Background
Methods
Researcher characteristics
Participants and recruitment
Sample
Interviewees relationship to oldest-old patient | ||
PIM (m/f) | NON-PIM (m/f) | |
Child | 16 (9/7) | 15 (5/10) |
son-in-law | 1 (1/0) | 0 |
Wife/husband | 3 (1/2) | 2 (1/1) |
Partner | 1 (0/1) | 0 |
Grandchild | 1 (0/1) | 2 (2/0) |
Friend | 0 | 2 (1/1) |
Other relatives | 1 (0/1) | 1 (1/0) |
Interviewees level of involvement in medication management | ||
PIM | NON-PIM | |
Low involvement/support | 12 | 16 |
Moderate involvement/support | 8 | 4 |
High involvement/support | 3 | 2 |
Interview guideline, data collection and transcription
I consult you today as a relative of XY. First of all, please tell me about the social environment you share. | |
Please tell me about the medical history and medical treatment of XY. | |
Please tell me everything you know about the medication XY is taking. | |
Please describe, who prescribes these medications and how? | |
Where does XY get his/her medication from? | |
Which role do you play concerning XY’s medication intake? | |
How do read up on XY’s medication and its positive and adverse effects? | |
What do you expect from XY’s medication? | |
Due to medication which positive effects does XY report? | |
Due to medication which adverse effects does XY report? | |
How does XY cope with adverse effects? | |
How satisfied is XY with his/her medical treatment und medication effects? | |
Please tell me about the effects of XY’s medication on his/her mood and activities of daily living. | |
Please tell me to what extent XY and you were involved in the medical treatment. | |
Are there any medications prescribed to XY that you consider problematic? | |
In summary – How do you rate XY medical treatment overall? | |
Do you want to add something? Are there any important aspects we didn’t talk about so far? |
Data analysis
Results
Main category | Subcategory |
---|---|
Informal caregivers’ knowledge on and role in managing patients’ medication | • Knowledge of medical history • Monitoring of self-care capacities • Knowledge of prescribers and medications/information seeking • Familial roles • Potential to influence |
Informal caregivers’ opinion on patients’ (potentially inappropriate) medication | • Increasing quality of life • Struggle to judge appropriateness • Satisfaction • Psychotropic drugs |
Dyadic and triadic communication | • Lamenting • Reservation to share information • Discussing assistance needs • Communication with GPs |
Informal caregivers’ knowledge of and role in managing patients’ medication
“[…] I simply cannot, due to her fitness, I cannot constantly check on her, right? I just can’t do it.” [LCON02]
“And the day will come, when I will have to deal with her health status. But for the time being, thank god, it is like that, that they both help themselves with the usual aids. ”[LPIM05]
“And I am also aware that something may happen very quickly, naah? But then I will go and get help immediately.” [HCON05]
“I don’t know the brand names. Altogether, she gets three medicines. The first one due to her weak heart, then diuretics and (…) oh well, the third one is one of those blood thinners. These are the three medicines but I don’t know their brand names.” [BPIM05]
“Well, actually my mother is healthy, she shows the normal signs of aging […] Anyway, she has resigned herself to the fact that she just simply does no longer participate in activities involving longer walking distances. But it is true, as far as we are able to understand it - it is painful for the afflicted – but surely a normal side effect of aging.” [LCON01]
“So, for example, I have never read the patient information leaflets. Well, all that I have just told you is the knowledge that I have acquired by myself in the meantime in the sense that I myself also have to take different medications now. And (...) nope, basically, they have been prescribed over a longer period of time and nothing has changed and that’s why, at the time, I just simply took over and sorted them, I have to admit, without much concern. Not what they actually are for or against but that they have been prescribed and so, from my point of view, my responsibility was more for sorting them into the little [pill]box and that my mother takes them regularly.” [HPIM04]
“I think, it can only be the GP because of the high blood pressure”. [BCON01]
“She says: “I have to go to the doctor, I have to have new medicines”. Then I say: “I’ll call or I am going there anyway”. And then, (…), naah, I’ll do that. Well, the ordering, I’m doing all that now. She herself doesn’t do it anymore.” [BCON03]
“She says, don’t worry. I am only old. I am not sick. […] This is something I value very much about my mother that she always reassures me this way.” [LPIM05]
“Because, if you say something or ask something, then she replies: ‘I can still do all this by myself and as long as I am able to do this, it is no one else’s business.’” [BPIM06]
“Says she herself, she does not want to any longer. Honestly, I am a little concerned, if she gets worse, I remember the doctor in X-city then who said “Your mother doesn’t want to any longer.”, then I cannot influence her, when you don’t raise your desire to live. And this is, to some extent, the situation she always finds herself in. Where you constantly have to lift her spirits, sometimes even have to admonish her a little: “You have to get over it, you have to do something, you mustn’t hanker after it, not pity yourself.” Yes.” [HCON10]
"[...] until recently, she really did everything on her own but she is no longer able to do it. She wanted to, for a long time she even did a little, it was difficult, to get that into her head. She didn’t want to accept it, I’ll just put it this way, that she was actually old now and that you have to accept help. It is difficult. For someone who actually lived totally independently, totally independently after my father’s death, to say now: “Naah, now you are ready for it.” [LPIM02]
Informal caregivers’ opinion about patients’ (potentially inappropriate) medication
“No, actually, would prefer none, but she has to, hasn’t she? […] ”[BCON07]
“Personally I think, as little (medication) as possible with the best or most optimal effect.[…] ”[LCON06]
“Oh well, but then again what are expectations, to me, that she is according to her age, well, (.) keeps her well-being (.) or her health but, well, she is [x years] now and (…) well, what am I to expect? I expect per se that she is pain-free or so. This is my main concern.” [HPIM06]
“And I have to say, well, it was the continuous intake of the medications and his attitude towards them that practically helped him to reach this age.” [LCON03]
“But this is positive; he no longer has any pain. (…) And he’d be stupid if he didn’t take a tablet now. (.) He’d shoot himself in the foot, then the pain returns. (.) Well, all pain medication is positive.” [HPIM07]
“[…] But I think this medication is a good one. I cannot judge this by myself, but my sister told me, that this, this medication is very, very good. […] ”[BCON05]
“[…] I have difficulties to assess those medications […]” [HCON10]
“[…] I‘m too much of a layperson to overview that, I would say, if you change the medication now, medication X, whether she would be in a better mood or so. I would be a bad judge for that, no not bad, I cannot judge it at all. […] ”[HCON06]
“Well, I see it this way: (.) that is now as layperson. I cannot assess the matter, I would say that it might somehow be a bit addictive / […], these are definitely opiates, they surely are somehow. But, I am not sure but it is like this: Without, she’d be poorly, right?” [BPIM02]
“[...] but you have to say, after fifty years it is no use anymore, to withdraw such an old woman from it now(.). You have to keep things in perspective, right? She isn’t sixty, she is [x years], right?” [HPIM02]
“[…] Well, I know that she takes [brand name of the benzodiazepine]. I didn’t know at all how far back it dated. She just happened to mention to me that her GP back then, when she was 40 years old or still had been under 40, […]”[HPIM02]
“I know that my mother takes one medication to calm her. […] But when she doesn’t take them, she feels very poorly. (.) And here I also have to say, well, the tablet is very important, (…) because she isn’t even calm under normal circumstances.” [HPIM03]
Dyadic and triadic communication
“But so / this explains why we had been so close. […] Well, I also became a [profession] because of my mother, because I wanted to do everything better. That she somehow never is helpless. (.) And she evidently has taken advantage of it for decades. She has also always suffered from constant and severe migraines / (.) Oh well, and I always drove to her. Day and night. Whether I worked or not, didn’t I?” [HPIM02]
“She has always bragged about her medical history.” [HCON10]
“And we also didn’t talk about these things in our family and, naturally, this continued when old age arrived and we noticed that she, well, I am going to put this carefully now, in quotation marks, “typical pensioner” practicing doctor shopping, […]” [LPIM05]
“But then she is always so and, most of all, so fearful, naah? She doesn’t always like to say something and then she does everything and /. For example, also regarding this incontinence, it was you who pointed it out to me, I had no idea, did I? Where allegedly, the (…) doctor doesn’t prescribe this and so forth.” [HPIM02]
“And apart from that I actually more or less (…) believe that it is important that she does as much as she is able to do on her own and I don’t, let me put it this way, continuously interfere in anything or take on different chores of hers where I believe that she is able to do all this by herself.” [HPIM08]
“And apart from that she still manages very well. She does everything on her own, unfortunately, she still drives her [brand name of the car] to go shopping and, yes / yes, also cares for [person X] who, however, really doesn’t want that at all, it is ‘n eternal conflict. But my mother regards it her mission, which she always (.) upholds, right? She / she says: ‚Nay, if I don’t have that, I won’t have anything to do.” [HPIM02]
“She never goes to the doctor by herself. I always accompany her and this has also been agreed by Dr. X that I know about everything […]. We also have her living will. Doctor X knows this also, a power of attorney with all the bells and whistles.” [BCON07].
“And I made this clear to her, too, spoke again with Doctor X, and, after she had been discharged from the hospital, refrained from her having to go and see a pain therapist, as this actually also, and we also did this again, Doctor X and I in cooperation and also got it right and also had made ‘n plan.” [HCON02]
“Well, I would not dare to comment on this and say: “Yes, this is actually not necessary.” Well, I am not a doctor, the doctor prescribed it and surely must have had a few thoughts on the matter. At least that’s what I am thinking and now to say we urgently need something else, I just cannot permit myself to do that.” [HPIM04]