No images? Click here
September 2021: CP-Achieve Bulletin
Welcome to the September 2021 edition of the CP-Achieve newsletter. And congratulations to Lyndal Hickey who has become an Associate Investigator on our team. Lyndal is working on a number of projects for CP-Achieve and several of her social work students have recently provided, under her supervision, valuable input to the Adolescent Advisory Working Group.
Regular webinars are being conducted again and we look forward to hearing from Harry Taylor and Magnus Ivarsson on 28th September. If you have topics for future webinars, please do let us know. We are fortunate to have several PhD students affiliated with CP-Achieve and in this newsletter, we read about John Carey and his interesting career with a link to more details on the Melbourne School of Health Sciences website. Great research is continuing to be published and in this issue, you can read summaries of two important studies which have significant implications for clinical care; lifelong measurement of changes to muscles and joints, and scoliosis surveillance.
We are all looking forward to the Combined 11th Australasian Academy of Cerebral Palsy and Developmental Medicine and the 3rd International Alliance of Academies of Childhood Disabilities Conference ‘BETTER TOGETHER’ (AusACPDM / IAACD 2022) early next year. CP Achieve is involved in a pre-conference workshop. Unfortunately due to Covid restrictions, the conference will now be virtual but the advantage is that this will provide opportunity for more people to attend from every part of Australia and internationally. Here is the link to the conference website https://www.bettertogether2022.org/
Please keep in touch and as always, let us know of any new opportunities to improve the lives of people with cerebral palsy and their families.
Dinah Reddihough, CP-Achieve Principal Investigator
Congratulations, Lyndal Hickey!
Dr Lyndal Hickey is our newest Associate Investigator with CP-Achieve. Lyndal is a Research Fellow in the Department of Social Work at the University of Melbourne.
Lyndal's research is focusing on supportive psychosocial interventions for families caring for a person with a disability or health condition.
CP-Achieve Webinar Series
September 27th 5-5:30pm
This 30-minute webinar will provide information about navigating the experiences and challenges of caring for those with CP, and a longitudinal perspective of mental health outcomes across childhood in children with developmental disabilities.
Harry Taylor is a medical student with Monash University, currently taking an intermission in his studies. He has been a disability support worker for four years, caring for a client with cerebral palsy. He is also involved with CP-Achieve through Dr Robbie Eres, assisting in a project looking to gain understanding of the social, mental and physical health of carers of those with cerebral palsy.
Magnus Ivarsson is a clinical psychologist and a PhD student at Linköping University in Sweden. He has a broad interest in research about mental health, participation, cognitive accessibility, and disability.
Meet Paediatric and Sport Physiotherapy PhD Student John Carey
John shares how a career in Paediatrics and Disability Physiotherapy can take you across the globe and speaks about his experience in undertaking a PhD.
John Carey began his studies with a four-year Bachelor of Science (Honours) degree at Trinity College Dublin where his passion for travelling and interest in health, wellbeing and movement inspired his decision to pursue a career in Physiotherapy. He has worked clinically while travelling the world from his native Ireland to the UK, Australia and New Zealand. In 2020, Carey decided it was time to pursue further studies to enrich his role as a clinician and for the opportunity to open up new avenues within teaching and leadership with a PhD at the University of Melbourne.
October 6 marks World Cerebral Palsy Day
We ask people around the world to come together to celebrate and support those living with CP, embrace diversity and to help create a more accessible future for everyone.
Join the movement this World Cerebral Palsy day to help create awareness and action around cerebral palsy,
Because every person living with cerebral palsy is a reason to strive for change.
Right to Safety Workshop with Women with Disabilities Victoria
Women with Disabilities Victoria has partnered with the Genetic Support Network Victoria (GSNV) to offer one half-day training to anyone in the community who is interested.
The workshop will focus on introducing participants to gender and disability inequality, violence against women and primary prevention of violence against women with disabilities.
Presenters:
Olivia is a passionate feminist and advocate for women's rights, health and safety. She has been working for five years in the women's rights space with roles spanning family violence response, international development, gender and disability advocacy and the prevention of violence against women.
Tess is a social worker who has worked for Women with Disabilities Victoria for 3 years. She has a lived experience of cerebral palsy which she uses to inform her training to deliver PVAW gender and disability intersectionality training to disability and social service organisations.
Epidemiology of scoliosis in cerebral palsy: A population-based study at skeletal maturity
The most serious orthopaedic complication of cerebral palsy is a severe curvature of the spine, called ‘scoliosis’. It has been known for some time that children with cerebral palsy who are able to walk may develop very mild scoliosis. It is very rare for scoliosis to become worse over time for these children, and it does not have effects on their health or function. In contrast, children and youth who are unable to walk may develop more severe scoliosis that can progress rapidly. Some children with severe scoliosis may require surgery. If left untreated, severe scoliosis can and impact on sitting, comfort and breathing, and can cause major health problems.
Researchers at The Royal Children's Hospital and Murdoch Children's Research Institute, supported by CP-Achieve, have conducted a population-based study of scoliosis to see if they could identify characteristics of a child’s cerebral palsy that might place them at greater risk of developing scoliosis.
Researchers found strong links between a child’s walking ability and their risk of developing scoliosis. Almost all the young people in the study who were able to walk did not develop scoliosis and did not require treatment. Those who were unable to walk were much more likely to develop severe scoliosis. These young people had walking ability classified at level IV or V by the Gross Motor Function Classification System (GMFCS).
The research team also found that children with greater limitations in their upper limb function (Manual Abilities Classification System) and certain types of movement disorders (dystonia and mixed tone) were more likely to develop severe scoliosis.
This information will be helpful to young people with cerebral palsy, their parents and carers and health care professionals. In addition, a major purpose of the study will be to use the results to design ‘scoliosis surveillance’ programs to detect scoliosis before curves become severe and are harder to treat. Hip surveillance has been an important part of care for children and youth with CP for many years. We now have the information needed to develop guidelines for scoliosis surveillance programs.
This study was made possible by the Victorian Cerebral Palsy Register (VCPR) and has just been published in the Journal of Paediatrics and Child Health. The researchers wish to acknowledge the help provided by the VCPR and thank the young people with cerebral palsy who took part in the study.
Progression of Postural Asymmetry in Young Adults With Cerebral Palsy Who Are Not Walking: An Exploratory Study
Many adults with cerebral palsy who are reliant on wheelchairs for mobility experience significant changes to their muscles and joints over time. These changes commonly affect the rib cage, spine, pelvis and hips causing difficulty with sitting in wheelchairs, lying in bed, and reduced function. We do not know how rapidly these changes to the muscles and joints occur in adults or if the changes become relatively stable in adults.
This exploratory study investigated postural change, most specifically to the ribcage, pelvis and hips, over an 18 month period. Posture of the ribcage, pelvis and hips was measured by a physiotherapist using the Goldsmith Indices of Body Symmetry. This is a clinical measurement tool providing objective information on the changes to the ribcage, pelvis and hips that are observed in many adults with CP who have very limited ability to change their own position and are thus in one position for extended periods of the day and night.
The study included 10 non-ambulant adults with cerebral palsy and indicated that changes to the muscles and joints of the ribcage, pelvis and hips had already occurred prior to study onset and was generally stable over the 18 month period. The most common posture among the participants was “windsweeping” of the hips where both legs fall to one side of the body and are unable to be brought back to a symmetrical or midline position, with associated changes to the rib cage and pelvis. More sudden changes to posture across the time period were associated with acute pain or injury (for example). For a person reliant on a wheelchair for mobility these changes can have a significant impact on their ability to function and participate in activities of their choice.
This study highlights the importance of lifelong measurement of changes to the muscles and joints and that the Goldsmith Indices of Body Symmetry can be used by therapists to provide this vital information to monitor posture and guide therapy.
Dr. Carlee Holmes is a senior physiotherapist at the Young Adult Complex Disability Service, St. Vincent’s Hospital Melbourne and a Research Associate with CP-Achieve. Professor Prue Morgan is Head of Physiotherapy at Monash University and a CRE CP Achieve investigator. Dr Kim Brock is a senior research physiotherapist and clinician at St Vincent’s Hospital Melbourne. Carlee Holmes completed this study as part of a PhD with Monash University.
We have filmed a couple of our team members, click on the videos below to hear them speak!
Meet Prue Morgan (Team 2 Leader: Building supportive environments for adolescents and young adults with cerebral palsy) and Georgia Mckenzie, PhD Student for Team 2!
Team 2 research aims to enhance the transition from adolescence to young adulthood through the development and testing of educational lifestyle modules that may assist young people with cerebral palsy maximise their participation in life activities. See more below!
have a question?
We’re happy to help with any questions you might have. Check out more information on our socials linked below!
