Table 3

Comparison of themes identified through analysis of semistructured interviews and the online forum

Perceptions
Key themes identified (interviews)Interview quote*Interview participant
(Gender, age, participant ID, stroke type)
Forum quote†Forum participant‡
(Gender, age, participant ID)
Treatment necessity Treatment necessity
1. Knowledge of stroke and medications The importance of taking this exactly on time is trivial. I would probably survive for a week, if I didn’t take the. For a month I’d probably survive. It would not make any difference in two days.
Whenever I’ve got a new pill or anything I’d read the instructions only because they’ve made a mistake before now, like for instance they gave me one which I’’m allergic to… So I keep check of what I’m taking now.
Male, 86 years, N.03, ischaemic stroke
Male, 80 years
N.04,
TIA
A female survivor commented that it was better to take a few extra tablets from the GP than to experience a stroke. Tablets were provided to prevent a further stroke, and she stressed that they shouldn’t be stopped except on professional advice
A stroke survivor recalled being on 75 mg of aspirin as well as beta blockers, however, his nephew who was a consultant surgeon, suggested that had he been taking warfarin instead of the aspirin he may not have suffered a second stroke.
(Bad press influences attitudes to medicines)
A female survivor read about the hype around statins and stated she still didn’t have confidence in them. She had read a research paper on statins suggesting they only added an extra 9 months of life. Her mum had been taking statins for 14 years and this still didn’t prevent her arteries from clogging up.
(Bad press influences attitudes to medicines)
A survivor who had suffered 2 mini-strokes and been prescribed aspirin and cholesterol lowering statin but was refusing to take them because she had read in the press about bad side effects that they caused.
Female, age 51 years, age at stroke 51 years, N.17
Male, age 67 years, age at stroke 55 years, N.82
Female, age 56 years, age at stroke 56 years, N.66
Female, age unknown, age at stroke unknown, N.74
2. Doubts about medicines I think aspirins are good for you. That’s the one I fancy. Well it thins the blood and the blood it flows and that stops any clots so I do like to take it. I just don’t see why I’m taking the other medication. I’m not fat or anything like that. I don’t get very high blood pressure and well cholesterol, what is cholesterol?Male, 75 years, N.24, ischaemic strokeA survivor acknowledged statins were used to control cholesterol, but questioned whether high cholesterol was actually a problem. He believed strokes occurred frequently, regardless of cholesterol levels. He talked about the ‘Cholesterol Myth’ having researched the topic on the Internet. He said he was feeling confused about the value of statins and taking these when in reality they weren’t needed.Male, age 67 years, age at stroke 55 years, N.70
3. Realisation of the importance of medicines
Differing attitudes to medicines
At one time I wouldn’t take a pill, I wouldn’t even take an aspirin. Now I take it because I understand it keeps me alive. I just think it’s fate, that’s the way I look at it. If I stop taking medication I might as well lie down in the fast lane.
Well I don’t know what I’d be without taking them put it that way… because I’ve had a stroke and I’ve been fortunate. They keep me going, keep me on the straight and narrow.
I refused it and I said well it’s not because its rat poison. If you tell me I’ve got warfarin, I must be ill but if I take aspirin I can’t be that ill.
The only thing I like, I think aspirin’s good for you, that’s the only one I fancy. Well it thins the blood, and well thinning the blood makes it flow better and that stops any clots so I do like, like to take it.
I just take them because the hospital prescribed them. If the doctor prescribed them I probably wouldn’t bother. I’d probably say forget about it. He’s a consultant so he should know what he’s talking about.
Male, 67 years, N.12, ischaemic stroke
Male, 73 years,
N.11,
ischaemic stroke
Female, 71 years, N.22,
TIA
Male, 75 years
N.25,
ischaemic stroke
Male, 67 years,
N.15,
ischaemic stroke
A male survivor already suffered 2 strokes and said it was impossible to ever fully recover from the experience. He said after his first stroke he was prescribed tablets he didn’t take and he realizes this was a big mistake.
A female survivor felt it was better to take tablets from the GP than to experience another stroke. Tablets were provided to prevent another stroke and shouldn’t be stopped except on professional advice.
Another survivor remarked that, although being on pills was an inconvenience and she had stopped some medication, she continued to take aspirin and statin which she considered important.
A survivor had suffered 2 strokes in the previous year, but none since commencing warfarin. She felt reassured by taking warfarin and worried about coming off the medication.
A survivor described how he trusted his vascular surgeon who had changed his medication from warfarin to aspirin and statin. The survivor was happy to take aspirin and felt it would be good to continue as the surgeon also took it regularly, concluding it must be beneficial and would enable him to live longer.
A female survivor decided to reduce cholesterol using diet instead, because of side effects from medication. She felt that once the symptoms completely disappeared she wouldn’t take a statin again. She said she would start taking olive oil and follow a healthy diet to keep her cholesterol balanced naturally. She said she would continue aspirin as it didn’t seem to cause any side effects.
Male, age 67 years, age at stroke 55 years,N.82
Female, age 51 years, age at stroke 51 years, N.17
Female, age 52 years, age at stroke 52 years, N.76
Female, age 42 years, age at stroke 42 years, N.35
Male, age 35 years, age at stroke 34 years, N.71
Female, age 52 years, age at stroke 52 years, N.76
Treatment concerns Treatment concerns
4. How seriously people take medicines for secondary prevention of stroke 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.
Well she gave me blood pressure pills and that but I didn’t take them. I felt so, I didn’t bother, pity really. But never mind. I do now. I’m religious about that. I’ll have another stroke if I don’t. Didn’t want to put the family through that again.
Male, 75 years, N.24, ischaemic stroke
Male, 65 years,
N.02, ischaemic stroke
A female survivor who had read bad reports about statins reported being nervous about them. She didn’t want to jeopardise feeling good by taking medication that she wasn’t convinced she needed.
A survivor refused statins after her first stroke because of side effects. However, after suffering a second one she was now worried enough to take them.
Female, age 54 years, age at stroke 54 years, N.37
Survivor, female, age 68 years, age at stroke 67 years, N.14
5. Taking medications
Non-adherence to medicine
Trust in GP
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.
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.
I do exactly as the Dr tells me. He’s the Dr isn’t he. He should know better than what I do. I don’t push them anymore and say well you know I don’t like taking this.
Male, 67 years, N.15 ischaemic stroke
Male, 87 years,
N.8,
TIA
Male,
80 years
N.04,
TIA
A male survivor said he was on 2 tablets for blood pressure and that he continued to take one every day. But the other was a diuretic and having got fed up frequently running to the toilet, he decided to check his blood pressure every day and would skip the diuretic if it was fine.
A male survivor agreed with his doctor to stop taking a blood pressure tablet because of intolerable side effects, and his wife being a nurse made it easier. He felt strongly that doctors are there to advise not instruct.
(Collaborating with GP/patient)
A caregiver said that her husband ceased taking medications except aspirin, because of side effects. He made this decision, together with the GP and stressed the importance of doing this before stopping tablets.
Concern
(Prescribing concerns)
A caregiver (sister) suggested that GPs shouldn’t be paid for prescribing statins with the decision based on clinical judgement alone. The involvement of money could lead to medication being over prescribed for financial reasons.
Concern
(Prescribing concerns)
A survivor described taking 9 pills a day for stroke and its side effects and felt that the GP should understand which were necessary. Following another appointment her consultant was furious about the medications she had been prescribed.
Male, age unknown, age at stroke unknown, N.63
Male, age unknown, age at stroke unknown, N.63
Male, age 54 years, age at stroke 52 years, N.68
Gender and age unknown, age at stroke unknown, N.78
Female, age 37 years, age at stroke 36 years, N.41
Practicalities
Capability/resources Capability/resources
6. Ability to self-care 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.Male,
80 years,
N.04,
TIA
A caregiver stated that she was providing the stroke survivor with all of his medication due to his poor memory as a result of the stroke. She was now in complete control of his medication which she was happy about but it was difficult as he was a loved one and something she had no training for.
(Caregiver as an advocate for the stroke survivor)
A female caregiver described consistently trying to have her husband’s 40 mg statin dosage reduced by his GP. As a result of the high dosage he was chronically tired, so he stopped taking statins.
(Caregiver as an advocate for the stroke survivor)
A caregiver recommended being firm with GPs about being prescribed atorvastatin if simvastatin was not tolerated, as atorvastatin was a bit more expensive but recommended by NICE guidelines as an alternative.
Female, age 46 years, age at stroke 40 years, N.5
Male, age 54 years, age at stroke 52 years, N.68
Gender and age unknown, age at stroke unknown, N.18
7. Taking medication
Problems swallowing
Accessing packaged medicines
The big ones, I, do actually feel I have to swallow two or three times to get them down.
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.
I’d have to rely on the wife to…cause I can’t get them out the packet, just can’t get your hands in.
Male, 66 years, N.10,
TIA
Male,
87 years,
N.08,
TIA
Male,
65 years,
N.02,
ischaemic stroke
A male survivor described ‘swallow panic’, that is, fear of choking when trying to take Dipyridamol capsules. The user said it took around 3 months before he got over that.
A caregiver (son in law) mentioned that despite the use of a nomad tray, tablets were still being taken from the wrong day with several days tablets being taken in a single day. The stroke survivor often didn’t take the time to work out the days or to look at the calendar.
A survivor agreed with another user about the problem with the size of dipyridamole tablets, which were getting stuck in the pill box organizer.
Male, age unknown, age at stroke unknown, N.85
Male, age unknown, age at stroke unknown, N.40
Female, age 46 years, age at stroke 45 years, N.30
8. Medication routines I only remember to take the others if I take them out of the cupboard the night before and leave them on the top. If I didn’t I would probably forget… because it isn’t the first thing that I think of.
I usually take it around 5 o’clock which strangely enough is about the time that we feed the dog and normally speaking I take the medication then I get his dinner.
Male,
66 years,
N.10,
TIA
Male,
68 years,
N.09,
TIA
A female survivor described keeping the pill box in a specific location in the house, such as by the kettle, which then acted as a reminder to check the medication box.
A survivor suggested using a white board and having method in place helped. She remembered taking her own medications through repetition or linking tablet use to another everyday activity.
Female, age 60 years, age at stroke 60 years,
Female, age 54 years, age at stroke 46 years, N.19
9. Changing medications They changed his medication to cheaper cholesterol and Dean 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.
She gave me an extra pill and I had a horrific night. She made an apology and said I’m sorry it took so long to get it right, but the fine tuning takes a bit of doing.
Female, caregiver,
N.24, age unknown
Male,
80 years,
N.04,
TIA
A survivor described being on 80 mg of simvastatin which they were happy with but that upon leaving hospital the dose was halved by the consultant which had very bad consequences, resulting in daily angina turns for a week. In the end he had to go back to his GP and be put back on the 80 mg dose.
A male survivor said he was taking up to 7 different blood pressure tablets and that it was unusual to only need a few tablets. He recommended going back to the GP as necessary to keep changing tablets until the correct combination was found.
Female, age 53 years, age at stroke 50 years, N.60
Male, age 52 years, age at stroke 52 years, N.64
10. Regimen complexity and burden of treatment 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.
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.
Male, 70 years, N.13,
TIA
Male,
73 years,
N.11,
ischaemic stroke
A caregiver (son) was asking advice on how to encourage medication taking. His mother was originally taking multiple tablets up to 4 times a day but that now she was refusing to take them all and he was upset by this. Persuading her to continue taking the most important tablets had taken hours to do.
A caregiver (wife) described how her husband was adamant he was not prepared to take statins because he didn’t have the time to keep going back to the GP for checkups. The caregiver said she was feeling helpless and wasn’t sure what she could do about it.
(Burden of side effects on stroke survivor)
A survivor described similar side effects from 3 different statins despite varying the medication dosage. She said tests confirmed this and she concluded long term use could result in problems that had a negative effect on her quality of life.
Female, age 77 years, age at stroke 77 years, N.9
Male, age 55 years, age at stroke 55 years, N.24
Female, age 34 years, age at stroke 32 years, N.36
  • Quotes in italics refer to additional themes identified in the online forum only.

  • *Quote transcribed.

  • †Quote not transcribed – described to protect user confidentiality.

  • ‡Demographic characteristics relate to the stroke survivors only (either talking in first person or talked about by a caregiver).

  • GP, General Practitioner; TIA, Transient ischaemic attack.