In Ireland, about 480 people are diagnosed with primary brain tumours every year. Many more people develop secondary brain tumours arising from other cancers. Brain tumours can shorten life span and cause many problems including muscle weakness, speech difficulties, loss of mobility and independence, difficulties thinking and remembering, and epilepsy. These have profound effects on the lives of patients and their families. Research tells us that such problems can respond to rehabilitation, but there is a significant lack of rehabilitation services and information resources for people with brain tumours in Ireland. Our Public and Patient Involvement work with brain tumour survivors highlights how difficult it is to find and access rehabilitation services for their complex and lifelong needs.
Our active research examines the rehabilitation needs of people with brain tumours, so that we can to guide the development of effective rehabilitation services for them in Ireland. The Knowledge Exchange activities will focus on the delivering the messages from our research and from gathering information and evidence to a wide stakeholder group including patients, carers, public, healthcare professionals, policy makers and the research community. We will do this using a number of different processes, including through co-design of educational materials for (i) patients, carers and the public and (ii) healthcare professionals. Multiple means of translating knowledge will be used including videos, infographics, booklets, webinars and a Health Summary tool. We will create a wide network for knowledge exchange through a World Café event.
The planned activities will translate the research findings directly to improve information resources on rehabilitation services so that people with brain tumour get the care they need for the challenges they face.