The ResearchWorks Podcast

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! :)

Developmental regression in childhood - identification, investigation and outcomes.

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

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

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.

Neurowashing in Early Intervention: A Review of Neuroscience Rhetoric and an Appraisal Tool.

Optimising the neuroplasticity window: from evidence to early CP intervention

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.

Power mobility experience, meaning and outcomes for children with complex non-ambulant cerebral palsy: A scoping review

Why do families not participate in free parent education programs? a cross sectional population based study of preschoolers

Dynamic Movement Intervention, Cuevas Medek Exercises and the state of the evidence. Challenging the status quo.

EACD 2026: Fostering self generated movement with low cost and technology based strategies (Dr Susan Duff, Dr Theresa Sukal Mouton)

Enhancing Mobility in Students with Non-Ambulatory Cerebral Palsy in School Settings: A Scoping Review of the MOVE Program

Keynote: Changing the conversation on childhood disability: family voices and power of the F-Words

Transforming the experience for families in Early Intervention whilst optimising outcomes for infants and young children with developmental challenges using Ei SMART, a multidisciplinary and co-produced evidence-based framework.

Beyond the labels: How to set goals and identify intervention ingredients for children with childhood-onset disabilities through the novel F-words Lens Tool (instructional)

Implementing low-cost powered mobility devices in children with Cerebral Palsy: from concept to clinical practice  (workshop)

Beyond tone reduction: functional effects and muscular adaptations after botulinum toxin in children with cerebral palsy.

Randomised Controlled trial of Vision Intervention for Seeing Impaired Babies: Learning through Enrichment (VISIBLE RCT)

Childhood disability in the 21st Century: Out of the shadows with the world health organisation and some ‘F-words’ (Public lecture)What a wonderful way to start this conference. The F-words have been around since 2012 and since then, we have seen an important shift in the field of child-onset disability. What do the F-words mean in practice and how can they be used to support development and to enable children and their families to "being, becoming and belonging"? 

AbstractThis article explores the often-overlooked tragedy of promising happiness through overcoming disability. It draws on qualitative interviews and focus groups with 36 adults with cerebral palsy to explore how medical discourse shapes the ways in which individuals are encouraged to pursue a good life, leading to unintended consequences. Sara Ahmed's theory of happiness is used to understand the dialectics of pursuing a good life through overcoming disability, revealing how medical interventions and discourse during childhood inadvertently contribute to feelings of inferiority and social alienation. The article highlights the need to reconsider how individuals with disabilities are encouraged to pursue a good life, emphasizing the paradox of disabling effects arising from attempts to minimize and overcome disability.https://www.sciencedirect.com/science/article/pii/S027795362500098X

Time toxicity and shared decision-making in cerebral palsyDavid B Frumberg, Paige T Church, Nathan RosenbergPMID: 41387091 DOI: 10.1111/dmcn.70123AbstractClinicians and families regularly enter into a process of shared decision-making. Seldom, if ever, however, is the critical question of time usage, or, more specifically, time-related burdens, accounted for when establishing goals and outcome measures. Time-related burdens are not included, for instance, as an outcome measure in cerebral palsy research-something which may have profound effects about which we are unaware. By contrast, in the field of oncology, time-related burdens, or, more technically, what has been termed time toxicity, has been increasingly studied. Building on that work, we seek to apply the concept of time toxicity to people with disabilities who interface with healthcare at great frequency.https://pubmed.ncbi.nlm.nih.gov/41387091/

From Childhood to Adulthood: Lifespan insights into health and health service needs in cerebral palsyKeynote session: Oceania Academy Of Cerebral Palsy And Other Childhood-onset Disabilities

We catch up with Professor Hércules Ribeiro Leite - to discuss his 2024 top-cited DMCN article!What are the barriers and facilitators to participation of people with Down syndrome? A scoping reviewDeisiane Oliveira Souto, Marina Oliveira de Sousa, Rafaela Guimarães Ferreira, Ana Claudia Brandão, Pedro Brandão Carrera, Hércules Ribeiro LeiteFree articleAbstractAim: To determine the barriers and facilitators of active community participation of children, adolescents, and adults with Down syndrome.Method: Searches were completed in five electronic databases to identify original studies about participation of children, adolescents (ages < 18 years), and adults (ages 18-59 years) with Down syndrome. Barriers and facilitators to participation were categorized into four factors: personal, social, environmental, and policy and programme. Findings were analysed and validated by a young adult with Down syndrome and a family member, using the public and patient involvement strategy.Results: Fourteen studies were included: eight with children and adolescents and six with adults. Of the 14 studies, 10 were qualitative and four quantitative. Most studies (n = 9) investigated participation in physical activities, while only a few examined participation in community/social activities (n = 3), daily activities (n = 2), and leisure activities (n = 1). The most commonly cited barriers and facilitators were the availability of programmes and specialized professionals, transportation, as well as attitudes and behaviours. Physical and psychological characteristics of people with Down syndrome and facilities were also frequently mentioned as barriers. On the other hand, the desire to stay active and personal interest in the activity were among the most frequently reported facilitators.Interpretation: The participation of people with Down syndrome is mainly influenced by physical or psychological factors, the support and attitudes of parents/caregivers, and the availability of specialized programmes. Given the scarcity of research investigating the participation of people with Down syndrome in community activities, daily activities, and leisure, especially in adults, more studies are still needed.

Longitudinal decline in upper-limb range of motion in adults with cerebral palsyErika Cloodt, Jenny Hedberg-Graff, Anna Lindgren, Marianne Arner, Evgenia Manousaki, Katina Pettersson, Elisabet Rodby-BousquetAbstractAim: To analyse longitudinal changes in passive range of motion (ROM) in the upper limb in adults with cerebral palsy (CP).Method: Passive ROM for shoulder abduction and flexion, supination, and elbow and wrist extension was analysed in a longitudinal cohort of adults aged 16 to 76 years from the Swedish CP registry. Individual ROM trajectories and mean ROM curves were calculated using the Manual Ability Classification System (MACS). A mixed-effects model was used to examine changes over 3 to 13 years 7 months.Results: In total, 1395 adults with CP were analysed (769 males, 626 females; median age 26 years). A continuous decline in shoulder ROM, supination, and wrist extension was observed across all MACS levels. Decline rates differed between MACS levels for shoulder flexion, elbow extension, and wrist extension, with steeper declines at higher MACS levels (levels IV and V). Adults classified in lower MACS levels (I and II) had greater initial ROM and slower declines compared to adults classified in higher MACS levels.Interpretation: Upper-limb ROM continuously declined in adults with CP, particularly at higher MACS levels. The varied decline rates highlight the need for tailored interventions and systematic follow-up to maintain ROM and functional ability, especially among individuals at higher risk.

EACD 2026 - Galway, Ireland. "‘Mol an Óige agus Tiocfaidh Siad’​ - Encourage the young and they will flourish​".We catch up with Dr Hazel Killeen President, EACD Annual Congress 2026 Lecturer in Occupational Therapy College of Medicine, Nursing and Health Sciences, University of Galway and Dr Rory O'Sullivan Scientific Chair, EACD Annual Congress 2026 Head of Strategy & Innovation, Central Remedial Clinic.It was an honour to sit down with the organisers of this years European congress and discuss the upcoming conference and encourage you to visit Galway this June (2026). It will be an incredible conference and the ResearchWorks team will also be there to interview keynotes and other incredible speakers from across the globe!There is still time to register, so visit the link below for more information.https://www.eacd2026.com/

Join Dayna and Marissa on an extended episode back, after the Oceania Conference 2026, with the one and only Dr Brian Hoare. A candid conversation about: More isn’t always better: getting smarter about therapy dosage in children with cerebral palsy.Join us for a wonderful look at why it isn't just about doing more - dosage is far more complex than that and we - as therapists and researchers - need to get smarter about this, especially for children with cerebral palsy.

A brilliant conference that has come to a close but we are excited about the implications both for the future and what we can implement into clinical practice today.Dayna and Marissa walk through some of their favourite moments, interviews and the conference. Also... who doesn't like a good acronym? 😉  #REACHR.E.A.C.H.R - Research Priorities & Resource Allocation E - Early Detection & Experiences A - Assessments & Advocacy C - Collaborations & Careers H - HopeA series of interviews and discussions with leading researchers, clinicians and advocates - live from Oceania Conference 2026, Hobart, Tasmania, Australia.

We catch up with Dr Joline Brandenburg!An incredible conversation, all about: Developmental Neuromotor Disorders have altered Motor Neuron Morphology and Survival.A continuing series of interviews from Oceania Conference 2026 - live from Hobart, Tasmania, Australia.

We have the opportunity to speak to the wonderful Dr Alison Salt and Dr Nofar Ben Itzhak - fellow Perth-ians, but meeting across the other side of our continent! We get to speak with them both about the European Cerebral Visual Impairment Clinical Practice Guidelines.A continuing series from Oceania Conference 2026, live from Hobart, Tasmania, Australia!

We catch up with friend of the show, Dr Theresa Sukal-Moulton!It's our pleasure to speak with her about: Selective motor control changes from term age to 3 months of age in infants both with and without cerebral palsy.A continuing series from Oceania Conference 2026, live from Hobart, Tasmania, Australia.

It's always a privilege to speak with Monica - we have the chance to talk to her about: Hammersmith Infant Neurological Examination findings in infants with hemiplegic cerebral palsy from 3 to 24 months.A continuing series from Oceania Conference 2026 - live from Hobart, Tasmania, Australia!

We catch up with an old friend - Dr Iain Dutia to discuss all things fatigue.Understanding cognitive fatigue in people with cerebral palsyA continuing series from Oceania Conference 2026 - live from Hobart, Tasmania, Australia.

It's our pleasure to have Anne McNee on the pod - discussing: Evaluating the Effectiveness of Serial Casting for Idiopathic Toe Walking in Children with Autism Spectrum Disorder.A continuing series from Oceania Conference 2026 - live from Hobart, Tasmania, Australia.

We catch up with Dr Fiona Russo! We're discussing her paper: Four Layers Deep: Co-Designing a Community-Led Online Navigation Program for Families of Young Children with Cerebral Palsy.A continuing series from Oceania Conference 2026 - live from Hobart, Tasmania, Australia.

Validation and Responsiveness of activity limitation testing in framerunning for children and young people with CP.We catch up with friend of the show Dr Reedman and Healthy Strides' Sam King!Validation and Responsiveness of activity limitation testing in framerunning for children and young people with CP.

We catch up with Rachel Byrne - Executive Director at the Cerebral Palsy Foundation. We have the chance to discuss the topic of Scaling Australian clinical breakthroughs into a global CP roadmap.From Australian Advances to a Global Roadmap for Cerebral PalsyA continuing series from the Oceania 2026 Conference, live from Hobart, Tasmania, Australia.

We finish off Day 1 of the conference with the dynamic duo of Dr Johan Jarl and Assoc. Professor Ann Alriksson-Schmidt!We have the privilege to talk Dr Jarl and Dr Alriksson-Schmidt about the educational outcomes of adolescents with spina bifida in Sweden.A continuing series of interviews from Oceania Conference 2026, Hobart, Tasmania, Australia.

We catch up with the brilliant Dr Postol to talk about her paper: "Stepping Forward" with overground exoskeletons and "More than Movement" with walking frames.A continuing series from Oceania Conference 2026, live from Hobart, Tasmania, Australia!

We catch up with Sophia Gribbon from the Healthy Strides Foundation.Kindy Moves - the experience of early, intensive, group based locomotor training (from the parents perspective).A continuing series, live from Oceania Conference 2026, Hobart, Tasmania, Australia.

We continue our Oceania Conference series (2026) with an interview with John Coughlan.Working with families, professionals, and the World Health Assembly

We catch up with friend of the show, Dr Carly Luke!Early identification of Australian First Nations infants at high risk of neurodevelopmental disability or neurodiverse outcomes by 12 months of age.A continuing series from Oceania Conference 2026 - live from Hobart, Tasmania, Australia!

We catch up with ResearchWorks own Marissa Smith!Today we discuss the topic of evidence based guideline implementation. Real-World Application of Evidence-Based Guidelines in Paediatric Neurodisability.A continuing series from Oceania Conference 2026 - live from Hobart, Tasmania, Australia! NB. This episode was pre-recorded at the ResearchWorks studio prior to the conference.

We catch up with Dr Lynne McKinlay - to talk about Hope!Hope can reduce burnout (and what you can do to become more hopeful)A continuing series from Oceania 2026 Conference, live from Hobart, Tasmania, Australia!

We catch up with Meredith Smith to talk pain assessments!Pain Assessment in children with in CP: PhD PlatformA continuing series from Oceania 2026 Conference - live from Hobart, Tasmania, Australia!