To improve the lives of children who are suffering from chronic disease and their families, it is important that researches and studies must take place. However, the problem is, researchers set the priorities of the research and completely overlook the significance of involving the patients as well as their families.
That is why the Kaleidoscope Program is so unique; it will bring together the children suffering from chronic disease and their families, policymakers and clinicians to identify the research priorities.
It will help everyone to make sure that the only resources are directed towards the research, which is vital and relevant to the children with chronic health issues and their caregivers. If you want to know about the project, you need to know the details of the project and how it will work.
Details of the Project
The Kaleidoscope program is one of a kind project that can be extremely valuable for kids in Australia with a chronic health issue and their family. Here are some important aspects of the project that you should know.
Who is organising the Program
Children Chronic Diseases Welfare Organisation (CCDWO) is conducting the entire research, survey and organising the program. We have also received the support of various government and non-government institutions.
Who can participate in this program?
Children, who are 18 years and below, suffering from any kind of chronic condition, are included in this project. Apart from the children, their parents or caregivers, policymakers, clinicians can also become part of this project. And the patron, who has an interest in paediatric research in terms of chronic conditions, can also participate.
What chronic conditions are included?
All kinds of chronic or long-term health conditions are included in the Kaleidoscope program. Such condition generally includes overweight/obesity, anxiety/depression, autism spectrum disorder (ASDs), attention-deficit hyperactivity disorder (ADHD). There are also other conditions like some injury, frequent headache, etc.
The research priorities are the topics or questions, which are relevant across the majority of chronic conditions. For instance, information that can help the children and their caregivers with taking the medications, elevating the self-esteem, doing good at school, dealing with pain, coping with depression or anxiety and so on.
The research will involve children across Australia. Whether you live in Sydney, Brisbane, Melbourne, Canberra, Adelaide, Perth, Gold Coast, Sunshine Coast, Newcastle, or any other major city, the research will be conduct by our volunteers everywhere.
How will it work?
The Kaleidoscope program is based on the collective approach, which allows the patients, caregivers, as well as clinicians to work as a team. It will help the concerned group to identify the relevant problem and prioritise the questions for research. The focus group in this program is the children aged between 7 and 18 years having any chronic condition and the parents or caregivers of such children. The program will help them to understand their priorities and the reasons behind the choices they usually make.
This nationwide program will be a very successful project for the kids with chronic conditions and their parents because the clinicians, researchers and policymakers will also involve it. So, every possible aspect will be covered in this project. This is where other similar research and programs fail and couldn’t provide the help and guidance such kids require. .
Under this program, various seminars and workshops will be organised at various places. It will allow the patients, their parents/caregivers, oncologists, paediatricians, immunologists, as well as policymakers and scholars, to participate on a large scale. As a result, everyone will learn about the latest data, common problems that everyone faces in terms of the chronic condition and their solutions.