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AbstractPurposeMaterials and methodsResultsConclusions\nIMPLICATIONS FOR REHABILITATIONA powerful aphorism states: “If I hadn’t believed it, I wouldn’t have seen it!” This challenging notion reminds us how strongly we are influenced by prevailing ideas, and how we interpret things according to current fashions and teachings.In this paper we present and discuss contemporary perspectives concerning childhood-onset disability and the evolving nature of how people are thinking and acting. We illustrate these ideas by reminding readers of how we have all traditionally been trained and acculturated to think about many dimensions of neurodevelopmental disability (“What?”); reflect on the impact of these ways of thinking in terms of what we have conventionally “seen” and done (“So What?”); and contrast those traditions with contemporary concepts that we believe or know impact the field (“Now What?”).Many of the concepts discussed here will be familiar to readers. In taking this analytically critical perspective we aim to illustrate that by weaving these individual threads together we are able to create a coherent fabric that can serve children with childhood-onset NDD, their families, service providers, the community, and policy-makers. We do not purport to offer a comprehensive view of the whole field.We encourage readers to consider the integration of these new ways of thinking and acting in our still-evolving field of “childhood-onset disability”.21st-century thinking about childhood-onset neurodisability builds on WHO’s ICF framework for health, expanding well beyond traditional primary biomedical foci on diagnosis and management and toward a focus on functioning and belonging.New emphases put family at the centre, attending to family voices and prioritizing family wellbeing as targets for intervention equal to a focus on the child.There is strong emerging evidence to support the value and impact of these broader approaches on overall family functioning and wellbeing.These developments are primarily conceptual rather than technical: they emphasize child and family development, parenting, promotion of functioning, and a life-course approach from the start of intervention.21st-century thinking about childhood-onset neurodisability builds on WHO’s ICF framework for health, expanding well beyond traditional primary biomedical foci on diagnosis and management and toward a focus on functioning and belonging.New emphases put family at the centre, attending to family voices and prioritizing family wellbeing as targets for intervention equal to a focus on the child.There is strong emerging evidence to support the value and impact of these broader approaches on overall family functioning and wellbeing.These developments are primarily conceptual rather than technical: they emphasize child and family development, parenting, promotion of functioning, and a life-course approach from the start of intervention. [ABSTRACT FROM AUTHOR]

The Australian Centre for Health, Independence, Economic participation and Value Enhanced care for adolescents and young adults with Cerebral Palsy (CP-ACHIEVE) is a Centre of Research Excellence (CRE), funded for 5-year by the National Health and Medical Research Council of Australia. The vision of CP-ACHIEVE is an Australia where people with cerebral palsy receive excellent healthcare throughout their lives and live in, and contribute to, supportive communities that welcome and enable their participation. CP-ACHIEVE began with the ethical commitment to bring together people with lived experience of cerebral palsy, researchers, and health professionals to develop and conduct research informed by, and relevant to, people with cerebral palsy and their allies. From inception, co-research and collaboration with (not 'to' or 'about') young people with cerebral palsy (10 to 30 years of age) and their families has been central to our work. In this paper, we describe the CP-ACHIEVE values, structure and strategy for this approach, and its implementation at each stage of the research process. We then provide an example of the strategy in action, using a qualitative exploration of CP-ACHIEVE's Participation Theme team's experiences of collaboration and involvement as co-researchers. Active participation in research for young people with lived experience of cerebral palsy and their families is a fundamental human right, based on their right to be active agents in decisions that affect them. In this paper we explore how our collaborative approach, and the integration of diverse views, has enhanced the relevance, quality, usefulness, and translation of our research. We also describe (i) the structural elements of our research group that have facilitated our work together, (ii) our challenges, and (iii) how the ownership of our research by people with cerebral palsy is driving future research directions and empowering involvement of people with lived experience beyond CP-ACHIEVE. We offer this knowledge and our experiences to assist other research teams in their journeys towards collaborative research alongside people with lived experience of disability. [ABSTRACT FROM AUTHOR]

Use of empirically unsupported practices is a challenge in the field of autism spectrum disorder (ASD). We explored whether attitudes and perceived evidence were linked to intended practice use in early intervention staff. Seventy-one participants completed ratings of the evidence base, current and future use of six ASD intervention practices, and reported attitudes to research and evidence-based practice. Participants reported greater use and rated the evidence base higher for the empirically supported practices. However, variability in accuracy of evidence base ratings was observed across individuals. Higher perceived evidence was linked to greater future use intentions for empirically supported and unsupported practices. The need for accurate information across practice types is highlighted. Self-report methodology limitations and future research directions are discussed.

Introduction: The increased focus among researchers and professionals on participation as an explicit intervention outcome has prompted a paradigm shift in both thought and practice. However, much research centers on altering participation outcomes in specific life situations and stages. This discussion paper considers "participation as a means" in pediatric rehabilitation and special education interventions, emphasizing its role in achieving lasting outcomes. Method: This paper uses a Venn diagram approach to consider relations between three core concepts--participation, intervention, and outcomes--and their intersection. The paper's central theme revolves around the intersection of these concepts, wherein participation serves as a means to achieve enduring participation outcomes within the realms of rehabilitation and special education. The discussion is supported by contemporary empirical work and from literature identified in two recent scoping reviews focusing on the intervention process. Results: Achieving enduring participation outcomes through participation in the intervention process necessitates creating a learning experience, with children and families actively participating in every step: identifying participation issues, seeking explanations, prioritizing intervention goals, selecting methods, implementing interventions, and evaluating the process and outcomes. Discussion: This structured approach supports professionals and researchers to foster the skills and capacity required for lasting participation outcomes for children with impairments. [ABSTRACT FROM AUTHOR]

To assess if a high-level mobility programme (HLMP) can promote sustained participation in physical activity by adolescents with cerebral palsy. 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). 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. 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 outcomes Measuring physical capacity and performance gains alone is insufficient to determine sustained, meaningful participation. [ABSTRACT FROM AUTHOR]

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. Adolescents 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. [ABSTRACT FROM AUTHOR]

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. 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. 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. 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. 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. [ABSTRACT FROM AUTHOR]

Use of empirically unsupported practices is a challenge in the field of autism spectrum disorder (ASD). We explored whether attitudes and perceived evidence were linked to intended practice use in early intervention staff. Seventy-one participants completed ratings of the evidence base, current and future use of six ASD intervention practices, and reported attitudes to research and evidence-based practice. Participants reported greater use and rated the evidence base higher for the empirically supported practices. However, variability in accuracy of evidence base ratings was observed across individuals. Higher perceived evidence was linked to greater future use intentions for empirically supported and unsupported practices. The need for accurate information across practice types is highlighted. Self-report methodology limitations and future research directions are discussed., Author(s): Jessica Paynter [sup.1] [sup.9] , Sarah Luskin-Saxby [sup.1] , Deb Keen [sup.2] , Kathryn Fordyce [sup.3] , Grace Frost [sup.4] , Christine Imms [sup.5] , Scott Miller [sup.6] , [...]

In 2022, an international conference was held focusing on 'participation'. We shared current evidence, identified knowledge gaps and worked together to understand what new knowledge and community and practice changes were needed. This brief communication is a summary of the conference delegates' discussions. We present the key assumptions we make about participation and propose what is needed to create change for societies, communities, families and individuals. While we have some robust evidence to support participation approaches, more is needed, and it is everyone's responsibility to build an inclusive society where participation for all is the reality. [ABSTRACT FROM AUTHOR]

Purpose: 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. Methods: 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. Results: 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. Conclusions: 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. [ABSTRACT FROM AUTHOR]

This study surveyed perspectives held by school teachers regarding factors that contribute to successful transition to school. In addition, this study explored practices in place to enhance children's transition to school. Participants were self-nominated, preparatory teachers from publicly funded primary schools in Victoria, Australia. From 250 surveys sent to randomly selected Melbourne metropolitan schools, 153 were returned (61.2% return rate). Numerical data were analysed descriptively and responses to open-ended questions were coded and analysed to derive common themes. All respondents identified formal processes used to assist children to transition into the first year of primary school. They also identified various child-related factors they considered important for school readiness. Factors fell broadly into cognitive, social, self-care, emotional and language domains. When asked, the majority of educators felt that age was a critical factor. Less commonly identified issues were those related to the children's physical abilities, and their capacity to engage in learning tasks. Whilst factors identified were broad, there was a relative consistency across respondents. These findings contribute to the discourse in regards to identifying and consistently applying strategies to support children's successful transition into school.

We compared participation in out-of-school activities between children with intellectual disability and children with typical development using the Children's Assessment of Participation and Enjoyment and Preferences for Activities of Children questionnaires. Thirty-eight pairs of children were matched for age (mean age 12.3 plus or minus 2.7 years), sex (17 female, 21 male), location (32 metropolitan, 6 regional) and socioeconomic background (mean SEIFA score 1021 plus or minus 70 and 1024 plus or minus 66). When compared to their typically developing peers, children with intellectual disability participated in fewer "Active-Physical" and "Skill-Based" activities and in more "Recreational" activities. Children with intellectual disability participated less frequently in "Skilled-Based" activities, had a higher preference for "Recreational" and "Self-Improvement" activities, enjoyed "Self-Improvement" activities more, and participated in a higher proportion of "Social" activities at home and in a lower proportion of "Recreational," "Active-Physical," "Skill-Based," and "Self-Improvement" activities alone. These differences may be due to reduced physical, cognitive and social skills in children with intellectual disability, or a lack of supportive environments. (Contains 1 figure and 3 tables.)

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 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. [ABSTRACT FROM AUTHOR]

Aim: To examine the stability of caregiver-reported classifications of function of children with cerebral palsy (CP) measured 12 months apart. Method: Participants were 86 children (50 males, 36 females) with CP of all motor types and severities who were recruited into a population-based longitudinal study. Children were aged 11 years 8 months (SD 6mo) on the first assessment and 12 years 8 months (SD 6mo) on the second assessment. Data were gathered through a postal survey. Caregivers reported on the Manual Ability Classification System (MACS), the Gross Motor Function Classification System (GMFCS), and other demographic characteristics. The percentage absolute agreement and the intraclass coefficient correlation (ICC) equivalent of the weighted kappa were calculated to assess consistency between assessments for the MACS and GMFCS. We also examined associations between changes in classification and background variables. Results: Fifty-eight caregivers (67%) classified their child at the same MACS level on both assessments (ICC 0.92; 95% confidence interval [CI] 0.87-0.95), whereas 79% did so with the GMFCS (ICC 0.95; 95% CI 0.92-0.96). The evidence suggests that caregivers who were not born in Australia or who spoke a language other than English in the home were more likely to classify their child differently on the MACS at the second assessment, although this was not evident for the GMFCS. Interpretation: Caregiver-reported MACS and GMFCS levels were generally stable over 12 months.

The aim of this study was to investigate the participation of children with cerebral palsy (CP) in activities outside school and to compare their participation with a large representative sample of children. A population-based survey was conducted of children with CP born in Victoria, Australia in 1994 and 1995. Of 219 living children identified, 114 (52.1%) returned completed surveys. The children (65 males, 49 females) were aged between 10 years 9 months and 12 years 9 months (mean age 11y 9mo, SD 6mo). Thirty-eight per cent had hemiplegia, 23% diplegia, 4% triplegia, 34% quadriplegia, and 1% was of unknown topography. Distribution according to the Gross Motor Function Classification System (GMFCS) was 22.8% Level I, 36% Level II, 10.5% Level III, 8.8% Level IV, and 21.9% Level V. Distribution according to the Manual Ability Classification System (MACS) was: 19.3% Level I, 38.6% Level II, 14.0% Level III, 8.8% Level IV, and 19.3% Level V. Participation was measured using the Children's Assessment of Participation and Enjoyment. Participation in selected sport, cultural, and quiet leisure activities was compared with population-based data for 11-year-olds from the Australian Bureau of Statistics. Children with CP undertook a median of 26.5 activities (interquartile range 10) in 4 months which were commonly informal rather than formal. Intensity of participation was low. Diversity and intensity of participation was similar for children in each level of the MACS and the GMFCS, except for participants in Level V. More children with CP participated in organized sports (p less than 0.001) compared with other Australian children, although with lower frequency (p less than 0.001). Participation diversity and level of intensity of Australian children with CP were similar to those reported in a Canadian study.

This study explored the experience and impact of chronic pain on the lives of adolescents and young adults with cerebral palsy (CP). Six participants with CP (four males, two females; age range 14-24y) who were known to experience chronic pain participated in individual in-depth interviews. Five participants had quadriplegia and used wheelchairs; one had left hemiplegia and walked independently. Pain was located in the hips, back, bladder, and upper limbs. Interviews were analyzed using a six-step phenomenological process. Participants in the study were found to live with constant pain that was difficult to relieve and pervaded their lives. They often felt isolated and became frustrated due to their loss of independence and inability to participate in activities. Participants indicated the importance of having their experience of pain acknowledged, supporting the need for greater attention to ongoing holistic management. Further research into effective interventions may enable increased activity participation and prevent later chronicity. (Contains 2 tables)