Current Experiences and Future Expectations for Physical Activity Participation: Perspectives of Young People with Physical Disabilities and Their Rehabilitation Clinicians.

Purpose: Researchers investigated current physical activity experiences of youth with physical disabilities and expectations for continued participation as they transition to adult services. Method: Youth (n = 6) and clinicians (n = 7) from a rehabilitation center participated in two separate focus groups. Researchers used inductive thematic analysis. Results: Four themes emerged among youth: "good for your health"; "motivation is key"; "social opportunities in safe environments"; "wanting to stay active." Among clinicians, five themes arose: "added therapeutic benefits with participation"; "development as individuals through physical activity"; "inclusive and supportive environments"; "parents as advocates"; "transitioning to adult services is important." Conclusions: Themes across focus groups were comparable. Participants expressed positive experiences for youth attending a dedicated adapted fitness center. To facilitate current and future physical activity in adulthood for youth with physical disabilities in integrated settings, the following are warranted: accessible buildings, trained staff, adapted equipment, and positive attitudes toward disability.

Social anxiety symptoms among youth with chronic health conditions: trajectories and related factors.

Purpose: This study explored three-year trajectories of social anxiety symptoms among youth with chronic health conditions and investigated factors influencing those trajectories.Methods: Participants (N = 439) were recruited from eight pediatric rehabilitation centers. The Social Anxiety Scale for Children-Revised measured social anxiety across four time points. Latent Class Growth Analysis was used to study trajectories and logistic regression to identify related factors.Results: A three-class solution was supported: a "high anxiety and stable" group (17.1%), a "moderate anxiety and stable" group (44.4%), and a "low anxiety and stable" group (38.5%). Youth in the "moderate and stable" group were less likely to be male compared to the "low and stable" group. Youth in the "high and stable" group were more likely to have greater cognitive symptoms and less likely to have higher levels of social participation compared to the "low and stable" group. Youth in both the "high and stable" and "moderate and stable" groups were less likely to have high support from classmates or close friends compared to the "low and stable" group. Moreover, both the "high and stable" and "moderate and stable" groups were less likely to have positive family functioning.Conclusion: Youth with chronic conditions belonging to "high and stable" and "moderate and stable" social anxiety trajectories can be distinguished from those in a "low and stable" trajectory using personal, functional, and environmental level variables.Implications for RehabilitationYouth with chronic health conditions are at risk of developing and maintaining moderate to high levels of social anxiety symptoms as they move through adolescence.Compared to youth with "low and stable" social anxiety, those with "moderate and stable" social anxiety are less likely to be male, have high peer support or high family functioning.Compared to youth with "low and stable" social anxiety, those with "high and stable" social anxiety are more likely to have greater cognitive symptoms, and less likely to have high social participation, high peer support, or high family functioning.Rehabilitation and other professionals should not only consider factors that are functional in nature; they should also consider personal and environmental level factors when supporting youth with chronic health conditions who experience social anxiety symptoms.

Understanding quality of life within occupational therapy intervention research: A scoping review.

INTRODUCTION: There is little consensus regarding the meaning of quality of life (QOL) within occupational therapy literature. Measurement of QOL has varied in both research and practice. This scoping review explored the definitions and measures used within occupational therapy quantitative intervention research to evaluate QOL as an outcome. METHODS: The review was completed by searching six databases using occupational therapy-related and QOL-related terms. Data were extracted from each article and authors performed descriptive statistics to establish trends for both definitions and measures. RESULTS: Eighteen publications met the inclusion criteria. Seven articles included a definition of QOL. Most authors defined QOL as a multidimensional construct, comprised of varying domains. Fourteen different standardised measures and two non-standardised measures were utilised. CONCLUSIONS: A clear conceptualisation of QOL that incorporates occupational therapy values such as client-centredness and holism is needed to advocate for the profession's role in health care and to encourage the development of suitable outcome measures.

Using eye-tracking technology for communication in Rett syndrome: perceptions of impact.

Studies have investigated the use of eye-tracking technology to assess cognition in individuals with Rett syndrome, but few have looked at this access method for communication for this group. Loss of speech, decreased hand use, and severe motor apraxia significantly impact functional communication for this population. Eye gaze is one modality that may be used successfully by individuals with Rett syndrome. This multiple case study explored whether using eye-tracking technology, with ongoing support from a team of augmentative and alternative communication (AAC) therapists, could help four participants with Rett syndrome meet individualized communication goals. Two secondary objectives were to examine parents' perspectives on (a) the psychosocial impact of their child's use of the technology, and (b) satisfaction with using the technology. All four participants were rated by the treating therapists to have made improvement on their goals. According to both quantitative findings and descriptive information, eye-tracking technology was viewed by parents as contributing to participants' improved psychosocial functioning. Parents reported being highly satisfied with both the device and the clinical services received. This study provides initial evidence that eye-tracking may be perceived as a worthwhile and potentially satisfactory technology to support individuals with Rett syndrome in communicating. Future, more rigorous research that addresses the limitations of a case study design is required to substantiate study findings.

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 used terms such as satisfaction and happiness to describe the concept. Factors related to QOL included: 'relationships', 'supportive environments', 'doing things', 'personal growth and moving forward', and 'understanding of self/acceptance of disability'. Participants described SD in such terms as confidence and motivation. Contributors to SD were: 'personal strengths', 'interdependence', and 'functional independence'. SD was considered important to QOL. Youth goals were reflective of the goals of most adolescents. They identified the importance of having key goals that were of personal interest to them. This study adds consumer-based information to the debate over the meaning of QOL. Service providers and decision makers should be aware of the factors that youth feel impact their QOL and SD, the importance of SD to youth QOL, and of SD to future goals, and consider this information when tailoring therapeutic interventions.

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.

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 (N = 363) 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 (OR = 0.10; p < 0.01). Where low maternal education was present, girls were more likely to display peer relationship problems one year later (OR = 3.72; p < 0.01). For both genders, having a mother with less than a high school education was also associated with conduct problems one year later (OR = 2.89; p < 0.01). 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. Implications for Rehabilitation When conducting clinical assessments, service providers should consider associations between maternal education and mental health and the emotional and behavioural functioning of adolescents with chronic health conditions. A holistic and family-centred approach to assessment and service delivery is indicated to ensure adolescents with chronic conditions and their families receive support for interrelated needs.

The Child and Adolescent Scale of Environment (CASE): Further validation with youth who have chronic conditions.

OBJECTIVE: To further validate the Child and Adolescent Scale of Environment (CASE). METHODS: Baseline data (n = 430) were analyzed from a longitudinal study on quality of life for youth with chronic conditions ages 11-17 in Ontario, Canada. Internal consistency and structure, and convergent and discriminant validity were examined via Cronbach's alpha (α), exploratory factor analyses, correlation analyses and ANOVA. RESULTS: The CASE had high internal consistency (α = 0.89). A three-factor solution was produced with 55% variance explained: (1) Community/Home Resources, (2) School Resources and (3) Physical Design/Access). CASE total and factor scores were significantly correlated with scores from measures of impairment and participation (i.e. youth with more problematic environments had more severe impairment and more restricted participation). Significant differences in CASE scores existed for primary condition and impairment severity, but not for age or gender. CONCLUSION: Results provide additional CASE validation evidence. Further testing is needed with more diverse and representative samples.

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 (p ≤ 0.05) 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. IMPLICATIONS FOR REHABILITATION: This study supports the utility of clinicians assessing the QOL of youth with chronic conditions in terms of youths' and their families' perspectives. This is the first study to identify key factors that impact perceived QOL at one point in time across a group of youth with chronic conditions, offering clinicians a main starting-point for considering youths' strengths and needs and the supportiveness of the environment. Findings suggest youth and families would benefit from the availability of services that encompass the full scope of the ICF.

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.

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.

The ICF model of functioning and disability: incorporating quality of life and human development.

OBJECTIVE: Since its 2001 publication, a number of issues have been raised about the ICF. The World Health Organization anticipated the ICF would undergo a continuous process of revision. This paper adds to this process. METHOD: This article describes how the ICF framework shares a number of tenets with a systems perspective. An argument is built for why the ICF model of functioning and disability should be expanded to include the concepts of quality of life and human development. A modified model is presented that depicts a person's life quality and his/her potential for development as the outcomes and processes that arise from the interconnected, ever-changing influences of health, functioning and contextual factors. CONCLUSIONS: A modified ICF model based on a systems perspective depicts a holistic view that acknowledges health, functioning, life quality and development are intertwined and are essential concepts to consider in the lives of all people.

Predictors of Change Over Time in the Activity Participation of Children and Youth with Physical Disabilities.

Little is known about predictors of change over time in the intensity of the leisure and recreational activity participation of children with physical disabilities. This study reports data from 402 children/youth with physical disabilities (216 boys and 186 girls), ages 6 to 15, collected on three occasions over a 3-year period. Latent growth curve modeling was used to determine the significant child, family, and community predictors of change in the intensity of their participation in five types of activities (recreational, active physical, social, skill-based, and self-improvement). Differences in predictors were examined for boys versus girls, and older versus younger children. Significant predictors of change were found only for recreational and active physical activities. The findings indicate that factors associated with change in participation intensity are dependent on the type of activity, and vary as a function of children's sex and age. Implications for research and service delivery are discussed, including the importance of a contextualized, holistic, and developmental approach to intervention.

Quality of life in survivors of childhood cancer: a systematic review of the literature (2001-2008).

PURPOSE: The purpose of this paper was to provide a comprehensive, contemporary systematic review of studies that have examined the quality of life (QOL) of survivors of childhood cancer in order to extend upon the findings of earlier reviews. MATERIALS AND METHODS: A review was conducted that used the databases MEDLINE, PubMed, PsycINFO, and CINAHL. Articles were included that were published in English between 2001 and 2008 and used quantitative measures and statistical tests to compare health-related quality of life (HRQL) or QOL of childhood cancer survivors with population norms or matched comparison groups. RESULTS: Thirteen studies were identified. Findings were contradictory across studies, yet by and large, reflected those of past reviews. In general, survivors' scores on subscales representing physical, psychological, and social domains of HRQL/QOL were similar to comparisons, with the greatest differences being in physical well-being. Key personal and environmental factors were negatively correlated with the three domains across studies for survivors including: older age at diagnosis, longer time since diagnosis, certain cancer and treatment types, female gender, and a number of socioeconomic factors. CONCLUSIONS: Lack of comparability across studies remains a problem due to wide variation in study focus and designs. Conceptual and methodological issues include: use of numerous HRQOL and QOL measures, lack of distinction between conceptualization and measurement of HRQL and QOL, lack of initial qualitative input from survivors about QOL, little examination of the influence of environmental factors on QOL, little attention to survivors' satisfaction with life quality, use of small heterogeneous samples, and need for population-based longitudinal studies.

The ICF-CY and Goal Attainment Scaling: benefits of their combined use for pediatric practice.

PURPOSE: There is much heterogeneity and disconnect in the approaches used by service providers to conduct needs assessments, set goals and evaluate outcomes for clients receiving pediatric rehabilitation services. The purpose of this article is to describe how the International Classification of Functioning, Disability and Health-Child and Youth (ICF-CY) can be used in combination with Goal Attainment Scaling (GAS), an individualised measure of change, to connect the various phases of the therapeutic process to provide consistent clinical care that is family-centred, collaborative, well directed and accountable. METHOD: A brief description of both the ICF-CY and GAS as they pertain to pediatric rehabilitation is provided as background. An explanation is given of how the ICF-CY offers a framework through which clients, families and service providers can together identify the areas of clients' needs. In addition, the article discusses how the use of GAS facilitates translation of clients' identified needs into distinct, measurable goals set collaboratively by clients, their families and service providers. Examples of integrated GAS goals set for the various components of the ICF-CY are provided. The utility of GAS as a measure of clinical outcomes for individual clients is also discussed. CONCLUSIONS: Used in combination, the ICF-CY and GAS can serve to coordinate, simplify and standardise assessment and outcome evaluation practices for individual clients receiving pediatric rehabilitation services.

A framework of operating models for interdisciplinary research programs in clinical service organizations.

A framework of operating models for interdisciplinary research programs in clinical service organizations is presented, consisting of a "clinician-researcher" skill development model, a program evaluation model, a researcher-led knowledge generation model, and a knowledge conduit model. Together, these models comprise a tailored, collaborative approach to enhancing research-informed practice in community-based clinical service organizations. The models place different degrees of emphasis on the development of research-related skills in practitioners, the generation of knowledge tailored to clinical practice, and knowledge sharing. The nature, philosophical basis, roles of research staff members, outputs and impacts, and strengths and limitations of each model are described, in the context of a long-standing, interdisciplinary research program in a children's rehabilitation service organization. The use of the model framework as a tool for the design of interdisciplinary, community-based research programs is discussed.

Employing the International Classification of Functioning, Disability and Health to enhance services for children and youth with chronic physical health conditions and disabilities.

PURPOSE: In 2001, the World Health Organization published the International Classification of Functioning, Disability and Health (ICF). The ICF is just beginning to be used in a variety of clinical and research settings in Canada and worldwide. The purpose of the present article is to describe the initial use of the ICF at an Ontario children's rehabilitation centre, and to consider further uses both within and outside the centre for enhancing services for children and youth with chronic physical health conditions and disabilities, as well as for their families. METHOD: A description is provided on how the ICF has been used at the centre to guide clinical thinking and practice, and to justify and steer research directions. Plans underway to use the ICF to collect and record functional data at the centre are also described. Finally, recommendations for the use of the ICF to enhance communication among child health professionals across service settings are provided. CONCLUSIONS: Used in conjunction with the International Classification of Diseases - Tenth Revision, the ICF's conceptual framework and classification system shows great promise for enhancing the quality of services for children with chronic conditions and their families. This information may assist paediatric specialists, other child health professionals, researchers and administrators to use the ICF in similar settings. It may also stimulate exploration of the use of the ICF for general paediatricians and other service providers in the larger community.

An evaluation of the "Youth en Route" program.

Youth En Route (YER) is a transition program for youth and young adults with multiple disabilities. It offers a multifaceted approach that includes self-discovery, skill development, and community experience. Underlying the service delivery model is a philosophy of self-determination. This program evaluation measured the self-determination skills, sense of personal control over life choices, and community participation of 34 youth prior to and one year following their involvement with YER. Youth reported statistically and clinically significant improvement from pretest to posttest with respect to both self-determination and sense of personal control. Moreover, youth reported spending significantly more time at posttest than at pretest engaged in volunteer/work activities and community leisure activities. On average, youth reported high satisfaction with YER services. Practical and research implications are discussed.

An evaluation of the paediatric acquired brain injury community outreach programme (PABICOP).

PRIMARY OBJECTIVE: To examine the utility of a coordinated, family/community-focused programme (PABICOP) vs. a standard approach for improving outcomes for children with ABI and their families. RESEARCH DESIGN: Pre-test-post-test design, with comparison group and follow-up. METHODS AND PROCEDURES: Ninety-six children (64 children receiving PABICOP services and 32 children receiving standard care) participated in the study. Measures were completed at baseline and 3 and 12 months later. MAIN OUTCOMES AND RESULTS: Parents/caregivers with more than 10 contacts with PABICOP scored significantly higher on an ABI knowledge quiz than either parents/caregivers with 10 contacts or less or the comparison group at post-test and follow-up. Parents/caregivers with 10 contacts or less with PABICOP reported significantly greater improvements in children's school and total competence on the CBCL than either parents/caregivers with more than 10 contacts or the comparison group at post-test and follow-up. CONCLUSIONS: PABICOP may be more useful for enhancing knowledge of ABI for parents/caregivers and for integrating children into the community over a 1-year period than a standard approach. The amount of service received appears to influence outcomes.

School-based occupational therapy for children with fine motor difficulties: evaluating functional outcomes and fidelity of services.

Consultative occupational therapy services are becoming widely used in the school environment. However, few studies have evaluated the utility of and the process by which these services are delivered. This study examined whether the written communication and fine motor skills of 23 children with fine motor difficulties improved after receiving school-based occupational therapy from a program whose mandate was to deliver services according to a consultation model of service delivery. In addition, the study assessed the process of service delivery, including treatment fidelity, or the extent to which consultation services were implemented as intended. Statistically significant and practically meaningful improvement was found in written communication on the Vineland Adaptive Behavior Scales-Classroom Edition (VABS-C) and School Functional Assessment-Version 3.0 (SFA), and in fine motor skills on the SFA, but not on the VABS-C. An examination of the service delivery process revealed that therapists deviated from a purely consultative model, with 86% providing some direct therapy to children. Parents were mostly satisfied with services received, whereas teachers were indifferent or somewhat dissatisfied. Treatment fidelity is taken into consideration when discussing study findings. Recommendations to enhance school-based occupational therapy services delivered according to a primarily consultative model, and suggestions for future research, are provided.