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March 2021: CP-Achieve Newsletter
Greetings to you all and I hope that you enjoy reading the March 2021 newsletter.
We are all looking forward to the Symposium which has been rescheduled to 17 and 18 June, so that people can attend the European Academy of Childhood Disability meeting in May (virtually). The CP-Achieve Symposium will be a joint initiative with the Australasian Academy of Cerebral Palsy and Developmental Medicine and will have the theme “Collaborate, Innovate, Achieve”. Our organising team are developing an excellent program with substantial consumer input.
I strongly recommend that you consider attending the Webinar on Monday 29th March at 5 pm. It is a wonderful opportunity to hear Professors Christine Imms and Bruce Bonyhady discuss the “big picture” initiatives that are in progress at present, including the National Disability Strategy, the National Disability Research Agenda, the CP Information Project and the ANZ CP Strategy. I am sure that you will have many questions about these projects, and it will be good to have some questions answered. There is so much going on at the present time and I hope these initiatives improve the landscape for people with cerebral palsy, their families and carers.
There are several research updates in this newsletter including a systematic review from one of our PhD students, Georgia McKenzie. Well done, Georgia!!
I hope you enjoy reading this newsletter. Please be in touch with us if you have ideas, thoughts about CP-Achieve or items for upcoming editions.
Dinah Reddihough, CP-Achieve Principal Investigator
CP-Achieve Webinar Series
Next Episode: March 29th 5-6pm
Our key messages:
This 1-hour webinar will provide information about a range of different projects and activities that are occurring in Australia that provide important context for the CP Achieve program of work.
Topics covered will be:
National Disability Strategy
National Disability Research Partnership
National Disability Data Asset
National Disability Research Agenda
The CP Info Project
The ANZ CP Strategy
Followed up by a 20-minute Q&A session.
Register here: https://thebigpicture_cpachieve.eventbrite.com.au
Meet the Team
Michelle is a lecturer and researcher in the Australian Catholic University and is based in North Sydney. Michelle graduated as a speech pathologist with a B.Sc. (Hons) in Clinical Speech and Language Studies from Trinity College Dublin in 2000.
She followed with a M.Sc. specialising in paediatric dysphagia from Trinity College Dublin in 2008. Michelle completed her PhD research on the topic of the effectiveness of behavioural interventions for drooling in children with cerebral palsy. Michelle has over 17 years’ experience working in disability, acute medical, and community healthcare settings. Her research interests include: effectiveness of intervention drooling, dysphagia and dysarthria for children with CP; family perspectives on how to optimise outcomes from interventions; outcome measurement, and clinical education in disability contexts. Michelle is a certified member of the Australian Speech Pathologist Association (CPSPA member no. 9681).
You can meet our entire team here: https://www.cp-achieve.org.au/about/our-team/
Research Updates
Barriers and facilitators of physical activity participation for young people and adults with childhood‐onset physical disability: a mixed methods systematic review
This study aimed to bring together research from around the world to find out what stops or helps young adults with childhood-onset physical disabilities being physically active.
We found 19 studies with young adults aged 15 and over who were born with a physical disability or diagnosed with one as a child. Almost half of the young adults who took part in these studies had cerebral palsy.
Importantly, the main factors that we found related to the people and environment around the person with a disability. There were three common ideas that were reported in the studies.
You can read more about what stops or helps young adults with childhood-onset physical disabilities being physically active on our website: https://www.cp-achieve.org.au/resources/publications/
Research Updates
Stakeholder consensus for decision making in eye-gaze control technology for children, adolescents and adults with cerebral palsy service provision: Findings from a Delphi study
Researchers: Petra Karlsson, Tom Griffiths, Michael T. Clarke, Elegast Monbaliu, Kate Himmelmann, Saranda Bekteshi, Abigail Allsop, René Pereksles, Claire Galea and Margaret Wallen
Following is a summary of a study which led to Clinical Guidelines for using EYE-GAZE CONTROL TECHNOLOGY. The study was completed by the Eyes on Communication Research Team and Advisory Group which includes members of CP-Achieve: Dr Margaret Wallen from ACU and Dr Petra Karlsson from Cerebral Palsy Alliance Research Institute. The Research Team also includes René Pereksles, mother of an adolescent using eye-gaze control technology. The Advisory Group included people with cerebral palsy and their communication partners and a range of health professionals. You can read more here.
Research Updates
Pain and its relationship with postural asymmetry in adults with cerebral palsy: A preliminary exploratory study
Carlee Holmes, Kim Brock & Prue Morgan (2021): Pain and its relationship with postural asymmetry in adults with cerebral palsy: A preliminary exploratory study, Disability and Health, In Press, DOI: 10.1016/j.dhjo.2021.101063
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 if these changes to the muscles and joints are causing pain especially in those adults who may have difficulties with cognition and /or communication. Nor do we know if the pain is present all the time, or just during the day or during the night.
You can read more about pain in Non-ambulant adults with cerebral palsy on our website.
Development of the Fearless, Tearless Transition model of care for adolescents with an intellectual disability and/or autism spectrum disorder with mental health comorbidities
For many young people with an intellectual disability and/or autism spectrum disorder with mental health concerns, transition from paediatric to adult care may be especially challenging. This new publication from CP-Achieve Associate Investigator, Evelyn Culnane, in the journal of Developmental Medicine and Child Neurology, describes the development of an innovative transition model of care at the Royal Children’s Hospital (RCH) Melbourne; a collaborative initiative led by Evelyn with a team of dedicated expert paediatricians and a psychiatrist, and involving many important stakeholders in the community including general practitioners, mental health providers and young people and their families.
Read more on our website under publications or at the following link: https://pubmed.ncbi.nlm.nih.gov/33332592/
Why Consumers?
CP-Achieve has officially been in action for a year. We have “achieved” a great deal.
Our anniversary is a good time to review a few of the key issues that are important to us. One of those issues is the words we use to describe adolescents and young adults with cerebral palsy and their families and carers who work with us. Their involvement informs our research, ensuring it is relevant for people with cerebral palsy and their families and carers.
We will keep using the word “consumer”. The steering group asked for advice from a person with cerebral palsy and a family member who are employed with CP-Achieve, and explored the words used in Australia and overseas. Many words are used to describe consumers, like public and patients, community, stakeholders, and people with lived experience. Opinions about the right words to use are varied, and discussions to choose the preferred words are usually robust.
Why use the word “consumers”? Read more about this important discussion on our website: https://www.cp-achieve.org.au/community/consumer-advisory-groups/
have a question?
We’re happy to help with any questions you might have. Check out more information on our socials linked below!
