Professor Nick Gottardo walks us through medulloblastomas - a comprehensive master class for clinicians and researchers.  Expect to learn about early signs and symptoms, diagnosis, treatment and prognosis. Dr Nick breaks this down beautifully.

What was really clear throughout our discussion was that collaboration is key. Given the incidence of medulloblastomas and the specific subtypes that fall within this category, it would not be possible to develop effective treatments that minimise detrimental side effects without coming together with centres across the world.

This episode is truly special so if you want to know the current state of the evidence when it comes to treating medulloblastomas - this is a must listen episode.

All about knowledge translation

A special episode with our illustrious hosts before we catch up with Professor Nick Gottardo, Professor Alicia Spittle, Professor Andrew Whitehouse, Dr Gareth Baynam, Assoc. Professor Nikki Milne and Assoc. Clinical Professor Anita Gross amongst many others!

Effectiveness of postural interventions in cerebral palsy: umbrella systematic review.

Monica Toohey , Remy Blatch-Williams , Kristian Budini , Astrid Ferreira , Alexandra Griffin , Ashleigh Hines , Michelle Jackman , Karin Lind , Jill Massey , Maria Mc Namara , Jenna Mitchell , Catherine Morgan , Esther Norfolk , Madison CB. Paton , Daniel Polyblank , Sarah Reedman , Iona Novak


Discussion

The objective of this umbrella systematic review was to summarize and evaluate the evidence for postural management interventions in cerebral palsy published since Gough's 2009 paper. We have expanded the scope of the review from passive continuous postural management to include active postural control interventions. Many interventions show positive effects on postural outcomes including range of motion, spasticity, pain, hip migration, gross motor function, hand function, gait parameters,

Conclusion

In conclusion, our umbrella systematic review evaluated the evidence for postural control and postural management interventions in CP, since Gough's seminal 2009 paper. Despite numerous interventions showing positive effects on various postural outcomes, such as range of motion, spasticity, and gross motor function, the overall quality of evidence remains low to very low, limiting the certainty of conclusions and recommendations. The lack of certainty and population heterogeneity poses

https://www.sciencedirect.com/science/article/abs/pii/S1751722224000805

Dr Dayna Pool

Curtin University and the Healthy Strides Foundation

The final words.... Thank you!

Lize Kleeren (PhD  Candidate) and Lisa Decraene (PhD Candidate)

KU Leuven

Presentation titles

1: Proximal proprioception in children with and without unilateral cerebral palsy, measured with state-of-the-art robotics.

2: Robotic evaluation of bimanual coordination in children with unilateral cerebral palsy with different manual abilities.

Dr Rachel Toovey 

University of Melbourne

Presentation title: Pathways to participation:understanding the experiences of families of children with disability in gymnastics

Dr Cristina Simon-Martinez

University of Applied Sciences in Valais (Switzerland)

Poster title: RehaBot: A chatbot between therapists and patients to establish telerehabilitation programs and quantify their outcome.

Anke Arkesteyn, PhD Candidate

KU Leuven

Poster title: Physical activity participation in adolescents with autism spectrum disorder: barriers and facilitations - a qualitative study.

Amy De Roubaix, PhD Candidate

Ghent University

Presentation title: The impact of developmental coordination disorder: preliminary results in Belgium

Assistant Professor Sudarshan Dayanidhi 

Shirley Ryan Ability Lab, NorthWestern University

Presentation title: Mitochondrial energetics in impaired muscle growth and across functional levels in children with cerebral palsy 

Professor Nora Shields 

LaTrobe University, Olga Tennison Autism Research Centre

Presentation title: Effect of a community-based intervention (FitSkills) for young people with disability on physical activity participation: a stepped wedge cluster randomised trial

Álvaro Hidalgo-Robles - PhD Candidate

Dr Lisa Mailleux 

University of Leuven

Presentation: The assessment of grip strength and stereognosis in preschool aged children with and without unilateral cerebral palsy

Ewan is the director of Malaria Risk Stratification at the Kids Research Institute Australia. 

With over a decade of international research experience spanning the fields of astronomy, statistics, machine learning and epidemiology, Dr Ewan Cameron returned to Australia in February 2020 as an Associate Professor at Curtin University and Honorary Research Associate at The Kids Research Institute Australia. 

Within the Malaria Atlas Project, he leads a team responsible for the innovation of novel approaches to probabilistic disease mapping, with a focus on bespoke model development for sub-national risk stratification.

https://www.researchworks.net

Dr Mari Carmen Lillo 

Miguel Hernandez University

Presentation title: Early intervention in neurodevelopmental disabilities in Europe: sharing experiences 

Aisling Ryan, PhD Candidate

University of Queensland

Presentation title: Expert consensus on optimal child-led goal setting practices for school-aged children with a disability or delay: An International Delphi Study

Professor Roslyn Boyd 

Queensland Cerebral Palsy and Rehabilitation Research Centre, University of Queensland

Presentation title: Efficacy of infant friendly Baby-CIMT and Baby-BIM in a randomised trial of home-based parent delivered early intervention for infants at risk of unilateral cerebral palsy

Associate Professor Leanne Johnston 

University of Queensland

Presentation title: Effectiveness of school-based physiotherapy intervention for children: a systematic review

Ahlam Zidan, PhD candidate

McGill University

Presentation: Understanding the effectiveness of transition to adult interventions for adolescents with disabilities it’s a realist informed, mixed method, systematic review.

Ms Atefeh Taghizadeh, PhD Candidate 

LaTrobe University

Presentation title: Development and psychometric properties of the Upper Limb-Motor Learning Strategy Tool (UL-MLST) for children with cerebral palsy

Professor Sylvain Brochard

(Co-chair of the technological task force for EACD)  and BEaCHiLD (Breizh Research and Innovation Centre for Child Development and Rehabilitation) and 

Niek De Taeye:

Head of family user forum of EACD and parent of daughter with CP.

Presentation title: Building technologies for children with disabilities: how to start from their needs?

Professor Reidun Jahnsen

University of Oslo, Oslo University Hospital

Presentation title: How did youth with cerebral palsy perceive participation in everyday life after participating in a periodical intensive rehabilitation programme based on adapted physical activity? A qualitative interview study

Dr Stacey Cleary

CPAchieve, Murdoch Children’s Research Institute, Honorary University of Melbourne

Presentation title: The experiences and perceptions of participation in daily life of adolescents and young adults with cerebral palsy: a scoping review

Associate Professor Helen Bourke Taylor

Monash University

Presentation title: Online Healthy Mothers Healthy Families workshops: positive health and lifestyle impact for mothers of children with disabilities.

Assessing functioning of children on the autism spectrum is necessary to determine the level of support they require to participate in everyday activities across contexts. 

The International Classification of Functioning, Disability and Health (ICF) is a comprehensive biopsychosocial framework recommended for classifying health-related functioning in a holistic manner, across the components of body functions, activities and participation, and environmental factors. 

The ICF Core Sets (ICF-CSs) are sub-sets of relevant codes from the broader framework that provide a basis for developing condition-specific measures. This study combined the ICF-CSs for autism, attention deficit hyperactivity disorder (ADHD) and cerebral palsy (CP) to validate the ICF-CSs for autism in an Australian sample of school-aged children. 

This cross-sectional study involved caregivers of school-aged children on the spectrum (n = 70) completing an online survey and being visited in their homes by an occupational therapist to complete the proxy-report measure based on the ICF-CSs for autism, ADHD and CP. Absolute and relative frequencies of ratings for each of the codes included in the measure were calculated and reported, along with the number of participants who required clarification to understand the terminology used. 

Findings indicate that the body functions and activities and participation represented in the ICF-CSs for autism were the most applicable for the sample. However, findings relating to environmental factors were less conclusive. Some codes not currently included in the ICF-CSs for autism may warrant further investigation, and the language used in measures based on the ICF-CSs should be revised to ensure clarity.

https://pubmed.ncbi.nlm.nih.gov/38400895/

Rose Elekanachi

McGill University

Poster title: The development and validation of a cost of care questionnaire for children  with arthrogryposis multiplex congenita: a caregiver perspective

Dr Nathalie De Beukelaer 

KU-Leuven, University of Geneva

Presentation title: Morphological muscle growth in infants and toddlers: a longitudinal study

Dr Ruslan Vasyutin  

Founder of DCP Help and Master Goal

Presentation title: Challenges of comprehensive rehabilitation for children and families in time of war conflict.

Jorn Ockerman

Ghent University

Presentation title: Current measurement practices and use of technology among Flemish pediatric physiotherapists.

Dr Caroline Alexander

Curtin University, Telethon Kids Institute, Perth Children’s Hospital

Presentation title: Interrater reproducibility of General Movement Assessments and motor optimality scores in large populated based cohort.

Dr Amanda Kwong 

University of Melbourne, MCRI

Presentation title: Knowledge translation of early identification of cerebral palsy (KiTE CP) study: engagement in screening implementation among a high-risk prospective cohort of Australian infants.

Daniel Navon

Abstract

When it comes to neurodevelopmental differences, a genetic test result can provide compelling answers. However, it is not always clear what the relevant question is. If we want to understand the impact of a genetic diagnosis such as NGLY1 deficiency or the fragile X, trisomy X, or 22q11.2 deletion syndromes on people with neurodevelopmental differences, we must be mindful about what exactly a genetic test is supposed to tell us, where and for whom it matters, and which avenues for action it opens or forecloses. These are all moving targets.

Specifically, I discuss the shifting ways a genetic test result can answer the following questions.

What is this person's diagnosis?

What symptoms and developmental differences are they likely to experience?

What is the best way to approach their development, treatment, and care?

Will they have a life worth living?

When you unpack the sociological nuances of each question, the history behind them, and the uneven ways they are asked, the meanings of the answers change quite radically. I discuss the implications for social inequalities and urge experts and stakeholders to exercise agency when they interpret a genetic diagnosis.

What this paper adds

• The questions a genetic test can answer depend on a range of social factors.
• Whether and how a genetic test result affects diagnosis, identity, prognosis, and treatment is a moving target.
• Genetics creates questions about a life worth living that it cannot answer alone.
• Stakeholders must choose the questions about neurodevelopmental differences that genetics should answer.

An interview with Connor Johnstone - discussing his personal journey and lived experience, the f-words and what they meant to him and the article: Effects of voluntary exercise on muscle structure and function in cerebral palsy by Noelle G. Moreau and Richard L. Lieber - published in DMCN 2022.

Connor is a personal trainer, support worker and table tennis coach currently studying at Edith Cowan University to become a Clinical Exercise Physiologist. Connor has completed a bachelor's degree in exercise and sport science and a master's degree in strength and conditioning. 

Connor was a participation officer at the Healthy Strides Foundation in 2022 and helped create the Participate App. Connor has an athletic background competing in Table Tennis for Australia from 16 until he was 23, and now currently competes in Brazilian Jiu-jitsu.

Connor’s career goal is to help as many people as people with a disability as he can through exercise as a strength and conditioning coach or as a clinical exercise physiologist.

Rethinking our physical therapy approach (Redux)

This was an inspiring conversation. We covered so much ground and this just reflects the expertise of our guests today. 

Diane has been such a driving force for evidence based interventions. Her work has significantly influenced global practices and her passion was so tangible throughout this conversation. 

Ginny’s perspective is incredibly refreshing and honest. I love how she seeks out interventions when they look promising but “when it doesn’t pan out”, she has the ability to move on. 

There is so much to take away from this episode! The main theme that runs through the conversation is essentially the importance of evidence based practice. It is our professional duty to keep up with the evidence and provide the best level of care. Diane reminds us that there is an urgency in rehab because we have children before us that have developing muscles and brains that need the right input. Science doesn’t compete and this compels us to provide green light interventions because there are so many options now! 

The question is - why are non-evidence based interventions still available? 

We explored this topic and the persistence of therapists in continuing to provide red light interventions or interventions that use red light intervention principles. For sure, the time, money and personal investment therapists put into their profession are factors that can limit the ability to change their practice. 

We are a medical profession and with that, comes a responsibility to follow the science. We are a great source of information for the families that need our services and they would hope that we are up to date with the latest and the best. We have evidence now, and this is different from 50 years ago or even 20 years ago. We can’t simply be doing whatever we want anymore because unlike decades ago when there wasn’t anything guiding us, we now have the evidence. Therefore, we can no longer say there isn’t enough evidence or that we are waiting for more evidence to come. We can start now. 

The more I work in this industry and the more I speak with researchers and leading therapists, I too want our profession to grow in effectiveness, influence and impact. The advertising we see online with therapists using moving surfaces and manoeuvres that attempt to integrate reflexes (of which there is no evidence for despite what is said in the advertising) under the banner of manual facilitation techniques, are all part of the red light intervention family. Even when the approach is rebranded from 50 years ago, there is still no grounding or evidence to support its thought processes.

 This contrasts so significantly with the green light interventions which are all based on decades of knowledge on motor learning principles. The difference here with the red light interventions is that these principles have been repeatedly proven, time and time again. The science is very clear on this. There is no argument to the contrary so again, why are we still providing red light interventions when we have so many options in the green light family? 

I have come to learn that following the science isn’t personal. Saying that an intervention has red light features isn’t personal. Critically evaluating our practices isn’t personal but our professional responsibility. What we provide in our care, as health professionals shouldn’t be personal and based on personal preferences. As a medical profession, if that is what we want it to be, we need a concerted effort by all to ensure that it remains that way. 

As Diane said, we’re not done yet and we are continually trying to push the boundaries and find better interventions. To be ready for that though, we need to catch up and not be left in thought processes of 50 years ago. Let’s do this together!

The pod now has many (thousands!) of new listeners and we decided to bring forward our annual Q and A session with the hosts of the show.

A little more backstory of each host, a look back at why we do what we do, some incredible highlights you might have missed and why the pod is a firm proponent of evidence based practices.

We cover off many topics, including:

Is the podcast a full-time gig? 

What the difference between evidence-based and evidence-informed practice is,

Qualitative research and the rich benefits of it's implementation,

The often overlooked concept of maturation,

The view of pain and discomfort in therapy - the good and the bad, 

Hands-on vs hand-off approach and the top-down and bottom-up philosophies, 

Our scientific stance on manual facilitation techniques and why we have a section on the website that is dedicated to our conversation with the DMI (Dynamic Movement Intervention) founder(s).

It's about why research both matters and why ResearchWorks! 😉


We still plan on bringing you some incredible interviews with amazing researchers over the last 7 episodes of the year, culminating in our historic 200th episode milestone, so be sure to stayed tuned! 

Bhooma R Aravamuthan, Toni S Pearson, Keisuke Ueda, Hanyang Miao, Gazelle Zerafati-Jahromi, Laura Gilbert, Cynthia Comella, Joel S Perlmutter

Affiliations expand

• PMID: 36701240
• DOI: 10.1111/dmcn.15524

Abstract

Aim: To determine the movement features governing expert assessment of gait dystonia severity in individuals with cerebral palsy (CP).

Method: In this prospective cohort study, three movement disorder neurologists graded lower extremity dystonia severity in gait videos of individuals with CP using a 10-point Likert-like scale. Using conventional content analysis, we determined the features experts cited when grading dystonia severity. Then, using open-source pose estimation techniques, we determined gait variable analogs of these expert-cited features correlating with their assessments of dystonia severity.

Results: Experts assessed videos from 116 participants (46 with dystonia aged 15 years [SD 3] and 70 without dystonia aged 15 years [SD 2], both groups ranging 10-20 years old and 50% male). Variable limb adduction was most commonly cited by experts when identifying dystonia, comprising 60% of expert statements. Effect on gait (regularity, stability, trajectory, speed) and dystonia amplitude were common features experts used to determine dystonia severity, comprising 19% and 13% of statements respectively. Gait variables assessing adduction variability and amplitude (inter-ankle distance variance and foot adduction amplitude) were significantly correlated with expert assessment of dystonia severity (multiple linear regression, p < 0.001).

Interpretation: Adduction variability and amplitude are quantifiable gait features that correlate with expert-determined gait dystonia severity in individuals with CP. Consideration of these features could help optimize and standardize the clinical assessment of gait dystonia severity in individuals with CP.

Georgia McKenzie, Nora Shields , Claire Willis

Affiliations expand

• PMID: 35694973
• DOI: 10.1080/09638288.2022.2083243

Abstract

Purpose: To understand the factors influencing participation in community-based gym exercise for young adults with cerebral palsy (CP).

Methods: A qualitative study using semi-structured interviews was conducted. Interviews were completed with 39 young adults with CP (15-30 years, GMFCS I-IV) following a peer-supported, gym-based exercise program called FitSkills.

Results: "Finding what works for me" was the overarching theme. Through their gym experiences, young adults with CP identified four interrelated main themes that influenced whether gym participation "worked" for them, or not: (i) psychological factors, (ii) a "social" participation context, (iii) organisational and logistical support, and (iv) cost. The social context of FitSkills was perceived to positively influence psychological health outcomes and attenuate perceived barriers to participation. Organisational support facilitated their initial attendance, while logistical effort and cost affected ongoing or future gym participation.

Conclusions: Social involvement plays a critical role in positive participation experiences in community exercise settings for young adults with CP. Clinicians supporting exercise participation for this group should prioritise intervention strategies that promote social engagement and mental wellbeing. Collaboration between clinicians, community leisure organisations, and funding bodies may be essential to overcome logistical and financial barriers during the transition to adulthood. Implications for rehabilitation.

The main factor influencing the attendance, involvement, and ongoing exercise preferences of young adults with cerebral palsy (CP) was the social context of the participation experience.Altering the social environment through peer-mentoring can facilitate participation in the gym.Young adults with CP consider mental wellbeing to be an important motivator and outcome of gym-based exercise participation.Mental wellbeing should be prioritised for health promotion for this group.Collaboration between recreation organisations, health services, clinicians, and consumers to address logistical and financial factors can facilitate positive physical activity participation experiences in community settings.

Keywords: Disability; adolescent; inclusion; physical activity; social context.

Watch the video-cast at the ResearchWorks Podcast YouTube Channel!
https://www.youtube.com/watch?v=S0dzGX1k3bs

Roslyn Ward, Elizabeth Barty, Neville Hennessey, Catherine Elliott, Jane Valentine

Affiliations expand

• PMID: 36615031
• PMCID: PMC9821676
• DOI: 10.3390/jcm12010232

Free PMC article

Abstract

The implementation of an intervention protocol aimed at increasing vocal complexity in three pre-linguistic children with cerebral palsy (two males, starting age 15 months, and one female, starting age 16 months) was evaluated utilising a repeated ABA case series design. 

The study progressed until the children were 36 months of age. Weekly probes with trained and untrained items were administered across each of three intervention blocks. Successive blocks targeted more advanced protophone production and speech movement patterns, individualised for each participant. 

Positive treatment effects were seen for all participants in terms of a greater rate of achievement of target protophone categories and speech movement patterns. Tau coefficients for trained items demonstrated overall moderate to large AB phase contrast effect sizes, with limited evidence of generalisation to untrained items. Control items featuring protophones and speech movements not targeted for intervention showed no change across phases for any participant. 

Our data suggest that emerging speech-production skills in prelinguistic infants with CP can be positively influenced through a multimodal intervention focused on capitalising on early periods of plasticity when language learning is most sensitive.

Keywords: cerebral palsy; early intervention; infant vocalisations; infants; single-subject research design.

Watch the video-cast at the ResearchWorks Podcast YouTube Channel!
https://youtu.be/hO7VkbrVZoE

Among the most common questions we are asked when it comes to therapy for autistic children is how much therapy should a child be receiving.

This is a really logical question to ask. It reflects the love and concern that parents have for their child, and their strong desire to make decisions that will best support their child now and into the future.

What does the research evidence tell us?

Considerable research over the past three decades have provided good evidence that start to help us understand more about this area. Four clear facts have emerged:

1. Early therapies and supports are important.

Early experiences, including therapy early in a child’s life can help shape early brain development, and this early foundation provides a ‘springboard’ for the development of more advanced skills. Early therapy can also provide a way for parents to receive important advice and guidance at a time when this is particularly needed. Importantly, a focus on early therapies doesn’t mean that supports at later ages are not important or effective as well – they are. Both are important.

2. There is no ‘standard amount’ of therapy.

There is no set amount of therapy that will lead to better outcomes for all children. Some children will require what we call ‘intensive’ supports, which involves substantial amount of time with a practitioner each week. However, many children do not require such intensive supports, and may benefit best from only a small amount time with a practitioner weekly, fortnightly, monthly or just on occasion as required.

3. ‘More’ does not necessarily mean ‘better’.

Research evidence does not indicate that more therapy leads to better outcomes for all children.

4. Quality is as important as quantity.

A focus on asking ‘how much’ can sometimes mean that we don’t focus enough on the critical factor of therapy ‘quality’. Having practitioners who are qualified, with current knowledge and skills, and who have access to supervision, are key elements of good practice. The quality of therapy is every bit as important as the amount of therapy a child receives.

What is a better question to ask?

The research evidence tells us that when we ask ‘how much’, we are actually asking the wrong question.

Instead, a better question to ask is: How much is the right amount of therapy for my child and family, right now.

An answer to this question emerges through a partnership between the child, their family and the practitioner. Each person brings unique knowledge and skills to that decision. 

How much therapy is needed is determined by the child’s goals, strengths, challenges, and family context. It is only by weighing up all of the information available that a shared decision can be made as to what is the right amount of support now. Ongoing monitoring and review of support gaps or successes, can then decide what, if anything, needs to change to better suit the needs of the child and family.

For those interested in the video-cast, our entire conversation is now available to view on our YouTube page.

https://www.youtube.com/@researchworkspodcast

Watch the video-cast at the ResearchWorks Podcast YouTube Channel!
https://www.youtube.com/watch?v=fNMsXKfCHkc

Sarah McIntyre, Shona Goldsmith, Annabel Webb, Virginie Ehlinger, Sandra Julsen Hollung, Karen McConnell, Catherine Arnaud, Hayley Smithers-Sheedy, Maryam Oskoui, Gulam Khandaker, Kate Himmelmann; Global CP Prevalence Group*

Free PMC article

Abstract

Aim: To determine trends and current estimates in regional and global prevalence of cerebral palsy (CP).

Method: A systematic analysis of data from participating CP registers/surveillance systems and population-based prevalence studies (from birth year 1995) was performed. Quality and risk of bias were assessed for both data sources. Analyses were conducted for pre-/perinatal, postnatal, neonatal, and overall CP. For each region, trends were statistically classified as increasing, decreasing, heterogeneous, or no change, and most recent prevalence estimates with 95% confidence intervals (CI) were calculated. Meta-analyses were conducted to determine current birth prevalence estimates (from birth year 2010).

Results: Forty-one regions from 27 countries across five continents were represented. Pre-/perinatal birth prevalence declined significantly across Europe and Australia (11 out of 14 regions), with no change in postneonatal CP. From the limited but increasing data available from regions in low- and middle-income countries (LMICs), birth prevalence for pre-/perinatal CP was as high as 3.4 per 1000 (95% CI 3.0-3.9) live births. Following meta-analyses, birth prevalence for pre-/perinatal CP in regions from high-income countries (HICs) was 1.5 per 1000 (95% CI 1.4-1.6) live births, and 1.6 per 1000 (95% CI 1.5-1.7) live births when postneonatal CP was included.

Interpretation: The birth prevalence estimate of CP in HICs declined to 1.6 per 1000 live births. Data available from LMICs indicated markedly higher birth prevalence.

What this paper adds:
* Birth prevalence of pre-/perinatal cerebral palsy (CP) in high-income countries (HICs) is decreasing. 
* Current overall CP birth prevalence for HICs is 1.6 per 1000 live births. 
* Trends in low- and middle-income countries (LMICs) cannot currently be measured.
* Current birth prevalence in LMICs is markedly higher than in HICs. 
* Active surveillance of CP helps to assess the impact of medical advancements and social/economic development. 
* Population-based data on prevalence and trends of CP are critical to inform policy.

Peter L Rosenbaum, Monika Novak-Pavlic

Watch the video-cast at the ResearchWorks Podcast YouTube Channel!
https://youtu.be/MUfMh5lYk_I

Free PMC article

Abstract

Purpose of review: Traditional thinking and focus in 'childhood disability' have been on the child with the impairment - with the imperative to make the right diagnosis and find the right treatments. The implicit if not direct expectation was that interventions should aim to 'fix' the problems. Professionals have led the processes of investigation and management planning, with parents expected to 'comply' with professionals' recommendations. Much less attention has been paid to parents' perspectives or their wellbeing.

Recent findings: In the past two decades, we have seen a sea change in our conceptualizations of childhood disability. The WHO's framework for health (the International Classification of Functioning, Disability and Health (aka ICF)) and CanChild's 'F-words for Child Development' inform modern thinking and action. We now recognize the family as the unit of interest, with parents' voices an essential element of all aspects of management. The goals of intervention are built around the F-words ideas of function, family, fun, friendships, fitness and future.

Summary: There has been world-wide uptake of the F-words concepts, with increasing evidence of the impact of these ideas on parents and professionals alike. There are important implications of these developments on the structure, processes and content of services for children with neurodevelopmental disorders, their families and the services designed to support them.

Keywords: Child and family development; Childhood disability; F-words in child development; Family wellbeing; ICF.

© The Author(s), under exclusive licence to Springer Nature Switzerland AG 2021.

Conflict of interest statement

Conflict of InterestIn this article, Peter Rosenbaum and Monika Novak-Pavlic present and discuss CanChild’s F-words for Child Development and describe the CIHR-funded ENVISAGE study. Dr. Rosenbaum is the lead author of the original F-words paper that reported these concepts. 

All the F-words materials discussed in this paper are available for free on the authors’ website: www.canchild.ca/f-words. 

ENVISAGE is a research study underway as this paper was being written, and there are no financial implications of this work. 

Peter Rosenbaum and Monika Novak-Pavlic declare no conflicts of interest relevant to this manuscript.

This clinical practice guideline is for the identification, diagnosis, and treatment of people with ADHD.

It outlines a roadmap for ADHD clinical practice, research and policy, now and in the future, with a focus on everyday functioning and quality of life for people who are living with ADHD and those who support them.

The Guideline includes eight chapters covering the identification, diagnosis, and treatment of people with ADHD, as well as considerations for subgroups, service & policy and further research.

1. Identification
2. Diagnosis
3. Treatment & Support
4. Non-Pharmacological Interventions
5. Pharmacological Interventions
6. Considerations – Subgroups
7. Considerations – Service & Policy
8. Considerations – Research

Approvals

This guideline has been approved by the NHMRC and endorsed by APS, RACP, RACGP, Speech Pathology Australia, Occupational Therapy Australia, ACPA, AAPI, ADHD WA, ADHD Foundation, RANZCP, ADHD Australia and the World Federation of ADHD.

The guidelines can be downloaded at the link below:

https://aadpa.com.au/guideline/

Watch the video-cast at the ResearchWorks Podcast YouTube Channel!
https://www.youtube.com/@researchworkspodcast

The ResearchWorks Team is back for Season 3 with an all-star lineup of brilliant researchers - starting with Professor Mark Bellgrove, Professor Peter Rosenbaum, Professor Andrew Whitehouse and Dr Sarah McIntyre!

The episodes will release from March 5, 2023.

For more information on the pod, or to catch up on previous seasons and episodes - visit our website:
 
www.researchworks.net

LIVED EXPERIENCE - AN INSIGHT ON THERAPY, THE F-WORDS, RESEARCH AND EVIDENCE BASED PRACTICES AND WHAT KIND OF IMPACT IT CAN HAVE.

Today’s episode is one of our wrap up episodes where we bring together all the topics of conversation from the past season. 

We will be referring to the work of Christine Imms and the Family of Participation Related Constructs, Physical Activity through sport and the work of Georgina Clutterbuck, Hércules Ribeiro Leite. 

Moving through different life stages and the reasons for doing what we do - highlighting the work of Mark Peterson and of course the overarching framework that is the CanChild F-words.

Welcome to Season 2's end of year wrap up episode!

We have had so very many excellent guests on the pod - both in person and online and covered a plethora of topics over that time. For episodes up to 56 , you'll find our mid-season wrap up in episode 57.

This weeks episode covers our conversations with:

Dr Catherine Morgan
Professor Hércules Ribeiro Leite
Associate Professor Helen Leonard
Associate Professor Suze Leitão
Dr Elizabeth Hill & Dr Samuel Calder
Ginny Paleg & Clinical Associate Professor Roslyn Livingstone
Dr Lisa Mailleux and Lize Kleeren
Dr Emily Jackson
Professor Christine Imms
Professor Veronique Bach and Dr Sue McCabe
Dr Kyla Smith

We still have one more extra special episode coming this year - so stay tuned for that one but the team will then be on their Summer Break until early February 2023. With a number of exciting announcements to come about the pod and the future!

www.researchworks.net

LEAP-CP stands for Learning through Everyday Activities with Parents, an early detection and intervention program that adapts the international clinical practice guideline for early detection and intervention in CP for low and middle income countries. 

In this paper, LEAP-CP was tested in an RCT with Asha Bhavan Centre in India from 2019 to 2019 and has continued implementation since 2021. This study aimed to determine the acceptability, appropriateness, feasibility, penetration, retention and fidelity of LEAP CP at the Asha Bhavan Centre in India.

Golam Moula is the Research Project Coordinator, working in the field of rehabilitation for children with cerebral palsy at a national level Indian Organisation - Asha Bhavan Centre. 

He manages the LEAP CP, a randomised controlled trial of Early Intervention for infants with cerebral palsy in collaboration with the University of Queensland and is managing the ongoing implementation of the LEAP CP Program. 

AN EVIDENCE BASED APPROACH TO HEALTHY EATING

Dr Kyla Smith is a paediatric dietician with a passion for helping families to feed their children well without the overwhelm. Dr Smith has a PhD in childhood weight management and 15 years experience working with restrictive eaters both in her clinic and online programs. Dr Smith has developed a suite of online programs and resources to help families feed their children with confidence. 

As the first paediatric dietician on our show, I must say, what a way to start! This episode sets the foundation for a lot of future conversations and I would encourage you to share this episode with your friends and family! 

The concept of the “division of responsibility” is one of great importance and significance in our current context. “You provide and they decide” is so valuable in every household and extends to children with neurodisabilities. We know that some children with neurodisabilities have sensory preferences associated with past experiences. In these instances, forcing the issue of feeding a variety of food can be frustrating for all involved. 

Providing choice and autonomy remains relevant. However, it is also vital that if there are concerns with intake and growth that help is sought from a health professional. For some children this may mean dietary supplements that are provided by a clinical expert following clinical guidelines. Dr Smith’s advice to “stay in our lane” as health professionals or well-meaning people in our community becomes very relevant here. Just because we all eat, doesn’t mean we are an expert in providing nutritional advice if children are not eating well to support their growth! It is so important to recognise the biases that we may bring from our own upbringing and experiences and distinguish this from actual evidence based information. 

The overwhelm of information from uncurated sources continues to ring true in this area. To distinguish between evidence based advice and personal testimonial advice is a difficult task. Therefore, seeking expert advice if there are concerns about nutritional intake cannot be overstated.

On a more general note that is relevant to all of us, whether we have children or not is that there is so much power in our language. To learn that a third of adolescents have some kind of disordered eating behaviour was alarming. The commentary from so many sources today about diet culture surrounds us and we need to be more conscious than ever about our language and how we talk about food with each other and our young people. 

For more information on Dr Smith - visit her website 
https://mealtimes.com.au/

Veronique Bach, Frederic Telliez, Karen Chardon, Pierre Tourneux, Virginie Cardot, Jean-Pierre Libert

In this episode, we talk more broadly about thermoregulation in wakefulness and sleep in humans - a bit of a deep dive into human physiology. We increasingly understand that there is a relationship between sleep, body temperature regulation and patterns of skin temperature. 

The functional consequences of this relationship is that sleep disturbances can be observed with thermoregulatory changes. Knowing that there is this relationship, there are a number of clinical implications that can be influenced by therapists and the environment. 

Some considerations include 

(1) how thermoregulatory responses can be modified by sleep stages; 
(2) how skin and internal body temperatures vary according to the sleep-wake cycle;  
(3) how manipulating thermal parameters can influence sleep quantity and structure. 

Christine Imms, Mats Granlund, Peter H Wilson, Bert Steenbergen, Peter L Rosenbaum, Andrew M Gordon

• PMID: 27640996
• DOI: 10.1111/dmcn.13237

Free article

Abstract

This review outlines a conceptual approach to inform research and practice aimed at supporting children whose lives are complicated by impairment and/or chronic medical conditions, and their families. 

'Participation' in meaningful life activities should be an essential intervention goal, to meet the challenges of healthy growth and development, and to provide opportunities to help ensure that young people with impairments reach their full potential across their lifespan. 

Intervention activities and research can focus on participation as either an independent or dependent variable. The proposed framework and associated hypotheses are applicable to children and young people with a wide variety of conditions, and to their families. 

In taking a fresh 'non-categorical' perspective to health for children and young people, asking new questions, and exploring issues in innovative ways, we expect to learn lessons and to develop creative solutions that will ultimately benefit children with a wide variety of impairments and challenges, and their families, everywhere.