Update 12: The focus group meetings

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. 

Parkinson's dents your consciousness. Punctures in your biggest balloon, your most important toy. I'm afraid of the holes that get punctured.
It is my greatest fear that I can no longer keep things in order. Man suffers most from the suffering he fears. The unpredictable scares you.  
Well before the diagnosis, I noticed changes in my partner's behaviour. I thought, "Something is not right. Something very strange is going on".
Together we make new habits. That is not a problem. You always plan your life anyway. It is annoying when there are visitors who know the new rules, but not yet the habits.
In smaller groups I am still able to my words, but in large groups I am really afraid of losing the thread.
I remember everything I need to know, but not always when I need it. Then I just lose it. That's not the same as dementia. Forgetting the name of something is different from not being able to remember a word.   
My husband's main diversions is that he puts off solving problems until he has peace of mind.
I may be less organised, but some things don't really matter. I am retired anyway and it doesn't really matter anymore how I plan my day. Tomorrow is another day.
All in all, I am correcting a lot of things all the time. That is quite tiring.
It is one of my greatest fears to become cognitively impaired. Own control is very important to me. 
When people are chatting, I can't seem to get in between them. My parkinson's gets in the way.
Anything ad hoc is more difficult. A lot revolves around 'tension management'. The more tension, the worse the cognitive symptoms. 
It slips through your fingers. I feel more than before that I cannot live up to the expectations of others and cannot be so considerate.
Fellow sufferers confront you with yourself and that is not always pleasant, but it is necessary in order to cope with the disease. 
I apply so many small compensation strategies to so many small obstacles that it is hardly noticeable that I am doing it. Thinking back comes naturally
However, there is a big discrepancy between what you would like to say and what actually comes out
Actually, I think that the obstacles in thinking are the most determining factor for your relationship and not the physical symptoms. The obstacles in the way of thinking is an underexposed piece. 
All in all, there are not many people who really understand what Parkinson's is like. What doesn't help is that people often don't have the patience to listen to you.
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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:

  1. Group discussions are difficult
    I find it difficult to actively participate in conversations/discussions/meetings with more than 2 people.

  2. 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.

  3. 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.

  4. 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. 

The sequel

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. 

Finally

So much for this open peek into the COPIED kitchen. Would you like to know more? Don't hesitate to leave a comment or ask a question at Marina.Noordegraaf@radboudumc.nl or via the contact form.

And would you like to be kept up to date and have not yet done so? Then you can subscribe to the newsletter

Hope to see you again in the next update,  

Marina

Update 12: The focus group meetings

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