2 February 2021
Phase 1 of data collection completed
Update 12: The focus group meetings
Last Tuesday 26 January and today - Tuesday 2 February 2021 - we completed phase 1 in the data collection for the COPIED study. On those days we organised four online focus group meetings of one and a half hours each. The meetings aimed tocollect the richest possible data on perceived barriers to thinking in Parkinson's disease and especially on the pathways around them. Atotal of 13 people with Parkinson's and 5 partners participated.
Frequently mentioned obstacles
Prior to the meetings, I had already interviewed each of the 18 participants by telephone for half an hour. This way, during the focus groups themselves, we could immediately zoom in on obstacles that were mentioned by several people.
The top 5 of mentioned obstacles in the group of 18 interviewees is shown below.
We also collected many beautiful quotes. Below you will find one from each participant. Eighteen quotes in total.
A first impression of detours
During the telephone interviews, the participants not only talked about the obstacles they encounter in their daily practice. They also gave examples of the detours they take to circumvent the obstacles. To be able to do what doesn't work automatically or to do it in a different way.
During the focus groups, I shared my first impressions of different strategies used by my 18 research participants. I explain them below. (If you click on the illustration, it will open in a new window)
After explaining the results of the 1:1 conversations, I handed over the baton to the moderator of the group. For groups 1 and 2, it was Jacqueline van Lieshout, and for groups 3 and 4, Nicoline Mulder, both good friends of mine and experienced facilitators of group processes. Because getting stuck in groups is no stranger to my Parkinson's, I used the diversions 'asking for help' to get around this.
The moderators zoomed in on one of the following cases with the participants, according to a prepared semi-structured questionnaire:
Group discussions are difficult
I find it difficult to actively participate in conversations/discussions/meetings with more than 2 people.
Life slows down
The speed is going out. Especially my pace of thinking is slowing down. I notice that my work is swallowing me up. For example, I still have to shorten two pairs of trousers. They are ready and waiting for me, but I don't get around to it. A week should last 10 days.
I often forget things
I often forget things. Appointments, shopping, where I left my bicycle key. I noticed, for example, that I forget my shopping even though it was on my shopping list.
My partner has starting problems
My partner takes less initiative. The other day I was babysitting the grandchildren for a whole day and he hadn't got off the sofa. The dishes were still untouched.
What followed were open conversations with much recognition and exchange of detours.
While listening, I drew up a new strategy to deal with obstacles in thinking: Zoom out.
Several people with parkinson's were very keen to understand exactly what happens when you get cognitively stuck. In a certain sense, thinking about obstacles can also be a diversion from getting stuck in them. Or - as one participant put it - to feel in control of the parkinsonism that is playing tricks on you.
First impressions are first impressions. No more, no less. Now that we have collected the data from the focus groups, we can go deeper. For me personally, the coming period will be all about data analysis. By myself and independently by my research assistant Jolanda van Omme.
After the analysis, we will check whether the 18 agree with the conclusions. This is followed by a translation into a survey that we would like to distribute as widely as possible in June 2021. This is phase 2 of the data collection shown in the illustration below.
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Hope to see you again in the next update,