Rachel (13 years), her mother, Rene and sister, Sarah (9 years)
Thanks so much for making time to speak with us about the orthoses studies.
What were your reasons for choosing to be in the orthoses study?
I was keen to understand if splinting worked. I’ve seen other children with contractures and how limiting and painful this can be. We think it is exciting to be able to be involved and to contribute to finding proof of whether splints work or not.
What challenges have there been to your involvement?
Not really any challenges. I was really happy that we didn’t have to make any changes to our normal therapy to be part of the study otherwise it would have been a hard decision to make.
Rachel was a bit nervous and unsure before the first assessment. Even though we read through the little preparation booklet, I think not knowing what to expect made her worried. She worked really hard though and is now happy to be involved. I think, maybe, the study staff speaking directly with Rachel about what is involved in the assessments and the study might have helped reassure her.
What group is Rachel in?
We are in the no splint group. I was secretly hoping to be in the splinting group! At first I was a bit disappointed. On the up-side, we like being involved and thinking that we could be helping other children in the future. We know that being in this group is just as important to giving you the answers you need to help other families. The other good thing is that we have really close monitoring of Rachel’s hands and more detailed assessments than we normally do. Also I like the way that the study will find a way to help if we are having problems. Being in the no-splint group means the study has not really made an impact on our lives, which is a positive.
Do you have any other thoughts about the study?
The main thing is the communication is wonderful. The local research assistant is so clear and friendly and reassuring. Also, the App is really easy, it’s great. There is only one thing I am not certain about. There is a screen which asks about OT and physio in the last week. Then it asks about any other specialist appointments. I am not sure if this means specialists for looking after Rachel’s hands or any kind of medical specialists – neurologists, dentists, ophthalmologists?
ANSWER from Melinda Randall, Trial Co-coordinator at ACU:
Hi Rene, thank you for this query which provides me an opportunity to clarify for all TherApp users what the weekly question about ‘other specialist appointments’ means. ‘Other specialist appointments’ refers to any specialist appointment attended, regardless of whether it is related to your child’s upper limb(s), their CP or another reason, such as headaches or anxiety etc. So please answer ‘yes’ for any visit your child has attended to services such as, dentists, neurologists, renal physicians, ophthalmologists etc.
Each newsletter we will feature current news from one of the states where children are being recruited to the trials. This newsletter we hear news from the research team in NSW.
News from NSW
The NSW State Advisory Group farewells NSW Research Assistant, Ali Francis.
We are sad to farewell Ali Francis, the NSW Research Assistant. She is leaving to grow her private practice in paediatric occupational therapy. Ali is super organised, hardworking and friendly, and has been an invaluable asset to our research team. She has been a key player in establishing the study in NSW and we will miss her dreadfully. We wish you well Ali.
We are fortunate to welcome Kerrie Potgieter to the role. Kerrie has worked for many years at Cerebral Palsy Alliance and brings excellent skills to the job. Kerrie will be well known to some of our NSW study families and she looks forward to meeting others of you over the next few months.
We are delighted to have 82 children and families involved in our studies.
Did you know we have families from NSW, Victoria and Western Australia involved in these studies from Springwood to Springvale, Wanneroo to Werrington, and Fremantle to Fitzroy?
As well as new families joining the study, we have children returning for assessments after being in the study for 6 months and for 12 months. The time has flown by!
|Royal Children’s Hospital||Mr Jesse Taylor||03 9953 3541|
|Dr Sue Greaves||03 9345 9300|
|Monash Children’s||Mr Jesse Taylor||03 9953 3541|
|Dr Brian Hoare||03 9594 5620|
|Princess Margaret Hospital and Ability Centre||Mr Simon Garbellini||08 9380 2106|
|Ms Belinda McLean||08 9380 2106|
|Prof Cath Elliott||0416 246 627|
|Cerebral Palsy Alliance||Dr Margaret Wallen||02 9975 8808|
|Kerrie Potgieter||0475 984 865|