Towards a paradigm shift in pediatric rehabilitation: accelerating the uptake of evidence on participation into routine clinical practice.

PURPOSE: Evidence for the importance of focusing on participation to promote health and wellbeing in childhood-onset disability exists, but practice is slow to change. This paper provides a knowledge translation roadmap to accelerate uptake of participation evidence into day-to-day practice. MATERIALS AND METHODS: A structured roadmap to guide knowledge translation initiatives for implementing participation-based practices in co-creation with service users was developed based on elements from: the Five-factorframework for predicting implementation outcomes, the Cultural Cone framework, and the Knowledge-to-Action model. RESULTS: Guiding principles paired with examples of multi-component knowledge implementation strategies to facilitate readiness for change by stakeholders at the micro (e.g., client/family, service providers), meso (e.g., administrators within organisations such as rehabilitation centres, hospitals, schools) and macro (e.g., local and governmental policy, regulatory bodies) levels are introduced. Solution-based strategies are provided to facilitate "readiness to change" for each stakeholder group. The strategies are examples for successful implementation of evidence-based interventions/approaches that can be contextualized across settings. CONCLUSIONS: The knowledge translation roadmap can assist children and families, service providers, administrators, and policymakers to bridge existing knowledge-to-practice gaps surrounding participation. Partnering and collaborating through a "family-clinician-manager-community leader-policymaker" synergy is key for achieving strategic practice change focussed on participation.Implications for RehabilitationSound evidence surrounding the topic of participation, including effective assessments and interventions, is available and ready for use.Shifting towards participation-focused practices for children and youth with disabilities requires a systemic multi-level KT approach.Our Participation-KT roadmap, comprised of a framework and a list of principles and strategies for implementation, can be used to guide all stakeholders to foster a shift in practice.Forming partnerships and working collaboratively with all stakeholders is key for successful implementation.

The contribution of social cognition in predicting social participation following moderate and severe TBI in youth.

Youth with moderate or severe traumatic brain injury (TBI) are at risk for reduced social participation after the injury, and the contribution of social cognition to these changes in functioning has been little studied. This study aimed to examine social participation and to measure the contribution of social and non-social cognitive functions to social participation impairment in youth (ages 12-21) who sustained moderate or severe TBI. Youth with TBI (n = 23) were compared to typically developing (TD) controls on self- and parent-rated social participation questionnaires. Direct testing of social cognition (mentalising, social knowledge, emotion recognition) and higher order cognitive abilities (intellectual abilities, attention and executive functions) was also conducted. Significant differences were found between the TBI participants and TD controls on social participation measures. Mentalising and problem-solving abilities revealed to be significant correlates of social participation as reported by youth with brain-injury and their parents. Overall, these results corroborate previous findings by showing that social participation is significantly reduced after TBI, and further shows that mentalising, which is not always considered during rehabilitation, is an important contributing factor. In addition to executive function measures, social cognition should therefore be systematically included in assessment following youth TBI for intervention and prevention purposes.

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.

School participation, supports and barriers of students with and without disabilities.

BACKGROUND: We compared school participation patterns of students ages 5-17 with and without disabilities and examined whether features of the school environment were perceived to help or hinder their participation. METHODS: Parents (n = 576) residing in the USA and Canada completed the Participation and Environment Measure for Children and Youth (PEM-CY) via the internet. RESULTS: Parents of students with disabilities reported that their children participated less frequently in school clubs and organizations and getting together with peers outside the classroom and that they were less involved in all school activities. Parents of students with disabilities also were significantly more likely to report that features of the environment hindered school participation and that resources needed to support their child's participation were not adequate. CONCLUSIONS: Parents of students with disabilities report that their children are participating less in important school-related activities. Barriers limiting school participation include features of the physical and social environment as well as limited resources.

Domains of a TBI minimal data set: community reintegration phase.

Efforts to establish a minimal data set for the period of community integration after traumatic brain injury (TBI) have been the focus of a working group of leading researchers, clinicians and advocates attending the Galveston Brain Injury Symposium in 2001 and 2002. The purpose of the data set is to increase the consistency and interpretability of TBI research and programme evaluation by providing a common set of measures to document key aspects of community integration. It is intended to be sensitive to intervention, comprehensive, reflect satisfaction and outcome and promote future treatment/therapy. In deciding on the components of a minimal data set, the tri-partite model of outcomes was adopted (initially employed in psychotherapy, adapted to TBI) which focuses on the needs of the individual, society and the health provider. Scales are recommended for the respective components of the model.

Team collaboration: a case study of an early intervention team.

The study described in this article sought to examine the workings of an interdisciplinary team as a research entity and as a service provider. There were two levels of analysis in the study: the process of collaborating on the research and the results of the research observation of an interdisciplinary team in a clinical setting. An interdisciplinary research team studied the interaction of a single clinical team over a 6-month period working with one child in a hospital-based early intervention program. The data were collected through intensive interviews, direct observations of the family and team members, and selected videotaping of team meetings. Qualitative data analysis methods were used, and five themes emerged: who takes the lead, the classroom as a way station, we like our freedom but..., who is giving and who is taking advice, and communication comes in few forms.

Effects of a weighted vest on attention to task and self-stimulatory behaviors in preschoolers with pervasive developmental disorders.

OBJECTIVE: This study examined the effectiveness of using a weighted vest for increasing attention to a fine motor task and decreasing self-stimulatory behaviors in preschool children with pervasive developmental disorders (PDD). METHOD: Using an ABA single-subject design, the duration of attention to task and self-stimulatory behaviors and the number of distractions were measured in five preschool children with PDD over a period of 6 weeks. RESULTS: During the intervention phase, all participants displayed a decrease in the number of distractions and an increase in the duration of focused attention while wearing the weighted vest. All but 1 participant demonstrated a decrease in the duration of self-stimulatory behaviors while wearing a weighted vest; however, the type of self-stimulatory behaviors changed and became less self-abusive for this child while she wore the vest. During the intervention withdrawal phase, 3 participants experienced an increase in the duration of self-stimulatory behaviors, and all participants experienced an increase in the number of distractions and a decrease in the duration of focused attention. The increase or decrease, however, never returned to baseline levels for these behaviors. CONCLUSION: The findings suggest that for these 5 children with PDD, the use of a weighted vest resulted in an increase in attention to task and decrease in self-stimulatory behaviors. The most consistent improvement observed was the decreased number of distractions. Additional research is necessary to build consensus about the effectiveness of wearing a weighted vest to increase attention to task and decrease self-stimulatory behaviors for children with PDD.

Social function changes in children and adolescents with acquired brain injury during inpatient rehabilitation.

OBJECTIVE: To examine changes in social function capabilities between and within groups of children with six subtypes of acquired brain injury during inpatient rehabilitation. MEASURE: The Pediatric Evaluation of Disability Inventory (PEDI) Social Functional Skills Scale was administered to 139 children with acquired brain injury (mean age=9.28 years; SD = 5.27). METHODS: Scaled summary score changes from hospital admission to discharge for the total group and six diagnostic sub-groups were calculated. One-way ANOVAs were performed for the total group and six sub-groups to determine between group differences in amount of change. Within-group changes were examined by paired t-tests, effect sizes and the proportion of children who made a clinically meaningful change (> or = 10 points). RESULTS: Children with traumatic brain injury demonstrated the greatest amount of change during inpatient rehabilitation, but only significantly greater than children with seizures. Scores were significantly higher at discharge for the total group (p < 0.001) and all sub-groups except for the anoxia group. Forty-five per cent of all children made clinically meaningful changes. CONCLUSIONS: Children with acquired brain injury made significant changes in social functioning from admission to discharge. Varying degrees of change existed for diagnostic sub-groups. Further research is needed to examine clinically meaningful changes and in which areas of social functioning children are changing during inpatient rehabilitation.

Daily life for eight urban gay men with HIV/AIDS.

OBJECTIVE: The purpose of this qualitative research study was to gain an understanding of the daily life experiences of eight gay men with HIV/AIDS living alone in New York City. METHOD: The participants ranged in age from 25 to 50 years. Data were primarily collected using in-depth personal interviews in 1996 followed by telephone interviews 1 year later. Constant-comparison and thematic analyses were used to identify themes and subthemes. RESULTS: Two broad themes with related subthemes were generated from the data. "A Reasonably Stable Base" represented the emotional, physical, and environmental foundation that preexisted or was created as a consequence of living with HIV/AIDS. This theme played a particularly important role in the participants' lives, especially during periods of emotional and physical instability. "Finding and Maintaining Balance" was a second theme that illustrated strategies used for managing and readjusting daily routines, goals, and priorities, as well as how the participants experienced this readjustment process. CONCLUSIONS: All of the participants developed their own daily living strategies that were comparable to intervention methods provided in occupational therapy such as energy conservation and work simplification. The findings suggest that occupational therapy practitioners could potentially assist urban gay men with HIV/AIDS with finding and maintaining stability and balance in their daily lives.

Occupational therapy for children with perinatal HIV infection.

This article discusses occupational therapy for children with perinatal HIV infection and their care-givers. An interdisciplinary early intervention and preschool program serving these children is described. Current medical and neurological research is reviewed to serve as a basis for occupational therapy intervention. Therapeutic approaches that integrate physical, neurological, developmental, and psychosocial needs are presented.

The efficacy of inhaled beclomethasone in chronic obstructive airway disease.

The objective of this study was to examine the effectiveness of inhaled beclomethasone in the treatment of stable chronic obstructive airway disease (COAD). Eight patients completed a randomized, double-blind, placebo-controlled, crossover trial of inhaled beclomethasone and oral prednisone. Each patient received 3 treatment regimens given for 14 days: inhaled beclomethasone, prednisone, and placebo. There were no statistically significant differences in pulmonary function tests, oxygen cost diagram, or 12-minute walking distance test among the regimens. The only improvement in arterial blood gasses was partial pressure of oxygen, which was negligibly increased during prednisone treatment compared with beclomethasone and with placebo (p less than 0.05). Evaluation of 95% confidence intervals indicated that clinically significant mean differences were unlikely with either beclomethasone or prednisone. Larger studies are required to determine if a responsive subgroup exists, and to determine if this form of therapy has a role in treatment of COAD.

Nontuberculous mycobacterial lung disease. Substantiation of a less aggressive approach.

A nonsurgical, less aggressive, less toxic chemotherapeutic protocol for the management of nontuberculous mycobacterial (NTB) pulmonary infections has been uniformly applied to patients in our institution between 1972 and 1985. Forty-three nonimmunocompromised patients with active lung disease caused by Mycobacterium avium-intracellulare (MAI) (n = 26), M kansasii (n = 16), and M xenopi (n = 1) were identified retrospectively. Eighteen MAI patients were treated with three or four antituberculosis agents resulting in sputum conversion and clinical improvement in 12 (67 percent). Additionally, 11 out of 16 (69 percent) patients completing therapy or still undergoing therapy for persistent MAI disease, achieved sputum conversion and clinical improvement after prolonged therapy (3.6 +/- 0.5 years [SEM]). When M kansasii was identified as the etiologic agent, all patients were treated with four or fewer antituberculosis agents and 14 out of 16 patients (88 percent) achieved sputum conversion and clinical improvement throughout the follow-up period. We conclude that the use of three or four chemotherapeutic agents in the treatment of NTM lung disease provides an excellent probability of successful outcome even in MAI infections.

Effect of elevated temperatures and low levels of trace metals on the growth and phenotypic development of Candida albicans.

A combination of elevated temperatures (within the human febrile range) and trace metal chelation were investigated for their effects on the inhibition of growth and phenotypic development of the dimorphic yeast Candida albicans (strain 3153A). The ability of specific cations to relieve the phenotypic inhibition that occurred also was tested. Elevated temperatures alone (to 41 degrees C) only delayed the timing of the phenotypic development. When compared to the results obtained at 37 degrees C, the recombination of elevated temperature and addition of the trace metal chelator, 1,10-phenanthroline, did not further suppress phenotypic development, but the combination did decrease the viability of C. albicans. When 24 to 48 h stationary phase singlet cells were released into a medium containing 100 microM 1,10-phenanthroline (pH 6.5), supplemental iron (200 microM) alleviated the suppression of mycelium formation at 41 degrees C, whereas under conditions favoring bud formation (pH 4.5), both iron and zinc circumvented suppression and promoted budding. Through studies on the interaction of temperature stress and trace metal availability our data revealed the requirement for iron mycelium formation whereas both iron and zinc may be needed for bud formation.

Inhibition of the differentiation of Candida albicans by the chelator 1,10-phenanthroline.

Several chelators were examined for their ability to prevent the synchronous release of 24- to 48-hour stationary phase singlet cells of the dimorphic yeast Candida albicans into either the mycelial or the budding phenotypes (in a defined liquid medium at 37 degrees C; at pH 6.5 or pH 4.5, respectively). The only chelator that was found to inhibit mycelium formation completely and to restrict bud formation to about 10% was 1,10-phenanthroline at minimal concentrations of 50 microM and 230 microM, respectively. The inhibition of both phenotypes could be reversed completely by the addition of 200 microM of ZnSO4. The synchrony of recovery from inhibition by the addition of zinc paralleled that of the controls for both phenotypes, and the final number of mycelia or buds as a percentage of the control was the same (100%). These findings support the hypothesis that the lag period between the release from stationary phase and the onset of development for Candida represents the time of acquisition of a minimum threshold amount of a cation, such as zinc. The involvement of zinc in phenotypic development is discussed, suggesting that while zinc is involved in the initiation of development, it may not determine the phenotype of Candida albicans.

Effect of temperature on siderophore production by Candida albicans.

The purpose of this study was to examine the effect of elevated temperature on growth and siderophore production by Candida albicans. The results showed that an increase in incubation temperature from 37 degrees C to 41 degrees C produced a marked decrease in both the rate and quantity of siderophore production. Elevated temperature was unable to suppress growth of C. albicans in either a control culture medium or a deferrated culture medium. A significant suppression of growth compared to the controls was observed in the deferrated media at both 37 degrees C and 41 degrees C. However with time, the growth of cells in the deferrated media showed partial recovery which was followed by an increase in siderophore production. Thus, elevation of temperature to suppress growth and siderophore production by C. albicans appears to be an ineffective host defense mechanism.

Siderophore production by the pathogenic yeast, Candida albicans.

Biochemical assays were used to determine that some strains of Candida albicans were capable of simultaneous secretion of both the hydroxamate and phenolate-type siderophores when grown in a deferrated medium at 37 degrees C. All isolants of C. albicans released hydroxamate-type siderophores into the culture medium; whereas, approximately 40% of the strains simultaneously secreted phenolate-type siderophores. The presence of phenolate and hydroxamate-type siderophores in the culture medium was further confirmed by assaying the culture media with type specific siderophore-dependent bacterial auxotrophs. This is the first report showing production of both classes of siderophores by a pathogenic yeast.

Role of interleukin-2 release by lung T-cells in active pulmonary sarcoidosis.

Using a human T-cell line sensitive to interleukin-2 (IL-2), we evaluated supernatants of unstimulated, purified lung T-lymphocytes from patients with sarcoidosis and high-intensity alveolitis (active disease), patients with sarcoidosis and low-intensity alveolitis (inactive disease), patients with idiopathic pulmonary fibrosis, and normal volunteers for the presence of IL-2. After 24 h in culture, supernatants of lung T-cells from patients with sarcoidosis and high-intensity alveolitis contained significantly greater amounts of IL-2 than did supernatants of lung T-cells from the other 3 groups, which we used as controls (p less than 0.001 for each comparison). The IL-2 present in supernatants of lung T-cells had a molecular weight of approximately 15,000 daltons and the supernatants that contained IL-2 significantly (p less than 0.01) increased in vitro immunoglobulin production by T-cell-depleted normal mononuclear cell suspensions stimulated with pokeweed mitogen. These studies suggest that the release of IL-2 by lung T-cells may explain in part the local proliferation of T-cells and hypergammaglobulinemia that are characteristic of pulmonary sarcoidosis.