years with SCI completed the Children's Assessment of Participation and Enjoyment, which measures participation frequency (diversity/intensity) and context (with whom/where), and the Pediatric Quality of Life Inventory, which measures emotional, social, school, and overall psychosocial QOL. Analyses were conducted separately for children (ages 6-12) and adolescents (ages 13-18) and included correlations and multiple regression. RESULTS: 340 youth participated; the participants were 56% male with an average age of 13.33 years (SD=3.75), 66% had paraplegia, and their average injury duration was 5.13 years (SD=4.31). Among children, participating further from home was related to increased social, school, and overall QOL. Among adolescents, participating with a more diverse group was related to greater emotional QOL. In general, participation context was more closely related to QOL, but among physical (for all youth) and social (for children) activities, frequency of participation was related to QOL. INTERPRETATION: Relationships between participation and QOL differ with child age. Among children, encouraging participation out of the home may be most beneficial to QOL. Among adolescents, fostering participation with a more varied group may be most beneficial to QOL.

Coping and participation in youth with spinal cord injury.

BACKGROUND: Coping and participation are important adjustment outcomes of youth with spinal cord injury (SCI). Research addressing how these outcomes are related is limited. OBJECTIVE: This cross-sectional study examined relationships between coping and participation in youth with SCI. METHOD: Youth ages 7 to 18 years were recruited from 3 hospitals specializing in rehabilitation of youth with SCI. The Kidcope assessed coping strategies, and the Children's Assessment of Participation and Enjoyment (CAPE) examined participation patterns. Point biserial and Pearson correlations assessed relationships among variables, and hierarchical multiple regression analyses examined whether coping significantly contributed to participation above and beyond significant demographic and injury-related factors. RESULTS: The sample included 294 participants: 45% female, 65% Caucasian, 67% with paraplegia. Mean age was 13.71 years (SD = 3.46), and mean duration of injury was 5.39 years (SD = 4.49). Results indicated that higher levels of social support and lower levels of self-criticism predicted higher participation in informal activities, lower levels of social withdrawal predicted participation in informal activities with a greater diversity of individuals, lower levels of blaming others predicted higher enjoyment of informal activities, and higher levels of cognitive restructuring predicted participation in formal activities with a greater diversity of individuals and in settings further from home. CONCLUSION: Results suggest higher levels of social support and cognitive restructuring and lower levels of self-criticism, social withdrawal, and blaming others predicted favorable participation outcomes. Interventions for youth with SCI that encourage higher levels of positive coping strategies and lower levels of negative and avoidant strategies may promote positive participation outcomes.

Psychosocial outcomes among youth with spinal cord injury and their primary caregivers.

BACKGROUND: Past research has found youth with disabilities to experience poor psychosocial outcomes, but little is known about factors related to psychosocial health among youth with spinal cord injury (SCI). OBJECTIVE: To describe psychosocial health among youth with SCI, examine relationships between psychosocial outcomes and demographic and injury-related factors, and examine relationships between aspects of psychosocial health. Youth activity, participation, quality of life (QOL), coping, anxiety and depression, and caregiver mental health were included. METHODS: Data were collected as part of a prospective study of 420 youth with SCI ages 1-18 and their primary caregivers. Activity data were also presented from a study developing a computerized adaptive testing (CAT) platform with 226 youth with SCI ages 8-21. RESULTS: Although relationships varied by factor, youth outcomes were related to youth age, sex, age at injury/injury duration, and level/extent of injury. Caregiver mental health related to child age and age at injury. Further, relationships were uncovered between aspects of psychosocial health: aspects of youth mental health were related to youth participation and QOL, youth coping was related to youth mental health, participation, and QOL, and caregiver mental health was related to child mental health and QOL. CONCLUSION: Psychosocial outcomes relate to each other and vary by child and injury-related factors and should be understood in a comprehensive, developmental context. Identifying best measures of activity and psychosocial functioning among youth with SCI and understanding factors related to their psychosocial health is critical to improving outcomes for the pediatric-onset SCI population.

Obstacles to community participation among youth with spinal cord injury.

OBJECTIVE: Examine caregiver-report of obstacles to community participation for youth with spinal cord injury (SCI), and explore relationships between obstacles and child, caregiver, and community characteristics. DESIGN: Two hundred and one primary caregivers of youth with SCI ages 7-17 years were interviewed at three pediatric SCI centers within a single-hospital system. Caregivers answered an open-ended question assessing obstacles to youth participation. A mixed-methods approach was incorporated, where qualitative methods analyzed caregiver-reported obstacles, and exploratory multivariate analyses examined relationships between obstacles and demographic variables. RESULTS: Caregivers were primarily mothers (74%), married (69%), employed (54%), had college experience (67%), and lived in small towns (55%). Youths' mean age was 12.60 years at interview and 7.19 years at injury, 70% had paraplegia, and 55% had complete injuries. Analyses revealed that youth participation was limited by obstacles across six domains: community, disability-related, practical concerns, child-internal, social, and other. Child, caregiver, and community characteristics were related to overall report of obstacles, and report of community obstacles, disability-related obstacles, and practical concerns. Caregiver college experience and small town living predicted overall report of obstacles. Having a child injured at a younger age, caregiver college experience, and small town living predicted community obstacles. Having a child with an incomplete injury and recent medical complication predicted disability-related obstacles. Caregiver employment predicted practical concerns. CONCLUSION: Youth from small towns, those injured younger, those with incomplete injuries, and those experiencing recent medical complications may need additional supports and resources to maximize participation. Clinicians should work with caregivers to identify and problem-solve obstacles to youth participation.

Girls with spinal cord injury: social and job-related participation and psychosocial outcomes.

OBJECTIVE: To examine social and job-related participation among girls with spinal cord injury (SCI) and relationships between participation, depression, and quality of life. PARTICIPANTS AND SETTING: This sample included 97 girls (aged 7-17 years) who had sustained SCI at least 1 year prior to interview, and who were receiving care at three pediatric SCI centers within a single hospital system. MEASURES: Participants completed the Children's Assessment of Participation and Enjoyment, Children's Depression Inventory, and Pediatric Quality of Life Inventory. Caregivers completed a demographics form. RESULTS: Girls participated more often in social activities than in job-related activities and participated in social activities with a more diverse group and further from home. A broader context of social participation was related to lower depression, which in turn was related to higher quality of life. Higher frequency of job-related participation was related to lower depression, which in turn was related to higher quality of life. CONCLUSIONS: Social and job-related participation are related to psychosocial outcomes among girls with SCI. Participation in social and job-related activities should be a focus of rehabilitation for girls, because the skills gained from this involvement may help build resilience against future obstacles to socialization and employment.

Assessing patterns of participation and enjoyment in children with spinal cord injury.

AIM: To determine patterns of participation and levels of enjoyment in young people with spinal cord injuries (SCI) and to assess how informal and formal participation varies across child, injury-related, household, and community variables. METHOD: One hundred and ninety-four participants (106 males, 88 females; mean age 13y 2mo, SD 3y 8mo, range 6-18y) with SCI and their primary caregivers completed a demographics questionnaire and a standardized measure of participation (the Children's Assessment of Participation and Enjoyment, [CAPE]) at three pediatric SCI centers in a single hospital system in the United States. Their mean age at injury was 7 years 2 months (SD 5y 8mo, range 0-17y); 71% had paraplegia, and 58% had complete injuries. RESULTS: Young people participated more often in informal activities (t((174))=29.84, p<0.001) and reported higher enjoyment with these (t((174))=2.01, p=0.046). However, when engaging in formal activities, they participated with a more diverse group (t((174))=-16.26, p<0.001) and further from home (t((174))=-16.08, p<0.001). Aspects of informal participation were related to the child's age, sex, and injury level, and formal participation to the child's age and caregiver education. Caregiver education was more critical to formal participation among young people with tetraplegia than among those with paraplegia (F((4,151))=2.67, p=0.034). INTERPRETATION: Points of intervention include providing more participation opportunities for young people with tetraplegia and giving caregivers the resources necessary to enhance their children's formal participation.

Anxiety and depression in children and adolescents with spinal cord injuries.

Aim To determine the levels of anxiety and depression in young people with spinal cord injuries (SCI) and their associated factors and outcomes. Method Children and adolescents aged 7 to 17 years at interview who had sustained SCI at least 1 year before the study were assessed using the Children's Depression Inventory, the Revised Children's Manifest Anxiety Scale, the Pediatric Quality of Life Inventory, the Children's Assessment of Participation and Enjoyment, and a demographic questionnaire designed for the study. Results The 118 participants (61 males, 57 females) had a mean age of 12 years 4 months, SD 3 y 1 mo, range 7-17 y. Mean age at injury was 5 years 11 months, SD 4 y 11 m, range 0-16 y; 89 participants (75%) had paraplegia and 29 (25%) had tetraplegia. Fifty-seven (52%) had complete injuries and 52 (48%) had incomplete injuries according to the American Spinal Injury Association impairment scale. Thirteen participants (13%) reported significant symptoms of anxiety, and seven (6%) reported significant levels of depression, which were comparable to the normative population. Age, race, and sex were not associated with anxiety or depression, but participants with shorter duration of injury were more likely to be anxious, and those with less functional independence were more likely to be depressed. Only one dimension of participation was associated with anxiety and depression, but all aspects of quality of life were decreased among those with anxiety or depression. Interpretation The levels of anxiety and depression in young people with SCI are comparable to the normative range. When anxiety and depression occur they are associated with reduced levels of quality of life.

The changing nature of play: implications for pediatric spinal cord injury.

BACKGROUND: Perhaps no other demographic group in the history of the United States has undergone such a significant transformation in the past several decades as that of our children. Societal trends have dramatically altered the nature of play and the way children interact with their environment. These trends have included a significant decrease in outdoor recreation, an increased dependence on electronic media, and the conceptual emergence of "time poverty". Consequently, childhood obesity and type 2 diabetes rates are skyrocketing because of the preponderance of sedentary lifestyles, and children are experiencing poor social skill development, less problem-solving abilities, and a marked increase in depression. For children with disabilities, such as spinal cord injuries (SCIs), these issues are even more significant. With a traumatic injury, the need for play and its therapeutic value becomes more important and yet is harder to attain. METHODS: Literature review. FINDINGS: In a study examining recreation involvement for 66 children and adolescents with SCI, the top 5 activities were all sedentary in nature, involving little to no social interaction and conducted indoors. Listening to music, reading, computer, video games, and television viewing are the top recreation activities for children and adolescents with SCI. In addition, data collected in 2005 on "participation in organized community activities" for the pediatric SCI population found 203 of 326 patients reported no participation in sports, clubs, or youth centers after injury/diagnosis. An astonishing 62% reported no organized activity at a time when participation in adult-supervised structured activities for able-bodied children is at an all-time high. Given these statistics, it is imperative that pediatric health care professionals understand societal trends and how they affect the SCI population. Making meaningful connections between these trends and the impact they have on children and adolescents with SCI will provide the theoretical framework for future solutions.

Unique issues in pediatric spinal cord injury.

Spinal cord injuries are devastating events, and they are particularly tragic when they affect children or adolescents who have barely had an opportunity to experience life. Of the approximately 10,000 individuals who sustain spinal cord injury each year in the United States, 3% to 5% occur in individuals younger than 15 years of age and approximately 20% occur in those younger than 20 years of age (Nobunaga, Go, & Karunas, 1999). Because of the growth and development inherent in children and adolescents and the unique manifestations and complications associated with spinal cord injuries, management must be developmentally based and directed to the individual's special needs (Vogel, 1997). The many unique facets of pediatric spinal cord injuries are addressed in this article. They clearly delineate the need for care that is responsive to the dynamic changes that occur with growth and development. The multidisciplinary team, combined with a focus on family-centered care, is essential in pediatric spinal cord injuries.

Leisure characteristics of the pediatric spinal cord injury population.

OBJECTIVE: Despite the fact that play is the foundation for growth and development, little empirical evidence exists about the leisure characteristics of the pediatric spinal cord injury (SCI) population. The purpose of this study is to establish such a basis through the examination of leisure interests, frequency of participation, and satisfaction with activity in children and adolescents with SCI. METHODS: A Questionnaire with open- and closed-ended questions for 49 recreation activities was administered to a convenience sample of children and adolescents with SCI from Shriners Hospitals for Children, Chicago. RESULTS: Data from 66 children and adolescents with SCI demonstrated that the higher the intensity level of activity, the lower the participation rate among all injury levels. Subjects with C7-T6 lesions spent the most time engaged in recreational activities and also had the highest number of activities participated in per year. However, those with T7-S4 lesions had significantly more hours spent in high-intensity activities. CONCLUSION: The goal is for rehabilitation professionals to use this information to further develop treatments and interventions specific for the pediatric SCI population.