The ResearchWorks Podcast

Reflections on participation in the community, as self-reported by young people with cerebral palsy Jacinta Quartermaine , T A Rose , Megan Auld , Leanne Johnston Abstract Background and objective: This study focused on the community-based participation experiences of young people with cerebral palsy (CP), investigating the factors that make participation easier or harder. Methods: Accessible methods were utilized to explore the perspectives of 15 young people with CP aged 15 to 26 years with diverse motor and communication abilities (Gross Motor Function Classification System I = 4, II = 6, III = 1, IV = 3, V = 1, Viking Speech Scale I = 7, II = 4, III = 3, IV = 1). Participants provided regular written reflections, photographs, or videos about their community-based participation. Data were analyzed using reflexive thematic analysis. Results: Self-reported reflections were grouped inductively into 421 codes, then 22 subthemes and 6 themes: (i) My CP characteristics can make participation in the community more difficult; (ii) My own thoughts, emotions, confidence, and sense of achievement influence the things I do in the community; (iii) Accessibility of the environment and availability of equipment influences my participation in the community; (iv) The range of supports I have available influences my participation in the community; (v) Whether the community activity has been adjusted to include and involve me influences my participation; and (vi) The attitudes, actions, and level of acceptance from others in the community influences my participation. Discussion: Key factors influencing community-based participation for young people included CP characteristics, thoughts, emotions, confidence, environment, equipment, supports, accommodations, attitudes, actions, and acceptance. Keywords: Cerebral palsy; community; participation; qualitative thematic analysis; young people. https://pubmed.ncbi.nlm.nih.gov/42143034/

From evidence to practice: factors influencing the implementation of cord blood treatment for cerebral palsy in the United States Madison C B Paton, Joanne Kurtzberg, Jessica Sun, Sarah Reedman, Remy Blatch-Williams, Michael Fahey, Iona Novak, Megan Finch-Edmondson Abstract Background and aims: Cord blood infusion is an emerging treatment for cerebral palsy (CP) currently offered in the United States through clinical trials and an expanded access pathway. This study aimed to understand the barriers and facilitators influencing implementation of cord blood treatment for CP, to help inform future implementation efforts. Methods : Semi-structured interviews were conducted with US professionals involved in the cord blood treatment program for CP at Duke University and a collaborator site. Data were analyzed using reflexive thematic analysis. Results : From 16 interviews, 5 themes were identified capturing patterned barriers and enablers. Key facilitators included boundary-spanning clinical leadership, interprofessional coordination, dedicated resourcing, responsiveness to community demand, an established safety profile, and a strong research culture. Barriers included the need for cross-disciplinary expertise, uncertainty regarding efficacy evidence, funding and regulatory constraints, and system-level challenges. Participants described that many barriers were overcome to establish the program, while acknowledging that others may persist and are context dependent. Conclusions : Findings highlight that implementation of cord blood treatment for CP is feasible within specialized settings but contingent on local infrastructure, governance, and workforce capacity. Identified facilitators align with established implementation strategies and offer transferable insights, while underscoring the need for regulatory approval, ethical oversight, and system-level supports to enable equitable and sustainable access to emerging regenerative therapies for CP. Keywords : barriers; cerebral palsy; cord blood; facilitators; implementation. https://pubmed.ncbi.nlm.nih.gov/42571975/

Muscle morphology and intramuscular fat after treatment as usual including BonTA in children with cerebral palsy - a commentary and some context. Associate Professor Sian Williams Decreased muscle size (muscle atrophy) and fat infiltration have been believed to be two important muscle changes during the growth of children with cerebral palsy (CP). Muscle atrophy has been well demonstrated in short-term studies in the calf muscle (medial gastrocnemius; MG) in children with CP. However, intramuscular fat infiltration has been less studied, mainly because it has been difficult to measure accurately. Therefore, there is a need for long-term follow-up of muscle alteration, including both muscle structure and composition, in children with CP using a technique that can provide reliable, quantitative, and specific measurement. In this study, we used different MRI techniques to evaluate muscle composition including intramuscular fat content changes after a 12-month treatment-as-usual (TAU), starting with the first botulinum neurotoxin A (BoNT-A) injection, in children with CP and typically developing peers. All children with CP received at least one injection into the MG. We measured muscle volume, fascicle length, pennation angle, and intramuscular fat fraction of four lower leg muscles, including both muscles that point the foot downward (plantarflexors) and upward (dorsiflexors). We found that the muscle volume (when adjusted for body size) of all evaluated muscles was not changed after the 12-month TAU in children with CP. Similar results were observed for muscle structure at the fascicle level, including fascicle length and pennation angle. However, the amount of fat within the muscle increased in the MG at the 12-month follow-up. After a 12-month TAU which involves BoNT-A injection, there was no clear evidence of ingoing muscle atrophy in the lower-leg muscles, including both plantarflexors and dorsiflexors. However, we found increased infiltration of intramuscular fat in the injected muscle (MG), suggesting changes in muscle composition despite stable muscle size. https://pubmed.ncbi.nlm.nih.gov/42501405/

Gross Motor Function Measure 66 Item Sets for use with infants and toddlers at high risk for cerebral palsy: construct validity and responsiveness. Natalie A Koziol , Christiana D Butera , Lin-Ya Hsu , Silvana Alves Pereira , Stacey C Dusing Funded by AACPDM - Professor Dusing appears on the podcast thanks to the generosity of the AACPDM. Abstract Aim: To evaluate the construct validity and responsiveness of the Gross Motor Function Measure-66 Item Set (GMFM-66-IS), a standardized criterion-referenced observational measure, for use with children younger than 24 months with or at high risk for cerebral palsy (CP). Method: Non-experimental integrative data analysis was performed on secondary data from three clinical trials involving children with or at high risk for CP (n = 79, 42 males, mean corrected age = 11.3 months [SD = 4.9]), and one observational study of typically developing children (n = 32, 14 males, mean age = 5.7 months [SD = 0.8]). The GMFM-66-IS and comparator instrument (gross motor subtest from the Bayley Scales of Infant and Toddler Development, Third Edition [Bayley-III] or Bayley Scales of Infant and Toddler Development, Fourth Edition [Bayley-4], depending on the study) were administered at baseline and 3 months later. Comparator groups were based on neurological impairment, clinical rating of gross motor change, and CP status. Correlations (r) and regression-adjusted standardized mean differences (Hedges' g) were computed. Results: GMFM-66-IS and Bayley scores were correlated at baseline (r = 0.83), 3 months later (r = 0.88), and across time (r = 0.83). Children with mild impairment had higher mean GMFM-66-IS scores at baseline (g = 0.87) and 3 months later (g = 0.95). Children rated as demonstrating greater than expected gross motor change had larger mean GMFM-66-IS change scores than children demonstrating less than expected change (g = 0.62). Typically developing children had larger mean GMFM-66-IS change scores (g = 1.00). Interpretation: GMFM-66-IS scores were supported by evidence of strong construct validity and moderate responsiveness https://pubmed.ncbi.nlm.nih.gov/39951388/

Profiling the oral language and psychosocial skills of young people attending Flexible Learning Programs. Dr Emily Jackson https://pubmed.ncbi.nlm.nih.gov/41432037/

Swimming for Children with disability: experiences of rehabilitation and swimming professionals in Australia. Karen Graham, Katarina Ostojic, Leanne Johnston ,Iain Dutia, Elizabeth Barnes-Keoghan and Georgina L. Clutterbuck Abstract Background Swimming is a common goal for children with disability, and the most popular sport for children in Australia. This study explored swimming and rehabilitation professionals’ perceptions of swimming for Australian children with disability. Methods Rehabilitation and swimming professionals with recent experience working with children with disability completed an online survey. Quantitative data: Binary and Likert-scale questions were analysed descriptively. Qualitative data: Open-ended questions were evaluated using reflexive thematic analysis and mapped to the family of Participation-Related Constructs (fPRC). Results 91 swimming professionals and 55 rehabilitation professionals ($n = 146$) responded. Confidence vs. Knowledge: Most were confident supporting children with disability with swimming goals (rehabilitation = 71.6%, swimming = 73.8%). Most had neutral to very low knowledge of para-swimming eligibility and classification (rehabilitation = 75%, swimming = 77.7%). Themes Identified: 10 themes (33 code groups) covering all core elements of the fPRC were identified. Barriers & Facilitators: Included pool accessibility (physical and sensory), program availability, affordability, acceptability (of content and culture), and having accommodating professionals and programs. Program Goals: Professionals believed swimming programs should develop children’s confidence, water safety, swimming skills, and fitness. Conclusion Rehabilitation and swimming professionals should review existing programs to ensure they meet the needs of children with disability. Further research is needed to create an action plan to improve swimming participation for Australian children with disability. https://www.mdpi.com/1660-4601/22/11/1633

Activating parents in early childhood intervention: a multi-study examination of the PAIR model as an implementation strategy. This study evaluated the PAIR model as a practical tool for implementing family-centred, relational early childhood intervention. Across three linked studies, they found that while brief training improved practitioners’ knowledge and confidence, sustained adoption and observable practice change were strongest when training was combined with reflective supervision. The research highlights that organisational barriers, particularly short service blocks and limited time for reflection, remain major constraints. It provides timely evidence on what is required to translate relational approaches into consistent, scalable practice that positions parents as primary agents of their child’s development. https://www.tandfonline.com/doi/full/10.1080/1034912X.2026.2651694

Well... actually we are over 300 episodes old but it took a while to get the band back together after the European Academy of Childhood-onset Disabilities conference! Join Dayna, Ash and Marissa (and a special guest appearance by Ed - on video no less!)

Enhancing physically active leisure participation for children with cerebral palsy: a randomised controlled trial. Professor Leanne Sakzewski

ResearchWorks is heading to AACPDM 2026 in Philadelphia this year! We can't wait to see you there - it's a special 80th Annual Meeting for the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM). Join with us as we speak with Dr Kristie Bjornson - live from EACD 2026 in Galway Ireland, the final episode that we recorded on our European tour! A preview of what to expect from this year's annual congress and a look at the host city, Philadelphia! Register here: https://www.aacpdm.org/events/2026/registration

It's the special summary episode of our EACD 2026 conference series live from Galway Ireland! The conference was centred around the F-words and there was a call to action on the clinical application of the F-words. Enjoy the final episode of our European Academy of Childhood-onset Disability Annual Congress series - the ResearchWorks team are on a mini-break, which we hope you'll use to catch up the entire series of episodes from Galway. We'll be back with full length episodes in a few weeks time! Thank you to everyone who came by the booth to say hello, to all of our guests on the show, to Theresa for the generous shout-out in the closing ceremony and to those who keep telling Ed he needs his own podcast, or to record his own audiobook! He's too busy editing the pod to do that but he is very honoured whenever he gets asked for a selfie.... that happens more than you might think! :)

Avoid the tyranny of orthodoxy, the F-words, goal setting and real life application.

Developmental regression in childhood - identification, investigation and outcomes.

An evidence-based, standardized, and practical diagnostic framework for cerebral palsy.

Helping Children Flourish: Parent-Informed Social Narratives to Support Readiness for Upper Limb Rehabilitation in Cerebral Palsy

Health-Related Quality of Life after Guided Growth Treatment for Hip Displacement in Young Children with Cerebral Palsy

The implementation of evidence-based exercise supports (FitSkills) and the impact of young people with disability participating in their communities alongside peer mentors

Building capacity for real world participation.

Does multi- level surgery weaken muscles in ambulatory youth with CP?

Non-invasive Measurement of work of breathing in children and young adults with high level cerebral palsy.