In total, 33 interviews were completed: five with GPs and 28 with stroke survivors, 14 of whom had a caregiver present. The characteristics of the stroke survivors are presented in Appendix 2.
Two key themes were identified. The first theme was patient level barriers and this included the subthemes ability to self-care, how seriously people take stroke, and knowledge of stroke and medication. The second main theme was medication level barriers and this included subthemes beliefs about medication, taking secondary prevention medication, medication routines, changing medications, and regimen complexity and burden of treatment. Figure 1 shows the key themes and subthemes identified.
Patient level barriers
Ability to self-care
GPs admitted that being housebound was a significant barrier compromising patients care and affecting adherence:
‘If somebody is stuck at home, a total 5 hours they have got contact with somebody, the rest of the 365 days they are by themselves … their outcome is likely to be worse … their care can be low. If they’re depressed they won’t take their tablets.’
(GP05, male [M])
For many survivors, meanwhile, dependence on a caregiver for their knowledge and managing medication was important:
‘My wife sorts it out and that’s why I don’t know so much about it you see she [taps]. She puts them there, I take them and that’s it.’
(Patient [P] 04, M, 80 years)
How seriously people take stroke
Survivors and carers frequently trivialised stroke and the significance of symptoms, often due to a lack of knowledge and expectation around the condition:
‘I knew there was a problem but I thought perhaps it would go away. So you sort of erm bury your head in the sand.’
(P20, female [F], carer)
‘Within sort of half hour, hour at the most I felt I was ok again. The fact that we drove home the next day without seeking medical attention, it’s silly but I did it because I didn’t think anything else about it, it’s gone whatever it is.’
(P09, M, 68 years).
‘I wouldn’t take them because I still, to me, blood pressure and cholesterol tablets to me, I don’t see what they’re doing for me.’
(P24, M, 75 years).
In the absence of symptoms, the need for medication was also frequently underestimated, as GPs confirmed:
‘If they don’t see it or it didn’t leave any residual effect on them, then they tend to forget these things. Out of the sight, out of the mind.’
(GP02, F)
Knowledge of stroke and medication
Inadequate information on stroke prevention and recovery was frequently cited by patients and caregivers:
‘No, I don’t think we’ve got hardly any information. We haven’t ever really had a lot of information about it have we? You just sort of get on with it … I mean perhaps I haven’t ever asked enough but … I think you should be, told in advance.’
(P14, M, carer)
In addition, level of knowledge varied with several survivors admitting to being well-informed, while others felt confused about tablets and the reasons they needed to take them:
‘The importance of taking these exactly on time is trivial. I would probably survive for a week, if I didn’t take them. For a month I’d probably survive. It would not make any difference in 2 days.’
(P03, M, 86 years)
‘I don’t know why I take them but it tells you on each one you know what it’s for … I wouldn’t say I know what they’re for.’
(P16, F, 82 years)
GPs agreed survivors lacked knowledge of medications but that many took tablets just because the doctor told them to:
‘I would say 50% of patients know what medication they are taking but erm 50% of patients doesn’t know, they think the doctors have prescribed me this medication and I have to take it and that’s why they are taking it.’
(GP02, F)
Medication level barriers
Beliefs about medication
Patients’ beliefs about medication frequently dictated adherence to some drugs:
‘I think aspirins are good for you. That’s the only one I fancy. Well it thins the blood and I think, well by thinning the blood it flows better and that stops any clots so I do like to take it. I just don’t see why I’m taking other medication, I’m not fat or anything like that. I don’t get very high blood pressure and well cholesterol, what is cholesterol?’
(P24, M, 75 years)
‘I refused it and … I said well … it’s not because it’s rat poisoning. If you tell me I’ve got warfarin I must be ill and if I take aspirin I can’t be that ill.’
(P22, F, 71 years)
Some survivors questioned the need for any medication, expressing doubts despite experiencing a stroke:
‘I mean I’m taking them because they know better than I do, but at the same time at the back of my head I’m thinking I, I shouldn’t have to take those.’
(P10, M, 66 years)
Some participants focused on conditions with a greater impact on everyday health:
‘To me the most important thing for her is controlling her diabetes … because I don’t want her passing out having a diabetes wobbly.’
(P08, M, 87 years)
Taking secondary prevention medication
The importance of taking stroke medication was widely acknowledged, however, total adherence was a minor concern for most:
‘I’m sort of, a little bit annoyed that I’ve missed them but, no it doesn’t worry me. It would worry me if … I missed them for 3 or 4 days but a day, no.’
(P10, M, 66 years)
Although most patients considered themselves adherent, many reported forgetting to take their night medication:
‘Well now and again I forget the cholesterol because that’s the one at night and it’s the only one I take at night.’
(P15, M, 67 years)
For some survivors, not taking medication was a conscious decision and GPs acknowledged they needed to respect this:
‘We do have to respect their autonomy at the end of the day it’s their bodies and some of them say to me look, for goodness sake I’m 94, I don’t want to take these tablets, it makes me feel ill. I do have to respect that.’
(GP01, F)
Nevertheless, survivors and caregivers reported they were generally happy to follow the advice of their GP:
‘So if the doctor says take ten pills a day, I’ll, I’ll do it … he makes the decision and erm he, he’s the boss man as you might say, who knows what he’s up to.’
(P08, M, 87 years)
Patients also identified practical barriers including difficulties accessing medications and the size of tablets:
‘The big ones, I, do actually feel I have to swallow two or three times to get them down.’
(P10, M, 66 years)
‘Some of the, the pills are a hell of a trouble, you know the bubble wrap, flipping them out especially with my hands not as strong as they should be.’
(P08, M, 87 years)
Medication routines
Many patients admitted following a medication-taking routine, without which they would have difficulties with medication adherence:
‘I only remember to take the others be … if I take them out of the cupboard the night before and leave them on the top. If I didn’t take them out, I, I, would probably forget … because it isn’t the first thing that I think of … you know when I, when I first get up.’
(P10, M, 66 years)
The use of medication blister boxes was also beneficial and improved the experience of taking tablets:
‘ [Taking medication] that was a lot more hit and miss then … when you pop ‘em open if one flies on the floor I think, nah leave it. Sweep it up later on. It’s like a pleasure doing it now.’
(P06, M, 61 years)
Changing medications
Survivors of stroke described how medications were frequently changed, leading to disruption in pill administration and unwanted treatment side effects:
‘I did have a bad run because they changed the looks of the tablets oh god and I was taking four gout tablets a day and no diabetes ones and that put the old sugar up.’
(P13, M, 70 years)
‘They changed his medication to cheaper cholesterol and [he] was physically ill. He couldn’t cope on it at all so he went back and the doctor said “oh well it was just to try” and they put him back on the others.’
(P24, F, carer)
Regimen complexity and the burden of treatment
Survivors frequently expressed concerns around the burden of treatment with several describing how visiting the GP often resulted in additional medications:
‘I have to take 10 a day now altogether but I went up there [to the practice] to say can I get off some of these tablets, and I come back and I was on an extra one so I’ve not been up since.’
(P13, M, 70 years)
Others felt that the increased burden only contributed to their lack of understanding around stroke medications:
‘I’ve got yards of them. I don’t know half the names I’m just told when to take them. That’s one thing I’d like to do away with.’
(P11, M, 73 years)
GPs also acknowledged the burden of treatment and the contribution to patient’s negative attitudes towards taking medication:
‘Most of them are more unhappy about the number of tablets … from a patient’s perspective it’s usually it’s just physically a lot of tablets you have to swallow.’
(GP03)
Among the older patients, increased burden often led to a choice being made between which medications to take:
‘Seventy per cent of patients are fully compliant but some of them are not compliant with these medications especially the elderly group of the patients because they think they are taking too many medications and so … they keep missing out the medications.’
(GP02, F)
