The Youth Report Version of the Child and Adolescent Scale of Participation (CASP): Assessment of Psychometric Properties and Comparison With Parent Report

Objective The Child and Adolescent Scale of Participation (CASP) parent report is a brief and valid measure for use with children and youth with chronic conditions/disabilities that has been shown to have good coverage at the chapter level of the‘Activities and Participation’component of the International Classification of Functioning,Disability and Health.The purpose of this research was to assess the psychometric properties of a CASP youth self-report version,to further validate the parent report,and to compare parent and youth reports of youths’ activity and participation. Methods Baseline data from a longitudinal study examining predictors of changes in quality of life for youth with chronic conditions/disabilities were used.CASP data were collected on 409 youth aged 11–17 with various conditions/disabilities using youth and parent reports.Internal consistency and factor structure were examined for both versions using Cronbach’s alpha and exploratory factor analyses.Inter-rater agreement and magnitude of differences between youth and parent report were evaluated using intraclass correlation coefficients and paired t-tests respectively. Gender,age and condition/disability group differences in youth report CASP scores were examined using independent t-tests or analyses of variance. Results Strong internal consistency and internal structure validity was demonstrated for the CASP youth and parent report.The youth report factor structure was similar to the parent report in this and other studies.Youth reported their activity/participation to be significantly higher than did their parents.Significant differences in CASP scores were found among condition/disability groups. Conclusions Findings show that,from a psychometric standpoint,the youth version of the CASP is a promising new self-report measure of activity and participation.As youth perceive their activity and participation levels differently than their parents,it is important to collect data from both sources to obtain a more comprehensive understanding of this aspect of youths’ lives

Maternal Factors and the Emotional and Behavioural Functioning of Adolescents With Chronic Health Conditions

Purpose: This study investigated the association between mothers’ mental health and education and the emotional and behavioural functioning of adolescents with chronic health conditions over time. Methods: Data were drawn from an ongoing study. Study participants (N¼363) were recruited through eight children’s rehabilitation centres. Logistic regression models were estimated. Results: There were significantly reduced odds that girls would display clinical signs of hyperactivity/inattention one year later compared to boys when a maternal mental health condition was present (OR¼0.10; p50.01). Where low maternal education was present, girls were more likely to display peer relationship problems one year later (OR¼3.72; p50.01). For both genders, having a mother with less than a high school education was also associated with conduct problems one year later (OR¼2.89; p50.01). Conclusions: Findings support a link between maternal factors and emotional and behavioural functioning in adolescents with chronic conditions. A holistic and family-centred approach to assessment and service delivery is indicated

Assessing the Psychometric Properties of Both a Global and a Domain-Specific Perceived Quality of Life Measure When Used with Youth Who Have Chronic Conditions

The purpose of this paper was to assess the psychometric properties of the Students’ Life Satisfaction Scale (SLSS) and the Brief Multidimensional Students’ Life Satisfaction Scale (BMSLSS) when used with youth who have chronic conditions. Baseline data from a longitudinal study examining predictors of changes in perceived quality of life (PQOL) for youth with chronic conditions were used. SLSS and BMSLSS data were collected on over 400 youth aged 11–17 using youth self-report and parent proxy-report versions. Internal consistency, convergent validity, and factor structure were examined for both versions. Extent of agreement and magnitude of differences between youth and parent report were evaluated. Finally, gender, age, and condition group differences in youth report scores were examined for the SLSS and BMSLSS. Strong internal consistency was demonstrated for the youth and parent reports of both measures. As with normative samples, a single factor structure was found for youth and parent reports of the BMSLSS. However, both youth and parent reports of the SLSS had a two-factor structure: one consisting of five positively worded items, and the other, two negatively worded items. Youth reported their PQOL to be significantly higher than did their parents. Significant differences in PQOL scores for the youth report were not found by age, gender, or conditions. Findings show that, from a psychometric standpoint, the BMSLSS (both youth and parent report) is a promising measure of PQOL for use in population-based research with youth who have chronic conditions. The SLSS may need to be revised to exclude negative items when used with this population of youth

Interrelated Processes toward Quality of Life in Survivors of Childhood Cancer: A Grounded Theory

Past research has not adequately addressed the quality of life (QOL) of survivors of childhood cancer. The purpose of this study was to understand how QOL is experienced for individuals who have survived childhood cancer. Specific research questions included: (a) How do childhood cancer survivors define the concept of QOL and (b) What processes do childhood cancer survivors go through regarding their QOL? Researchers used grounded theory to analyze in-depth interviews conducted with eight survivors. Survivors use a process of specific action strategies and intervening conditions to manage impacts and effects, resulting in life enjoyment, or good QOL. The identification of this process has led to an emergent theory titled Interrelated Processes toward Quality of Life Theory

Applying the ICF Framework to Study Changes in Quality-of-Life for Youth With Chronic Conditions

Objective: The objective of this paper is to describe how the ICF framework was applied as the foundation for a longitudinal study of changes in quality-of-life (QoL) for youth with chronic conditions. Method: This article will describe the study’s aims, methods, measures and data analysis techniques. It will point out how the ICF framework was used—and expanded upon—to provide a model for studying the impact of factors on changes in QoL for youth with chronic conditions. Further, it will describe the instruments that were chosen to measure the components of the ICF framework and the data analysis techniques that will be used to examine the impact of factors on changes in youths’ QoL. Conclusions: Qualitative and longitudinal designs for studying QoL based on the ICF framework can be useful for unraveling the complex ongoing inter-relationships among functioning, contextual factors and individuals’ perceptions of their QoL

Quality of Life and Self-Determination: Youth with Chronic Health Conditions Make the Connection

While optimizing quality of life(QOL) is a key goal of rehabilitation care,no previous study has reported on what ‘QOL’ means to youth with chronic health conditions. In addition, no qualitative studies have explored the relationship between QOL and self-determination(SD). Objectives of this qualitative study were to examine: what the terms ‘quality of life’ and ‘self-determination’ mean to youth with chronic conditions; the factors these youth think are linked with these concepts; the relationship they see between concepts, the types of future goals youth have and how they view the connection between their SD and these goals. A descriptive methodology was used. A purposive sample of 15 youth aged 15 to 20 years was obtained. Youth had cerebral palsy, a central nervous system disorder, or autism spectrum disorder. Semi-structured interviews were conducted first, followed by a focus group. Line-by-line coding of transcripts was completed, codes were collapsed into categories, and themes identified. Participants viewed QOL as an overarching personal evaluation of their life, and use

Three-year Trajectories of Global Perceived Quality of Life for Youth With Chronic Health Conditions

Purpose Objectives of this longitudinal study were to examine 3-year trajectories of global perceived quality of life (QOL) for youth with chronic health conditions, as obtained from youth and parent reports, and to identify personal and environmental factors associated with the trajectory groups for each perspective. Methods Youth with various chronic conditions aged 11–17 years and one of their parents were recruited from eight children’s treatment centers. Latent class growth analysis was used to investigate perceived QOL trajectories (separately for youth and parent perspectives) over a 3-year period (four data collection time points spaced 12 months apart). Multinomial logistic regression was employed to identify factors associated with these trajectories. Results A total of 439 youth and one of their parents participated at baseline, and 302 (69 %) of those youth/parent dyads completed all four data collection time points. Two QOL trajectories were identified for the youth analysis: ‘high and stable’ (85.7 %) and ‘moderate/low and stable’ (14.3 %), while three trajectories were found for the parent analysis: ‘high and stable’ (35.7 %), ‘moderate and stable’ (46.6 %), and ‘moderate/low and stable’ (17.7 %). Relative to the ‘high and stable’ groups, youth with more reported pain/other physical symptoms, emotional symptoms, and home/community barriers were more likely to be in the ‘moderate and stable’ or ‘moderate/low and stable’ groups. Also, youth with higher reported self-determination, spirituality, family social support, family functioning, school productivity/engagement, and school belongingness/safety were less likely to be in the ‘moderate and stable’ or ‘moderate/low and stable’ groups, compared to the ‘high and stable’ groups. Conclusion Findings suggest that youth with chronic conditions experience stable global perceived QOL across time, but that some individuals maintain stability at moderate to moderate/low levels which is related to ongoing personal and environmental influences. Potential benefits of universal strategies and programs to safeguard resilience for all youth and targeted interventions to optimize certain youths’ global perceived QOL are indicated

Youth with Disabilities Talk About Spirituality:A Qualitative Descriptive Study

There is little known about what spirituality means for youth with disability or about the potential relevance of youths’ spirituality in pediatric rehabilitation. This study explored perceptions of spirituality for youth with disabilities. Using a qualitative descriptive methodology, we examined the lived experiences of eighteen youth ages 11-20 years with disabilities including cerebral palsy, central nervous system disorder or autism spectrum disorder. In individual interviews, followed by a focus group, youth identified key spiritual themes – the importance of their beliefs, personal sources of comfort and strength, finding purpose in helping others, significance of personal connections, and strengths-based perspectives on disability. This study makes a unique contribution by informing health care professionals about the relevance of youths’ spirituality in service delivery

A Preliminary Evaluation of a School Support Program for Children with Autism Spectrum Disorders: Educator and School Level Outcomes and Program Processes

This is a preliminary evaluation of a program aimed at providing training, con-sultation, and resource materials to educators in public schools in order to build the capacity of those educators and schools to meet the needs of students with aut-ism spectrum disorders. Educator and school level outcomes were evaluated and information about program processes was gathered. One hundred and ninety-two educators completed study measures in the fall and spring of one school year. Educators receiving no services were compared on outcomes to educators who received services. Significant main effects of program condition in favour of bene-ficial effects of the program were found for two school level outcomes. On average, educators were satisfied with the program and found the various com-ponents of the service useful. Recommendations for future service delivery and research are discussed

ICF-based Functional Components and Contextual Factors as Correlates of Perceived Quality of Life for Youth With Chronic Conditions

Purpose: To explore International Classification of Functioning, Disability and Health (ICF)-based functional components and contextual factors associated with perceived quality of life (QOL) for youth with chronic conditions from the perspective of youth and parents. Method: Baseline data were obtained from a longitudinal study examining predictors of changes in perceived QOL for youth with chronic conditions. 439 youth aged 11–17 (and one of their parents) completed a questionnaire. Standardized tools were used to measure youth functioning, contextual factors and perceived QOL. Multivariate linear regression analyses, controlling for socio-demographic and health information, were conducted to explore correlations among youth functioning/contextual factors and youth and parent perceptions of youth QOL. Results: Significant (p0.05) negative correlates with both youth and parent perceptions of youth QOL included pain/other physical symptoms and emotional symptoms. Significant factors positively correlated with youth and parent perceptions of youth QOL included school productivity and spirituality. Other significant positive correlates of youth perspectives were family social support and school belongingness/safety. Family functioning was positively correlated, and youth social anxiety and environmental barriers were negatively correlated, with parent perceptions of youth QOL. Conclusions: This study provides preliminary evidence of factors upon which services aimed at improving perceived QOL of youth with chronic conditions could be based