Coping, Social Support, and Caregiver Well-Being With Families Living With SCI: A Mixed Methods Study.

OBJECTIVES: To explore coping, problem solving, social support, and well-being among family caregivers of adults with spinal cord injury (SCI). METHODS: This was a mixed methods study (qualitative interviews and standardized surveys) with a diverse sample of 39 adults with SCI and their caregivers from four rehabilitation hospitals in the United States, including one Veterans Affairs (VA) hospital. Cluster analysis was used to explore whether distinct profiles of caregivers could be identified, and it was used in conjunction with qualitative data to explore patterns in well-being. Measures of well-being included leisure time satisfaction, social integration, anxiety, depression, physical health complaints, caregiver burden, and quality of life. RESULTS: The importance of individual and extra-individual resources, namely coping and social support, emerged from early qualitative analyses and guided subsequent mixed methods examination of the data. A cluster analysis yielded three caregiver profiles: (1) effective problem solvers with moderate satisfaction with social support, (2) mixed problem solvers with stronger negative orientations and mixed satisfaction with social support, and (3) low endorsers overall. Profiles helped us explore patterns across our data set and efficiently identify differences in caregiver social support, coping, well-being, and unmet needs. CONCLUSION: Data echo the need for multimodal interventions aimed at skill development, respite options, and screening, support, information, and referral around mental health and burden. SCI care and rehabilitation programs should consider incorporating strategies for bolstering effective caregiver problem-solving skills, reducing negativity and ambivalence, and enhancing social support.

Patterns of coping among caregivers of children with spinal cord injury: Associations with parent and child well-being.

INTRODUCTION: Few studies have investigated how caregivers manage stressors associated with their child's spinal cord injury (SCI) and how these patterns relate to their child's coping and adjustment. The current study explored empirically derived coping profiles among caregivers of youth with SCI and the relation of these patterns to parent and youth psychosocial outcomes. METHOD: This was a cross-sectional survey of 318 children (ages 1 to 18) and a primary caregiver. Participants completed measures assessing demographics, coping, quality of life (QOL), anxiety, and depression. We utilized hierarchical and nonhierarchical cluster analyses to identify unique coping patterns and one-way analysis of variance with control variables to assess relations between parental coping and psychosocial well-being. RESULTS: The analyses produced 3 parent coping clusters, which included avoidant (n = 47), constructive (n = 119), and adjusted/low (n = 152). ANCOVAs revealed that parents in the avoidant cluster, who utilized disengagement and blaming strategies, had significantly worse mental health symptoms compared to the constructive and adjusted low coping clusters. Specifically, avoidant coping was significantly related to increased symptoms of caregiver depression (p < .001) and anxiety (p < .001) as well as children's self-report of anxiety (p = .002), depression (p < .005) and emotional QOL (p < .001). DISCUSSION: These findings highlight the importance of fostering constructive and positive coping for both the children who face chronic illness and their caregivers. (PsycINFO Database Record (c) 2019 APA, all rights reserved).

Development of the Parent Forum: An in-person approach to supporting caregivers of youth with spinal cord injury.

Context/Objective: Describe development, implementation, review, and redesign of a hospital-based, in-person psychoeducational intervention for caregivers of youth with spinal cord injury (SCI) ages 7-17. Design: Process evaluation/case study to describe intervention development, as well as preliminary evaluation data. Setting: Pediatric specialty hospital. Participants: 41 caregivers of youth with SCI. Interventions: Caregivers attended an in-person intervention ("Parent Forum"), after which they were randomized into two groups: one received monthly phone calls from a mental health professional and the other services as usual. Caregivers were invited to attend a second Parent Forum one year later. The current paper focuses solely on the Parent Forum components. Outcome Measures: Caregiver problem solving, study-specific satisfaction questions, and qualitative focus groups. Results: After consulting with multiple stakeholders (including caregivers, clinicians, and researchers), the first Parent Forum was designed to focus on caregiver health/well-being. While caregivers from Parent Forum I reported greater positive problem solving and relatively high satisfaction scores, they also reported wanting more time together and more discussion of their children's health. We redesigned Parent Forum II to incorporate this feedback which yielded positive results, particularly during focus groups. Conclusion: The purpose of this manuscript was to share our development process to inform other teams engaged in intervention design for this or similar populations. Our experience emphasized the need to not only involve multiple stakeholders, but to pilot test intervention components, and be open to modifying them after receiving participant feedback. The final intervention model yielded positive reactions, but also emphasized the need for ongoing caregiver support.

It is a marathon rather than a sprint: an initial exploration of unmet needs and support preferences of caregivers of children with SCI.

STUDY DESIGN: Focus group study. OBJECTIVES: Explore unmet needs and support preferences of caregivers of youth with spinal cord injury (SCI). SETTING: One pediatric specialty rehabilitation hospital system in the United States. METHODS: Four focus groups were conducted with a convenience sample of 26 caregivers who were primarily mothers (96%) and married (65%), and had at least some college education (85%). Children living with SCI were on average 12.8 years old (SD = 3.3, 8-18). The average age of injury was 4.7 years (SD = 4.4, 0-16.2); mean injury duration was 8.2 years (SD = 3.9, 2-16); 77% had paraplegia; and 58% were male. Focus groups were digitally recorded, transcribed verbatim, and coded using thematic analysis and NVivo. RESULTS: Qualitative data highlighted caregiver perspectives on unmet needs relating to two phases of care: acute and rehabilitation vs. current life with SCI, and two kinds of stressors: those associated with SCI and care vs. those related to other areas of the caregivers' lives, especially their families. Caregivers described stressful interactions with care systems and community services, articulated several concerns regarding well-being of family members, and noted that both they and their children with SCI experienced isolation. Caregivers articulated preferences for additional support from professionals and peers. CONCLUSIONS: Data suggest the need for ongoing caregiver interventions and strengthened family-centered care systems, including professional assistance navigating health systems and peer support. Intervention development would benefit from further qualitative data collection with additional caregivers of youth with SCI, including multiple family members, and families from more diverse care settings.

Preventing distracted driving among college students: Addressing smartphone use.

Based on the National Highway Traffic Safety Association's (NHTSA) Report, fatalities due to distracted driving are on the rise and the highest proportion of fatalities by age group is the 20-29 year old category. To date little has been done to educate college students about the dangers of distracted driving and engage these students in promoting a safe driving culture. Intervening among college students has the potential for making real-time behavior change, can foster a lifetime of safe driving habits among these students, and can help contribute to a culture of safe driving that can be created and sustained through positive messages from peers. The goals of this study were to develop, implement and evaluate a distracted driving presentation for college students to change knowledge, attitude and behavior on distracted driving. A 30-min, multi-media presentation on distracted driving was presented to 19 colleges and universities, totaling 444 college students (mean age 23.7±7.0 years of age, 61% females, 39% males). Students completed three surveys: prior to the workshop (interview 1), immediately after the workshop (interview 2), and 3 months following the workshop (interview 3). We assessed changes between interview 1 and interview 2 and found 15 of the 15 attitude-knowledge based questions significantly improved after the course. In addition, we assessed changes from interviews 1 and 3, and found 11 of the 15 attitude-knowledge based questions maintained their significance. Responses to behavior related questions at three months were also compared to baseline, and significant improvements were found for 12 of the 14 questions. While this study was successful in improving the short-term attitude-knowledge and behaviors on distracted driving, work is needed to sustain (and evaluate) long-term effects.

Relationships Between Caregiver Characteristics and Health-Related Quality of Life Among Youth with Spinal Cord Injury.

Background: Past research has found a relationship between the mental health of parental caregivers and their children with spinal cord injury (SCI), but little is known about how other aspects of caregiver health and functioning impact health-related quality of life (HRQOL) of youth. Objective: The purpose of this study was to explore the importance of caregiver mental health, physical health, burden, and problem-solving skills in relation to children's physical and psychosocial HRQOL. Methods: Forty youths with SCI ages 7 to 17 years completed the PedsQLTM; primary caregivers completed standardized measures of mental and physical health, burden, and problem solving. We evaluated 2 hierarchical linear regression models predicting children's physical and psychosocial HRQOL. Results: The 40 youths were an average of 11.48 years (SD = 3.21), 62.5% were male, and 80% Caucasian. They had been injured an average of 6.90 years (SD = 3.92); 75% had paraplegia, and 61.5% had complete injuries. Most caregivers were mothers (85%), were married (60%), and had at least some college education (87.5%). Univariate analyses revealed that caregiver problem solving alone was related to children's physical HRQOL, and caregiver mental health, burden, and problem solving were related to children's psychosocial HRQOL. Regression analyses controlling for child age and injury level revealed effective caregiver problem solving (P < .01) was significantly related to greater child physical (Model R2 = 0.440) and psychosocial (Model R2 = 0.547) HRQOL. Conclusions: Although relationships should be explored longitudinally with larger samples, results indicate caregiver problem solving may be a reasonable target for intervention to improve HRQOL among youth with SCI.

Patterns of coping strategy use and relationships with psychosocial health in adolescents with spinal cord injury.

OBJECTIVE: To investigate patterns of coping among adolescents with spinal cord injury (SCI). METHODS: Youth aged 13-18 years with SCI completed measures of participation, quality of life (QOL), mental health symptoms, and coping. A hierarchical agglomerative cluster analysis using Ward's method was conducted. Subsequent analyses examined relationships between clusters and psychosocial functioning. RESULTS: 199 youth were an average of 15.95 years (SD = 1.71) at interview and 11.02 years (SD = 5.45) at injury. 56% percent were male, 64% White, and 62% had paraplegia. Four groups of "copers" emerged: ineffective, active, avoidant, and cognitive. Cognitive copers reported significantly less mental health symptomatology and higher QOL, followed by avoidant, active, and ineffective copers. Active copers showed significantly greater participation relative to ineffective, avoidant, and cognitive copers. CONCLUSIONS: These results suggest that coping profiles have meaningful relationships with adjustment. Reliance on cognitive strategies, with low endorsement of other strategies, may be associated with better psychosocial health.

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.

Psychosocial outcomes of children and adolescents with early-onset spinal cord injury and those with spina bifida.

PURPOSE: To describe psychosocial outcomes of children and adolescents with early-onset spinal cord injury (SCI) and spina bifida (SB) and identify differences between them. METHODS: Eighty-three participants had acquired SCI before age 3 years (mean age 10.6 ± 3.8 yrs), and 54 had SB (mean age 11.7 ± 4.1 yrs). The participants completed standardized assessments of participation, quality of life (QOL), anxiety, and depression. Independent-sample t tests and Mann-Whitney tests were used to assess group differences. RESULTS: Participants with SCI reported higher school QOL (P = .016) and lower anxiety with social concerns/concentration (P = .037) than did participants with SB. The subgroup of participants with SCI with paraplegia reported higher school (P = .014) and overall (P = .034) QOL, and they participated in more activities (P = .015) than participants with SB. CONCLUSIONS: Children and adolescents with SCI with paraplegia have greater school and overall QOL and participate in more activities than children and adolescents with SB. Children and adolescents with SB would benefit from increased support at school and in social participation.

Validity of computer adaptive tests of daily routines for youth with spinal cord injury.

OBJECTIVE: To evaluate the accuracy of computer adaptive tests (CATs) of daily routines for child- and parent-reported outcomes following pediatric spinal cord injury (SCI) and to evaluate the validity of the scales. METHODS: One hundred ninety-six daily routine items were administered to 381 youths and 322 parents. Pearson correlations, intraclass correlation coefficients (ICC), and 95% confidence intervals (CI) were calculated to evaluate the accuracy of simulated 5-item, 10-item, and 15-item CATs against the full-item banks and to evaluate concurrent validity. Independent samples t tests and analysis of variance were used to evaluate the ability of the daily routine scales to discriminate between children with tetraplegia and paraplegia and among 5 motor groups. RESULTS: ICC and 95% CI demonstrated that simulated 5-, 10-, and 15-item CATs accurately represented the full-item banks for both child- and parent-report scales. The daily routine scales demonstrated discriminative validity, except between 2 motor groups of children with paraplegia. Concurrent validity of the daily routine scales was demonstrated through significant relationships with the FIM scores. CONCLUSION: Child- and parent-reported outcomes of daily routines can be obtained using CATs with the same relative precision of a full-item bank. Five-item, 10-item, and 15-item CATs have discriminative and concurrent validity.

Overview of psychosocial health among youth with spinal cord injury.

BACKGROUND: Psychosocial health can be conceptualized as being mentally, emotionally, and socially well. Little is known about normative psychosocial development among children and adolescents with spinal cord injury (SCI). OBJECTIVE: To provide a comprehensive overview of psychosocial health of 410 youth with SCI from ages 2 to 18 years. To understand developmental trends, data are presented separately for ages 2-5, 6-12, 13-15, and 16-18 years. METHODS: Youth with SCI were recruited from 1 of 3 pediatric specialty hospitals within a single hospital system. Structured surveys assessing community participation, quality of life (QOL), and mental health (including anxiety and depression) were completed by youth with SCI (for ages 6-18) or their primary caregivers (for ages 2-5). Descriptive statistics were used to assess how patients scored on all standardized measures. RESULTS: Of the 410 participants, 56% were male, 64% were Caucasian, 66% had paraplegia, and 55% had complete injuries. On average, the participants were 12 years old (SD 4.87) at interview and 7.26 years old (SD 5.97) at injury. Psychosocial health outcomes were described for each of the 4 age groups: 2-5 years (n = 52), 6-12 (n = 142), 13-15 (n = 82), and 16-18 (n = 134) years. CONCLUSIONS: As compared to published norms, this sample of youth with SCI seemed to be experiencing decreased levels of community participation and QOL, but also decreased levels of anxiety and depression. These data provide needed information to clinicians regarding how youth with SCI may typically experience psychosocial health and where their patients fit into that typical experience.

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.

Coping in caregivers of youth with spinal cord injury.

This study examined coping among caregivers of youth with spinal cord injuries (SCI). Using a cross-sectional survey study design, 164 caregivers completed a demographics questionnaire and the Brief COPE. Their children, youth with SCI ages 7-18, completed the Kidcope. T-tests were conducted to examine differences in caregiver coping by demographic and injury-related factors. Further, logistic regression models were evaluated to examine predictive relationships between caregiver coping and youth coping. Several demographic and injury-related factors were related to caregiver coping, including caregiver gender, race, and education, as well as youth gender, age at injury, and time since injury. In the logistic regressions, two caregiver coping strategies were related to youth coping: caregiver self-blame coping was related to youth self-criticism, and caregiver behavioral disengagement coping (giving up attempts to cope) was related to youth blaming others coping. The findings suggest that caregiver coping may play a role in the coping of their children, and should be considered when addressing coping among youth with SCI.

Health-related quality of life after pediatric spinal cord injury.

OBJECTIVE: To describe health-related quality of life (HRQOL) among youth with spinal cord injury (SCI), examine agreement between child and caregiver report HRQOL, investigate relationships between HRQOL and demographic, injury and psychological variables. METHODS: Caregivers and youth with SCI completed a pediatric HRQOL measure and mental health measures; injury information was gathered from medical records. RESULTS: One hundred and ninety-seven youth with SCI and their caregivers participated. HRQOL was associated with current age, age at injury, level of injury and child and caregiver anxiety/depression. Child mental health significantly predicted child-report HRQOL (p < .001, f(2)=1.07), whereas child (p < .001, f(2) = 0.098) and caregiver (p < .001, f(2) = 0.277) mental health both significantly predicted caregiver-report HRQOL. Agreement between child-report and caregiver-report was moderate at best, with youth rating their HRQOL as better than their caregivers. CONCLUSION: Mental health of youth and caregivers is critical to HRQOL in pediatric SCI. Interventions to optimize psychological adjustment should be provided to both caregivers and youth.

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.

How does participation of youth with spina bifida vary by age?

BACKGROUND: Youth with disabilities are at risk for decreased participation in community activities. However, little is known about participation at different developmental periods of childhood and adolescence among youth with spina bifida (SB) or whether child, family, and SB-associated factors influence participation. QUESTIONS/PURPOSES: Our cross-sectional study examined participation among youth with SB and assessed how participation differs between youth ages 2-5, 6-12, and 13-18; how participation relates to child (gender) and family (caregiver marital status, education, and employment) characteristics; and how participation relates to SB-related factors (motor level, hydrocephalus, ambulation, medical issues, and bladder/bowel needs). PATIENTS AND METHODS: Sixty-three youth ages 2-18 years and/or their caregivers completed age-appropriate measures of participation for youth with disabilities. The patients had an average age of 9.52 years (SD = 5.22), 83% had a shunt, 34% had a motor level of L2 or higher, and 66% L3 or lower. RESULTS: A comparison of youth ages 2-5 (n = 19), 6-12 (n = 21), and 13-18 (n = 23) revealed older youth participated less in recreational, physical, and skill-based activities. Caregiver employment facilitated participation in social activities. Youth who did not have a shunt participated more often in physical and skill-based activities. Youth without recent major medical issues participated more often in physical and social activities. More caregivers reported bladder and bowel needs as barriers to participation for youth ages 6-12 than those ages 2-5 or 13-18. CONCLUSIONS: Participation of youth with SB varies by age and across child and caregiver factors and should be understood in a developmental and situational context.

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.