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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.

PURPOSE: To explore the perspectives of primary caregivers of children with cerebral palsy (CP) who had spinal surgery for scoliosis. MATERIALS AND METHODS: A qualitative study was conducted using semi-structured interviews and guided by qualitative description methodology. Participants were caregivers of children with CP aged 5-18, who had undergone spinal surgery for scoliosis in Australia. The research team included a parent with lived experience. RESULTS: Fourteen participants (8 biological mothers), aged 40-49 years, completed online semi-structured interviews. Four themes were identified emerged. Life with a child with CP underpinned all experiences which were founded on familiarity with their child, medical procedures, and hospitalisation. Three subthemes were parents are the experts in knowing their child, children are vulnerable, and impact on caregivers. Theme 2 involved the significance of decision making to proceed with surgery. Theme 3 underscored a need to be prepared for the surgical journey and, in Theme 4, participants spoke of needing to expect the unexpected. CONCLUSION: The findings highlight the importance of understanding caregiver experiences and can help inform health professionals and other families in the decision-making process, preparing for and navigating spinal surgery.

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

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.

AIM: 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. METHOD: 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). RESULTS: 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. INTERPRETATION: 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.

PURPOSE: To investigate the effects of providing rigid wrist-hand orthoses plus usual multidisciplinary care, on reducing hand impairments in children with cerebral palsy. METHODS: 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. RESULTS: 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. CONCLUSION: 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.Longitudina

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 < 10% between the first and last time point. Despite multiple studies reporting longitudinal trajectories of mental health problems, greater conceptual clarity and consideration of the measures included in research is needed, along with the inclusion of a more diverse range of populations of children with neurodevelopmental disabilities.

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 resea

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.

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

Objective: In Australia, the National Disability Strategy provides a framework to guide actions and investment to achieve equity in social inclusion and economic participation for people with disability. We investigated the social outcomes of school leavers with cerebral palsy (CP) in Victoria, Australia and explored the determinants of desirable outcomes. Methods: We used the Victorian CP Register to invite all adults with CP aged 18-25 years (n = 649). On-line and/or paper-based surveys explored participation in education, employment, community activities, living situation, relationships and life satisfaction. Functional and health status data were collected. Social outcomes were summarized descriptively and compared between individuals with CP and non-disabled peers aged 18-25 years from the Household Income and Labor Dynamics in Australia dataset. Within the CP cohort we explored whether physical and mental health and level of functioning were associated with social outcomes. In addition, a descriptive comparison was undertaken between the social outcomes of the current CP cohort with that of a previously reported 2007 cohort. Results: Ninety participants (57% male; mean age 22.4 years (SD: 2.2) in 2020; 61.1% self-reported) provided data for analyses; response rate 16.9%. CP characteristics were similar between respondents and non-respondents. In comparison to similar aged peers, 79.8% had completed secondary school (compared to 83.2%); 32.6% (compared to 75.8%) were in paid work; 87.5% (compared to 48.2%) were living in their parental home; and 3.4% (compared to 31.6%) were married or partnered. Individuals with CP and higher levels of functional capacity and better physical health were more likely to undertake post-secondary education. Higher levels of functional capacity and physical health, as well as lower mental health status were associated with being employed. Conclusions: While foundational education completion rates were similar to non-disabled peers

IMPORTANCE: Evidence on common types of participation-focused caregiver strategies can help occupational therapy practitioners to take an evidence-based approach to designing participation-focused practice. OBJECTIVE: To identify and explore types of caregiver strategies to support young children's participation in valued occupations in the home and community. DESIGN: Qualitative study using a subset of data collected online with the Young Children's Participation and Environment Measure (YC-PEM). Narrative responses about strategy use were content coded to the family of Participation-Related Constructs (fPRC) framework using a deductive analytic approach to identify relevant types of participation-focused strategies used in the home and community. Responses were further analyzed within each relevant fPRC construct using an inductive analytic approach to identify the scope of strategies used for each construct. SETTING: Early intervention. PARTICIPANTS: Caregivers (N = 106) of young children receiving early intervention. OUTCOMES AND MEASURES: Caregivers' strategies to support their child's home and community participation, provided by the YC-PEM. RESULTS: Caregivers most commonly adapted the child's environment or context to support their child's home and community participation (45.06%). The least common focus of caregiver strategies was the child's activity competencies (11.16%). Three or more types of caregiver strategies were identified for each participation-related construct. CONCLUSION AND RELEVANCE: Results indicated that caregivers used a range of strategies related to each of the participation-related constructs to support their child's participation in home and community occupations, most commonly targeting the environment. Occupational therapy practitioners can select from this range of strategies when planning participation-focused early intervention with families. WHAT THIS ARTICLE ADDS: This study yields new evidence on the scope of caregiver strateg

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.

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.

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.

Children with impairments are known to experience more restricted participation than other children. It also appears that low levels of participation are related to a higher prevalence of mental health problems in children with neurodevelopmental disorders (NDD). The purpose of this conceptual paper is to describe and define the constructs mental health problems, mental health, and participation to ensure that future research investigating participation as a means to mental health in children and adolescents with NDD is founded on conceptual clarity. We first discuss the difference between two aspects of mental health problems, namely mental disorder and mental illness. This discussion serves to highlight three areas of conceptual difficulty and their consequences for understanding the mental health of children with NDD that we then consider in the article: (1) how to define mental health problems, (2) how to define and assess mental health problems and mental health, i.e., wellbeing as separate constructs, and (3) how to describe the relationship between participation and wellbeing. We then discuss the implications of our propositions for measurement and the use of participation interventions as a means to enhance mental health (defined as wellbeing). Conclusions: Mental disorders include both diagnoses related to impairments in the developmental period, i.e., NDD and diagnoses related to mental illness. These two types of mental disorders must be separated. Children with NDD, just like other people, may exhibit aspects of both mental health problems and wellbeing simultaneously. Measures of wellbeing defined as a continuum from flourishing to languishing for children with NDD need to be designed and evaluated. Wellbeing can lead to further participation and act to protect from mental health problems.

Despite facing multidimensional inequalities, some adults with cerebral palsy achieve positive social outcomes (e.g., independent living, employment, and romantic relationships). We interviewed 23 adults (aged 23-47 years) about how they successfully negotiated the challenges of adulthood. Common to all life situations was doing what others (people without cerebral palsy) do. Origins of success lay in their formative experiences (e.g., typical parental expectations with commensurate support and acceptance and supported involvement in school life). Their present functioning (e.g., positive self-concept, well-honed social skills, and physical fitness) combined with present contexts (e.g., expectations of involvement in adult activities and accessible and accommodating environments) enabled them to find ways of negotiating challenges. Finding a way included drawing on knowledge and skills, gravitating toward those who are comfortable with difference, maintaining function, and using natural and paid supports. The findings suggest multiple avenues for supporting people with cerebral palsy to achieve positive social outcomes.

Children with impairments are known to experience more restricted participation than other children. It also appears that low levels of participation are related to a higher prevalence of mental health problems in children with neurodevelopmental disorders (NDD). The purpose of this conceptual paper is to describe and define the constructs mental health problems, mental health, and participation to ensure that future research investigating participation as a means to mental health in children and adolescents with NDD is founded on conceptual clarity. We first discuss the difference between two aspects of mental health problems, namely mental disorder and mental illness. This discussion serves to highlight three areas of conceptual difficulty and their consequences for understanding the mental health of children with NDD that we then consider in the article: (1) how to define mental health problems, (2) how to define and assess mental health problems and mental health, i.e., wellbeing as separate constructs, and (3) how to describe the relationship between participation and wellbeing. We then discuss the implications of our propositions for measurement and the use of participation interventions as a means to enhance mental health (defined as wellbeing). Conclusions: Mental disorders include both diagnoses related to impairments in the developmental period, i.e., NDD and diagnoses related to mental illness. These two types of mental disorders must be separated. Children with NDD, just like other people, may exhibit aspects of both mental health problems and wellbeing simultaneously. Measures of wellbeing defined as a continuum from flourishing to languishing for children with NDD need to be designed and evaluated. Wellbeing can lead to further participation and act to protect from mental health problems.

Objective: Rigid wrist-hand orthoses (WHO), used with children with cerebral palsy (CP), aim to maintain soft tissue length, thought to contribute to preserving functional hand use. Past research is limited by small samples and short intervention periods (<6 months). This study investigated effectiveness of long-term provision of rigid WHO combined with usual multidisciplinary care, to reduce hand impairments. Design(s): A pragmatic, prospective, multicentre, assessor-blinded randomised controlled trial with 1:1 allocation to Intervention or control group. Method(s): Eligible participants were aged 5-15 years, diagnosed with CP, presenting with Modified Ashworth Scale score >=1 at the wrist. Sample estimate was 97 per group to detect a 10degree between-group difference in wrist extension at 3 years. Recruitment occurred at five Australian sites. Independent randomisation with concealed allocation was stratified by study site and passive wrist range (3 strata). In bilateral presentations, allocation was by child (both wrists same allocation). Children randomised to the intervention received a custom-made rigid WHO for maintaining length in the flexor compartment of the forearm/hand, to be worn for >=6 hours/ night. The trial stopped early due to insufficient recruitment and resources. The primary outcome was passive wrist extension (fingers extended) at 3 years. Given early cessation, all measures taken 6-monthly were included in repeated measures two-level mixed regression models, to obtain comparisons between groups in accordance with intention-to-treat principles. Result(s): Seventy-four children were randomised (n=38 intervention; n=36 control). Mean age was 10.2 (SD 3.1) years (intervention) and 9.1 (SD 2.8) years (control); n=18 intervention and n=16 control group participants were male. Children in all levels of the Manual Ability Classification System were included. There were 96 included limbs (n=47 intervention; n=49 control). Limbs available for analysis a

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.

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-Child version (FUNDES-Child). Three dimensions of mental health problems-loneliness, acting upset, and acting nervous-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's actual attendance in daily activities which may benefit their later mental health.

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.

AIM: To: (1) investigate the relationship between upper-limb impairment and health-related quality of life (HRQoL) for children with cerebral palsy and (2) develop a mapping algorithm from the Cerebral Palsy Quality of Life Questionnaire for Children (CPQoL-Child) onto the Child Health Utility 9D (CHU9D) measure. METHOD: The associations between physical and upper-limb classifications and HRQoL of 76 children (40 females, 36 males) aged 6 to 15 years (mean age 9 years 7 months [SD 3y]) were assessed. Five statistical techniques were developed and tested, which predicted the CHU9D scores from the CPQoL-Child total/domain scores, age, and sex. RESULTS: Most participants had mild impairments. The Manual Ability Classification System (MACS) level was significantly negatively correlated with CHU9D and CPQoL-Child (r=-0.388 and r=-0.464 respectively). There was a negative correlation between the Neurological Hand Deformity Classification (NHDC) and CPQoL-Child (r=-0.476, p<0.05). The generalized linear model with participation, pain domain, and age had the highest predictive accuracy. INTERPRETATION: The weak negative correlations between classification levels and HRQoL measures may be explained by the restricted range of impairment levels of the participants. The MACS and NHDC explained the impact of upper-limb impairment on HRQoL better than the other classifications. The generalized linear model with participation, pain, and age is the suggested mapping algorithm. The suggested mapping algorithm will facilitate the use of CPQoL-Child for economic evaluation and can be used to conduct cost-utility analyses. WHAT THIS PAPER ADDS: The Manual Ability Classification System and Neurological Hand Deformity Classification were the best predictors of health-related quality of life measures. Age and Cerebral Palsy Quality of Life Questionnaire for Children participation and pain domain scores can predict Child Health Utility 9D scores.

INTRODUCTION: There is a need to develop relevant, acceptable initiatives that facilitate physical activity participation in young people with disability. FitSkills was developed to support young people with disability to exercise. The primary aims are to investigate if FitSkills can be scaled up from a small, university-led programme to run as a larger community-university partnership programme, and to determine its effectiveness in improving physical activity participation and health-related quality of life for young people with disability. The secondary aims are to evaluate cost-effectiveness, changes in attitudes towards disability and other health-related outcomes for young people with disability. METHODS AND ANALYSIS: A stepped wedge cluster randomised trial using a cohort design and embedded health economic evaluation will compare the effect of FitSkills with a control phase. FitSkills matches a young person with disability with a student mentor and the pair exercise together at their local gymnasium for 1 hour, two times per week for 12 weeks (24 sessions in total). One hundred and sixty young people with disability aged 13 to 30 years will be recruited. Eight community gymnasia will be recruited and randomised into four cluster units to have FitSkills introduced at 3-month intervals. Primary (feasibility, participation and health-related quality of life) and secondary outcomes will be collected longitudinally every 3 months from trial commencement, with eight data collection time points in total. The Practical Robust Implementation and Sustainability Model will be used to support knowledge translation and implementation of project findings into policy and practice. ETHICS AND DISSEMINATION: Ethical approval was obtained from the La Trobe University Human Ethics Committee (HEC17-012), Australian Catholic University (2017-63R), Deakin University (2017-206) and the Victorian Department of Education and Training (2018_003616). Results will be disseminated throu

Aim To: (1) investigate the relationship between upper‐limb impairment and health‐related quality of life (HRQoL) for children with cerebral palsy and (2) develop a mapping algorithm from the Cerebral Palsy Quality of Life Questionnaire for Children (CPQoL‐Child) onto the Child Health Utility 9D (CHU9D) measure. Method The associations between physical and upper‐limb classifications and HRQoL of 76 children (40 females, 36 males) aged 6 to 15 years (mean age 9 years 7 months [SD 3y]) were assessed. Five statistical techniques were developed and tested, which predicted the CHU9D scores from the CPQoL‐Child total/domain scores, age, and sex. Results Most participants had mild impairments. The Manual Ability Classification System (MACS) level was significantly negatively correlated with CHU9D and CPQoL‐Child (r=−0.388 and r=−0.464 respectively). There was a negative correlation between the Neurological Hand Deformity Classification (NHDC) and CPQoL‐Child (r=−0.476, p<0.05). The generalized linear model with participation, pain domain, and age had the highest predictive accuracy. Interpretation The weak negative correlations between classification levels and HRQoL measures may be explained by the restricted range of impairment levels of the participants. The MACS and NHDC explained the impact of upper‐limb impairment on HRQoL better than the other classifications. The generalized linear model with participation, pain, and age is the suggested mapping algorithm. The suggested mapping algorithm will facilitate the use of CPQoL‐Child for economic evaluation and can be used to conduct cost–utility analyses. What this paper adds The Manual Ability Classification System and Neurological Hand Deformity Classification were the best predictors of health‐related quality of life measures. Age and Cerebral Palsy Quality of Life Questionnaire for Children participation and pain domain scores can predict Child Health Utility 9D scores.