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The paper examines the language used to describe pain and surgery in the trials and the media discussions of the killing of Tracy Latimer by her father. Descriptions of proposed surgical procedures, that were planned before Tracy was killed, exaggerate the intrusiveness of surgeries to be performed so as to suggest that surgery would be worse than death. Language was used to make the case that killing Tracy was somehow justified because Tracy was in relentless pain, and the proposed surgery would only have caused even more pain. Therefore, the assumption is made that surgery would have been worse than death for Tracy. In reality, Tracy experienced some pain and discomfort, but her pain was manageable, and would most likely have been eliminated by surgery. (Contains 3 footnotes.)

The paper constitutes an examination of life management of post-secondary students with disabilities. Eight individuals, all in attendance at a Western-Canadian university, were interviewed. The purpose was to explore life management issues and transformational outcomes of living with a disability as reported by individuals with disabilities; and whether these are, in any way, comparable to issues and transformational outcomes reported by parents living with children who have disabilities. Scorgie, Wilgosh, and McDonald (1996) had identified nine themes, through in-depth interviews, related to parent effective life management strategies, personal qualities, and transformational outcomes from parenting children with disabilities. For the post-secondary students, thematic analysis of the interview data yielded five life-management themes, one related directly to transformational outcomes of living with disabilities.

In their qualitative study, Young and colleagues (2009) found that youth and adults with cerebral palsy (CP), spina bifida, and acquired brain injuries of childhood in the province of Ontario, Canada, perceive or have perceived their transfer from pediatric to adult-oriented health care services as a struggle. Although publications on transition have identified this problem and similar key themes for many years, these statements were based on clinical expertise rather than research evidence. The messages for clinical practice from this study are highly important, as it provides insight in the process of clinical transition of adolescents with disabilities as well as with "points of entry" to improve transition to adult-oriented health care. Clinical transition is a problem and it is time to do something about it. A research team and a network of youth, parents, community members, and service providers in Ontario, Canada, developed an evidence-based model and best practice guidelines for the transition to adulthood for youth with disabilities entitled "The Best Journey to Adult Life" (Stewart et al., 2009). The basics of transition are simple and are common to all chronic conditions and disabilities. Firstly, young people and their families need to be prepared well in advance for moving from pediatric to adult services, and they need to have the necessary skill set to survive and thrive there. Secondly, it is important to prepare and nurture adult services to receive youth with childhood onset disabilities. Thirdly, health care providers have to listen to young people's views. Working with adolescents and their families in (clinical) transition is exciting, challenging, and sometimes difficult and frustrating. It also is an ideal time to educate adolescents about how to best care for their bodies and their life.

Ontario's current education system is struggling with the task of fully including children with disabilities in the regular classrooms of their neighbourhood school. While many educators understand that it is wrong to deny admission to publicly funded schools because the child may be Black or female, they nonetheless feel that segregation of students with disabilities is warranted and not discriminatory. This paper will present the stories of two groups of people, separated by 150 years, who have been discriminated against by the public education system in Ontario. Archival data will tell the story of the experiences of Black parents in Ontario in the early to mid 1800s, and an interview with the mother of a child with cerebral palsy will represent the voices of those with disabilities. An examination of their experiences using a narrative format seems to suggest that the institution of education has never welcomed difference in any form and at issue is not whether education can ever welcome students with disabilities, but whether it was created to be anything but an exclusive enterprise.

Conductive education (CE) is an educational approach for children with cerebral palsy. This paper describes the history of conductive education, and the characteristics of current programs that exist in many countries. The underlying principles and the unique techniques used in CE programs are described. These include the role of the conductor or class leader; facilitations (teaching strategies) known as rhythmic intention, task series, and described equipment; and the structured program. The importance of the group setting and the impact on motivation, and the development of self-efficacy within each child are described. The perspective of children and families who pursue CE is discussed. Existing evidence evaluating CE is summarized and recommendations for expanding the evidence base are made.

The Pediatric Volitional Questionnaire (PVQ) was used along with the Test of Playfulness (TOP) to assess 16 children with cerebral palsy who took part in a study of virtual reality play intervention. Both observational measures are designed to assess children as they are engaged in occupations in one or more environments. Virtual reality offers an alternative play environment for children who have disabilities. It eliminates several physical barriers usually encountered in real life. It also is a powerful medium for engaging and providing a sense of control and enjoyment with the tasks engaged with. Several virtual environments and activities were offered to the children over an eight-week period. The purpose of this paper is to examine the relationship between these two measures that were used to assess aspects of motivation and playfulness, and to explore which aspects of these measures are most correlated when assessing children in virtual environments. The Pearson correlation calculated between the average motivation score of the TOP and the average PVQ score was significant ( r = .47, p = .05). The item correlations were all non-significant except for two. These were item 6 'stays engaged' ( r = .51, p = .03) and item 9 'tries to produce effects' ( r = .55, p = .02). There is some evidence that these two measures are tapping into similar constructs. These results will be discussed.

Copyright of Developmental Medicine & Child Neurology is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Copyright of Developmental Medicine & Child Neurology is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Copyright of Developmental Medicine & Child Neurology is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Copyright of Developmental Medicine & Child Neurology is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Background: In this paper we compare the results in an analysis of determinants of caregivers' health derived from two approaches, a structural equation model and a log-linear model, using the same data set. Methods: The data were collected from a cross-sectional population-based sample of 468 families in Ontario, Canada who had a child with cerebral palsy (CP). The self-completed questionnaires and the home-based interviews used in this study included scales reflecting socio-economic status, child and caregiver characteristics, and the physical and psychological well-being of the caregivers. Both analytic models were used to evaluate the relationships between child behaviour, caregiving demands, coping factors, and the well-being of primary caregivers of children with CP. Results: The results were compared, together with an assessment of the positive and negative aspects of each approach, including their practical and conceptual implications. Conclusion: No important differences were found in the substantive conclusions of the two analyses. The broad confirmation of the Structural Equation Modeling (SEM) results by the Loglinear Modeling (LLM) provided some reassurance that the SEM had been adequately specified, and that it broadly fitted the data. [ABSTRACT FROM AUTHOR]

PURPOSE: This study aimed to 1) investigate the convergent and discriminant validity, internal consistency, and test-retest reliability of the Canadian English version of the Computer-Based instrument for Low motor Language Testing (C-BiLLT-CAN), and 2) explore feasibility of the C-BiLLT assessment for children with cerebral palsy (CP) and complex communication needs in the Canadian health care context. METHODS: Eighty typically developing children between 1.5 and 8.5 years of age completed the C-BiLLT-CAN, the Peabody Picture Vocabulary Test-IV (PPVT-4), the receptive language sub-test of the New Reynell Developmental Language Scales (NRDLS), and/or the Raven's 2. Correlations between raw scores were calculated for estimates of convergent and discriminant validity. Internal consistency was calculated for all items and separately for items pertaining to vocabulary and grammar. To calculate the standard error of measurement (SEM) and intraclass correlation coefficient (ICC), 33 participants were re-tested with the C-BiLLT within three weeks. Feasibility was explored with nine participants with CP. RESULTS: C-BiLLT-CAN's convergent validity was good to excellent (Spearman's rho > 0.78) and discriminant validity was higher than hypothesized (Spearman's rho > 0.8). Internal consistency (Cronbach's alpha = 0.96), test-retest reliability (ICC > 0.9), and measurement error (SEM < 5%) were excellent. The feasibility study could not be fully completed due to the COVID-19 pandemic. Preliminary data demonstrated some technical and practical barriers for using the C-BiLLT in children with CP in Canada. CONCLUSION: The C-BiLLT-CAN showed good to excellent psychometric properties in a sample of typically developing children, indicating that it is an adequate test for measuring language comprehension in English-speaking Canadian children. Further research is needed to investigate the feasibility of the C-BiLLT-CAN in children with CP. [ABSTRACT FROM AUTHOR]

This study explored performance on expressive and receptive graphic symbol tasks and spoken comprehension by individuals who use augmentative and alternative communication (AAC) as well as the relationship of performance with participants' skills and characteristics. Participants were 19 children and youth (aged 5- to 18-years-old) who used aided communication. Four experimental tasks were administered, with either speech or symbols as input (stimuli) and symbols or choice from an array of pictures as output (response). Symbols were not accompanied by written or spoken labels in the tasks. Measures of receptive vocabulary, receptive syntax, memory, and visual cognitive skills as well as information regarding participant characteristics were collected. There were strong relationships among all experimental tasks. Cluster analysis revealed different response patterns that may suggest a progression in expressive and receptive performance with graphic symbol sentences. Individual differences in receptive language, particularly receptive syntax, were related to task performance. The findings suggest that different ways of experiencing symbols, in addition to spoken comprehension of the sentences and receptive spoken language more generally, may contribute to expressive graphic symbol sentences. Performance on receptive symbol tasks may uncover a level of facility with the graphic-symbol modality not observed through expressive symbol use in communicative situations. [ABSTRACT FROM AUTHOR]

Thousands of youth suffering from acquired brain injury or other early-life neurological disease live, mature, and learn with only limited communication and interaction with their world. Such cognitively capable children are ideal candidates for brain-computer interfaces (BCI). While BCI systems are rapidly evolving, a fundamental gap exists between technological innovators and the patients and families who stand to benefit. Forays into translating BCI systems to children in recent years have revealed that kids can learn to operate simple BCI with proficiency akin to adults. BCI could bring significant boons to the lives of many children with severe physical impairment, supporting their complex physical and social needs. However, children have been neglected in BCI research and a collaborative BCI research community is required to unite and push pediatric BCI development forward. To this end, the pediatric BCI Canada collaborative network (BCI-CAN) was formed, under a unified goal to cooperatively drive forward pediatric BCI innovation and impact. This article reflects on the topics and discussions raised in the foundational BCI-CAN meeting held in Toronto, ON, Canada in November 2019 and suggests the next steps required to see BCI impact the lives of children with severe neurological disease and their families. [ABSTRACT FROM AUTHOR]

Aim: To assess the Canadian Occupational Performance Measure's (COPM) ability to document change over 3 years in children with cerebral palsy (CP).Method: This was a prospective study with ambulatory children with CP, aged 2 to 6 years. Caregivers set one to three COPM goals which were rescored annually over 3 years. A ceiling effect for performance goals was operationalized as a score of 8. A Wald χ2 generalized estimating equations model adjusted for age, sex, and Gross Motor Function Classification System (GMFCS) level, evaluated change over time.Results: In total, 124 children (47 [37.9%] females, 77 [62.1%] males; mean age 3y 11mo [SD 1y 1mo]; GMFCS level I [n=78, 62.9%], II [n=21, 16.9%], and III [n=25, 20.2%]) were set 345 COPM goals at baseline. By Year 3, 106 participants (85.5%) rescored 287 of the goals (83.2%). Performance scores increased between baseline mean (SD) 2.93 (0.56), Year 1 5.98 (0.58) with 34.8% at ceiling; Year 2 6.74 (0.60) 48.3% at ceiling; and Year 3 7.37 (0.60) 59.6% at ceiling (Wald χ2 [3]=607.18, p<0.001). Satisfaction scores increased between baseline 4.42 (0.59), Year 1 6.82 (0.60) with 48% at ceiling; Year 2 7.53 (0.60) with 62.2% at ceiling (Wald χ2 [3]=208.48, p<0.001); with no significant increase by Year 3 7.82 (0.62) with 66.9% at ceiling.Interpretation: COPM performance scores increased steadily over 3 years. By Year 2, a ceiling effect was seen in about half of the goals. The COPM may have utility to measure change over 3 years; periodic resetting of the descriptors of goal success are required to minimize ceiling. [ABSTRACT FROM AUTHOR]

Background: An equitable and affordable healthcare system requires a constant search for the optimal way to deliver increasingly expensive neonatal care. Therefore, evaluating the impact of hospital intensity around birth on long-term health outcomes is necessary if we are to assess the value of high intensity neonatal care against its costs. Methods: This study exploits uneven geographical distribution of high intensity birth hospitals across Canada to generate comparisons across similar Cerebral Palsy (CP) related births treated at hospitals with different intensities. We employ a rich dataset from the Canadian Multi-Regional CP Registry (CCPR) and instrumental variables related to the mother's location of residence around birth. Results: We find that differences in hospitals' intensities are not associated with differences in clinically relevant, long-term CP health outcomes. Conclusions: Our results suggest that existing matching mechanism of births to hospitals within large metropolitan areas could be improved by early detection of high risk births and subsequent referral of these births to high intensity birthing centers. Substantial hospitalization costs might be averted to Canadian healthcare system ($16 million with a 95% CI of $6,131,184 - $24,103,478) if CP related births were assigned to low intensity hospitals and subsequently transferred if necessary to high intensity hospitals. [ABSTRACT FROM AUTHOR]

Aims: To determine changes in physical caregiving for parents of children with cerebral palsy (CP) over a two-year period based on children's gross motor function level and age. Methods: 153 parents of children with CP rated their physical caregiving using the Ease of Caregiving for Children three times over two years. Parents and assessors classified children's gross motor function using the Gross Motor Function Classification System (GMFCS). Physical caregiving was compared at three test times among parents of children grouped by GMFCS level (I, II–III, and IV–V) and age (1.7–5.9 and 6–11 years) using a three-way mixed ANOVA. Results: Among all analyses, a two-way interaction was found between children's GMFCS level and test time on ease of caregiving, p < 0.01. Change over two-year period was found for parents of children in level I and II–III, p < 0.01, but not parents of children in levels IV–V. At each test time, parents of children in level I reported the greatest ease of caregiving followed by parents of children in levels II–III, and levels IV–V, who reported the lowest ease of caregiving, p < 0.001. Conclusions: Findings support evaluation and monitoring of physical caregiving for parents of children with CP over time. [ABSTRACT FROM AUTHOR]

Introduction: The objective of our study was to present model-based estimates and projections on current and future health and economic impacts of cerebral palsy in Canada over a 20-year time horizon (2011-2031). Methods: We used Statistics Canada's Population Health Model (POHEM)-Neurological to simulate individuals' disease states, risk factors and health determinants and to describe and project health outcomes, including disease incidence, prevalence, life expectancy, health-adjusted life expectancy, health-related quality of life and health care costs over the life cycle of Canadians. Cerebral palsy cases were identified from British Columbia's health administrative data sources. A population-based cohort was then used to generate the incidence and mortality rates, enabling the projection of future incidence and mortality rates. A utility-based measure (Health Utilities Index Mark 3) was also included in the model to reflect various states of functional health to allow projections of health-related quality of life. Finally, we estimated caregiving parameters and health care costs from Canadian national surveys and health administrative data and included them as model parameters to assess the health and economic impact of cerebral palsy. Results: Although the overall crude incidence rate of cerebral palsy is projected to remain stable, newly diagnosed cases of cerebral palsy will rise from approximately 1800 in 2011 to nearly 2200 in 2031. In addition, the number of people with the condition is expected to increase from more than 75 000 in 2011 to more than 94 000 in 2031. Direct health care costs in constant 2010 Canadian dollars were about $11 700 for children with cerebral palsy aged 1-4 years versus about $600 for those without the condition. In addition, people with cerebral palsy tend to have longer periods in poorer health-related quality of life. Conclusion: Individuals with cerebral palsy will continue to face challenges related to an ongoing need for specialized medical care and a rising need for supportive services. Our study offers important insights into future costs and impacts associated with cerebral palsy and provides valuable information that could be used to develop targeted health programs and strategies for Canadians living with this condition. [ABSTRACT FROM AUTHOR]

Modified toy cars for have gained popularity as a tool for early exposure to power mobility. Aims: to (1) determine modifications required, (2) describe frequency of home and community use, (3) describe assistance and encouragement provided, child's motivation and enjoyment of the car, and (4) explore therapist and parent experiences with the cars. Methods: This mixed-methods case series included children aged 13–58 months (n = 5) with cerebral palsy (n = 4) and arthrogryposis and hypotonia (n = 1). Four children received cars and follow-up visits from therapists in their homes. Quantitative data were collected using a family driving record. Qualitative interviews were conducted with parents (n = 5) and therapists (n = 2). The data management strategy described by Knafl (1988) facilitated qualitative data analysis. Results: One child could not be adequately supported; she did not receive a car. Driving frequency ranged from 1.3 to 2.9 days per week, 12–63 min in duration. Qualitative analysis resulted in four themes: (1) A gentle introduction to power mobility, (2) It's more than just mobility, (3) You just need to try it, and (4) Cars are simple tools. Conclusions: Modified toy cars are feasible for early exposure to power mobility with young children with physical disabilities who do not require extensive seating modifications. [ABSTRACT FROM AUTHOR]

Background: Health for people with cerebral palsy (CP) must extend beyond physical impairments to include social, environmental, and psychological factors that are rarely captured by quantitative research alone. This qualitative study sought to explore the lived experience of young people with CP with their physical, mental, and emotional health in the context of a larger longitudinal Canadian study focusing on brain function, physical and mental health, and well‐being. Methods: An integrated research team (including people with CP or other impairments, clinicians, and researchers) was formed to study participant‐identified research needs. A purposive sample of 16 people with CP (seven female), aged 17–29, Gross Motor Function Classification System (GMFCS) levels I–V, participated in three focus groups that were conceptualized and analysed using interpretive description methodology. Results: This study reports the experiences of people with CP across GMFCS levels and identifies some consequences of growing up with the condition: physical and mental health issues, importance of meaningful participation, impact of the environment, and identity formation. Participants shared challenges related to accessibility, healthcare, social/environmental supports, relationships, and sustainable employment. Discussion Body structure and function challenges impact participation in activities of daily living, threatening participants' ability to form positive identities and live meaningful lives. People with CP desire to work but may require additional training, accommodation, and support to do so. Environmental conditions, including relationships, supportive people, and accessibility, shape participants' health, well‐being, and social/civic engagement. This study confirms the need for improved care for adults with CP, including multidisciplinary adult health team(s) and community services. [ABSTRACT FROM AUTHOR]

Attitudes toward physical activity were examined in relation to sports classification (nonambulatory vs. ambulatory) and gender for elite cerebral palsied (CP) athletes and were compared to attitudes of elite Canadian able-bodied athletes (Alderman, 1970). Subjects were 165 CP adult athletes who competed in the 1983 National CP Games, Ft. Worth, Texas. Data were collected by interview on the Simon and Smoll Attitude Toward Physical Activity Scale (SATPA). SATPA answers were treated with MANOVA and ANOVA, and the Scheff7eacute; test was used for post hoc analysis. No significant difference was found among class, gender, and class-by-gender combinations in attitudes toward physical activity. Adult CP athletes have positive attitudes toward the total concept of physical activity, but are significantly less favorably disposed to physical activity as a thrill and as long and hard training than as social experience, health and fitness, beauty, and tension release. [ABSTRACT FROM AUTHOR]

Aims: This article describes a qualitative study aimed at producing child-centered guidelines for the administration of a measure of children's advanced gross motor skills, the Challenge. The purpose of the guidelines is to promote collaborative interpretation and application of results. Methods: The study was conducted in three Canadian cities and included 31 children with cerebral palsy (GMFCS Level I or II) ages 8 to 18 and one parent/caregiver per child (N = 62 participants). Following Challenge administration, each child and one of their caregivers took part in separate qualitative interviews. Analyses were oriented to exploring understandings of the purposes of testing, impressions of the child's performance, and perceptions of how results might inform activity choices and interventions. Results: Three themes were generated: investments in doing well; I know my child/myself; and caregivers' interpretations of child's performance. Themes were then integrated with principles of child and family-centered care to develop The Challenge Engagement Guidelines directed at reducing test anxiety and enhancing shared decision making. Conclusions: The Guidelines are the first of their kind to integrate child and family-centered principles into the administration protocol of a motor measure. Although developed for the Challenge, the principles have applicability to other rehabilitation measures. [ABSTRACT FROM AUTHOR]

Background: Intensive upper extremity training (IUET) has demonstrated efficacy in clinical and functioning outcomes in children with hemiplegia. However, implementation in the clinical context requires novel service models and knowledge translation. Aims: To map implementation of IUET in Canada, to identify factors associated with the implementation and best practices for implementation. Methods: Mixed-methods design; descriptive statistics, chi-square tests. Individual phone interviews and focus groups with purposeful sampling. Thematic analysis; telephone surveys with managers of 31 pediatric rehabilitation centers across Canada. Four focus groups across Canada and one in the Netherlands. Results: Implementation of IUET group interventions is limited in Canada (7/31). Barriers included beliefs and values related to evidence-based practice, opportunities for continuing education, researchers-clinicians partnerships, access to scientific literature, and the presence of a champion. Pressure from parents and media presenting IUET as a novel and effective therapy, support and flexibility of families, having the critical mass of clients and a managerial willingness to accommodate new ideas and restructure service provision were some facilitators. Conclusions: Uptake of the evidence requires many steps described in the knowledge translation cycle. Factors identified in the study could be considered in most clinical settings to facilitate the uptake of research evidence for IUET. [ABSTRACT FROM AUTHOR]

Objectives: Identify determinants of neurodevelopmental outcome in preterm children.Methods: Prospective national cohort study of children born between 2009 and 2011 at <29 weeks gestational age, admitted to one of 28 Canadian neonatal intensive care units and assessed at a Canadian Neonatal Follow-up Network site at 21 months corrected age for cerebral palsy (CP), visual, hearing and developmental status using the Bayley Scales of Infant and Toddler Development-Third Edition (Bayley-III). Stepwise regression analyses evaluated the effect of (1) prenatal and neonatal characteristics, (2) admission severity of illness, (3) major neonatal morbidities, (4) neonatal neuroimaging abnormalities, and (5) site on neurodevelopmental impairment (NDI) (Bayley-III score < 85, any CP, visual or hearing impairment), significant neurodevelopmental impairment (sNDI) (Bayley-III < 70, severe CP, blind or hearing aided and sNDI or death.Results: Of the 3700 admissions without severe congenital anomalies, 84% survived to discharge and of the 2340 admissions, 46% (IQR site variation 38%-51%) had a NDI, 17% (11%-23%) had a sNDI, 6.4% (3.1%-8.6%) had CP, 2.6% (2.5%-13.3%) had hearing aids or cochlear implants and 1.6% (0%-3.1%) had a bilateral visual impairment. Bayley-III composite scores of <70 for cognitive, language and motor domains were 3.3%, 10.9% and 6.7%, respectively. Gestational age, sex, outborn, illness severity, bronchopulmonary dysplasia, necrotising enterocolitis, late-onset sepsis, retinopathy of prematurity, abnormal neuroimaging and site were significantly associated with NDI or sNDI. Site variation ORs for NDI, sNDI and sNDI/death ranged from 0.3-4.3, 0.04-3.5 and 0.12-1.96, respectively.Conclusion: Most preterm survivors are free of sNDI. The risk factors, including site, associated with neurodevelopmental status suggest opportunities for improving outcomes. [ABSTRACT FROM AUTHOR]

Aim: The objectives of this exploratory study were (1) to describe the experience of fatigue in adults with cerebral palsy (CP) inclusive of all levels of the Gross Motor Function Classification System (GMFCS); and (2) to determine if physical activity level, sedentary time, age, or body composition can predict fatigue in adults with CP.Method: An observational study was conducted in an outpatient setting in Ontario, Canada. Participants included adults with CP (n=41; GMFCS levels I-V; mean age 33.7y, standard deviation [SD] 12.3y). Fatigue was measured using the Fatigue Impact and Severity Self-Assessment (FISSA) questionnaire. Habitual physical activity and sedentary time were measured using accelerometry. Body mass index (BMI) and waist circumference were reported as measures of body composition.Results: The mean (SD) FISSA score for all participants was 84.5 (30.6), ranging from 54.0 (18.3) (GMFCS level I) to 93.6 (21.9) (GMFCS level V). Significant positive relationships (regression coefficient β [95% confidence intervals]) were observed between BMI and FISSA scores (1.9 [0.73-3.1]), waist circumference and FISSA scores (0.71 [0.19-1.2]), and age and FISSA scores (0.99 [0.26-1.7]). A significant negative relationship was observed between moderate-to-vigorous physical activity (MVPA) per hour and FISSA scores -6.4 [-12 to -0.83]). Backwards stepwise regression analysis revealed BMI (1.8 [0.61-2.9]) and MVPA per hour (-5.4 [-10 to -0.30]) were significant predictors of FISSA scores.Interpretation: Health care providers should consider the importance of weight management and physical activity to prevent and treat fatigue in this population. [ABSTRACT FROM AUTHOR]

Purpose:To test a model of child, family and service determinants of participation in family and recreational activities for young children with cerebral palsy (CP). Methods:Participants were a convenience sample of 429 children (242 males) with CP, aged 18 to 60 months, representing all levels of the Gross Motor Function Classification System (GMFCS). Children were divided into two groups by GMFCS levels, levels I to II and levels III to V. Data on impairments and gross motor function were collected by therapists; parents provided information about children’s health conditions and adaptive behaviour. Seven months later, parents reported on family life and services received. One year after the beginning of the study, parents reported their children’s participation. Data from the two groups of children were analysed separately using structural equation modelling. Results:The model explained 35% and 40% of the variance of frequency of participation in family and recreation and 28% and 38% of enjoyment in participation, for the two groups of children, respectively. Children’s adaptive behaviour, family ecology, and number of community recreational programs were associated with the frequency of participation for both groups. Gross motor function was only associated with the frequency of participation for children in levels III–V. Adaptive behaviour was associated with enjoyment for both groups. The extent services met children’s needs was associated with enjoyment for children in levels I to II and family ecology was a determinant of enjoyment for children in levels III to V. Conclusion:Supporting children’s adaptive behaviour, family ecology, and access to community recreational programmes may foster participation in family and recreational activities for young children with CP.Implications for RehabilitationParticipation in family and recreational activities for young children with CP is complex and influenced by child, family and environmental factors.Practitioners are encouraged to support children’s adaptive behaviour and access to community programs and family relationships, involvement in community activities and expectations of their children.Optimizing gross motor function for children who have limitations in self-mobility may enhance their participation in family and recreational activities.For children with a good prognosis for walking, providing services perceived by parents to meet their children’s needs may enhance children’s enjoyment of participation. [ABSTRACT FROM PUBLISHER]

BACKGROUND: Parents who care for young children with chronic conditions are knowledge users. Their efforts, time, and energy to source, consider and monitor information add to the 'invisible' work of parents in making decisions about care, school transitions, and interventions. Little is known or understood about the work of parents as knowledge users. OBJECTIVE: To understand the knowledge use patterns and how these patterns may be monitored in parents caring for their young children with cerebral palsy (CP). METHODS: An embedded case study methodology was used. In-depth qualitative interviews and visual mapping were employed to collect and analyze data based on the experiences of three mothers of young children with CP. RESULTS: Knowledge use in parents caring for their young children with CP is multi-factorial, complex and temporal. Findings resulted in a provisional model elaborating on the ways knowledge is used by parents and how it may be monitored. CONCLUSIONS: The visual mapping of pathways and actions of parents as end users makes the processes of knowledge use more visible and open to be valued as well as appreciated by others. The provisional model has implications for knowledge mobilization as a strategy in childhood rehabilitation and the facilitation of knowledge use in the lives of families with children with chronic health conditions. [ABSTRACT FROM AUTHOR]

Background. The attainment of walking is a focus of physical therapy intervention in children with cerebral palsy (CP) and may affect their independence in mobility and participation in daily activities. However, knowledge of determinants of independent walking to guide physical therapists' decision making is lacking. Objective. The aim of this study was to identify child factors (postural control, reciprocal lower limb movement, functional strength, and motivation) and family factors (family support to child and support to family) that predict independent walking 1 year later in young children with CP at Gross Motor Function Classification System (GMFCS) levels II and III. Design. A secondary data analysis of an observational cohort study was performed. Methods. Participants were 80 children with CP, 2 through 6 years of age. Child factors were measured 1 year prior to the walking outcome. Parent-reported items representing family factors were collected 7 months after study onset. The predictive model was analyzed using backward stepwise logistic regression. Results. A measure of functional strength and dynamic postural control in a sit-to-stand activity was the only significant predictor of taking ≥3 steps independently. The positive likelihood ratio for predicting a "walker " was 3.26, and the negative likelihood ratio was 0.74. The model correctly identified a walker or "nonwalker " 75% of the time. Limitations. Prediction of walking ability was limited by the lack of specificity of child and family characteristics not prospectively selected and measurement of postural control, reciprocal lower limb movement, and functional strength 1 year prior to the walking outcome. Conclusions. The ability to transfer from sitting to standing and from standing to sitting predicted independent walking in young children with CP. Prospective longitudinal studies are recommended to determine indicators of readiness for independent walking. [ABSTRACT FROM AUTHOR]

The production of new knowledge in augmentative and alternative communication (AAC) requires effective processes to leverage the different perspectives of researchers and knowledge users and improve prospects for utilization in clinical settings. This article describes the motivation, planning, process, and outcomes for a novel knowledge translation workshop designed to influence future directions for AAC outcomes research for children with complex communication needs. Invited knowledge users from 20 pediatric AAC clinics and researchers engaged in the collaborative development of research questions using a framework designed for the AAC field. The event yielded recommendations for research and development priorities that extend from the early development of language, communication, and literacy skills in very young children, to novel but unproven strategies that may advance outcomes in transitioning to adulthood. [ABSTRACT FROM AUTHOR]

Objective: To test a model of child, family and service determinants of self-care participation of children with cerebral palsy (CP), grouped by Gross Motor Function Classification System levels (I-II and III-V). Methods: Participants were a convenience sample of 429 children (242 males) with CP, aged 18-60 months. Data on impairments and gross motor function were collected by reliable therapists; parents provided information about children's health conditions and adaptive behaviour. Seven months later parents reported on family life and services received. One year after study onset, parents documented children's self-care participation. Data from two groups of children were analysed using structural equation modelling. Results: The model explained a significant proportion of the variance of self-care participation, with higher motor function, fewer health conditions and higher levels of adaptive behaviour being associated with greater self-care participation. Conclusion: Supporting children's gross motor function, health and adaptive behaviour may optimize self-care participation. [ABSTRACT FROM AUTHOR]

Human sexuality is constructed via public, interactional and private sexual scripts (Simon & Gagnon, 1986, 1987, 2003). However, normative sexual scripts often exclude or asexualize people with cerebral palsy. Consequently, rehabilitation counselling may rely on conceptual models of sexuality which are derived from typical populations. This paper presents a conceptual model of sexuality with disability relevant to rehabilitation counselling which reflects how people with moderate to severe disability construct their sexuality. Based on a hermeneutic phenomenological framework, seven in-depth, semi-structured interviews were conducted with five men and two women with moderate to severe cerebral palsy from Canada and Australia. Interviews were analyzed using Nvivo 9. Overall, the results and proposed model indicate that while interactional, public and private sexual scripts feature in all participants' descriptions of their sexuality, interactional sexual scripts dominated participant's definition of their sexuality. Rehabilitation counselling frameworks should be cognizant of the primary importance of interactional sexual experiences within their clients' lives. [ABSTRACT FROM AUTHOR]

Purpose: To evaluate the criterion-related validity of the TOCS+ sentence measure (TOCS+, Hodge, Daniels & Gotzke, 2009) for children with dysarthria and CP by comparing intelligibility and rate scores obtained concurrently from the TOCS+ and from a conversational sample. Method: Twenty children (3 to 10 years old) diagnosed with spastic cerebral palsy (CP) participated. Nineteen children also had a confirmed diagnosis of dysarthria. Children's intelligibility and speaking rate scores obtained from the TOCS+, which uses imitation of sets of randomly selected items ranging from 2-7 words (80 words in total) and from a contiguous 100-word conversational speech were compared. Results: Mean intelligibility scores were 46.5% (SD = 26.4%) and 50.9% (SD = 19.1%) and mean rates in words per minute (WPM) were 90.2 (SD = 22.3) and 94.1 (SD = 25.6), respectively, for the TOCS+ and conversational samples. No significant differences were found between the two conditions for intelligibility or rate scores. Strong correlations were found between the TOCS+ and conversational samples for intelligibility ( r = 0.86; p < 0.001) and WPM ( r = 0.77; p < 0.001), supporting the criterion validity of the TOCS+ sentence task as a time efficient procedure for measuring intelligibility and rate in children with CP, with and without confirmed dysarthria. Conclusion: The results support the criterion validity of the TOCS+ sentence task as a time efficient procedure for measuring intelligibility and rate in children with CP, with and without confirmed dysarthria. Children varied in their relative performance on the two speaking tasks, reflecting the complexity of factors that influence intelligibility and rate scores. [ABSTRACT FROM AUTHOR]

The purpose of this study was to examine the relationship between goal achievement measured by the Canadian Occupational Performance Measure (COPM) and child, goal, and intervention factors. Participants were 41 preschool children with cerebral palsy (CP) who were in the context-focused therapy arm of a randomized controlled trial. Factors including child age, Gross Motor Function Classification System (GMFCS) level, type and complexity of goals, and intervention strategies were analyzed. Children made large, positive mean changes on the COPM over 6 months (Performance = 3.8, SD = 1.9; Satisfaction = 4.3, SD 4.3) with younger children showing greater change. The COPM scores had low to moderate correlations with change on the Pediatric Evaluation of Disability Inventory and the Gross Motor Function Measure (GMFM-66). Regression analysis indicated that age, but not GMFCS level influenced COPM change scores. Goal complexity and intervention strategies were not significantly related to COPM change scores. The results provide support for using the COPM as an individualized measure of change in young children with CP receiving intervention. [ABSTRACT FROM AUTHOR]

This study examined the relationship between gross motor function and manual ability in 120 adolescents with cerebral palsy (CP) (15.2, SD 2.1 years, 59.8% male). Adolescents were evaluated using the Gross Motor Function Classification System (GMFCS) and the Manual Ability Classification System (MACS). A neurologist classified CP subtype. Most adolescents were ambulatory with or without utilization of aids (GMFCS level I: 35.0%, II: 30.0%, III: 5.8%, IV: 10.8%, and V: 18.3%). MACS levels were I: 34.2%, II: 25.8%, III: 16.7%, IV: 7.5%, and V: 15.8%. Correlations between GMFCS and MACS were strong in youth with quadriplegia ( r = .89, p < .001), moderate in individuals with diplegia ( r = .58, p = .01), but weakly associated for adolescents with hemiplegia ( r = .24, p = .23). The findings provide evidence for maintaining a clinical distinction between spastic quadriplegia and spastic diplegia. Manual ability may not be congruent with mobility in adolescents with CP and should be specifically evaluated given its importance to daily life functioning. [ABSTRACT FROM AUTHOR]

The aims of this study were to describe physical therapy (PT) and occupational therapy (OT) services for a cohort of 399 children with cerebral palsy (CP), 2-6 years old, residing in the United States and Canada. Parents completed a services questionnaire by telephone interview. Therapists classified children's Gross Motor Function Classification System (GMFCS) level. Mean minutes per month of PT and OT were greater for children receiving services in both an educational and clinic setting. Mean minutes per month of PT and OT were greater for children in levels IV-V than children in level I and greater for children in the United States than children in Canada. Parents reported that interventions focused a moderate to great extent on primary impairments, secondary impairments, activity, and structured play activities, a moderate extent on environmental modifications and equipment; and a moderate to small extent on self-care routines. The results support the importance of coordination of PT and OT services. [ABSTRACT FROM AUTHOR]

Participation in activities provides the means for young children to learn, play, develop skills, and develop a sense of personal identity. The Assessment of Preschool Children's Participation (APCP) is a newly developed measure to capture the participation of children aged 2 to 5 years and 11 months in the areas of play, skill development, active physical recreation, and social activities. Data from a clinical trial involving 120 children with cerebral palsy indicated that the APCP has moderate to very good internal consistency. The measure distinguishes between children below or above 4 years of age across levels of the Gross Motor Classification System, and between income levels below or above the median regional income range. The APCP, with a focus on preschool children, has potential use for assessment and identification of activity areas in which the child is participating and areas in which participation may be restricted. [ABSTRACT FROM AUTHOR]

Aim Conventional constraint-based therapies are intensive and demanding to implement, particularly for children. Modified forms of constraint-based therapies that are family-centred may be more acceptable and feasible for families of children with cerebral palsy (CP)-but require rigorous evaluation using randomized trials. The aim of this study was to determine the effects of modified constraint-induced therapy compared with intensive occupational therapy on activities of daily living and upper limb outcomes in children with hemiplegic CP. Method In this assessor-blinded pragmatic randomized trial, 50 children (27 males, 23 females; age range 19mo-7y 10mo) with hemiplegic CP were randomized using a concealed allocation procedure to one of two 8-week interventions: intensive occupational therapy ( n=25), or modified constraint-induced therapy ( n=25). Manual Ability Classification System (MACS) levels of the participants were, level I n=2, II n=37, III n=8, and level IV n=1; Gross Motor Function Classification System (GMFCS) levels were, level I n=33, level II n=15, and level III n=1. Participants were recruited through three specialist CP centres in Australia and randomized between January 2008 and April 2010. Children randomized to modified constraint-induced therapy wore a mitt on the unaffected hand for 2 hours each day, during which time the children participated in targeted therapy. The primary outcome was the Canadian Occupational Performance Measure (COPM - measured on a 10-point scale) at completion of therapy. Other outcome measures were Goal Attainment Scaling, Assisting Hand Assessment, Pediatric Motor Activity Log, Modified Ashworth Scale, Modified Tardieu Scale, and a parent questionnaire. Assessments were carried out at 10 weeks and 6 months following randomization. Results All participants were included in the analysis. Between-group differences for all outcomes were neither clinically important nor statistically significant. The mean difference in COPM was 0.3 (95% confidence interval [CI] −0.8 to 1.4; p=0.61) and mean difference in COPM satisfaction was 0.1 (95% CI −1.1 to 1.2; p=0.90). Minor adverse events were reported by five of the 25 participants in the modified constraint-induced therapy group and by one of the 25 in the intensive occupational therapy group. All adverse events were related to participants' lack of acceptance of therapy. Interpretation Modified constraint-induced therapy is no more effective than intensive occupational therapy for improving completion of activities of daily living or upper limb function in children with hemiplegic CP. [ABSTRACT FROM AUTHOR]

We studied the effect of botulinum toxin A injections to the lower extremities of spastic cerebral palsy children on upper limb body function and occupational performance. A total of 16 children with spastic cerebral palsy, aged 2 to 8 years, Gross Motor Function Classification System levels I-IV, referred to a child neurology outpatient clinic for botulinum toxin A injections to the lower limbs, underwent 4 assessments: 1 month prior to injection, immediate pre injection, and at 1 and 5 to 6 months post injection. Three tools were used to test everyday function (Canadian Occupational Performance Measure and the Pediatric Evaluation of Disability Inventory) and upper extremity body function (Quality of Upper Extremity Skills Test). Significant improvement was documented between the immediate preinjection and the 2 postinjection assessments, indicating that improvement lasted for at least 6 months. Botulinum toxin A injections to the lower extremities in children with cerebral palsy improve upper limb body function and occupational performance. [ABSTRACT FROM AUTHOR]

Introduction: The transition to adulthood is extremely difficult for individuals with disabilities. We sought to explore the specific issue of transition to adult-oriented health care in a Canadian context. Methods: We conducted semi-structured individual interviews with 15 youth and 15 adults with cerebral palsy, spina bifida, and acquired brain injuries of childhood, and their parents ( n = 30). Respondents discussed their health care services, their experience with clinical transition, and contributing factors. We analyzed the transcripts using qualitative methods. Results: All participants identified challenges in transition, including: lack of access to health care; lack of professionals' knowledge; lack of information and uncertainty regarding the transition process. Two solutions were identified: early provision of detailed information and more extensive support throughout the clinical transition process. Discussion: The challenges of clinical transition were universal. More extensive information and support is needed during transition to ensure an efficient move to appropriate adult-oriented health care. [ABSTRACT FROM AUTHOR]

Rationale: Cerebral palsy (CP) constitutes a substantial portion of paediatric rehabilitation, yet little is known regarding actual occupational therapy (OT) and physical therapy (PT) practices. This study describes OT and PT practices for young children with CP in Quebec, Canada. Methods: This was a cross-sectional survey. All eligible, consenting paediatric occupational therapists (OTs) and physical therapists (PTs) were interviewed using a structured telephone interview based on vignettes of two typical children with CP at two age points - 18 months and 4 years. Reported practices were grouped according to the International Classification of Functioning, Disability and Health (ICF). Results: 91.9% of PTs (n = 62; 83.8% participation rate) and 67.1% of OTs (n = 85; 91.4% participation rate) reported using at least one standardized paediatric assessment. OT and PT interventions focused primarily on impairments and primary function (such as gait function and activities of daily living). Both professions gave little attention to interventions related to play and recreation/leisure. Clinicians reported the need for more training and education specific to CP and to the use of research findings in clinical practice. Conclusion: Wide variations and gaps were identified in clinicians' responses suggesting the need for a basic standard of OT and PT management as well as strategies to encourage knowledge dissemination regarding current best practice. Fundamento: La parálisis cerebral (PC) constituye una parte sustancial de la rehabilitación pediátrica, sin embargo se sabe poco acerca del ejercicio actual de la terapia física (TF) y de la terapia ocupacional (TO). Este estudio describe la aplicación de la TF y de la TO a niños pequeños con PC en Quebec, Canadá. Métodos: Este fue un estudio prospectivo, de corte transversal. Todos los terapistas físicos (TF) y los terapistas ocupacionales (TO) pediátricos elegibles, previo consentimiento, fueron entrevistados utilizando un cuestionario telefónico estructurado basado en viñetas de dos niños típicos con PC a dos edades - 18 meses y 4 años de edad. Las prácticas reportadas fueron agrupadas en base a la Clasificación Internacional de Funcionalidad, discapacidad y salud (CIF). Resultados: 91.9% de los TFs (n = 62; 83.8% rango de participación) y 67.1% de los TOs (n = 85; 91.4% rango de participación) reportaron usar por lo menos una forma de evaluación pediátrica estandarizada. Las intervenciones de TF y TO se enfocaron principalmente en las discapacidades y en las funciones primarias (tales como la marcha y las actividades de la vida diaria). Ambas profesiones prestaron poca atención a las intervenciones relacionadas al juego y a las actividades recreativas y de entretenimiento. Los médicos manifestaron la necesidad de un mayor entrenamiento y educación específicos a la PC y la aplicación de los hallazgos de las investigaciones en la práctica clínica. Conclusión: Se identificaron amplias variaciones y un desconocimiento en las respuestas de los médicos, sugiriendo esto la necesidad de un manejo estándar básico de TF y TO, así como estrategias que impulsen la diseminación del conocimiento en relación a una mejor práctica. Palabras clave: Terapia ocupacional, terapia física, parálisis infantil, Clasificación Internacional de Funcionalidad, tratamiento basado en la evidencia, rehabilitación pediátrica [ABSTRACT FROM AUTHOR]

Objective To describe the use of formal respite services among caregivers of children with cerebral palsy in Ontario and discuss the factors that may contribute to respite use and non-use. Methods A total of 468 caregivers were interviewed about their experience with formal respite services. Interviews were part of a larger cross-sectional study on caregiver health. Caregivers were asked about their knowledge of formal respite services; their use of formal respite services in the past year; financial implications relating to formal respite use; perceived barriers to formal respite service use; and reasons for not using formal respite services (if applicable). Results Nearly half (46%) of caregivers in the sample reported using respite services in the past year. Most of the caregivers who used respite services used more than one source of respite, had services provided in their home, often for less than 1 day, and reported using them more than six times. The most commonly cited reason for using formal respite services was for a planned break. Many factors influenced caregivers' use of formal respite services. Caregivers who had a child with a lower level of function, with multiple additional conditions, or who was male, were more likely to use formal respite services. Although over 90% of caregivers indicated that respite use is beneficial for both their family and child, over 60% reported facing many barriers while attempting to access respite services. Conclusion Results from this cross-sectional study indicate that caregivers who used respite services used them frequently for breaks from caregiving. Caregivers described facing many barriers while attempting to access respite services therefore to improve caregiver's experience with respite services, strategies are suggested. [ABSTRACT FROM AUTHOR]