KINDY MOVES: THE FEASIBILITY OF AN INTENSIVE INTERDISCIPLINARY PROGRAMME ON GOAL AND MOTOR OUTCOMES FOR PRESCHOOL-AGED CHILDREN WITH NEURODISABILITIES REQUIRING DAILY EQUIPMENT AND PHYSICAL ASSISTANCE
Reflections on this episode:
We know so much now about what key active ingredients are needed to achieve the best possible outcomes in children with cerebral palsy. However, there are some gaps in our knowledge with regards to how these ingredients can be applied within clinical practice, particularly given the diverse diagnostic groups many clinicians work with. This includes children with rare diseases or those that fit within the broader term of neurodisability.
Further to this, how these active ingredients can be applied to a population that are younger than what is usually reported as well as a group of children that require more physical assistance and equipment throughout the day is not well known. There has certainly been a dearth of effective interventions having been reported in these groups.
This study aimed to determine the feasibility of an intensive interdisciplinary program in improving goal and motor outcomes for pre-school aged children with non-progressive neurodisabilities. With feasibility being the main outcome, the areas that were explored included limited efficacy testing, acceptability, demand, implementation and practicality.
With 40 children recruited in this single group feasibility study, with a mean age of 3 years and 4 months, outcomes using the Goal Attainment Scale, Canadian Occupational Performance Measure, GMFM 66 and 10mWT were measured pre intervention, after a 4 week intervention (which consisted of 24 hours) and 1 month follow up.
The results indicated significant improvements post intervention compared to baseline for all measures which were also maintained at follow up. There are some really interesting applications here that can inform our clinical practice!
DOWN SYNDROME OR RETT SYNDROME IN THE FAMILY: PARENTAL REFLECTIONS ON SIBLING EXPERIENCE
Reflections on this episode:
This study explores the unique family experiences from the perspective of parents with children diagnosed with Down syndrome (156 families) or Rett syndrome (149 families). Through questionnaires, this study investigates the perceived advantages and disadvantages siblings face, as well as the impacts on holidays and recreational activities, alongside the parents' perceived availability of time.
The results revealed that parents consistently noted positive personality traits, an optimistic outlook, enhanced skills, and rich relationships as advantages for siblings in both groups. However, parents of children with Rett syndrome reported lower availability of time and more difficulties in social engagement and family holidays for siblings.
The study concludes that parents' perceptions vary with the type of disability and reflect the capabilities of the child with a disability. It also suggests that sibling experiences can be better understood by directly gathering data from siblings themselves to explore ways to enhance their experiences.
I love that this study documents the strengths children with Down and Rett Syndrome have. It is incredibly unique! The perspective of siblings is also unique and it is just so wonderful to not always just focus on the negative aspects but the positive ones including the fact that by being included in therapy with their sibling, they can also get some great benefits too. Reports like this serve to relieve some of the guilt that parents inevitably feel when they are already trying to do so much for their children.
MYTHS AND FACTS ON HIPS IN CHILDREN WITH CEREBRAL PALSY
Reflections on this episode:
Professor Susan Stott is a Professor of paediatric orthopaedic surgery at the University of Auckland, New Zealand and paediatric orthopedic surgeon at Starship Children’s Hospital in New Zealand.
Professor Stott was the second President of the AusACPDM and was the only New Zealand investigator on the NHMRC Centre for Research Excellence: Australasian Cerebral Palsy Clinical Trials Network hosted at University of Queensland.
She is the clinical lead of the New Zealand CP register and on the reference group of the newly formed Neurodevelopmental Network, under the auspices of the Paediatric Society of New Zealand. She therefore has the ability to translate key research findings into clinical practice through strong alliances with key stake-holders within the health sector.
In terms of general citation indices, her work has been cited 1546 times and h index 34. She has received the Gillies medal from the NZ Orthopaedic Assoc. for best paediatric orthopaedic research paper in 1998 and again in 2008. IN 2018, she was the AusACPDM Transformative Practice Award Winner and also received the prestigious Presidential Award, New Zealand Orthopaedic Association
PRIORITISED STRATEGIES TO IMPROVE DIAGNOSIS AND EARLY MANAGEMENT OF CEREBRAL PALSY FOR BOTH MAORI AND NON-MAORI FAMILIES
Reflections on this episode:
Improving service delivery and enabling earlier detection of CP is a priority globally; for example, work from Australia and the USA has been informing and trialing new models of care. However, this requires the addition of local and culturally specific information, to ensure that they are transferable to individual countries and health settings.
The aim of this paper was to identify prioritised strategies to support improvements in early health service delivery around the diagnosis and management of cerebral palsy for both Maori and non-Maori individuals. Using a participatory approach, health care professionals and the parents of children with CP attended co-design workshops on the topic of early diagnosis and management.
The results revealed the critical need for improved communication, support and guidance as well as education for families navigating their child with CP through the health care system.
I believe that papers like this are very important. Whilst we know what the recommendations are now because they are widely known, well published and internationally accepted, how we implement them needs careful consideration. We need to be involving the context and culturally relevant stakeholders if we want to be implementing any sustainable change.
This paper provides a beautifully laid out methodology for anyone who is thinking about embedding an early detection pathway in their country. Whilst we are seeing very similar themes across the world, the specific communication strategies and methods along with context specific support and guidance needs to be in line with local funding structures and expertise.
EARLY OTITIS MEDIA PUTS CHILDREN AT RISK FOR LATER AUDITORY AND LANGUAGE DEFICITS
Reflections on this episode:
My knowledge about ear infections was incredibly limited before this podcast. I have always seen the impact of an ear infection - an unsettled child, lack of sleep and sometimes recurring colds as a result. It is frustrating for families as they have to cancel appointments, affecting work and school.
Looking a little deeper though gave me so much more perspective. An ear infection is not just an ear infection. In fact, during the time of the ear infection, we need to be mindful that the child will have altered hearing. Altered hearing during important developmental phases can affect language development and this was an aspect that I hadn’t given as much thought to so once again, the environment that children are brought up in is so important.
Susan gives some great tips on what to do for families, therapists and teachers. Children with recurrent ear infections should have auditory testing and seeking medical interventions is important aspect to consider.
I often think about the children I see in clinical practice - children with cerebral palsy or a neurodevelopmental condition with recurrent ear infections. I do wonder what impact their recurrent ear infections have on their development which we know can be delayed in the first place?
My take home here is to encourage our families to seek auditory testing, use AAC and ensure that we are referring them to speech pathologists early.
A FAMILY-TAILORED EARLY MOTOR INTERVENTION (EMI-HEART) FOR INFANTS WITH COMPLEX CONGENITAL HEART DISEASE: STUDY PROTOCOL FOR A FEASIBILITY RCT
Reflections on this epsiode:
The beauty of this paper is that we can generalise what we know about early intervention principles in infants with cerebral palsy, directly to this vulnerable and understudied population.
Once again, we are seeing the results of studies that were carried out during the COVID-19 phase of our lives. The most interesting thing here is how valuable telehealth is in a sub-acute population. There is so much value in supporting families in this kind of way and it really encourages us as therapists to be the coach, empowering parents to problem solve and follow their instincts about their child.
Elena talks with such compassion with a tangible generous spirit that really does translate into her qualitative work. Supporting families by helping them to navigate through therapeutic interventions after major surgery is an important role for therapists and I encourage any clinician working with a sub-acute population to tune in to this episode.
We can learn a great deal by listening to the voices of families that have been through a very significant and unexpected phase of not only their life but also their child’s life.
EMERGENCE OF THE CORTICAL ENCODING OF PHONETIC FEATURES IN THE FIRST YEAR OF LIFE
Giovanni M. Di Liberto, Adam Attaheri, Giorgia Cantisani, Richard B. Reilly, Áine Ní Choisdealbha, Sinead Rocha, Perrine Brusini & Usha Goswami
Nature Communications volume 14, Article number: 7789 (2023)
Reflection on this epsiode:
I love this paper because in its simplest interpretation, it reinforces the value and importance of nursery rhymes for infants and toddlers. They are more than just fun songs to sing and though we don’t always get feedback from the infant, know that the rhythm is getting encoded in their brain! Infants are learning and interpreting and this has such significant implications for ongoing learning and language development.
Just keep singing and whatever you do, don’t sound like a robot - give it your all because it does make a difference.
CHEMICAL ANALYSIS OF FRESH AND AGED AUSTRALIAN E-CIGARETTE LIQUIDS.
ELECTRONIC CIGARETTE USAGE PATTERNS AND PERCEPTIONS IN ADULT AUSTRALIANS:
Reflections on this episode (Dr Pool)
E-cigarette use is common in Australia with a notable uptake of e-cigarettes in Australians aged over 60 years. E-cigarette use has often been seen as a potential way to quit or reduce tobacco smoking. Yet, in Australia, use of e-cigarettes more than doubled in all adults aged over 18 years. The perception is that e-cigarettes are completely safe to use long term however, this is not well supported in the literature.
This was a very timely and insightful conversation. There is so much misinformation out there but even more importantly, the use of e-cigarettes in our young people is increasingly common and this is of concern. So far, the evidence on the effects of vaping don’t look great! The attractive flavour profiles combined with the mechanism of heating up the liquid to then rapidly cooling down the liquid has some serious implications particularly with regard to changes in the chemical profile. All of this is then inhaled, entering circulation!
It was very insightful to learn that using e-cigarettes isn’t effective in quitting tobacco smoking. A myth that many of us may have heard of before but do not have the answers to. Whilst there is much confusion about the sale of e-cigarettes, it was comforting to know that it is illegal to sell in Western Australia. What was puzzling though is the high rates of usage!
This whole area really does highlight the value and importance of scientific research to provide the evidence to support legislation. Translation of findings into practice requires urgency and there is much to learn within this space.
This episode is highly relevant for all! Whether you are a therapist, teacher, parent, aunty or uncle - we need to stay on top of the science here so that we can provide the best advice to guide the young people that are in our lives.
Visit uncloud.org for the truth behind vaping!
PARENTING PRACTICES MAY BUFFER THE IMPACT OF ADVERSITY ON EPIGENETIC AGE ACCELERATION AMONG YOUNG CHILDREN WITH DEVELOPMENTAL DELAYS
Reflections on this episode (Dr Pool)
This randomised controlled trial of a telehealth-based behavioural parenting intervention aimed to evaluate whether increases in positive parenting such as praise, engagement and warmth and decreases in negative parenting (criticism, hostility) buffered the impact of adversity exposure on epigenetic age acceleration among minority preschoolers with developmental delays.
This research found that children exposed to more adversity showed lower epigenetic age acceleration when their parents engaged in increased positive and decreased negative parenting practices. This suggests that improved parenting can act as a buffer against the effects of adversity on biological aging in young children.
This paper provides so much thought and insight into how important parenting practices are. Positive parenting is actually apparent in children’s cells! This is profound and really reinforces the value of Parent Child Interaction Therapy and even more uniquely, when delivered via tele-health! The strength of having coaching through the screen in a family’s own home is a wonderful way to ensure that strategies can be embedded within the family environment rather than a clinical one that the child is not used to.
From locating the most ideal time out spot, to keeping the parent company during time out (especially as behaviours escalate) is just one of the many reasons why this model has some great implications in practice.
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Alexandra also provided us with some great links that we discussed during the podcast. Here they are!
For Producer Ed: how the PedBE clock is made: https://pubmed.ncbi.nlm.nih.gov/31611402/
For Marissa: My favorite “off the shelf” parenting book series: https://www.123magic.com/
Parenting interventions in the time of COVID: https://www.sciencedirect.com/science/article/pii/S1077722921000985
Big RCT in JAMA peds: https://jamanetwork.com/journals/jamapediatrics/article-abstract/2800318
Recent review article on parent-child interventions and how they change kids’ Bio: https://www.sciencedirect.com/science/article/pii/S0306453023009277
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9172888/
FROM GUIDELINES TO PRACTICE: A RETROSPECTIVE CLINICAL COHORT STUDY INVESTIGATING IMPLEMENTATION OF THE EARLY DETECTION GUIDELINES FOR CEREBRAL PALSY IN A STATE-WIDE EARLY INTERVENTION SERVICE
In this retrospective longitudinal cohort study that was completed in Western Australia’s tertiary paediatric early intervention service, knowledge translation strategies which included consumer perspectives, clinician training and communities of practices guided implementation.
With referral number and age, delivery of early detection and intervention following the implementation of the guidelines, it was found that the implementation strategies were effective in reducing referral age with improved delivery of early detection assessments.
This has some very important implications on both short and long term health outcomes.
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Sue-Anne Davidson is the Manager of Kids Rehab WA at the Perth Children’s Hospital and a PhD candidate at Curtin University. She has over 15 years experience in the design, implementation, and evaluation of tertiary paediatric rehabilitation services at PCH.
Sue-Anne’s experience in clinical, management and leadership has enabled her to lead improvements within the tertiary hospital setting to improve accessible, equitable and sustainable services for children and adolescents in WA.
She has served on several committees including the Disability Health Network’s Executive Advisory group and the WA Sustainable Health Review Clinical Reference Group. She is now the Co-Chair of the Child and Adolescent Health Service Disability Access and Inclusion Committee.
Sue-Anne has a Masters in Health Administration and is a PhD candidate with her studies focusing on the development of a state-wide early detection network for children at high risk of CP and neurodevelopmental disability, linked to national and international best practice models.
The ResearchWorks Podcast
Recorded at the RW Studio at the Healthy Strides Foundation, East Victoria Park, WA 6101, Australia
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The team at the ResearchWorks Podcast are celebrating 200 episodes! With over 4 seasons, invited collaborators with the EACD and AusACPDM conferences and Transformative Practice Award Winners for 2024, it has been a stellar journey. 🚀
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