The interviews revealed that the participants had several issues with the understanding and filling in the scale. Both items and scale possibilities had various interpretations by the participants and the participants seemed to apply a different recall period than described in the scale. Additionally, there seemed to be discrepancies between what the participants chose to answer on the actual scale item and their oral explanations.
Interpretations of the items
The participants skimmed the scale introduction without necessarily reading it thoroughly. It did not cause issues in relation to their ability to complete the scales, but the items were many times rephrased by the participants so that they omitted the first part of the item, which is placed in the introduction at the top of the scale. It was therefore evident that the participants in their effort to respond to the scale did not make a connection between medication-related problems and the items but saw the items as being about their life and health in general. This was in concordance with what participants reported after they had completed the scale and gave more insights into their living with medicines.
Several items caused problems for the participants. These problems were mainly interpretation problems, i.e. the participants understood the items in various ways, but there were also difficulties with the wording of some items.
Items 1, 2, and 3 showed the same problems for all participants. They used the words ‘time’ and ‘energy’ when talking about these three items where they did not necessarily distinguish between these words and were more concerned with how they did not accomplish as many activities as they wanted to due to ill health.
“[Item 1] It relates a lot to how much energy I have for my children and my wife and how my mood is ... if I have a short fuse.” (Man, 33 y.)
Items 4, 7, 9, and 13 revealed interpretation problems as the interviewees understood items in different ways. They defined ‘effort’, ‘concentrate’, ‘filled with energy’, and ‘interrupt’ in various ways. The varying interpretations of the items led to different responses to the items, even if the described situations were similar. For instance, the term ‘filled with energy’ was interpreted by the majority as having the energy to do everything or more than usual.
“[Filled with energy] That is when I am a little manic. Then I get a bucketload done. Often several things at once. Then I will super tidy up or wash a bucketload ... clean places that normally would not get cleaned. And then I am completely worn-out when the day is over.” (Woman, 52 y.)
Item 11 caused another interpretation problem. The item asks to the participant’s feelings of being a burden to others due to the use of medicines, but most participants answered whether or not they were an actual burden to others in their daily lives.
“I don’t think I am. Not that I know of, I have taken care of myself in all sorts of things. Also, I have my own car if it ... I don’t think there is anything to it.” (Woman, 83 y.)
In item 5 (Interfered with your social activities with family or friends) and 13 (Had to cancel scheduled appointments or meetings) the participants brought up new aspects of the items which had not been considered when formulating the items. In item 5 the transportation to social activities was considered a potential hindrance without reference to medicines, and in item 13 the participants had chosen not to plan any appointments if there was a chance of cancelling due to ill health.
“Really, I do not have difficulties attending social activities with family and friends when I have a lift. “ (Woman, 76 y.)
Item 6 was difficult to understand for the participants and there were multiple interpretations of ‘leisure activities’. The participants also used the two given examples provided and refrained from thinking of other leisure activities.
“Oh dear, no, I can still watch TV. I also participate in a little exercise and such in [the activity centre] ...” (Woman, 83 y.)
It was also revealed that the participants had difficulties to define ‘daily activities’ which was a frequently used term in the scale items. For some it was housekeeping, others thought it was time spent outside work or it was leisure activities.
“It is doing the dishes after eating, cooking ..”. (Man, 87 y.)
“Well, before I got this blood clot, I was ... went to physical exercises and did Nordic walking.” (Woman, 83 y.)
Throughout the interviews it was revealed that the participants were using other recall periods than the indicated one month. Conversely, during the interview some participants told long stories from their life stretching far back in time and used these stories to come up with an answer.
“Well, what is less time? I suppose it is when you are under pressure. I would say, when I had my husband home – he died of cancer – I could have used more time then. That was round the clock work.” (Woman, 83 y.)
Another approach was to compare their current life situation to before the disease emerged.
“I think ... I definitely perceive that my ‘filled with energy’ today is not much bigger than 50 % of ‘filled with energy’ five years ago. “ (Man, 33 y.)
Interpretations and use of scale possibilities
During the interviews it was revealed that the participants did not always answer items on paper equivalent to their oral descriptions. All participants beautified one or more answers either by understating or overstating.
Understating was done by participants to indicate that they were ‘all right’ even if they had challenges with their health. This was shown either by participants saying, ‘it is not that bad’ and then choosing a response on the scale that did not agree much with the verbal explanation.
“You have had to make an effort or had more difficult in accomplishing job assignments or daily activities? Often, yes, 4.” (Man, 87 y.):
Interviewer: “When do you have to make an effort?”
“When I finally get out of bed and get dressed and have taken a shower and so on ... taken care of myself. That demands a good deal of overcoming especially in my age.” (Man, 87 y.)
Participants sometimes overstated and chose a category that was higher than pertained to today’s feelings in order to take uncertainties into account. Some participants described not having cancelled any appointments in the past month, but still chose to tick off the response category seldom, and some described not being a burden to others, but still chose seldom instead of never.
“No, I don’t think so. At least nobody has said anything. But let’s say number two because it may well be the case sometimes, that ..”. (Man, 68 y.)
Three participants also mentioned that their answers should have some variation, indicating that they did not like always answering by ticking off the same response category.
“Yes. Then we will write rarely. To make some variation. “ (Woman, 74 y.)