A systematic review of how spinal cord injury impacts families.

PURPOSE/OBJECTIVE: This systematic review synthesizes the existing literature on the impact of spinal cord injury (SCI) on families, including parenting, marital relations, and caregivers' psychological adjustment. RESEARCH METHOD/DESIGN: Seven databases were searched for relevant peer-reviewed studies. Dissertations, chapters, editorials, and review articles were excluded. Sixty-six studies that examined SCI's impact on caregivers and families were included. RESULTS: The review included 55 quantitative studies, 10 qualitative studies, and one study that utilized both methodologies. Among the quantitative psychosocial adjustment studies, as well as the qualitative studies, lack of social support was associated with an increased sense of burden, stress, depression, anxiety, and poorer physical health in caregivers. In the family relationship studies (n = 7), few significant differences were found in family functioning. Marital relationship studies (n = 12) frequently examined intimacy (sex, partner affirmations, and emotional support) as an important facet for determining positive or negative outcomes when one partner had SCI. However, divorce rates appeared to increase over time postinjury. Though few studies investigated caregiver needs and interventions (n = 5), needs for social support and information were identified, and several interventions (e.g., family education, more social support, and problem-solving training) were beneficial for promoting caregivers' psychosocial adjustment. CONCLUSIONS: SCI significantly impacts caregivers' sense of burden and psychological distress, with major implications for family functioning and caregivers' physical, mental, and social health. These issues occurred internationally and endured over time. Findings indicated the need for focused interventions to support caregivers' psychosocial adjustment after SCI. (PsycInfo Database Record (c) 2022 APA, all rights reserved).

Dissemination and use of the professional standards of practice for psychologists, social workers, and counselors in spinal cord injury rehabilitation.

Objective: To determine the level of awareness and utilization of the Professional Standards of Practice for Psychologists, Social Workers, and Counselors in Spinal Cord Injury Rehabilitation, 4th Edition (The Standards) by members of professional organizations representing psychologists, social workers, and licensed professional counselors (PSWC) working in spinal cord injury (SCI) rehabilitation. Participants: Respondents belonged to members of professional organizations representing PSWC working in SCI rehabilitation, which included ASCIP (76%), APA's Division 22 (37%), ASIA (23%), USA (14%), PVA (12%), AVAPL (11%) and CRCC (3%). Method: Responses to an online questionnaire were solicited via email. Results: 63% of those that responded were aware of The Standards. Of those, (79%) had read all or a portion of The Standards. Colleagues were the most common source of awareness, followed by email announcements. Conclusions: The Standards are being used (in order of frequency) to improve clinical work, improve treatment efficacy, orientation of new staff, confirm current practice, education, advocacy, and other ways.

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).

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.

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.

Latent class subtyping of attention-deficit/hyperactivity disorder and comorbid conditions.

OBJECTIVE: Genetic studies of attention-deficit/hyperactivity disorder (ADHD) generally use discrete DSM-IV subtypes to define diagnostic status. To improve correspondence between phenotypic variance and putative susceptibility genes, multivariate classification methods such as latent class analysis (LCA) have been proposed. The aim of this study was to perform LCA in a sample of 1,010 individuals from a nationwide recruitment of unilineal nuclear families with at least one child with ADHD and another child either affected or clearly unaffected. METHOD: LCA models containing one through 10 classes were fitted to data derived from all DSM-IV symptoms for ADHD, oppositional defiant disorder, and conduct disorder (CD), as well as seven items that screen for anxiety and depression from the National Initiative for Children's Healthcare Quality Vanderbilt Assessment Scale for Parents. RESULTS: We replicated six to eight statistically significantly distinct clusters, similar to those described in other cross-cultural studies, mostly stable when comorbidities are included. For all age groups, anxiety and depression are strongly related to Inattentive and Combined types. Externalizing symptoms, especially CD, are strongly associated with the Combined type of ADHD. Oppositional defiant disorder symptoms in young children are associated with either conduct disorder or anxiety-related symptoms. CONCLUSIONS: Methods such as LCA allow inclusion of information about comorbidities to be quantitatively incorporated into genetic studies. LCA also permits incorporation of milder but still impairing phenotypes than are allowed using the DSM-IV. Such methods may be essential for analyses of large multicenter datasets and relevant for future clinical classifications. This population-based ADHD classification may help resolve the contradictory results presented in molecular genetic studies.

Review: Genetics of attention deficit/hyperactivity disorder.

OBJECTIVE: The intent of this review is to provide an overview for the practicing psychologist/psychiatrist regarding the complexities of and the most recent advances made in the study of the genetic basis of attention-deficit/hyperactivity disorder (ADHD). METHODS: We review a variety of concepts including: (a) complexities involved in studying the genetics of ADHD, (b) evidence for a primarily genetic component of ADHD, (c) evidence suggesting that there are only a few genes with major effects contributing to ADHD, (d) identification of the best candidate genes, (e) linkage analysis for the identification of novel candidate genes, and (f) data on gene-environment interactions. RESULTS: It is now generally accepted that ADHD has a biological and even primarily genetic basis. However, despite the identification of several candidate genes, none of them seems to have a substantial effect and the exact etiology underlying ADHD has remained elusive. Genome-wide linkage analysis can help in the identification of novel candidate genes. While several independent groups have initiated these studies, we await further details and specific genes from fine-mapping studies. Most recently, researchers have been trying to identify gene by environment interactions to help understand ADHD. Replication of positive findings will be essential in teasing out these combinatorial influences. CONCLUSIONS: Ideally, one day specific genes with major effects and specific risk factors with which they interact will be identified and we will be able to implement personalized medicine. Knowledge of such genes will allow us to identify specific diagnostic biological markers. In addition, defining the target genes is the first step in developing novel drug therapies to treat the ADHD symptoms that lead to impairment. Furthermore, such markers could also identify at risk individuals at a younger age in order to implement treatments sooner to decrease the severity of ADHD symptoms or even to prevent future ADHD symptomatology.

Increased prevalence of ADHD in Turner syndrome with no evidence of imprinting effects.

BACKGROUND: Turner syndrome (TS) results from the loss of part or all of one X chromosome in females. It can result in short stature, various dysmorphic findings, and difficulties with psychosocial adjustment. Girls with TS have previously been found to exhibit increased levels of hyperactivity and inattention. However, no studies have assessed whether individuals with TS meet strict (DSM-IV) criteria for attention-deficit/hyperactivity disorder (ADHD). OBJECTIVE: We looked at the prevalence of ADHD in girls with TS and evaluated the contribution of imprinting on cognitive performance (IQ) and ADHD. METHODS: We tested 50 girls with TS for ADHD, IQ, academic performance, and parental origin of the X chromosome. RESULTS: We report an 18-fold increase in the prevalence of ADHD in girls with TS (24%) compared with girls in the general population (1.3%) (p < .01) and a 4.8 fold increase when compared with boys and girls in the general population (5%) (p < .05). In contrast to previous reports, our molecular studies in females with 45,X also showed no association between IQ scores and the parental origin of the intact X chromosome. CONCLUSIONS: We find an increased prevalence of ADHD in girls with TS but no evidence for imprinting effects for cognitive performance.