Background
Over 4 million people in the Netherlands have brain disorders, including dementia, Parkinson's disease, stroke, multiple sclerosis and brain damage from accidents. These have a significant impact on the physical, mental, and social aspects of people’s lives. Moreover, the number of people with brain disorders is increasing; the RIVM predicts that the number of strokes and people with dementia will roughly double by 2040. Unfortunately, many brain disorders have no treatment yet, so people must learn to cope with the consequences.
The Dutch Brain Foundation (Hersenstichting) wants to improve the lives of people with brain disorders by reducing their experienced disease burden. To achieve this, they have asked the Athena Institute to help explore the needs of people with brain disorders, their relatives, and care professionals.
Objectives
This research aims to gain insight into the needs of people with brain disorders, by identifying which symptoms and consequences have the greatest negative impact on the daily lives of people with brain disorders and relating those symptoms and consequences to current and promising (social) innovations.
In doing so, we hope to find 'blank spots', or areas that require more attention in future research and innovation. This exploration hopes to provide the Dutch Brain Foundation with concrete ideas for initiating new projects.
Approach
For this needs exploration we will use the Dialogue Model: a participatory methodology that involves consulting relevant stakeholders to integrate and prioritise their needs and wishes. The outcome of this participatory method is, for example, a research agenda that reflects the needs of patients, relatives, care professionals, and researchers, and can guide future policy and innovation development. In other words, the Dialogue Model reflects the process-based principles that the Brain Foundation is keen on: (1) in-depth consultation of and dialogue between patients, relatives, care professionals and researchers, and (2) advice on future projects, based on a careful and validated overview of symptoms and consequences, set against current and promising (social) innovations.
The four-steps of activities of this needs exploration have a strong qualitative and participatory character. They are designed for and by the people concerned, and will take place between November 2022 to August 2023.
- Preparation
- Consultation
- Understanding symptoms and consequences of people with brain disorders, their relatives and care professionals, through focus group discussions and interviews
- Validating and prioritising identified symptoms and consequences, via an online survey
- Matching the identified symptoms and consequences with current and promising (social) innovations, though consultation of researchers, policy makers, and other innovators
- Dialogue and conclusion