Update 24: The self-help tool - part 1

22 October 2021

Update 24: The self-help tool - part 1

How do you do that, translate a first impression into a self-help tool for people with Parkinson's? This question has been on my mind for the past few weeks. A jumble of starting points and possibilities has led to various concepts. 

In this blog, I share the first concept that seems to meet the criteria we set.   

The criteria

The self-help tool should: 

  • Inform and raise awareness
  • enable people to identify the obstacles in their way of thinking that stand in their way the most
  • facilitating discussions on a relatively invisible subject
  • inspire people to try the detours of their peers

From data to concept self-help tool

One thing I know since I became a patient as well as a scientist:

For science, statistics are important. For a person with Parkinson's and his/her loved ones, it only matters whether something works for them.

Therefore, we will usually not mention percentages in the self-help tool. Because even if a diversion is valuable for only one person, it is still worth mentioning.

The current concept of the tool contains so-called favourite detours and detour maps, which show the detours mentioned by peers for a particular obstacle. The maps are part of a booklet with a general introduction to obstacles in thinking in Parkinson's disease. Also, frequently asked questions such as: "Is it parkinson's or is it part of age?" and "Will I get Parkinson's Disease Dementia?" are provided with answers in the tool.  

Sneak preview

A detour map can look like the one below. You see one with an obstacle and detours from the perspective of people with Parkinson's and one from the perspective of the person(s) closest to them. 

The next steps 

A concept is a concept: no more, no less. In the next steps of the study, we will ask for feedback on the draft. To start with, we will hold a focus group meeting with people with Parkinson's and significant others. Based on that, we will adjust the design. 

This modified design will then be sent digitally to the 262! participants who have indicated that they would like to test the tool. So keep an eye on your mailbox! : ) We will ask you to send us your design.
We will also send the 'printed version' to a small number of these participants. We will have a semi-structured interview with them about the use and usability of the draft tool. 

After all this feedback, we hope to be able to adapt the concept tool into a self-help tool that does what it is designed for. To make obstacles in thinking so visible that their invisibility is no longer an obstacle in itself. Obstacles in thinking are annoying enough as they are.

Until the next update! 

Marina

Update 24: The self-help tool - part 1

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