Search

To review the evidence for the effects of adapted bicycle riding on body structures and functions, activity, participation, and quality of life outcomes in children with disabilities, along with family-level participation outcomes.A systematic review with searches of nine electronic databases to identify studies involving participants with a developmental disability aged 4 to 18 years who used a dynamic adapted bicycle was completed in August 2021. Risk of bias was assessed based on individual study designs. A narrative synthesis integrated the findings of the included studies. Certainty of evidence was synthesized using the Grading of Recommendations Assessment, Development and Evaluation (GRADE) approach.Ten studies were included with 234 participants. Five studies reported outcomes at the body structures and functions level, ten reported activity-level outcomes, two reported participation-related outcomes, and none assessed quality of life or family participation in social and recreational activities.Adapted bicycle riding interventions may improve gross motor function, enhance lower-limb muscle strength, and promote physical activity; however, certainty of evidence of effects was rated very low using GRADE. Further research is required to understand the impact of adapted bicycle riding on the participation outcomes of children and adolescents with disabilities and on family-level participation in social and recreational activities.

To systematically identify and evaluate the measurement properties of patient-reported outcome measures (PROMs) and observer-reported outcome measures (parent proxy report) of pain coping tools that have been used with children and young adults (aged 0-24 years) with a neurodevelopmental disability.A two-stage search using MEDLINE, Embase, CINAHL, Web of Science, and PsycInfo was conducted. Search 1 in August 2021 identified pain coping tools used in neurodevelopmental disability and search 2 in September 2021 located additional studies evaluating the measurement properties of these tools. Methodological quality was assessed using the COnsensus-based Standards for the Selection of Health Measurement INstruments (COSMIN) guidelines (PROSPERO protocol registration no. CRD42021273031).Sixteen studies identified seven pain coping tools, all PROMs and observer-reported outcome measures (parent proxy report) versions. The measurement properties of the seven tools were appraised in 44 studies. No tool had high-quality evidence for any measurement property or evidence for all nine measurement properties as outlined by COSMIN. Only one tool had content validity for individuals with neurodevelopmental disability: the Cerebral Palsy Quality of Life tool.Pain coping assessment tools with self-report and parent proxy versions are available; however, measurement invariance has not been tested in young adults with a neurodevelopmental disability. This is an area for future research.

To review the longitudinal trajectories – and the factors influencing their development – of mental health problems in children with neurodevelopmental disabilities. Systematic review methods were employed. Searches of six databases used keywords and MeSH terms related to children with neurodevelopmental disabilities, mental health problems, and longitudinal research. After the removal of duplicates, reviewers independently screened records for inclusion, extracted data (outcomes and influencing factors), and evaluated the risk of bias. Findings were tabulated and synthesized using graphs and a narrative. Searches identified 94,662 unique records, from which 49 publications were included. The median publication year was 2015. Children with attention deficit hyperactivity disorder were the most commonly included population in retrieved studies. In almost 50% of studies, trajectories of mental health problems changed by

To compare the participation attendance and involvement of children and young people with and without cerebral palsy (CP) in a low-resource area of Uganda.Eighty-two children and young people with CP aged 6 to 22 years (49 males, 33 females) and 81 age- and sex-matched peers without CP (6 to 22 years; 48 males, 33 females) participated in this population-based, cross-sectional study. Data on attendance and involvement in 20 home and community activities were obtained using Picture My Participation, an instrument intended to measure participation in children with disabilities, particularly in low- and middle-income countries. Non-parametric statistical methods were used to assess between-group differences. Effect size estimates were calculated.Pooled attendance across all activities was lower in children and young people with CP than in children and young people without CP (p 0.001) and for each activity item (p = 0.004 to p 0.001). The effect sizes for each activity were 0.2 to 0.7. Between-group differences were larger for community activities than for home activities. Pooled involvement across all activities was less in the group with CP (p 0.001) and for each activity (p = 0.014 to p 0.001). The effect sizes for each activity were 0.2 to 0.5. Children and young people in Gross Motor Function Classification System (GMFCS) levels I and II had higher attendance (p 0.001) and involvement (p = 0.023) than those in GMFCS levels III to V.Participation of young people living with CP in Uganda was restricted, especially for community activities. There is a need to identify context-specific participation barriers and develop strategies to overcome them.

To map research conducted with adults with cerebral palsy (CP) to the International Classification of Functioning, Disability and Health (ICF) to understand the array of research available, identify key clinical messages and inform future research.An overview of systematic reviews was conducted. Comprehensive searches (to December 2021) were conducted in PsycINFO, Web of Science, MEDLINE, CINAHL, Cochrane, JBI, and EMBASE. Eligible studies were systematic reviews that included primary studies of adults with CP. Included reviews were assessed for study quality and mapped to the ICF components and chapters. A narrative synthesis of commonly reported outcomes within the component/s and chapter/s was conducted.All 24 included reviews were published since 2010. Thirteen focused on body functions: movement related functions and cardiovascular and respiratory systems. Although nine reviews focused on gait and mobility, considerable overlap of included studies limited the volume of evidence and variability in review quality limited generalisability of findings.Research involving adults with CP is growing; however, this overview of reviews found a predominant focus on mobility and gait. Future research, informed by consumer priorities, is needed to address a broader range of key health and participation outcomes.Implications for rehabilitationFitness, mobility, and gait were the most common research topics found in these systematic reviews suggesting a narrow research focus in adults with CP.There are significant gaps in our knowledge to inform clinical messages for practice about broad long-term outcomes of CP and how best to support their activity performance and participation.There is very limited evidence with which to guide and support rehabilitation professionals working in this field.

Purpose: We describe the development of an observational video coding tool, the Rehabilitation Observation Measure of Engagement (ROME), to quantify engagement in rehabilitative settings at the person (internal state of an individual) and between-system (interaction between individuals) level. Methods: Forty-nine children with unilateral spastic cerebral palsy (29 males; Age: M = 9.28 yrs, SD = 3.08 yrs) and their interventionists were videotaped during different activities. Construct validity was examined by correlating the ROME with the Engagement vs. Disaffection with Learning Survey and the Pediatric Rehabilitation Intervention Measure of Engagement – Observation questionnaire. Inter- and intra-rater reliability were examined using two independent raters. The ROME’s responsiveness to change was examined by comparing scores across activities. Results: For construct validity, results showed a positive correlation for person-level engagement (r = 0.444, p = 0.003). No relationship was found between-system-level engagement. High intrarater (91.8%) and interrater (96.1%) reliability was found. The ROME’s responsiveness to change was supported by children exhibiting lower engagement scores during repetitive shaping activities. Conclusion: These findings provide evidence that the ROME is a reliable tool to objectively examine the construct of engagement within rehabilitation and is valid for quantifying person-level engagement. It provides information that cannot be extracted from questionnaires and can help guide intervention decisions. Implications for rehabilitationBehavioral characteristics, including engagement, of the agents involved in rehabilitation are largely unstudied, although engagement is expected to benefit motor learning.The Rehabilitation Observation Measure of Engagement (ROME) is an observation measure that uses predefined codes and can be used universally, as it is not limited to specific language or cognitive levels.The ROME is a reliable tool for objectively measuring the role of the construct of behavioral engagement during rehabilitation and valid for examining person-level engagement.The ROME may be used as a measure of client and service provider process, of intervention quality, or as a decision guide. Behavioral characteristics, including engagement, of the agents involved in rehabilitation are largely unstudied, although engagement is expected to benefit motor learning. The Rehabilitation Observation Measure of Engagement (ROME) is an observation measure that uses predefined codes and can be used universally, as it is not limited to specific language or cognitive levels. The ROME is a reliable tool for objectively measuring the role of the construct of behavioral engagement during rehabilitation and valid for examining person-level engagement. The ROME may be used as a measure of client and service provider process, of intervention quality, or as a decision guide.

Investigate the effect of exercise for adults with cerebral palsy (CP) on quality of life, participation (attendance and involvement in life situations), functional mobility, pain, fatigue, mood, and self-efficacy. A systematic review was completed. Twelve databases were searched from inception to August 2022 for studies including participants (≥16 years) with cerebral palsy, and that evaluated an exercise intervention. Two reviewers independently assessed eligibility, risk of bias, and extracted data. Seventeen studies (total n = 532) were included: 12 randomised control trials, four non-randomised trials, and one single case experimental design. Interventions studied were predominantly strength, aerobic or treadmill training, dance, and swimming. No study assessed participation, pain or mood. Of two studies that assessed quality of life, one reported a positive effect on an aspect of mental health immediately after the programme finished. All studies assessed functional mobility, but only one reported a positive effect. One study assessed self-efficacy and found no effect, and another assessed fatigue and reported conflicting results. The effect of exercise for adults with CP, on outcomes that adults report as important to them – quality of life, participation, pain, mood, and fatigue – are unknown.IMPLICATIONS FOR REHABILITATIONTo address outcomes important to adults with cerebral palsy (CP), it is important to understand how exercise affects participation and quality of life.All modes of exercise reviewed appear safe for adults with CP and choice should be based on the client’s preferences, access to services, and convenience.Addressing any needed accommodations in the environment and context is likely more important than exercise prescription parameters when tailoring exercise to meet the needs of adults with CP and sustain participation. To address outcomes important to adults with cerebral palsy (CP), it is important to understand how exercise affects participation and quality of life. All modes of exercise reviewed appear safe for adults with CP and choice should be based on the client’s preferences, access to services, and convenience. Addressing any needed accommodations in the environment and context is likely more important than exercise prescription parameters when tailoring exercise to meet the needs of adults with CP and sustain participation.

In the field of disability research and advocacy, the notion of 'cures' is contentious. Cerebral palsy (CP) is no exception. In this narrative review, we combine perspectives gained during community consultation undertaken for the Australian and New Zealand Cerebral Palsy Strategy, 2020 with those published in the scientific and grey literature to understand whether 'cures for CP' is a reasonable and appropriate goal. We frame these perspectives through the lens of several ethical principles central to the discussion. These include maintaining hope while also being realistic, sensitivity to sharply different viewpoints amongst people with disability and their families, and responding to community priorities, societal attitudes, and identity. Through this exploration of the literature and perspectives, we arrived at a definition of 'cures for CP' that is pluralized and focuses on functional improvement and/or symptom reduction whilst still acknowledging the potential for neural repair/regeneration strategies.

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 Rehabilitation • Positive 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.

To investigate the effects of providing rigid wrist-hand orthoses plus usual multidisciplinary care, on reducing hand impairments in children with cerebral palsy. A pragmatic, multicentre, assessor-blinded randomised controlled trial aimed to enrol 194 children aged 5–15 years, with wrist flexor Modified Ashworth Scale score ≥1. Randomisation with concealed allocation was stratified by study site and passive wrist range. The treatment group received a rigid wrist-hand orthosis, to wear ≥6 h per night for 3 years. Analysis included repeated measures mixed-effects linear regression models, using intention-to-treat principles. The trial stopped early due to insufficient recruitment: 74 children, across all Manual Ability Classification System levels, were randomised (n = 38 orthosis group; n = 36 control). Mean age was 10.2 (SD 3.1) years (orthosis group) and 9.1 (SD 2.8) years (control). Data showed some evidence that rigid wrist-hand orthosis impacted passive wrist extension with fingers extended in the first year [mean difference between-groups at 6 months: 13.15° (95%CI: 0.81–25.48°, p = 0.04); 12 months: 20.94° (95%CI: 8.20–33.69°, p = 0.001)]. Beyond 18 months, participant numbers were insufficient for conclusive findings. The study provided detailed data about short- and long-term effects of the wrist-hand orthosis and highlighted challenges in conducting large randomised controlled trials with this population. Trial Registration: Australia and New Zealand Clinical Trials Registry: U1111-1164-0572 IMPLICATIONS FOR REHABILITATIONThere may be incremental benefit, for children with cerebral palsy, at 6 and 12 months on passive wrist range from wearing a rigid wrist-hand orthosis designed according to this protocol.The rigid-wrist-hand orthosis evaluated in this study, which allowed for some tailoring for individual children’s presentations, differed in design from past recommendations for “resting hand” positioning.Longitudinal follow up of children with cerebral palsy prescribed a rigid wrist-hand orthosis is essential to monitor any benefit.Minor adverse events were commonly experienced when wearing the orthosis and should be discussed prior to prescription of a rigid wrist-hand orthosis. There may be incremental benefit, for children with cerebral palsy, at 6 and 12 months on passive wrist range from wearing a rigid wrist-hand orthosis designed according to this protocol. The rigid-wrist-hand orthosis evaluated in this study, which allowed for some tailoring for individual children’s presentations, differed in design from past recommendations for “resting hand” positioning. Longitudinal follow up of children with cerebral palsy prescribed a rigid wrist-hand orthosis is essential to monitor any benefit. Minor adverse events were commonly experienced when wearing the orthosis and should be discussed prior to prescription of a rigid wrist-hand orthosis.

To evaluate feasibility of scaling up a 12-week community-based exercise program (Within a stepped wedge cluster randomised trial, seven domains of feasibility were assessed: demand, implementation, acceptability, practicality, adaptation, integration, and expansion.Of the 163 participants with disability (61 females; 20.8 ± 5 y) and 226 mentors who enrolled, 123 participants and mentors completedScaling-up

Purpose Children on the autism spectrum are reported to participate less in leisure activities than their peers. Little is known about what participation means for this group and the child’s voice has been largely absent, partly due to methodological limitations. To address this limitation, alternative methods of eliciting children’s perspectives are needed. The aim of this study is to elicit children’s views about their participation experiences using a multi-method approach, and children’s feedback on the method. Methods Four children on the autism spectrum (9–13 years) used a video recording device to collect data over a 1-week period on their participation in activities. The children recorded an in-the-moment narrative to describe the activity and their in-the-moment experiences. A follow-up individualised interview was conducted, allowing children to present their unique views on their activity participation and feedback. Results The children’s differing perspectives identified participation as a transactional and dynamic process. Involvement was described as an individual and subjective experience, with participation influenced by personal, social, and physical factors. Children viewed the research experience positively. Recording while participating “in-the-moment” was challenging. Conclusion The first-person perspective provided unique insights into the children’s participation experiences. This approach has the potential to inform methodological practices. IMPLICATIONS FOR REHABILITATION • Children can describe their experience of participation and identify internal and external factors that influence their participation. • Participation is a transactional and dynamic process. • Video provides a useful method for children to record their “in the moment” experiences. • Children’s video recordings provide a stimulus for interview discussions in both research and clinical practice.

Chien and Lin’s (2021) paper titled “Community participation of school aged children: Who is at risk of restricted participation?” considered influences on participation frequency, and how to defin...

Introduction In childhood disability research, the involvement of families is essential for optimal outcomes for all participants. ENVISAGE (ENabling VISions And Growing Expectations)-Families is a programme comprising five online workshops for parents of children with neurodevelopmental disorders. The workshops aim to introduce parents to strengths-based perspectives on health and development. The research is based on an integrated Knowledge Translation (iKT) approach, in which knowledge users are involved throughout the research process. This article is co-authored by the ENVISAGE health service researchers (N = 9) and parent partners (N = 3) to describe the process through which we co-developed and implemented the workshops. Methods Collaborative auto-ethnography methods, based on a combination of interviews, qualitative surveys, and discussions held to complete the Guidance for Reporting Involvement of Patients and Public-2 tool, were used to describe the co-design process, the benefits gained, and lessons learned. Findings Parents (n = 118) were involved in developing and implementing the ENVISAGE workshops across the different phases, as partners, collaborators, or participants. Three parents were involved as investigators throughout. We identify seven key ingredients that we believe are necessary for a successful parent–researcher working relationship: (i) consistent communication; (ii) clear roles and expectations; (iii) onboarding and feedback; (iv) flexibility; (v) understanding; (vi) self-reflection; and (vii) funding. Conclusion Patient and family engagement in research is a rapidly growing area of scholarship with new knowledge and tools added every year. As our team embarks on new collaborative studies, we incorporate this knowledge as well as the practical experience we gain from working together.

Purpose: To understand healthcare professionals’ perceptions of supports and barriers to routine clinical assessment, for children aged 3-18 years with cerebral palsy, evolved in the presence of a knowledge translation intervention. Methods: A prospective longitudinal mixed methods study was completed. The intervention comprised knowledge brokers, an e-evidence library, locally provided education and embedding routine clinical assessment in practice. Healthcare professionals from five disability services completed the Supports and Barriers Questionnaire and focus groups at baseline, 6, 12 and 24 months. Quantitative data were analysed descriptively and qualitative data using longitudinal framework analysis. Results: Questionnaire ratings indicated participants felt supported in implementing routine assessment over time. Subtle differences emerged from the longitudinal framework analysis. Participants shifted from ‘adopting’ to ‘embedding’ and ‘maintaining’ routine assessment. Integration of assessment was impacted by a new national disability funding model. Participants highlighted the need to maintain skills and for unambiguous, sustained communication between the organisation, clients, and stakeholders. If, how and why families engaged with routine assessment developed over time. Conclusions: After an initial focus on pragmatic implementation issues, over time healthcare professionals began to reflect more on the complexities of children and families’ engagement with assessment and the impact on the therapist-child-family relationship.

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., 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.

Purpose: To investigate the effect of a knowledge translation intervention on knowledge and frequency of routine evidence-based assessment behaviours of healthcare professionals working with children with cerebral palsy. Methods: A before-and-after longitudinal study was conducted in five disability organisations. Four organisations (Commencing Knowledge Translation group) implemented a multifaceted intervention: knowledge brokers, targeted education, electronic-evidence library, and clinical outcomes database. These strategies were already in place at the fifth organisation (Comparison group). Outcomes evaluated at 0, 6, 12, and 24 months were health-professional knowledge and routine assessment behaviours (self-report and “completeness” of clinical assessment). Generalised estimating equations determined longitudinal changes. Results: Four hundred and forty-seven professionals involved 861 children in the study. The Comparison group had higher knowledge and routine assessment behaviours at baseline. Professional knowledge in both groups remained stable (differences in change from baseline to 24 months: 0.3 units, 95%CI: −0.76 to 1.36). Assessment completeness of the Comparison group was stable (baseline mean 68 units, 95%CI: 65–71); the Commencing Knowledge Translation group improved from baseline mean 35 units (95%CI: 33–36), peaking at 12 months (mean 68 (95%CI: 65–71). Conclusions: Multifaceted organisational support improved health-professional routine evidence-based assessment behaviours with children with cerebral palsy, despite no change in knowledge. Trial registration: This trial was not a controlled health care intervention and was registered retrospectively: ACTRN12616001616460. The protocol of the trial was published in 2015 as follows: Imms et al. [6]. Implications for rehabilitation • A multifaceted knowledge translation intervention increased allied health professionals’ assessment behaviours. • Knowledge translation strategies can be chosen to target change in knowledge and/or change in behaviour. • Knowledge translation interventions should be designed to address organisational barriers and enhance organisational supports. • Interventions that target healthcare professionals’ behaviour directly can be effective even if their knowledge does not change.

Background Occupational therapy research has not fully utilized available research methods when exploring occupational therapists’ views on specific interventions and service provision nor when exploring consumer priorities and the impact of occupational therapy services. Q methodology, a quantitative method for the systematic assessment of qualitative data, is an approach that can be used to examine viewpoints related to occupational therapy. Aims/objectives To add experiential knowledge to guide researchers new to navigating Q methodology and encourage researchers to consider the application of Q methodology when exploring viewpoints pertinent to occupational therapy practice and research. Material and methods The application of Q methodology in published occupational therapy and occupational science research is identified, and an experience-based review of Q methods undertaken. Results More detailed explanation and reflection on each stage of Q methodology, including the factor analysis stage, than is currently available in the literature is presented to support successful implementation of this method. Conclusion Sharing experience in implementing Q methodology may inform and encourage researchers in its use as one method for bridging the gap between qualitative and quantitative data. Significance The rigor of the method's processes may add credibility to identified viewpoints and how they could inform occupational therapy practice. Key messages • methodology can be used in occupational therapy research to explore consumer and therapist viewpoints regarding interventions, service provision, priorities and the profession itself. • methodology employs a specific, repeatable process within each stage of the research process to ensure rigour. • methodology provides an approach to combining qualitative research methods with quantitative analysis techniques to understand the viewpoints of interest.

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. Electronic supplementary material The online version of this article (doi:10.1186/s12887-016-0623-9) contains supplementary material, which is available to authorized users.

Background The Neurological Hand Deformity Classification (NHDC) is an impairment-based tool that classifies hand deformity into one of two ordinal scales: flexion or extension deformities. Classification is made from live observation or from recorded video footage. Differentiation between the levels is determined by wrist position and wrist and finger movement. Purpose To examine aspects of validity and reliability of the NHDC. Study design A measurement study design. Methods Data from a convenience sample of 127 children with cerebral palsy, 66 males: 61 females, ranging in age from 8 months to 15 years, across all Manual Ability Classification System levels I to V, were analyzed. Construct validity was assessed by testing predetermined hypotheses of relationships between the NHDC and measures of body function and activity measures with observed performance using the Chi Squared Test of Independence and Spearman Correlation Coefficient. Test-retest and inter-rater reliability were assessed by calculating agreement between repeated measures and paired raters using weighted kappa and Cohen's kappa with 95% confidence intervals. Results Predicted hypotheses for the NHDC were met in nine of 10 Spearman's rho correlations with body structure measures and in 2 of 7 correlations with activity measures. Test-retest for flexion deformities: κw = 0.84; 95% CI 0.70-0.98; and extension deformities: κ = 1.0; 95% CI 1.0-1.0 was good to excellent; inter-rater reliability for flexion deformities: κw = 0.76; 95% CI 0.67-0.85; and extension deformities κ = 0.75; 95% CI 0.43-1.0 was moderate to excellent. Conclusion Expected relationships between the NHDC and other measures, stability between repeated measures and acceptable between-rater agreement supports confidence classifying hand deformity in children with cerebral palsy with the NHDC.

Purpose To report initial psychometric evidence on the Measure of Early Vision Use. Method Data on performance of the Measure of Early Vision Use scale were collected from 100 parents of children with cerebral palsy aged 0–12 years via online survey. Psychometric evaluation included assessment of scale dimensionality using Classical Test Theory and hypothesis testing for evidence of construct validity. Results Principal components analysis of the 14-item parent-rated Measure of Early Vision Use revealed one component with an eigenvalue of 9.343, explaining 66.7% of variance; internal consistency was high (Cronbach’s α = 0.96). Total scores ranged from 15–56 (Mean 42.8, standard deviation = 10.6). The results support seven pre-defined hypotheses including statistically significant differences in MEVU-total scores between children with and without parent-reported cerebral visual impairment. Conclusions Measure of Early Vision Use is the first assessment tool to describe ‘how vision is used’ in children with cerebral palsy. Results provide preliminary evidence that the measure comprises a unidimensional construct, sufficient construct validity, and feasibility as a parent-completed online assessment. Findings on internal structure provide foundational evidence and require further testing with Confirmatory Factor Analysis or Rasch Analysis. IMPLICATIONS FOR REHABILITATION The Measure of Early Vision Use is a new instrument to describe the use of basic visual abilities and is feasible to use as a parent-completed online questionnaire. The Measure of Early Vision Use is a unidimensional scale with sufficient construct validity to supports its use as a measure of ‘how vision is used’ without confounding visual ability with the reason why it might be impaired (e.g., cerebral vision impairment, motor limitations, or cognition). There is potential for the Measure of Early Vision Use to support early intervention planning for children with (or at high risk of) cerebral palsy.

Anterior drooling is common in children with cerebral palsy (CP) and poses significant risks to the child's health. Causes of drooling include oro-motor dysfunction, inefficient swallowing and reduced sensation in the orofacial musculature. Behavioural interventions are frequently recommended to reduce drooling; however, this is in the absence of high-quality research evidence. This paper describes a protocol for evaluating the effectiveness of the Lee Silverman Voice Treatment LOUD (LSVT LOUD®) in reducing drooling; and optimising speech and swallowing in a group of children with CP. A structured and systematic visual analysis supplemented with statistical analyses will be used to analyse the data. The risk of bias in n-of-1 trials (RoBiNT) Scale [1] guided the design and implementation of the study.

This study reports parents' perspectives of, ENVISAGE: ENabling VISions And Growing Expectations. ENVISAGE - co-designed by parents and researchers - is an early intervention program for parents raising children with neurodisability.Using an integrated Knowledge Translation approach, this feasibility study explored parents' perspectives of the comprehensibility, acceptability, and usability of ENVISAGE workshops. Participants were Australian and Canadian parents of children with neurodisabilities, ≥12 months post-diagnosis, who independently reviewed ENVISAGE workshops using an online learning platform. Parents completed study-specific 5-point Likert-scaled surveys about individual workshops. Following this, qualitative interviews about their perceptions of ENVISAGE were conducted. Survey data were analysed descriptively, and interviews analysed inductively using interpretive description.Fifteen parents completed surveys, of whom 11 participated in interviews. Workshops were reported to be understandable, relevant, and meaningful to families. ENVISAGE was judged to empower parents through enhancing knowledge and skills to communicate, collaborate and connect with others. Pragmatic recommendations were offered to improve accessibility of ENVISAGE.ENVISAGE workshops address key issues and concerns of parents of children with neurodisability in a way that was perceived as empowering. Involving parents as reviewers enabled refinement of the workshops prior to the pilot study.

BACKGROUND For people with disabilities to live a good life, it is essential that funded research in health and social care addresses their interests, meets their needs, and fills gaps in our understanding of the impact that services, systems, and policies may have on them. Decisions about research funding should be based on an understanding of the research priorities of people with disabilities, their supporters and allies, disability researchers, service providers, and policy makers working in the field. OBJECTIVE The aim of this protocol is to describe the research design and methods of a large-scale, disability research agenda–setting exercise conducted in 2021 in Australia. METHODS The research agenda–setting exercise involves 3 integrated phases of work. In the first phase, a previous audit of disability research in Australia is updated to understand previous research and continuing gaps in the research. Building on this, the second phase involves consultation with stakeholders—people with disabilities and their supporters and family members, the disability workforce, and people working within services and connected sectors (eg, aging, employment, education, and housing), academia, and public policy. Data for the second phase will be gathered as follows: a national web-based survey; a consultation process undertaken through the government and nongovernment sector; and targeted consultation with Aboriginal and Torres Strait Islander people, children with disabilities and their families, people with cognitive disability, and people with complex communication needs. The third phase involves a web-based survey to develop a research agenda based on the outcomes of all phases. RESULTS We have started working on 2 parts of the research prioritization exercise. Through the research-mapping exercise we identified 1241 journal articles and book chapters (referred to as research papers) and 225 publicly available reports (referred to as research reports) produced over the 2018-2020 period. Data collection for the national survey has also been completed. We received 973 fully completed responses to the survey. Analysis of these data is currently underway. CONCLUSIONS This multi-method research agenda–setting study will be the first to provide an indication of the areas of health and social research that people across the Australian disability community consider should be prioritized in disability research funding decisions. Project results from all phases will be made publicly available through reports, open-access journal publications, and Easy Read documents. INTERNATIONAL REGISTERED REPORT DERR1-10.2196/31126

Introduction This economic evaluation complements results of the randomised controlled trial that established non-inferiority of the learning outcomes of a one-week simulated clinical placement (SCP) in occupational therapy qualifying degrees in comparison to an equivalent traditional clinical placement (TCP). This companion study presents detailed cost analyses of two placement alternatives and a cost-benefit study to assess the value for money of SCP. An economic evaluation of simulated versus traditional placements has not previously been conducted in Australia. Methods Nine SCP/TCP rounds were conducted by six Australian universities. Costs were collected using study-specific instruments. Public health sector costs were sourced from available literature. Willingness-to-pay for SCP/TCP was estimated using both a Discrete Choice Experiment and a Contingent Valuation method. These methods were employed to assess a comparative 'value' of SCP/TCP from the perspective of heads of occupational therapy departments (N = 28), who were asked to put a monetary value on the broader range of benefits associated with SCP/TCP. Results From the universities' perspective the average cost per student ranged from AUD$460 to AUD$1511 for simulated and AUD$144 to AUD$1112 for traditional placement. From the health care sector perspective, the difference in costs favoured simulated placements for four implementations and traditional placements for five. In the Discrete Choice Experiment respondents preferred traditional rather than simulated placement and would pay additional AUD$533. The estimated monetary value of simulated placements from a contingent valuation ranged from AUD$200 to AUD$1600. Conclusions For universities that procure TCPs predominately at public health care facilities and sustain high administrative overheads, the SCP program could be a cost-saving alternative. From a broader value-for-money perspective, respondents favoured TCP over SCP, yet placed importance on placement availability and opportunity to demonstrate competence for students during the placement. Results should be interpreted with caution and further research with larger sample sizes is required.

BACKGROUND Cerebral palsy (CP) is a physical disability that affects movement and posture. Approximately 17 million people worldwide and 34,000 people in Australia are living with CP. In clinical and kinematic research, goniometers and inclinometers are the most commonly used clinical tools to measure joint angles and positions in children with CP. OBJECTIVE This paper presents collaborative research between the School of Electrical Engineering, Computing and Mathematical Sciences at Curtin University and a team of clinicians in a multicenter randomized controlled trial involving children with CP. This study aims to develop a digital solution for mass data collection using inertial measurement units (IMUs) and the application of machine learning (ML) to classify the movement features associated with CP to determine the effectiveness of therapy. The results were calculated without the need to measure Euler, quaternion, and joint measurement calculation, reducing the time required to classify the data. METHODS Custom IMUs were developed to record the usual wrist movements of participants in 2 age groups. The first age group consisted of participants approaching 3 years of age, and the second age group consisted of participants approaching 15 years of age. Both groups consisted of participants with and without CP. The IMU data were used to calculate the joint angle of the wrist movement and determine the range of motion. A total of 9 different ML algorithms were used to classify the movement features associated with CP. This classification can also confirm if the current treatment (in this case, the use of wrist extension) is effective. RESULTS Upon completion of the project, the wrist joint angle was successfully calculated and validated against Vicon motion capture. In addition, the CP movement was classified as a feature using ML on raw IMU data. The Random Forrest algorithm achieved the highest accuracy of 87.75% for the age range approaching 15 years, and C4.5 decision tree achieved the highest accuracy of 89.39% for the age range approaching 3 years. CONCLUSIONS Anecdotal feedback from Minimising Impairment Trial researchers was positive about the potential for IMUs to contribute accurate data about active range of motion, especially in children, for whom goniometric methods are challenging. There may also be potential to use IMUs for continued monitoring of hand movements throughout the day. CLINICALTRIAL Australian New Zealand Clinical Trials Registry (ANZCTR) ACTRN12614001276640, https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=367398; ANZCTR ACTRN12614001275651, https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=367422

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

Purpose Children and adolescents with cerebral palsy have diverse needs and often engage with healthcare services, including paediatric rehabilitation. Partnering with these children and adolescents on research projects to inform practice has the potential to ensure services continue to remain relevant and appropriate. This study aimed to identify what children and adolescents with cerebral palsy suggest are effective ways for researchers to involve them as partners in research. Materials and methods This qualitative study was guided by interpretive description. Children and adolescents with cerebral palsy between 8 and 18 years participated in semi-structured, activity-based focus groups or interviews. Verbatim transcripts were coded and analysed using thematic analysis. One member of the research team was a young woman with cerebral palsy. Results Seventeen children and adolescents with cerebral palsy from NSW and Victoria (Australia) were involved. Participants were between 8 and 18 years (mean = 12 years), male (n = 11) and female (n = 6). Analysis identified four nested themes: “insider knowledge”, “reasons for involvement”, “roles in research” and “facilitating partnership”. Conclusion This study identified perspectives of children and adolescents on their involvement as research partners, and considerations for researchers to facilitate involvement of children and adolescents with cerebral palsy as partners in research. IMPLICATIONS FOR REHABILITATION • The commitment in healthcare to client-centred practice requires that consumers, including children and young people with cerebral palsy, have opportunities to influence the direction of research which impacts them. • Children and young people with cerebral palsy are interested in research partnerships and motivated to be involved in various areas of research. • Effective research partnerships with younger populations can be facilitated by researchers acknowledging a child or young person’s expertise, and employing strategies relating to open communication, flexibility and support.

This special edition of participation research draws on the expertise of those who were to attend a participation-focused symposium in the beautiful mountains of Norway in June 2020. Because COVID-...

Children with physical disabilities (PD) are known to have participation restrictions when in inclusive settings alongside typically developing (TD) children. The restrictions in participation over time may affect their mental health status. This study aimed to investigate the longitudinal relationship between independence in activities (capability) and frequency of attendance in activities, in relation to perceived mental health status in children with and without PD. The participants were a convenience sample of parents of 77 school children with PD and 94 TD children who completed four assessments with a one-year interval between each assessment. Parents of these children were interviewed with the Functioning Scale of the Disability Evaluation System&mdash, Child version (FUNDES-Child). Three dimensions of mental health problems&mdash, loneliness, acting upset, and acting nervous&mdash, were rated by parents with the Child Health Questionnaire (CHQ). Linear trend was tested by repeated-measure ANOVA. The results revealed different longitudinal patterns of independence and frequency of attendance over time for children with PD and TD. Frequency of attending activities may be more important than independence in performing activities for experiencing fewer mental health problems. The findings highlight the need for supporting children&rsquo, s actual attendance in daily activities which may benefit their later mental health.

Background: Picture My Participation (PMP) intended to measure participation, defined as attendance and involvement in everyday situations, of children with disabilities, particularly in low- and middle-income settings. Objectives: To explore structural validity of PMP by identifying possible subcomponents in the attendance scale and examining internal consistency of the total score and each subcomponent. Method: A picture-supported interview was conducted with 182 children, 7–18 years, with and without intellectual disability (ID). Frequency of attendance in 20 activities was rated on a four-point Likert scale (never, seldom, sometimes and always). Results: An exploratory principal component analysis extracted four subcomponents: (1) organised activities, (2) social activities and taking care of others, (3) family life activities and 4) personal care and development activities. Internal consistency for the total scale (alpha = 0.85) and the first two subcomponents (alpha = 0.72 and 0.75) was acceptable. The two last subcomponents alpha values were 0.57 and 0.49. Conclusion: The four possible subcomponents of PMP can be used to provide information about possible domains in which participation and participation restrictions exist. This study provided further psychometric evidence about PMP as a measure of participation. The stability and the utility of these subcomponents needed further exploration.

Purpose: In the absence of evidence-based guidelines, this study sought to understand current speech-language pathologists’ (SLPs) practice when treating drooling in children with a neurodisability. Method: Descriptive research using cross-sectional survey methodology. Online survey methods were used to obtain specific information on Australian SLPs’ self-reported assessment and treatment practices relative to working with children with neurodisability who drool. Questions focussed on level of expertise, treatment approaches and barriers to evidence-based practice (EBP) in this area. Participants were sourced through three targeted associations/organisations. Data were analysed using descriptive and non-parametric statistics. Result: Participants were Australian SLPs who had recent experience working with children with neurodisability who drool (n = 68). They favoured informal rather than formal methods for assessment. Preferred treatment techniques included behavioural intervention methods (46–53%) and modifying positioning (43.3%). Client suitability dominated reasoning regarding treatment selection (60%) with 57% of SLPs reporting EBP barriers. Conclusion: Drooling was perceived to be a complex practice area for which SLPs desire additional education. Despite availability, valid and reliable assessments of drooling were not commonly used. Clinicians have limited evidence to support their practice: further research is needed to establish evidence-based treatments for drooling.

In this paper we explore how social aspects of group interaction and the physical affordances of interactive technology may be exploited to enhance the participation of people with a disability in creative, artistic activity. Participation per se is conceptualized using a current framework known as the family of Participation Related Constructs—fPRC, an ecological approach derived from a biopsychosocial health model. Taking an integrative approach, we blend current theory on participation, interaction design and community art to explore how group play and performance can foster inclusive participation in the arts and contribute to a positive change in personal (and collective) wellbeing. We describe two interactive arts projects called Resonance and Wheelchair DJ that provide examples of participation and performance in communities with a disability and reflect upon the workshop models that facilitate the creative expression of individuals and the group. We conclude with a discussion on the potentially transformative effects of participation in the arts by people with a disability and our gaps in our understanding of how to evaluate the notion of participation as a means—a medium through which person-related attributes and creative activity are developed in the longer-term.

Background: Participation comprises attendance and involvement in everyday situations. Picture My Participation (PmP) is an instrument intended to measure participation in children with disabilities, particularly in low and middle income countries. Aim: To investigate content validity and usefulness of PmP for measuring participation in children with intellectual disability (ID) in South Africa and Sweden. Methods: A picture supported interview with 149 children, 6–18 years, with and without ID. Twenty everyday activities were provided. The three most important activities were selected by the child. Attendance was rated on all activities. Involvement was rated on the most important. Results: All activities were selected as important by at least one child with ID in both countries. There were similarities in perceived importance between the children with and without ID from South Africa. The children from South Africa with ID were the only subgroup that used all scale points for rating attendance and involvement. Conclusion: The 20 selected activities of PmP were especially relevant for children with ID in South Africa. The usefulness of the scales was higher for the children with ID in both countries. PmP is promising for assessing participation across different settings but psychometrical properties and clinical utility need further exploration.