[Show abstract][Hide abstract] ABSTRACT: Background: Physical activity is recognized as a rehabilitation approach for individuals with motor disabilities. Objectives: To determine whether community fitness programs were accommodating children and youth with motor disabilities, and to understand family perspectives on important outcomes related to fitness programs. Design: Telephone survey and qualitative interviews. Participants and settings: Representatives of 61 fitness programs/facilities and 13 parents of children with motor disabilities. Methods: Telephone survey (facilities) and qualitative interviews (parents). Results: 24.6% of programs reported lack of wheelchair accessibility. Only 9.8% of programs and facilities required their staff to have training to support individuals with disabilities. Parents discussed barriers, including lack of staff support and challenges with finding information about community programs. Parents focused on the social benefits of fitness programs. Conclusions/significance: Additional efforts toward reducing access barriers are needed. Parents’ focus on social outcomes has direct implications on the design and evaluation of fitness programs.
[Show abstract][Hide abstract] ABSTRACT: The Family Resilience Study was initiated based on increasing concern that children who have survived life-saving heart surgery early in life are presenting new challenges to our health and education system that, when unmet, are adding to the stress of parents and families. Although Alberta has a rich array of early intervention services, community rehabilitation and educational support services, and financial support systems for children with disabilities and their parents/families, there has been a mismatch between these services and the needs of children with complex congenital heart disease (CHD). The medical needs of these children, who undergo three major heart surgeries, endure prolonged hospitalizations and repeated invasive procedures, understandably need to trump their developmental needs in the early years. By school entry, not only are some of these children having difficulty learning, they are also experiencing emotional and behavioural challenges. Gaining in-depth understanding of the needs of these children and their parents’ concerns from the perspective of mothers and fathers, and involved health care professionals has enabled us to identify clearly the issues and potential solutions. In this mixed methods descriptive study, parents of children with hypoplastic left heart syndrome completed questionnaires about their parent resilience, parenting stress and family’s management of their child’s serious health condition. They also provided information about their child’s developmental and learning needs by questionnaires and during in-person interviews. Researchers discussed the findings from this stage of the research with parents and health care professionals in focus groups. Health care professionals provided input regarding recommendations for service improvements through an online survey.
[Show abstract][Hide abstract] ABSTRACT: Low levels of physical activity are a global health concern for all children. Children with cerebral palsy have even lower physical activity levels than their typically developing peers. Low levels of physical activity, and thus an increased risk for related chronic diseases, are associated with deficits in health-related physical fitness. Recent research has provided therapists with the resources to effectively perform physical fitness testing and physical activity training in clinical settings with children who have cerebral palsy, although most testing and training data to date pertains to those who walk. Nevertheless, on the basis of the present evidence, all children with cerebral palsy should engage, to the extent they are able, in aerobic, anaerobic, and muscle-strengthening activities. Future research is required to determine the best ways to evaluate health-related physical fitness in nonambulatory children with cerebral palsy and foster long-term changes in physical activity behavior in all children with this condition.
[Show abstract][Hide abstract] ABSTRACT: Background: Access to quality child care is an important support for families with children with disabilities. The objectives of this study were to determine: (1) the current state of inclusion of children with special needs in child care programmes, and (2) the presence of child care staff practices and programme characteristics that support inclusion. Methods: Mail survey. Results: Centre based day care programmes (n = 318) and family day home agencies (n = 25) responded to the survey (47% response rate). Participants reported positive attitudes towards the philosophy of inclusion; however, 36% of the centre-based programmes and 29% of the family day home agencies that had been contacted by families of children with special needs did not accept them into care. A significant proportion of centre-based programmes (36%) and family day home agencies (40%) were unaware of how to access specialised support services for the children in their programmes. Many programmes (i.e. 54% of centre-based programmes and 96% of family day homes) reported they were not physically accessible. Conclusions: Child care providers require improved access to supports to increase their capacity to provide child care for children with special needs.
International Journal of Inclusive Education 04/2014; 18(4). DOI:10.1080/13603116.2013.767386 · 0.35 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: Background
Serial joint range of motion (ROM) measurements are an important component of assessments for children with cerebral palsy. Most research has studied ROM stability using group data. Examination of longitudinal intra-individual measures may provide more clinically relevant information about measurement variability.Objective
To examine the stability of intra-individual longitudinal measurements of hip abduction (ABD), popliteal angle (POP) and ankle dorsiflexion (ADF) ROM measures of children with cerebral palsy.DesignSecondary data analysesMethods
The stability patterns of individual serial measurements of ABD, POP and ADF from 85 children (mean age 3.8 years, SD 1.4 yr.) collected at baseline (T1), 3 months (T2), 6 months (T3) and 9 months (T4) were examined using T1 as the anchor and bandwidths of +/- 15(0) (ABD and POP) and +/-10(0) (ADF) as acceptable variability. Frequencies of stability categories (0(0)-5(0), 5.1(0)-10(0), 10.1(0)-15(0) and >15(0)) were calculated. Patterns of stability across the four time periods were also examined. Group means (T1-T4) were compared using repeated measures ANOVA.ResultsNo significant differences in group means except for ABD. Stability patterns revealed that 43.3% to 69.5% of joint measurements were stable with T1 measurements across all three subsequent measurements. Stability category frequencies showed that many measurements (ABD=17%, POP=29.9%, ADF=37.1%) went outside the variability bandwidths even though 39% or more of joint measurements had a change of 5(0) or less over time.LimitationsMeasurement error and true measurement variability cannot be disentangled. The results cannot be extrapolated to other joint ranges.Conclusions
Individual ROM serial measurement exhibits more variability than group data. ROM data must be interpreted with caution clinically and efforts made to ensure standardization of data collection methods.
[Show abstract][Hide abstract] ABSTRACT: Physical activity is important for young people's health. The emphasis over the last two decades has been on moderate to vigorous exercise when designing activity and exercise programs for children and adolescents with cerebral palsy (CP). Emerging evidence suggests that sedentary behaviour is distinctly different from a lack of moderate to vigorous physical activity, and has independent and different physiological mechanisms. The concept of concurrently increasing moderate to vigorous physical activity and replacing sedentary behaviour with light physical activity may be beneficial for children and adolescents with CP. This article is a summary of the evidence for what works and what doesn't work for improving the physical activity of children and adolescents with CP. It also discusses what we know about sedentary behaviour of children and adolescents with CP, and what research directions are needed to build foundational knowledge in this area with this population.
[Show abstract][Hide abstract] ABSTRACT: ABSTRACT Secondary analysis using data from a clinical trial was performed to evaluate the stability of individual items of the Mobility and Self-Care functional skills scales of the Pediatric Evaluation of Disability Inventory (PEDI). Parents of 113 children aged 1-6 years old with cerebral palsy completed the PEDI twice by questionnaire 6 months apart. An item was classified "unstable" if the score changed from capable to unable. The number of children with more than five unstable items and the number of items with more than five children having unstable scoring patterns were calculated. Nineteen children (17%) and 13 items had unstable scoring patterns. The majority of PEDI items demonstrated stability of parent scoring. Examination of unstable items suggests that parents may need assistance in understanding the difference between "usual" and "best" performance, interpreting descriptors such as "thoroughly," and maintaining the same context reference for outdoor mobility items.
[Show abstract][Hide abstract] ABSTRACT: Abstract Purpose: To identify facilitators and barriers frequently experienced by families of children with cerebral palsy (CP) and associated with being at the pre-intention, intention and action stages for physical activity. Method: Qualitative study involving in-depth focus group interviews with 33 ambulatory children and adolescents with CP and their parents (n = 33). These interviews were followed by questionnaires to determine stage of behavior change (i.e. pre-intention, intention and action) related to the child's participation in physical activity. Results: Families who were classified in the intention stage of behavioral change were more likely to identify environmental barriers related to the social environment and the facility or program than parents at the pre-intention stage. Families who were classified into intention and action stages were more likely to identify facilitators related to parental factors than families at the pre-intention stage. Moreover, at the action stage facilitators were related to the facility/program. Conclusions: The identified facilitators and barriers, organized according to three stages of change (pre-intention, intention and action), provide important theoretical insights into how and why children and adolescents with CP and their parents might change their physical activity behavior. Implications for rehabilitation Understanding the barriers and facilitators of physical activity for children and adolescents with CP is essential for designing effective interventions to promote participation in this group. Using the three stages of change and the identified barriers and facilitators for participation can result in tailored advice to increase physical activity behavior.
Disability and Rehabilitation 01/2013; 35(19). DOI:10.3109/09638288.2012.748844 · 1.99 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: The aim of this study was to evaluate the interrater reliability and convergent validity of the American Academy for Cerebral Palsy and Developmental Medicine's (AACPDM) methodology for conducting systematic reviews (group design studies).
Four clinicians independently rated 24 articles for the level of evidence and conduct using AACPDM methodology. Study conduct was also assessed using the Effective Public Health Practice Project scale. Raters were randomly assigned to one of two pairs to resolve discrepancies. The level of agreement between individual raters and pairs was calculated using kappa (α=0.05) and intraclass correlations (ICCs; α=0.05). Spearman's rank correlation coefficient was calculated to evaluate the relationship between raters' categorization of quality categories using the two tools.
There was acceptable agreement between raters (κ=0.77; p<0.001; ICC=0.90) and between assigned pairs (κ=0.83; p<0.001; ICC=0.96) for the level of evidence ratings. There was acceptable agreement between pairs for four of the seven conduct questions (κ=0.53-0.87). ICCs (all raters) for conduct category ratings (weak, moderate, and strong) also indicated good agreement (ICC=0.76). Spearman's rho indicated a significant positive correlation for the overall quality category comparisons of the two tools (0.52; p<0.001).
The AACPDM rating system has acceptable interrater reliability. Evaluation of its study quality ratings demonstrated reasonable agreement when compared with a similar tool.
[Show abstract][Hide abstract] ABSTRACT: To explore facilitators and barriers to participation in physical activity and sport in youth with cerebral palsy (CP).
This was a qualitative study involving in-depth focus group interviews with 33 ambulatory youth with CP and their parents. The interviews were conducted until informational redundancy was achieved.
Youth with CP and their parents reported personal and environmental facilitators and barriers to participation in physical activity. Seven major themes related to personal and environmental factors were identified.
This study suggests that various personal and environmental factors play a key role in determining the extent to which youth with CP participate in physical activity. The facilitators and barriers identified provide important theoretical insights into how and why youth with CP and their parents might change their physical activity behavior.
The Journal of pediatrics 04/2012; 161(3):488-94. DOI:10.1016/j.jpeds.2012.02.042 · 3.79 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: Evidence-based recommendations regarding which exercise tests to use in children and adolescents with cerebral palsy (CP) are lacking. This makes it very difficult for therapists and researchers to choose the appropriate exercise-related outcome measures for this group. This study aimed to identify a core set of exercise tests for children and adolescents with CP.
Fifteen experts (10 physical therapists/researchers and five exercise physiologists; three from the Netherlands, two from the USA, one from the UK, five from Canada, and four from Australia) participated in a Delphi survey which took four stages to achieve a consensus. Based on the information that was collected during the survey, a core set of measures was identified for levels I to IV of the Gross Motor Function Classification System (GMFCS).
For children with CP classified at GMFCS levels I and II, tests were identified for two motor skills (walking and cycling). For the subgroup of children with CP classified at GMFCS level III, the tests that were identified related to walking, cycling, and arm cranking. For children with CP classified at GMFCS level IV, the tests included in the core set were related to cycling and arm cranking.
The core set will help physical therapists, exercise physiologists, and other health professionals who work with children and adolescents with CP to decide which test(s) to use in clinical practice or research. This will facilitate comparability of results across studies and clinical programmes.
[Show abstract][Hide abstract] ABSTRACT: Family-centred service, functional goal setting and co-ordination of a child's move between programmes are important concepts of rehabilitation services for children with cerebral palsy identified in the literature. We examined whether these three concepts could be objectively identified in programmes providing services to children with cerebral palsy in Alberta, Canada.
Programme managers (n= 37) and occupational and physical therapists (n= 54) representing 59 programmes participated in individual 1-h semi-structured interviews. Thirty-nine parents participated in eleven focus groups or two individual interviews. Evidence of family-centred values in mission statements and advisory boards was evaluated. Therapists were asked to identify three concepts of family-centred service and to complete the Measures of Process of Care for Service Providers. Therapists also identified therapy goals for children based on clinical case scenarios. The goals were coded using the components of the International Classification of Functioning Disability and Health. Programme managers and therapists discussed the processes in their programmes for goal setting and for preparing children and their families for their transition to other programmes. Parents reflected on their experiences with their child's rehabilitation related to family-centredness, goal setting and co-ordination between programmes.
All respondents expressed commitment to the three concepts, but objective indicators of family-centred processes were lacking in many programmes. In most programmes, the processes to implement the three concepts were informal rather than standardized. Both families and therapists reported limited access to general information regarding community supports.
Lack of formal processes for delivery of family-centred service, goal-setting and co-ordination between children's programmes may result in inequitable opportunities for families to participate in their children's rehabilitation despite attending the same programme. Standardized programme processes and policies may provide a starting point to ensure that all families have equitable opportunities to participate in their child's rehabilitation programme.
Child Care Health and Development 11/2010; 38(1):41-7. DOI:10.1111/j.1365-2214.2010.01160.x · 1.69 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: The delivery of paediatric rehabilitation services is complex due to the involvement of different service sectors and diverse models of care. Parents of children with disabilities find it challenging to navigate successfully through complicated service delivery systems. Cross-sectoral collaboration to improve continuity of care for children with disabilities and their families is viewed as ideal in public policies. The purpose of this research was to explore how ministerial cultures, processes and structures influence inter-ministerial collaboration for the purpose of enhancing continuity of care for children with disabilities and their families in a Western Canadian province. Six key informants from three government Ministries that funded paediatric rehabilitation services participated in individual, semi-structured interviews between January and May of 2007. Nineteen provincial public policy documents were reviewed. Hall's framework guided the analysis of the key informant interviews and policy documents. Influences of organisational culture, processes and structures on cross-ministerial collaboration were classified into the categories of ideas-values and beliefs that underlie policy development, interests-influence of various policy actors and institutions-structures and processes used to deliver public policy. Fundamental ideological and structural differences were apparent across the three ministries that affected the ease of inter-ministerial collaboration towards ensuring continuity of care for children with disabilities. Variations in ideas (philosophy and values) and institutions (geography and service delivery structure, relationships with regional governance, mission and function, choice of policy instruments and financial processes) are presented and implications for service delivery are explored.
Health & Social Care in the Community 07/2010; 18(4):378-88. DOI:10.1111/j.1365-2524.2009.00909.x · 1.15 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: Contemporary rehabilitation literature emphasises functional goals for children with disabilities and use of a collaborative goal-setting process grounded in principles of family centred service delivery.
To explore parents' experiences with goals and goal setting.
We conducted a qualitative study with 11 focus groups and two individual interviews with 39 parents of children with cerebral palsy living in western Canada. We used an inductive, thematic analysis to identify prominent themes.
The analysis revealed five themes representing goals that were meaningful to parents and provided insight into parents' experiences with goal-setting processes in occupational and physical therapy: (1) movement as the means to functional success; (2) physical health and fitness are important therapy goals; (3) the importance of leading happy, fulfilling lives and being accepted by others; (4) 'We can't do it all': balancing therapy with the demands of everyday life; and (5) shifting roles and responsibilities in goal setting.
The variability noted both in parents' desired role in goal setting and in goals important to parents highlights the importance of establishing trusting relationships with families so that family goals, values, individual circumstances, and desired level of participation in goal setting can be openly discussed.
Disability and Rehabilitation 01/2010; 32(3):248-58. DOI:10.3109/09638280903095890 · 1.99 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: To explore therapists' goal setting and intervention with children with cerebral palsy, and to examine their acceptance of children's use of compensatory movement strategies.
Interviews were conducted with 23 occupational therapists and 31 physical therapists. Goals and assumptions of relationships between intervention approaches and expected outcomes were coded using the International Classification of Functioning, Disability, and Health (ICF). Therapists' acceptance of compensatory movement strategies was rated.
Thirty-three therapists identified goals representing the ICF activity component. Therapists working with younger children identified goals representing the ICF body function/structure component. Twenty-four therapists assumed that an intervention targeted at 1 ICF component would affect an outcome in a different component. Eleven therapists would not accept compensatory movement strategies.
Most therapists' goals are congruent with principles encouraging functional goals. The ICF matrix developed for this study may be useful for clinical evaluation and documentation of assumed relationships among interventions and outcomes.
Pediatric physical therapy: the official publication of the Section on Pediatrics of the American Physical Therapy Association 02/2008; 20(4):334-9. DOI:10.1097/PEP.0b013e31818a1d41 · 1.04 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: PURPOSE: To review research regarding mechanisms of muscle contracture in cerebral palsy (CP) and the effectiveness of stretching, and to discuss current physical therapy stretching practices. Community-based recreation opportunities that encourage flexibility and fitness are explored as alternatives to traditional therapy stretching approaches. SUMMARY OF KEY POINTS: Mechanisms of muscle contracture in children with CP are unclear and clinical research evaluating the effects of stretching is inconclusive. Recent shifts in thinking about the management of children with CP suggest an increased emphasis on flexibility, fitness, and participation in activities that are meaningful to children and families. STATEMENT OF CONCLUSIONS: Additional research is needed to explore the structural changes that occur in the shortened muscles of children with CP and the effects of stretching practices used in pediatric physical therapy. RECOMMENDATIONS FOR CLINICAL PRACTICE: Physical therapists can consider innovative alternatives that integrate flexibility and fitness goals with community-based recreation programs.
Pediatric physical therapy: the official publication of the Section on Pediatrics of the American Physical Therapy Association 02/2008; 20(2):173-8. DOI:10.1097/PEP.0b013e3181728a8c · 1.04 Impact Factor