Update 18: Towards a questionnaire

15 June 2021

From data to a questionnaire

Update 18: Towards a questionnaire

After analysing the data from the 18 one-on-one interviews and the four online focus groups - phase 1 of our research - the challenge followed to translate the results into a questionnaire. 

Now - in June 2021 - the list is nearing completion. With the questionnaire - phase 2 of 3 of our research - we want to: 

  • Validate whether the obstacles in thinking and the detours around them that we found during Phase 1 of the study are recognisable to a large group of people with Parkinson's and their loved ones; 
  • Expand the list of detours and "detour accelerators";
  • Retrieving the information that will allow us to translate the results into a practical tool that will really help people who experience obstacles in thinking.

Accountability

You can read the justification for the translation and the selected questions here (PDF, in Dutch only). Below, you will also find a number of accordions with the exact wording as in the PDF only without the network illustrations that are included in the PDF.  

Prior to the development of the questionnaire, 13 people with parkinson's disease and five people close to them were interviewed. Each one was interviewed personally, by telephone, for half an hour, according to a semi-structured questionnaire. Subsequently, four online focus groups were held with the same people. Three groups with 3-5 people with parkinson's and one group with five people close to them. The themes were based on common obstacles that emerged from the 1:1 conversations: group discussions are difficult, life slows down, I often forget things and my relative has starting problems.

The data from the focus group meetings were then transcribed and analysed in Atlas.Ti. This analysis was carried out by the principal investigator and - completely independently - by the research assistant Jolanda van Omme. A combination of inductive and deductive analysis was used. The deductive analysis is based on the PRPP model of information processing. Both researchers have written a reflection report in which they try to catch the red thread of phase 1. Two blogs have been written about this: https://copiedstudie.nl/2021/05/13/update-15-de-impact/ and https://copiedstudie.nl/2021/05/16/update-16-parkinson-en-de-tijdbuigers/ 

During the 1:1 interviews and the focus group meetings we collected information from people with Parkinson's and their loved ones about:

  • The activity in which obstacles to thinking occur
  • The nature of the obstacles
  • The effects of those obstacles
  • The underlying needs that are compromised when the obstacles appear
  • The (different) detours that people with parkinson's and their loved ones follow
  • The effect of these detours, also on the wider environment 
  • Aspects that make obstacles worse/larger and less bad/smaller
  • Aspectsthat make the diversions more difficult and easier

In order to answer the research questionsthe questionnaire has four sections:

What makes one person find detours easier than another? Where exactly is that energy and space and how can you play with it? In phase 1 of the study, we collected very rich data on this.

In Part I, we want to ask questions that tell us something about the scope for using a so-called diversions accelerator.

The questions we want to ask in Part I are:

How long have you (or your loved one) been diagnosed with Parkinson's disease?
We ask about the disease duration (read: how much experience do you have?) because disease progression affects the use of detours in two ways. On the one hand, the intrinsic possibilities decrease as the disease progresses, and on the other hand, someone has more experience with what does and does not work. Quotes that are part of this: "First you had the case that you forgot 'something' but you didn't know what. And now I don't even have that feeling any more" and "Underneath the obstacles in thinking lies a dent in your self-confidence. You lose things that you used to have. You also regularly lose the mnemonics that you make up around the obstacles.
We also ask how old someone is. Feedback from patients on a version of this questionnaire that did not include this question led to the request to add it anyway. Especially if you have young onset Parkinson's, being allowed to write down your age is also a kind of recognition, the feedback showed.

How much do you have on your plate? (read: How much room is there?)
People who are retired and have more free time have other options than people who are still working. People who have financial security (e.g. by being able to opt out or being retired), have other options than people who are self-employed, etc. Hence this question. Quotes that are part of this: "Because I am a breadwinner, I am of course dependent on the income that I earn as a self-employed person because there is no other source. I also realise more and more that I have to survive in my work and that this is at the expense of some of the social activities. And that's it for now" and " I don't have to do so much myself. It used to be that I had a job, two children, and extra voluntary work. And when I think how often we were away from home. Yes, we don't have to do all that anymore. So I give myself much more time to do things and yes, and I had the luxury of retiring".

How do you feel about life? (read: How do you usually deal with things?)
We ask about personal characteristics that, according to the data, influence the omwegrepertoire.

    • Are people strict or lenient towards themselves?
    • How well can they stand up for themselves?
    • Can they easily ask for help?
    • Are they more practical/pragmatic or theoretical?

Experienced burden and acceptance
The questions about the experienced burden and acceptance are asked because the degree of acceptance seems to influence the detours followed. We want to test this.

The diversions accelerators/strategy reinforcers that are more about 'who you are and what you do' will be further tested in Part III of the questionnaire.

Contents People with Parkinson's:
During the data analysis, the obstacles to thinking were categorised into the four main categories from the scientifically validated PRPP model of information processing: Perceiving, Remembering, Planning, Executing. Under these, we identified a total of 16 underlying categories. For each of these, one or more quotes were extracted from the data, covering each of the 13 people with parkinson's disease. This has led to 20 cases, in which we will ask whether people recognise this obstacle, whether it looks slightly different for them, how much trouble they are in dealing with the obstacle and whether they recognise the detours used by their peers and/or have any other additions. In this way we hope to validate whether the obstacles mentioned also occur in a larger group of people with Parkinson's disease. In addition, the activities from the cases vary in degree of complexity so that we can also include this aspect.

One obstacle that came up remarkably often was not being able to find words or not being able to make out what they were saying, with the striking detail being that people substitute words for other words, not only in spoken but also in written language. Sometimes they only realise this after feedback from their surroundings. What is compromised is that people then cannot put their input on the table as they would like and this can lead to a feeling of being excluded.

Other obstacles can be fitted into the PRPP model of information processing. People overlook information, forget the location of things and/or where they are, lose track of time, forget what has been said or done, have difficulty with planning (not seeing the big picture, not having an overview), do not string the steps of an activity together as quickly or as well as they should, cannot get going, are less able to switch gears, get stuck and find it more difficult to stop. 

In a table visualising the co-occurrence of activity and obstacle, it can be seen that the obstacles differ for each activity. For example:

  • When taking medication, only not remembering to take it is mentioned as an obstacle.
  • Starting the day can be difficult because you don't remember where something is, because you can't get going, because it takes time to connect. In this sense, starting up is an enormously complex activity with many steps.
  • In group meetings, 'not being able to get your words across' is the obstacle mentioned most often.
  • In traffic, it is an obstacle if you forget where you are and cannot switch properly from one part of the task (driving) to the environment (what is happening on the road).
  • When doing the administration, it is difficult not to see the big picture, with the obstacle of finding it difficult to accept an offer of help. If the pile is getting bigger and bigger, someone doesn't even start (trouble getting started). Obstacle domination is the order of the day in people with Parkinson's disease.
  • Physical symptoms of Parkinson's can reinforce obstacles to thinking and obstacles to thinking can provoke physical symptoms. An example: If you speak softly and find it difficult to come up with words, it is twice as difficult to get your contribution across. The stress this can cause does not help either the voice volume or the ability to find words.
  •  

Shape people with parkinson's disease:

In cases, you ask for a combination of activity, obstacle and diversions. As the tests of the questionnaire among patients showed that people found going through 20 cases too much, we have cut this part of the questionnaire up. You can first choose in which main category of obstacles you recognise yourself and rate the obstacles in that category. Then you can either move on to one of the other three main categories or you can choose to continue to part III of the questionnaire where we approach the theme from the diversions.

The question about the fairy tale that starts this part of the questionnaire is a form to understand obstacles in thinking. The metaphors come from the many comments participants have made about 'running out of sync with the time of the environment' and the reflection on this by the principal investigator (see https://copiedstudie .nl/2021/05/16/update-16-parkinson-en-de-tijdbuigers/) and the metaphor of Cinderella used by Heather Kennedy at WPC2021 (see https://copiedstudie .nl/2021/05/22/update-17-assepoester/).        

Content by relatives:
The obstacles mentioned by the relatives is a selection of the obstacles mentioned by people with Parkinson's disease themselves. The wording is different, but the obstacles can be divided into the same categories. For example, an obstacle that is not mentioned by people close to them is 'forgetting an appointment'. Only five relatives were interviewed, so it is still a challenge to complete the picture. In the discussion of the results during the focus groups we showed, for example, that 'not being able to stop' was not mentioned as an obstacle by the five family members we had interviewed. One participant with parkinson's immediately indicated that her relative was indeed bothered by the fact that she could not stop.

Form of neighbour:
In this part of the questionnaire, we choose to ask 13 concrete cases in succession. Splitting them up would make the categories too small. The further questioning comes in the part about the detours. 

Content People with Parkinson's:
In order to make the picture as complete as possible, we approach the subject not only from the obstacles, but also from the detours. These detours contain the freedom to act, and that is what we are looking for. The strategies and detours vary per activity and obstacle. All in all, people with Parkinson's give a lot of explanation to their environment about the obstacles in their thinking. Asking for help people for example with the administration, driving a car, cooking, paying in a restaurant, and in general with gaining insight into obstacles in thinking; And the obstacles that are linked to asking for help are for example 'not knowing where things are', 'not having the overview', 'not being able to stop' and letting people check mistakes that are made because of obstacles, etc.

The effects of the obstacles are essential. They affect: 

  • Self-image
    The obstacles lead to disorientation, confusion and alienation and undermine self-confidence, leading to feelings of shame, insecurity, powerlessness, frustration and sadness.
  • Efficiency and effectiveness
    The delay occurs at several levels: not only does the processing of information slow down, but because it is more difficult to take the right turn, many mistakes are made. Correcting these errors leads to 'double delay'. All in all, it becomes more difficult to get things done. There is a sense of 'not being able to keep up' and people have to swap the roles they previously had.
  • Feeling of belonging
    Not being able to make yourself clear can lead to coming across differently than you would like, not being understood. There may be a feeling of being excluded and difficulties in the relational sphere.

Underlying needs that are compromised are a loss of autonomy, control, equality, energy, connection, belonging, feeling understood, etc. 

The great thing is that, according to the data analysis, the effect of the strategies/diversions is predominantly positive. It is often mentioned that the diversions leads to self-confidence, a feeling of control, more energy, getting things done, less stress. A number of detours have varying degrees of success - such as approaching obstacles with humour - and some also have negative effects. For example, the strategy of "disguising" - pretending to understand what is being said - has the negative effect of not taking things on board. A quote about detours that don't work: "I have conversations with the physiotherapist and social workers but so far they haven't helped. I also find the solutions that are offered to circumvent my problems difficult. And that creates a new problem.

Form people with Parkinson's:
The choice of questions follows from the underlying needs that are stressed when an obstacle arises and zooms in on the diversions as a way of relieving the stress. The questions chosen for the questionnaire each respond to a different underlying need:

  • The question of slowing down or keeping up the pace plays into the balancing act between wanting to belong and feeling competent. The assumption is that there is a constant weighing up - unconsciously or otherwise - of what takes priority. Someone who slows down may still be able to do things well, but may lose touch with their surroundings. Those who move with the pace of the environment may overlook things.
  • The question about the art of resetting plays on the need for direction. How do people do this, start again when you get stuck?
  • The question: How do you usually deal with obstacles in the mind in company, is asked from the need for connection and feeling understood.
  • The question: about getting things done is asked from the need to feel competent.
  • The question about recharging and zooming out explores how people recharge and free up space and energy to avoid obstacles and take detours.
  • The question about asking for help zooms in on the need for autonomy and equality. (We already asked how difficult people find it to ask for help in Part I). This question also tests the image that obstacles occur and detours are sought in very ordinary activities.
  • The question of diversions drivers lists the remaining categories of diversions drivers from the data. This includes, for example, 'motivation'. Interesting is the example that a calamity/urgent not only helps to bypass physical freezing, but also seems to help to find a way around obstacles in thinking. An example in our data: Someone doesn't manage to do the administration, but they do when there is a break-in ...
  • Finally, there is an open question in which a person is asked for his/her favourite diversions. Since, according to the energy span of people with Parkinson's (and according to the research protocol), the questionnaire should last 30 minutes, we had to choose what to ask and what not to ask. The choice fell on the questions above.

Contents of next of kin:
The repertoire of strategies looks different for the next of kin. A large category of detours is 'moving with the flow, letting go, putting things into perspective'. It is what it is. They coordinate a great deal with and for the person closest to them, mention the importance of good timing, a time-out and giving space. They also make their own needs known, give feedback (acting as a mirror), call in the help of an external authority, offer the person close to them assistance in planning and simplifying things. The roles slowly reverse until the person next to them takes over an activity, checks it, corrects it. They also stand up for their neighbour in the environment. Taking care of oneself and creating space appears to be essential. People do this in different ways. A quote: "I stopped working. My husband's parkinsonism was one of the reasons for that. Now I have more energy to take care of what he leaves behind". And: "You also have to be kind to yourself. For example, you have to wait for a long time, and yes, you can be impatient for a while".

The obstacles to thinking are impactful for the relatives of someone with parkinson's disease. Especially before the diagnosis, the relatives started to doubt themselves. A quote: "Well before the diagnosis, I noticed changes in my partner's behaviour. I thought, 'Something is not right. Something very strange is going on' ". The perception domino is the order of the day. Irritating yourself by an obstacle and at the same time not being allowed to feel that feeling because the person with Parkinson's cannot do anything about it. A quote: "Of course that irritation is there at that moment, but I can put it aside quite easily because ... You are ashamed of it on the one hand, but on the other hand you know where it comes from. It's not your partner that bothers you, it's just the disease."

The obstacles lead to a lack of coordination to varying degrees, until the role reversal is complete and imbalance occurs. Loved ones experience anxiety, irritation, and generally a loss of energy. The obstacles also lead to a calmer pace of life. Not everyone finds this equally bad. What is noticeable is that the next of kin want to help ensure that their loved ones have their own place (autonomy, control). A quote: "A little more awareness of the invisible cognitive symptoms will hopefully lead to being able to function independently for longer. It is the everyday things, such as giving each other space at the cash register, that determine whether you still dare to show up outside. Whether you still dare to go to the clubhouse. Whether you can continue to live at home". 

The detours used by loved ones also have effects on the person with Parkinson's. A strategy such as 'taking over an activity' can be experienced as helping and/or as shifting equivalence.

Form of neighbour:

With the neighbour, too, we address detours that contribute to meeting the underlying needs:

  • The question: How do you get things done (together) focuses on detours that work for both.
  • The question: How do you usually deal with obstacles in the mind in company, is asked from the need to feel connected and understood, also by the wider environment.
  • The questions about taking over and timing are mainly about having to adapt oneself. If someone takes over or has to take over an activity (or has that as a preferred strategy), it can have an effect on the feeling of equality. We ask an open follow-up question about this.
  • The need for energy and space is reflected in questions about self-care.
  • As in the questionnaire for people with parkinson's disease, we ask about a favourite diversions and we ask about diversions accelerators.

Based on the research questions and the desire to create a tool that meets the needs of people with Parkinson's and their relatives, we ask what people need in the conclusion. We also ask if and how they want to stay informed and thank them for their time.

The test questionnaire was built in Typeform and provided with feedback by the COPIED core team (Edwin, Ingrid, Esther), three care providers, five people with parkinson's disease and a person close to them. This mainly led to changes in a number of formulations. 

I also noticed that it is difficult to separate the content from the form when filling in the questionnaire. Typeform has a number of inconsistencies in the navigation. If you then and don't know where you are and have to think about your own obstacles, then filling in such a questionnaire alone is a case of obstaclefomino ... 

screenshot of the test environment of the questionnaire n

Screenshot of the initial screen of the test questionnaire

Two caregivers - who completed the list for the next of kin - also found the list long. This is a difficult point. The amount of time it takes to complete the questionnaire increases as you recognise more obstacles. If you recognise an obstacle, follow-up questions follow. If you don't recognise them, you answer 'No' and you are through fairly quickly.

Currently, the ParkinsonNEXT team is working on the questionnaire in Alchemer Alchemer. This tool seems to be very user-friendly.

The questionnaire will be launched next week. I will of course be blogging about it!

To be continued, 

Marina

Update 18: Towards a questionnaire

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