Assessing participation of children with acquired brain injury and cerebral palsy: a systematic review of measurement properties.

AIM: To examine which instruments used to assess participation of children with acquired brain injury (ABI) or cerebral palsy (CP) align with attendance and/or involvement constructs of participation; and to systematically review measurement properties of these instruments in children with ABI or CP, to guide instrument selection. METHOD: Five databases were searched. Instruments that quantified 'attendance' and/or 'involvement' aspects of participation according to the family of participation-related constructs were selected. Data on measurement properties were extracted and methodological quality of the studies assessed. RESULTS: Thirty-seven instruments were used to assess participation in children with ABI or CP. Of those, 12 measured attendance and/or involvement. The reliability, validity, and responsiveness of eight of these instruments were examined in 14 studies with children with ABI or CP. Sufficient measurement properties were reported for most of the measures, but no instrument had been assessed on all relevant properties. Moreover, most psychometric studies have marked methodological limitations. INTERPRETATION: Instruments to assess participation of children with ABI or CP should be selected carefully, as many available measures do not align with attendance and/or involvement. Evidence for measurement properties is limited, mainly caused by low methodological study quality. Future studies should follow recommended methodological guidelines. WHAT THIS PAPER ADDS: Twelve instruments used to assess participation of children with acquired brain injury (ABI) or cerebral palsy (CP) aligned with attendance/involvement. Seven instruments have some psychometric evidence supporting their use with children with CP. For children with ABI, only the Child and Adolescent Scale of Participation has shown preliminary evidence of measurement properties.

Measures used to quantify participation in childhood disability and their alignment with the family of participation-related constructs: a systematic review.

AIM: We aimed to identify measures used to assess the participation of disabled children and to map the measures' content to the family of participation-related constructs (fPRC) to inform future research and practice. METHOD: Six databases were searched to identify measures used to assess participation in health, psychology, and education research. Included studies involved children aged 0 to 18 years with a permanent impairment or developmental disability and reported use of a quantitative measure of participation. A second search sought relevant literature about each identified measure (including published manuals) to allow a comprehensive understanding of the measure. Measurement constructs of frequently reported measures were then mapped to the fPRC. RESULTS: From an initial yield of 32 767 articles, 578 reported one or more of 118 participation measures. Of these, 51 measures were reported in more than one article (our criterion) and were therefore eligible for mapping to the fPRC. Twenty-one measures quantified aspects of participation attendance, 10 quantified aspects of involvement as discrete scales, and four quantified attendance and involvement in a manner that could not be separated. INTERPRETATION: Improved understanding of participation and its related constructs is developing rapidly; thoughtful selection of measures in research is critical to further our knowledge base. WHAT THIS PAPER ADDS: The fPRC can support our rapidly evolving and expanding understanding of participation. Instruments selected to measure participation do not always align with emerging concepts. Matching research aims to a chosen measure's content will improve understanding of participation. Opportunities exist to develop validated participation measures, especially self-reported measures of involvement.

Characteristics Influencing Diversity of Participation of Children in Activities Outside School.

OBJECTIVE: A cross-sectional survey was conducted to determine which personal and environmental characteristics influenced diversity of participation in activities outside school for typically developing children and adolescents. METHOD: Four hundred twenty-two (215 boys) typically developing Australian children (mean = 11.0 yr) completed the Children's Assessment of Participation and Enjoyment (CAPE) and the Preferences for Activity of Children to describe their participation on five activity types: Recreational, Active Physical, Social, Self-Improvement, and Skill-Based. Linear regression analyses were conducted. RESULTS: Predictors of participation diversity were age and preference for Recreational (aR² = .44); preference for Active Physical (aR²= .19); gender, school type, and preference for Social (aR² = .19); preference for Skill-Based (aR² = .25); and gender, school style, socioeconomic score, and preference for Self-Improvement (aR² = .24). CONCLUSION: Preference plays a key role in determining the diversity of participation in activities outside school.

Participation trajectories: impact of school transitions on children and adolescents with cerebral palsy.

AIM: To describe participation trajectories, and impact of school transitions on those trajectories, of children with cerebral palsy (CP). METHOD: This population-based longitudinal study assessed participation in activities outside school of children with CP born in 1994/1995. Eligible children contributed data between two and five occasions over 9 years, and had parents with sufficient English proficiency to complete the measures: the Children's Assessment of Participation and Enjoyment, and the Preferences for Activities of Children. Linear mixed models were used to assess the relationships between participation and age and the impact of transition. RESULTS: At study commencement (2006), 233 children with CP born in 1994/1995 were registered in Victoria; 93 (51 males, 42 females; mean age 11y 2mo, age range 10-12y) contributed longitudinal data. Participation diversity and intensity decreased over time for recreational, active physical, and self-improvement activities (p<0.009). Social participation increased over time: diversity, intensity, and frequency (p<0.007). All of the identified slopes were generally small (ß≤0.11, 1-point change every 9y) except for recreational diversity scores (ß=-0.29). Transition from primary and secondary school had little impact on participation. INTERPRETATION: Findings of increased social participation over time are encouraging. Declining participation in other activity types suggests that action is needed to ensure that meaningful recreation and leisure activities are maintained as adolescents with CP transition to adulthood.

'Participation': a systematic review of language, definitions, and constructs used in intervention research with children with disabilities.

AIM: Improving participation of children with disabilities is a priority; however, the participation construct lacks clarity. This systematic review investigated how researchers defined 'participation' and the language used in participation intervention research. METHOD: Nine health and education databases were searched for intervention studies of children with disabilities that included a participation outcome. Quantitative data were extracted using a customized form, and participation text data were extracted verbatim. Themes were derived using a thematic coding approach. These participation themes were applied to the outcome measures used in the included studies to compare participation language with the methods used to quantify participation changes. RESULTS: Of the 2257 articles retrieved, 25 were included in this review. Five participation themes and nine subthemes were developed. Two themes, attendance and involvement, were directly related to the participation construct. Three additional themes described related concepts: preferences, activity competence, and sense of self. INTERPRETATION: Attendance and involvement seem to describe the essence of the participation concept. The related themes may provide important avenues to enhance participation outcomes. This review highlighted the need for researchers to define the construct under investigation clearly and select measures carefully, as measurement choice is the mechanism through which the concept is operationalized in research.

Kinematic gait deficits at the trunk and pelvis: characteristic features in children with hereditary spastic paraplegia.

AIM: To examine the kinematic gait deviations at the trunk and pelvis of children with hereditary spastic paraplegia (HSP). METHOD: This exploratory observational study quantified gait kinematics for the trunk and pelvis from 11 children with HSP (7 males, 4 females) using the Gait Profile Score and Gait Variable Scores (GVS), and compared the kinematics to data from children with typical development using a Mann-Whitney U test. RESULTS: Children with HSP (median age 11y 4mo, interquartile range 4y) demonstrated large deviations in the GVS for the trunk and pelvis in the sagittal and coronal planes when compared to the gait patterns of children with typical development (p=0.010-0.020). Specific deviations included increased range of movement for the trunk in the coronal plane and increased excursion of the trunk and pelvis in the sagittal plane. In the transverse plane, children with HSP demonstrated later peaks in posterior pelvic rotation. INTERPRETATION: The kinematic gait deviations identified in this study raise questions about the contribution of muscle weakness in HSP. Further research is warranted to determine contributing factors for gait dysfunction in HSP, especially the relative influence of spasticity and weakness.

A descriptive study of the participation of children and adolescents in activities outside school.

BACKGROUND: Knowledge about patterns of participation can be used to highlight groups of children and adolescents with low attendance, or low involvement in activities and who may therefore be at risk of mental or physical health concerns. This study used the Children's Assessment of Participation and Enjoyment (CAPE) and the Preferences for Activity of Children (PAC) to describe the patterns of participation of children and adolescents in activities outside mandated school in Victoria, Australia. METHODS: A cross-sectional survey of Victorian children and adolescents was conducted. Eligible participants were aged 6 to 18 years, enrolled in mainstream schools, with sufficient English language skills to complete the questionnaires. Parents of participants completed a demographic questionnaire. Sample representativeness was assessed against Victorian population statistics for gender, school type, language spoken at home and socio-economic status. Data for the CAPE and PAC were summarised using descriptive statistics. Patterns of activity diversity by age were assessed using curve estimation, with additional analyses to describe differences between genders. RESULTS: Of 9337 potential participants targeted through school advertising, 512 agreed (5.5 % consent rate), and 422 questionnaires were returned (82.4 % response rate). The sample was representative in terms of gender and language. Compared to the Victorian population, a slightly higher proportion of participants attended Government and Catholic schools and there was evidence of marginally greater socioeconomic resources than the population average. A broad range of recreational, active physical, social, skill-based and self-improvement activities were completed by all age groups. There was a reduction in the number and enjoyment of recreational activities with increasing age. In contrast, there was relative stability in intensity, frequency and preference scores across the age-groups for all activity types. Female participants typically took part in more activities (higher diversity scores), more intensely, with higher enjoyment and had higher preferences for each activity type than males, with the exception of active physical activities. CONCLUSIONS: This study provides evidence of the participation patterns of typically developing children and adolescents in activities outside school. The findings have implications for researchers, clinicians and educators for comparative purposes and to inform future research.

Minimising impairment: Protocol for a multicentre randomised controlled trial of upper limb orthoses for children with cerebral palsy.

BACKGROUND: Upper limb orthoses are frequently prescribed for children with cerebral palsy (CP) who have muscle overactivity predominantly due to spasticity, with little evidence of long-term effectiveness. Clinical consensus is that orthoses help to preserve range of movement: nevertheless, they can be complex to construct, expensive, uncomfortable and require commitment from parents and children to wear. This protocol paper describes a randomised controlled trial to evaluate whether long-term use of rigid wrist/hand orthoses (WHO) in children with CP, combined with usual multidisciplinary care, can prevent or reduce musculoskeletal impairments, including muscle stiffness/tone and loss of movement range, compared to usual multidisciplinary care alone. METHODS/DESIGN: This pragmatic, multicentre, assessor-blinded randomised controlled trial with economic analysis will recruit 194 children with CP, aged 5-15 years, who present with flexor muscle stiffness of the wrist and/or fingers/thumb (Modified Ashworth Scale score ≥1). Children, recruited from treatment centres in Victoria, New South Wales and Western Australia, will be randomised to groups (1:1 allocation) using concealed procedures. All children will receive care typically provided by their treating organisation. The treatment group will receive a custom-made serially adjustable rigid WHO, prescribed for 6 h nightly (or daily) to wear for 3 years. An application developed for mobile devices will monitor WHO wearing time and adverse events. The control group will not receive a WHO, and will cease wearing one if previously prescribed. Outcomes will be measured 6 monthly over a period of 3 years. The primary outcome is passive range of wrist extension, measured with fingers extended using a goniometer at 3 years. Secondary outcomes include muscle stiffness, spasticity, pain, grip strength and hand deformity. Activity, participation, quality of life, cost and cost-effectiveness will also be assessed. DISCUSSION: This study will provide evidence to inform clinicians, services, funding agencies and parents/carers of children with CP whether the provision of a rigid WHO to reduce upper limb impairment, in combination with usual multidisciplinary care, is worth the effort and costs. TRIAL REGISTRATION: ANZ Clinical Trials Registry: U1111-1164-0572 .

The effect of interventions aimed at improving participation outcomes for children with disabilities: a systematic review.

AIM: Enhancement of participation has been described as the ultimate outcome for health and educational interventions. The goal of this systematic review was to identify and critically appraise studies that aimed to improve the participation outcomes of children with disabilities. METHOD: Nine databases that index literature from the fields of health, psychology, and education were searched to retrieve information on research conducted with children with disabilities aged between 5 years and 18 years. Articles were included if the author(s) reported that participation was an intended outcome of the intervention. The articles included were limited to those reporting high-level primary research, as defined by Australia's National Health and Medical Research Council evidence hierarchy guidelines. No restrictions were placed on the type of intervention being investigated. RESULTS: Seven randomized controlled or pseudo-randomized studies were included. Only three of these studies identified participation as a primary outcome. Both individualized and group-based approaches to enhancing participation outcomes appeared to be effective. Studies of interventions with a primary focus on body function or activity level outcomes did not demonstrate an effect on participation outcomes. INTEPRETATION: Few intervention studies have focused on participation as a primary outcome measure. Approaches using individually tailored education and mentoring programmes were found to enhance participation outcomes, while exercise programmes, where participation was a secondary outcome, generally demonstrated little effect.

Associations between lower limb strength and gait velocity following stroke: a systematic review.

OBJECTIVE: The aim of this systematic review was to identify literature examining associations between isometric strength and gait velocity following stroke. METHODS: An electronic search was performed using six online databases. Targeted searching of reference lists of included articles and three relevant journals was also performed. Two independent reviewers identified relevant articles, extracted data and assessed the methodological quality of included articles. Inclusion criteria involved studies that assessed univariate correlations between gait velocity and isometric strength of individual lower limb muscle groups in a stroke population. RESULTS: Twenty-one studies were included for review. The majority of included studies had a relatively small sample size. After accounting for sample size and methodological quality, the knee extensors showed poor-to-moderate correlations with gait velocity while the ankle dorsiflexors showed the strongest association with gait velocity. CONCLUSIONS: Current evidence suggests that the strength of the ankle dorsiflexors has a stronger correlation to gait velocity compared with other lower limb muscle groups. Consequently, a focus on increasing ankle dorsiflexor strength to improve gait velocity following stroke may be beneficial. However, due to limitations of the research identified, further research is needed to determine the associations between lower limb strength and gait velocity following stroke.

Effectiveness and feasibility of virtual reality and gaming system use at home by older adults for enabling physical activity to improve health-related domains: a systematic review.

BACKGROUND: use of virtual reality and commercial gaming systems (VR/gaming) at home by older adults is receiving attention as a means of enabling physical activity. OBJECTIVE: to summarise evidence for the effectiveness and feasibility of VR/gaming system utilisation by older adults at home for enabling physical activity to improve impairments, activity limitations or participation. METHODS: a systematic review searching 12 electronic databases from 1 January 2000-10 July 2012 using key search terms. Two independent reviewers screened yield articles using pre-determined selection criteria, extracted data using customised forms and applied the Cochrane Collaboration Risk of Bias Tool and the Downs and Black Checklist to rate study quality. RESULTS: fourteen studies investigating the effects of VR/gaming system use by healthy older adults and people with neurological conditions on activity limitations, body functions and physical impairments and cognitive and emotional well-being met the selection criteria. Study quality ratings were low and, therefore, evidence was not strong enough to conclude that interventions were effective. Feasibility was inconsistently reported in studies. Where feasibility was discussed, strong retention (≥70%) and adherence (≥64%) was reported. Initial assistance to use the technologies, and the need for monitoring exertion, aggravation of musculoskeletal symptoms and falls risk were reported. CONCLUSIONS: existing evidence to support the feasibility and effectiveness VR/gaming systems use by older adults at home to enable physical activity to address impairments, activity limitations and participation is weak with a high risk of bias. The findings of this review may inform future, more rigorous research.

More than just having fun! Understanding the experience of involvement in physical activity of adolescents living with cerebral palsy.

Purpose: To explore the experiences of involvement of adolescents living with cerebral palsy, and their parents, while participating in physical activity. Understanding involvement in physical activity may be used to guide future participation.Methods: Eight adolescents (mean age 13 years 11 months, SD 1 year 6 months) with cerebral palsy participated in a New Zealand-based high-level mobility programme (HLMP) focused on running skills, twice per week for 12 weeks. The adolescents and 12 parents were interviewed before, after the 12 weeks and 9-months following the HLMP. Guided by interpretative description, 38 interviews were coded, analysed, and interpreted.Results: Four themes were: "Turning up is not enough" ("There's no point being there if you're not involved"); "In it all the way", "Changes on a dime", and "What works for me." Perceptions of involvement varied between adolescents and parents. Being "very involved" related to high levels of focus, concentration, effort; but not always enjoyment.Conclusions: Focusing on enjoyment as the key experience of involvement understates the complexity and dynamic nature of involvement. "Being involved" is not always easy and may not mean the absence of discomfort or effort. Optimising the individuals' involvement continuum during physical activity may be essential to promote lifelong participation.IMPLICATIONS FOR REHABILITATIONAdolescents living with cerebral palsy and their parents have differing perspective of involvement and utilise different strategies to encourage being and staying active.Teaching adolescents living with cerebral palsy about their involvement continuum and optimal level of involvement for each activity, context and environment could promote sustained participation.To ensure adolescents are "being involved" in physical activity, opportunities for engagement, motivation and persistence are important; enjoyment is a possible, but not essential attribute of involvement.Encouraging involvement in physical activity can be a source of family conflict from a young age therefore clinicians have a role as an essential supporter, motivator and educator.

The Journey to Sustainable Participation in Physical Activity for Adolescents Living with Cerebral Palsy.

PURPOSE: To understand adolescents' and their parents' perspectives on 'being active', this study explored the experience of participation in physical activity (PA), the role of long-term participation in PA, and the importance of remaining active for life. METHODS: Eight ambulant adolescents with CP (aged 11-16 years, seven male) participated in a high-level mobility programme twice per week for 12 weeks. Guided using interpretive description, adolescents and 12 of their parents were interviewed before, after and nine months following the programme. Thirty-eight interviews were coded, analysed, and interpreted, informed by audit information, reflective journaling, and team discussions. RESULTS: Adolescents and their parents highly value being active now and into adulthood. Sustainable participation in PA requires adolescents and families to navigate complex environments (interpersonal, organisational, community, and policy). Core themes were: 'Just Doing it', 'Getting the Mix Right' (right people, right place, right time), 'Balancing the Continua' and 'Navigating the Systems'. The continua involved balancing intra-personal attributes: 'I will try anything' through to 'I will do it if I want to' and 'It's OK to be different' through to 'It sucks being disabled'. CONCLUSIONS: The journey to sustainable participation was complex and dynamic. Experiences of successful journeys are needed to help adolescents with CP "stay on track" to sustainable participation.

Effects of a 12 week community-based high-level mobility programme on sustained participation in physical activity by adolescents with cerebral palsy: a single subject research design study.

PURPOSE: To assess if a high-level mobility programme (HLMP) can promote sustained participation in physical activity by adolescents with cerebral palsy. METHODS: Eight adolescents with cerebral palsy, Gross Motor Function Classification System levels I-II, 11-16 years, participated in 24 community-based group HLMP sessions across 12 weeks. Participants set attendance, involvement, and physical performance goals, completed activity diaries over 58 weeks and undertook physical capacity tests. Measures of activity frequency and diversity (attendance) and involvement level were collected weekly across baseline (4-6 weeks), intervention (12 weeks), and nine months follow-up (including Covid lockdown). RESULTS: Median attendance was 23 of 24 HLMP sessions. Attendance goal/s attainment was highest during COVID lockdown. Involvement goals were consistently attained throughout all phases. Physical performance goal/s attainment was highest during intervention phase but reduced during nine months follow-up. Frequency of participation in physical activities varied greatly across study phases (range 0-33 episodes/week) with stable variety of activities and generally high 'involvement.' During the intervention, seven participants improved physical capacity and six maintained, or increased, the gains six months later. CONCLUSION: Most participants improved physical capacity post-intervention but only some had sustained attendance and involvement in physical activity, highlighting the complexity of physical activity participation.

Health professionals' promotion of sustained participation in physical activity needs to consider individual preferences for frequency, diversity and duration.Supporting and measuring involvement in physical activity should be prioritised as a key outcome of an intervention.Physical activity interventions should be followed up for longer than six months to determine sustained changes in participation outcomesMeasuring physical capacity and performance gains alone is insufficient to determine sustained, meaningful participation.

Health-related quality of life and strain in caregivers of Australians with Parkinson's disease: an observational study.

BACKGROUND: The relationship between health-related quality of life (HRQoL) in people with Parkinson's disease and their caregivers is little understood and any effects on caregiver strain remain unclear. This paper examines these relationships in an Australian sample. METHODS: Using the generic EuroQol (EQ-5D) and disease-specific Parkinson's Disease Questionnaire-39 Item (PDQ-39), HRQoL was evaluated in a sample of 97 people with PD and their caregivers. Caregiver strain was assessed using the Modified Caregiver Strain Index. Associations were evaluated between: (i) caregiver and care-recipient HRQoL; (ii) caregiver HRQoL and caregiver strain, and; (iii) between caregiver strain and care-recipient HRQoL. RESULTS: No statistically significant relationships were found between caregiver and care-recipient HRQoL, or between caregiver HRQoL and caregiver strain. Although this Australian sample of caregivers experienced relatively good HRQoL and moderately low strain, a significant correlation was found between HRQoL of people with PD and caregiver strain (rho 0.43, p < .001). CONCLUSION: Poor HRQoL in people with PD is associated with higher strain in caregivers. Therapy interventions may target problems reported as most troublesome by people with PD, with potential to reduce strain on the caregiver.

Psychometric properties of functional mobility tools in hereditary spastic paraplegia and other childhood neurological conditions.

AIM: To evaluate studies on the psychometric properties of measurement tools used to quantify functional mobility in children with hereditary spastic paraplegia (HSP) and other childhood neurological conditions. METHOD: Two independent reviewers identified measures previously used by clinicians to quantify functional mobility. Because our primary interest was HSP, the first search identified measurement tools in studies that included those with HSP. To enhance the generalizability, the second search examined the reliability, validity, and responsiveness of tools in children with a range of neurological conditions such as cerebral palsy, spinal muscular atrophy, Down syndrome, and traumatic brain injury. The Consensus-based Standards for the Selection of Health Measurement Instruments was used to rate the methodological quality of identified articles. RESULTS: The Gillette Functional Assessment Questionnaire (FAQ), the Functional Mobility Scale (FMS), the Gross Motor Function Measure (GMFM), the Rivermead Motor Assessment, and the Walking Index for Spinal Cord Injury II were identified for quantifying functional mobility. The FMS and GMFM were reliable, valid, and responsive to changes across a range of childhood neurological conditions. The FAQ was reliable and valid for measuring functional mobility in similar populations. INTERPRETATION: The FAQ, FMS, and GMFM are valid, reliable, and responsive measures in children with a range of neurological conditions.

Do physical activity interventions influence subsequent attendance and involvement in physical activities for children with cerebral palsy: a systematic review.

PURPOSE: To investigate if children with cerebral palsy have sustained attendance and involvement in physical activities after completing physical activity interventions. METHODS: The Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines were followed. Seven databases were searched for the period 2001-2020 with hand-searching of pertinent reference lists. Criteria for study inclusion were participants aged 0-18 years and ≥50% with cerebral palsy; follow-up ≥1 month beyond completion of the physical activity intervention; and measurement of attendance and/or involvement in any physical activity post-intervention. Study selection, data extraction, and risk of bias assessments (Physiotherapy Evidence Database (PEDro) or tool for non-randomised studies) were completed independently by paired reviewers. Results were compiled by narrative synthesis. RESULTS: Thirteen studies were included (11 randomised controlled trials (RCTs), two non-randomised case series; intervention sample sizes: 6-34). All study participants had cerebral palsy and were aged 4-16.7 years. PEDro scores for the RCTs ranged from 5 to 10; 10 did not blind one or more therapist, participant, or assessor. Two case series showed high risk of bias. Twelve studies reported on attendance, with positive changes in three studies. At 4-14 weeks post-intervention, two studies demonstrated positive changes were maintained. Four studies included involvement outcomes; one reporting positive changes in physical activity involvement four weeks after intervention completion. CONCLUSIONS: Physical activity attendance may be influenced by physical activity interventions in the short term, but more robust research designs are required to investigate whether gains can be sustained. Activity involvement, which may influence ongoing participation, is under-researched.Implications for RehabilitationPositive changes in attendance and involvement following physical activity interventions appear short term at best.Physical activity interventions should have longer follow-up periods to determine the effect on sustained physical activity participation.Careful selection and reporting of attendance and involvement outcome measures is required.The optimal physical activity intervention to increase attendance or involvement in physical activities remains uncertain.

Steering towards collaborative assessment: a qualitative study of parents' experiences of evidence-based assessment practices for their child with cerebral palsy.

PURPOSE: To understand parents' experiences of evidence-based assessment by health professionals for their child with cerebral palsy. METHODS: A qualitative interpretive description study was undertaken. Primary carers of children with cerebral palsy (aged 3-18 years) from south-eastern Australia were invited to participate. Face-to-face interviews were held using a semi-structured topic guide and data analyzed inductively. Credibility was ensured through: journal reflections; co-author review; audit trail; and, participant member-checking. RESULTS: Fourteen parents of children with cerebral palsy, representing Gross Motor Functional Classification System levels I-V, participated. Six themes emerged: (1) Protection; (2) Positively Framed; (3) Bridging the Gap; (4) Involvement; (5) Finding Worth; and (6) Trust. Central to parents' experience was protection of their child's identity and personal self. Assessment can be emotionally confronting, at any stage. Representing the child positively and highlighting possibilities was deemed essential. Parents' involvement ranged from being overlooked spectators to being instigators of assessment. Evidence-based assessment was worthwhile when relevant to parents' direction and family context. The researchers' interpretive description generated a schema and metaphor-the Steering Wheel for Collaborative Assessment. CONCLUSIONS: A strengths-based approach to diagnosis and assessment is essential. The resulting interpretive description may assist health professionals align evidence-based assessment practices with family-centred care.Implications for rehabilitationParents of children who have cerebral palsy describe having to protect their child's identity and representation, and their own personal well-being, through evidence-based assessment and diagnostic processes.Involving parents in the process of evidence-based assessment and adopting a strengths-based approach is essential.The interpretive description developed-the Steering Wheel for Collaborative Assessment-may assist health professionals to implement evidence-based assessment tools in ways consistent with family-centred care principles.

Systemic adverse events following botulinum toxin A therapy in children with cerebral palsy.

AIM: We studied the incidence of incontinence and respiratory events in children with cerebral palsy who received injections of botulinum toxin A (BoNT-A). METHOD: We used multivariable logistic regression to investigate relationships between (BoNT-A) dose, Gross Motor Function Classification System (GMFCS) level, and the incidence of bladder or bowel incontinence, unplanned hospital admission, emergency department consultation or prescription of antibiotics for respiratory symptoms, and diagnosis of upper respiratory tract infection. RESULTS: Of 1980 injection episodes in 1147 children (mean age 4y 7mo, SD 1y 10mo, range 9mo-23y), 488 (25%) were in children with unilateral involvement and 1492 (75%) in children with bilateral involvement. At the time of injection 440 (22.2%) of children were at GMFCS level I, 611 (30.9%) were at level II, 330 (16.7%) were at level III, 349 (17.6%) were at level IV, and 250 (12.6%) were at level V. The incidence of serious adverse events was low, with 19 episodes of incontinence (1% of injection episodes) and 25 unplanned hospital admissions due to respiratory symptoms (1.3%). Incontinence typically resolved spontaneously 1 to 6 weeks after injection. The incidence of adverse events was associated with GMFCS level and dose of BoNT-A. INTERPRETATION: The incidence of serious adverse events was low but suggests systemic spread as well as a procedural effect. We recommend reviewing upper dose limits for children at all GMFCS levels, particularly those at levels IV and V with a history of aspiration and respiratory disease. In these children, alternatives to mask anaesthesia may be particularly important.

Sustained participation in community-based physical activity by adolescents with cerebral palsy: a qualitative study.

Purpose: Short-term physical activity programs may encourage adolescents with cerebral palsy to participate in physical activity but how to sustain their involvement is not well known. This qualitative study aimed to identify facilitators that successfully sustain physical activity participation by adolescents with cerebral palsy.Materials and methods: Adolescents (12-18 years) with cerebral palsy [Gross Motor Function Classification System (GMFCS) levels I-V, without moderate-severe intellectual disability] who participated in regular physical activity were eligible, as well as one parent and an individual who facilitated their physical activity. Data were gathered using semi-structured interviews; verbatim transcripts were analysed using inductive thematic analysis within individuals (n = 15), triads (n = 5), and across participant groups (adolescents, parents and facilitators).Results: Five triads participated (male adolescents, 13-16 years, GMFCS levels I-III). Seven themes emerged: getting started, wanting to succeed, a sense of belonging, the coach is important, endorsement to continue, endorsement to support and being passionate. The themes were synthesized into the Framework for Sustained Participation, which describes the interaction among themes.Conclusions: The Framework for Sustained Participation highlights strategies that may be useful for adolescents, parents, sports facilitators, clinicians and researchers to help ambulatory male adolescents with cerebral palsy continue to participate in physical activity.Implications for rehabilitationSustaining participation in physical activity has the potential to enhance long-term health benefits of young people with cerebral palsy.Key facilitators of sustained physical activity in adolescents with cerebral palsy included tailoring the activity, getting the right coach and the adolescents' desire for health and fitness.The Framework of Sustained Participation may assist clinicians and facilitators who work with young people with cerebral palsy to structure their support in ways that will successfully sustain the adolescents' participation in physical activity.