Gaela Kilgour

Background: Children with symptomatic paediatric generalised joint hypermobility (pgGJH) have limitations in physical activity and participation, yet there is a lack of research to guide intervention. In Australia, these children do not receive funding support. The objective of this study was to investigate the feasibility of a programme delivered in a private practice to improve running and associated goals of children with pgGJH from the perspectives of children, parents and staff. Methods: Children with pgGJH undertook a weekly group running intervention and home exercise programme (HEP) for 10 weeks. Feasibility of delivery in a private paediatric therapy clinic was determined using physical and self‐reported measures for acceptability, demand, implementation, practicality, integration and intervention efficacy. Semi‐structured interviews with participants, therapists and managers explored multiple aspects of feasibility of the programme. Results: Acceptability : satisfaction was rated between 6.5 and 9/10. Demand : 155 of 175 survey respondents were interested in the programme. Recruitment saw 24 participants invited, 10 excluded and 6 declined. Eight children aged 10–15 years (two female) participated and attended ≥ 90% of sessions. The HEP was completed at least twice per week by 62% of participants. Implementation : the intervention was completed according to the protocol with one minor adverse event. Practicality : the intervention was well equipped but expensive to run with a therapist to participant ratio of 1:3. Integration : interventionists perceived the programme to fit well within the practice infrastructure and culture. Efficacy : participants and parents reported improved running technique and increased confidence in physical activity. Leg stiffness improved and kinesiophobia was reduced. Conclusion: A running intervention for children with pgGJH was acceptable, in demand, practical to deliver and able to be integrated and implemented in a private clinic. Cost was the main challenge identified by families and management.

Aim: To describe how movement behaviours (sedentary time, light‐intensity physical activity, moderate‐to‐vigorous physical activity [MVPA]) and parent‐reported community physical activity participation vary across levels of environmental supportiveness (home, school, community) in children with cerebral palsy (CP). Method: This was a secondary cross‐sectional observational study using pooled data ( n = 141) from four studies of children with CP aged 6 to 16 years (mean = 10 years 1 month [SD = 2 years 5 months]; Gross Motor Function Classification System level I = 71, level II = 41, levels III–IV = 29). Children wore hip‐mounted triaxial accelerometers; validated machine‐learning models classified sedentary time, light physical activity, and MVPA. Parents reported community physical activity participation and environmental supportiveness using the Participation and Environment Measure for Children and Youth. Linear models were adjusted for wear time and study. We estimated marginal mean differences (MMDs) in time spent in movement behaviours between the 25th and 75th centiles of supportiveness scores. Results: Greater community (MMD = −30.1 minutes, 95% confidence interval [CI] = −53.4 to −8.1), home (−31.4 min, 95% CI = −51.5 to −11.3), and school (MMD = −54.1 min, 95% CI = −76.0 to −32.2) supportiveness were associated with less sedentary time. Higher home supportiveness was associated with more time in light physical activity (MMD = 23.7 minutes, 95% CI = 11.0 to 36.3), whereas school and community supportiveness were not associated with light physical activity. No environmental supportiveness measures were associated with time in MVPA. Interpretation: Greater environmental supportiveness across all contexts was associated with lower sedentary time, while greater home supportiveness was associated with more time in light physical activity. Other factors may have stronger associations with MVPA time.

Children with cerebral palsy (CP) have low physical activity (PA) and high sedentary behavior. The aim was to trial a participation-focused behavior-change intervention to increase PA and decrease sedentary behavior. Twelve children with CP were recruited (mean age 5 years 6 months ± 1 year 2 months, Gross Motor Function Classification System [GMFCS] levels I = 1, II = 1, III = 1, IV = 4, V = 5); eight with complete post-intervention data (mean 5 years 10 months ± 1 year 4 months, GMFCS I = 1, III = 1, IV = 4, V = 2). Children received 8 weekly sessions targeting individualized PA participation goals in a pre-post feasibility trial. Outcomes included: implementation, effectiveness (Canadian Occupational Performance Measure [COPM]), device-measured PA, goal confidence, quality of life, and barriers to PA participation. Semi-structured interviews explored acceptability and were analyzed thematically. Implementation was feasible with ≥90% sessions attended and high enjoyment (89.5%). After 8 wk, COPM goal performance (mean difference [MD] = 2.9, 95% CI 0.7, 5.0; p = 0.02), satisfaction with performance (MD = 3.0, 95% CI 1.6, 4.4; p = 0.002), and confidence (MD = 1.4, 95% CI 0.4, 2.5; p = 0.02) significantly increased with no change in other outcomes. All six caregivers interviewed reported the intervention to be acceptable. Active Start Active Future was feasible to conduct, acceptable and showed preliminary evidence to improve PA in young children with CP.

Introduction The benefits of physical activity (PA) are compelling for all ages and abilities. For children with cerebral palsy (CP), two distinct health behaviours, being physically active and reducing sedentary time, are critical to target as an early intervention to reduce long-term morbidity. One approach may be to increase PA participation by empowering parents who are key to making family lifestyle changes. This study will compare Active Start Active Future, a participation-focused intervention, to usual care in a mixed-methods randomised waitlist-controlled trial. Methods and analysis A total of 40 children with CP (3–7 years), classified in Gross Motor Function Classification System (GMFCS) levels II–V, will be stratified (GMFCS II vs III, IV vs V) and randomised to receive either (1) Active Start Active Future, an 8-week intervention for 1 hour per week in any setting or (2) usual care followed by delayed intervention. Active Start Active Future aims to increase PA and reduce sedentary behaviour of young children with CP by providing participatory opportunities to promote PA behaviour change. Outcomes will be measured at baseline (T1), immediately postintervention at 8 weeks (T2) and at 26 weeks postbaseline (T3). The primary outcomes are the Canadian Occupational Performance Measure for both child and parent participation goals and child physical performance goal. Secondary outcomes include daily time spent in moderate to vigorous PA and sedentary time, gross motor function, quality of life, barriers to participation for the children and parents’ PA and sedentary time. Intervention acceptability and experiences of PA participation will be explored using a qualitative descriptive approach. Ethics and dissemination The Children’s Health Queensland Hospital and Health Service Human Research Ethics Committee (HREC/23/QCHQ/100850) and The University of Queensland Human Research Ethics Committee (2024/HE000054) have approved this study. The results of the study will be disseminated to families and community agencies as guided by our advisory group and as conference abstracts and presentations, peer-reviewed articles in scientific journals and institution newsletters and media releases. Trial registration number ACTRN12624000042549, Universal Trial Number: U1111-1300-7421; Australian New Zealand Clinical Trials Registry.

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.

Introduction: Cerebral palsy (CP) can now be diagnosed as early as three months of age in infants with identified CP risk factors, but many barriers prevent equitable access to early detection pathways. The “Partnering Early to Provide for Infants At Risk of Cerebral Palsy” feasibility study (PĒPI ARC) seeks to trial a new approach to decrease inequitable health service in Aotearoa New Zealand for high-risk infants and their families. PĒPI ARC will incorporate face-to-face clinics, an in-person and virtual Hub, and the use of telehealth to enable flexible access to CP assessments, and support for health professionals in early CP detection. Methods and Analysis: A non-randomised feasibility study will be conducted from the tertiary Neonatal Intensive Care Unit in Wellington and includes seven regional referral centres, servicing nearly 30% of the NZ total population. Families of infants with high risk of neurodevelopmental impairment will be invited to participate, as well as health professionals interacting with the Hub. Mixed methods will be used to evaluate the i) equitable implementation of an early detection pathway, ii) acceptability, iii) demand among families and health professionals, iv) efficacy in relation to reducing the age of receipt of CP diagnosis, and v) the experiences around communication and information sharing. Ethics and Dissemination: The New Zealand Health and Disability Ethics Committees approved this study (HDEC:2022 FULL 13434). Findings will be disseminated in peer-reviewed journals, conference presentations and via professional networks. Registration: Australian New Zealand Clinical Trials Registry: ACTRN12623000600640 STRENGTHS AND LIMITATIONS OF THE STUDY: The New Zealand Best Practice Recommendations for early detection of CP are based on international guidelines and have been peer reviewed for the Aotearoa New Zealand context. Local and regional health professionals have collaborated to inform the PĒPI ARC protocol with the aim to improve access to early CP assessments and early detection rates of CP. Reduction in health inequities for Māori and Pasifika have been targeted through informed partnerships. Resource development and planning of PĒPI ARC Hub has been co-designed with families and recognises the ecological context of Aotearoa New Zealand. A limitation is that only high-risk infants with “newborn detectable risks” will be included in the study.

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.

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