At the moment, I am drafting how to involve people living with dementia into my research (Part-time). A project about ‘Empowerment and Surveillance technologies for people with dementia’
In short, I am looking for people living with dementia who have broad experiences and interests in either research, media or surveillance technologies.
Not only does research suggest on many level how beneficial working together is, it is an incredible opportunity for me to test whether my current research means something to others.
However, I am a bit worried about a couple of things. Are people with dementia interested in becoming an advisor for this research? Will it be too much of a hassle to travel to London? Will the expectations between me and the advisors be the same?
Then comes the jargon; Surveillance Technologies. What is surveillance technology? I do not consider bracelets with medical information as a surveillance technology, while others might think differently.
As you see, I have lots of questions and worries. Guess that’s my role of being a PhD student and to overthink everything.
Ironic that I am hoping to get advice on how to involve advisors in my research.
PS: the following describes the role of the advisor more in detail.
The advisor will collaborate with other advisors and researchers throughout the study. The advisor group provides an opportunity for people living with dementia to contribute to and influence the research through:
- Bringing together the views and opinions of people with different experiences who use (or have some knowledge about) surveillance technologies.
- Highlight and advocating any issues that people living with dementia may identify which may relate to experiences of (not) using surveillance.
- Offering advice on the proposed research methods for conducting focus groups with people living with dementia from expertise by experiences.
- Sharing ideas and information while ensuring the confidentiality of the research and any other information shared by the researchers or other advisors.
- Commenting on any findings and outputs, and making suggestions about the dissemination of the research.
Other discussions points might include:
- The design of surveillance products such as video monitoring, trackers or GPS on mobile phones.
- Media messages about people living with dementia and surveillance products.
The research team will ensure the following:
- The research and questions will be explained and summarized in a clear, jargon-free manner.
- Information will be written in an accessible format.
- Advisors will be updated with progress of the research
- Advisors views and suggestions will be valued
We will discuss beforehand when the meetings will take place. The group will meet three times and each meeting will usually take two hours. Meetings are planned to take place in spring 2018 in London. Outside the meetings we hope that advisors will comment and advice on specific issues but this will not be onerous.
More information about this will be posted shortly