(Examples of each theme)
|“To begin with I got a high dose of a medication named Sotalol. I got so sick from taking them. I asked and got permission from the doctor to reduce to half the dose. But it is risky to do it he said, you need to know that, and it is YOUR risk. I will write that you can do it if you want and that you have pressured us to get permission. But I am happy because I got a completely different life when the dose was reduced. I had some ping-pong with the doctor and I needed to argue why I wanted this. There were no angry response or finger-wagging – except from the one doctor who said: "then you might as well refrain from taking anything because then it does not work". However, in my case this was not true because even a pain killer affects me heavily…" (Male, CRT, R16)
Experiencing side-effects means that patients take part in their treatment.
A need to argue, negotiate and take responsibility for adjustment of treatment is experienced
Involved in decision-making
Interacting within a contemporary healthcare system
|“The pacemaker has given me 10 years which I otherwise wouldn’t have had. I have one that can revive me an OCD [ICD] or what it is called... I can't remember. It has never been used, but they can see that on the damn telephone [round-the-clock monitoring] that we have lying beside the bed. I have always thought it is pretty expensive stuff just lying there, if it is not doing anything.” (Male, CRT, R13)
||Thoughts about the heart condition and understanding what a medical device does.
||Learning and adapting to a new life situation
||Aiming to continue a normal life in the context of the complexity of disease, treatment and self-management
|“I think that when you have an LVAD, it also interferes with the life of the close relatives. I do not know if it interferes more with my wife’s life than that of others because I need to have a reminder that I need to change the battery and all that. It may also affect their lives so what do they think about it? People always ask me what I think but they never ask her how she feels about it.” (Male, LVAD, R3)
||Thoughts about how the condition and treatment affect family members who no-one asks about
||Close relatives receive little attention and support from professionals
||Lack of support for close relatives
Int J Med Educ. 2022; 13:345-362; doi: 10.5116/ijme.6399.eef4