Characteristics of patients
Of the 39 patients invited to take part, nine declined and four did not reply, which left a convenience sample of 26 (66%). The mean age of 26 participants was 70 years (range 47–86 years), nine were female, and five were from ethnic minorities. Characteristics of participants and refusers were similar, including the proportion reporting they were self-monitoring at the end of the trial (Table 1). The mean age of all trial patients was 72 years, 57% were male and 43% female, as compared with the participants who took part in this qualitative study who had a mean age of 70 years and 65% were male and 35% female. Only four patients required assistance with activities of daily living. For eight participants, carers contributed to the interview.
Table 1 Characteristics of participants and refusers in the qualitative study compared with participants of the main trial of home blood pressure monitoring in stroke patients with hypertension
Of the 26 participants, 23 continued to use their blood pressure monitor after the 12 months of the trial, 12 on a weekly basis and 11 less frequently. Three had discontinued because the trial had finished, ortheywere no longer physically able to use the monitor, or did not have a carer to help. Of 23 participants who continued to self-monitor, eight had their blood pressure taken by carers.
Motivation to avoid a further stroke
All of the participants had suffered a stroke, and the majority expressed a strong desire to not have another one. Patients had therefore willingly learnt about blood pressure and continued to focus on achieving their blood pressure target which participants interpreted as a ‘good result’:
Interviewer: ‘Why are you continuing to monitor?’
Patient: ‘Because I don't want another one of these [stroke]! I don't want another. You know, once you've had an experience like this, I want to do everything to avoid another one, you know, so that's why. I want to live!’ (patient 17, 57-year-old male)
The positive experience of self-monitoring
Almost all patients expressed positive sentiments in relation to home monitoring. They felt an increased confidence and sense of control about their blood pressure and recurrent stroke prevention. Many expressed confidence that there was information about blood pressure targets, telephone support, and advice from the GP if readings were high. Some patients also commented that they liked the fact that someone was taking an interest in them and their blood pressure. Patients cited various advantages of self-monitoring: easy to use the monitor, trust in the ‘professional’ monitor provided, convenience, saving time, less need to visit their GP, positive effect on mood, reassurance, relief, and peace of mind:
‘I wouldn't know what the signs are of my blood pressure getting high. The monitor will tell me that and as it's a professional monitor, I have faith in it. It's not one ordinary little thing that perhaps you buy cheap on the side or anything like that; it's a professional monitor, so I have faith and I'm able to monitor it as professionally as professionals can.’ (patient 12, 67-year-old male)
All but four patients found having the monitor was reassuring and reduced their anxiety about having another stroke. Three patients said they felt anxious if readings were high, and the fourth was anxious about the possibility of another stroke because she had a monitor but no one to operate it. The fluctuating nature of blood pressure also made some carers anxious:
‘ That was actually quite hard, the fact it says in the trial if there's a high reading to take the blood pressure again later on in the day. But I spent the whole day worrying then, until I took the second reading … It didn't do a lot for my blood pressure [little laugh]!’ (carer 3)
One carer thought that home monitoring was a health task that should be carried out by healthcare professionals. Participants who relied on carers to do their blood pressure check also had mixed experiences of self-monitoring. A female housebound patient living alone was keen to use the monitor, but as she was severely disabled she was dependent on others to check her blood pressure as she could not use it herself. She felt let down by her GP as she was not offered home visits to check her blood pressure.
Knowledge, control, and empowerment
As a result of increased knowledge concerning blood pressure targets, some patients questioned why their blood pressure had not been managed more aggressively by their GP prior to their stroke and were, in hindsight, critical of their management:
‘I think GPs should be made more aware of this blood pressure thing and not say, “Well, it's a bit high, but you'll live, don't worry!” and off you go, because you think, fine, everything's safe. I think that's the criminal part of it …’ [patient stopped as tearful] (patient 17, 57-year-old male)
Empowerment is ‘a process through which people gain greater control over decisions and actions affecting their health'.10 Patients discussed using the blood pressure monitor as a tool to take control of their health and legitimise seeking specific help from professionals for blood pressure control at an earlier stage. This sense of empowerment and control is particularly apparent in the following quotation:
‘ But when you ‘re taking your blood pressure yourself, you have a hold on what's going on. I can't explain it very clearly; the words just don't seem to come at the moment, but you feel that you have some knowledge of what's going on. I think that's it. I know the doctors always like, say, “Have you any questions?” but the thing is, you can't really think of many questions when you ‘re there. It's only about 3 weeks later that something crops up! [little laugh] But mostly I do feel that most of the doctors do explain clearly what they're going to do or what they're expecting. But having a finger in the pie, helps [laughter]!’ (patient 20, 73-year-old female)
Another example of such empowerment is where several participants described how they used the monitorwhen they felt dizzy or ‘odd’, to exclude high blood pressure as a cause of their symptoms:
‘And it always comes in handy; you feel a little bit dodgy, you can always take it to see what your blood pressure is …’ (patient 2, 75-year-old male)
Some patients who had an elevated reading felt confident to defer seeing their GP until they had repeated the measurement. In one case, a woman whose early morning readings were significantly elevated chose not to record these readings, and she would repeat them later in the day when they were lower:
‘Well, I'd been told that if it got high, I was to contact the GPandgo and get it read over at the surgery. But I didn ‘t report any of the ones that are higher, because I thought, well, I'll take it again, I won't panic. I'll take it again tomorrow, which I did and then it had gone down again, so I didn't go.’ (patient 5, 61-year-old female)
Three patients felt that they could make autonomous decisions regarding their treatment, and as a result they ‘experimented’ with their medications:
‘If it [blood pressure] goes up, on many occasions, OK, I used to take extra tablet (…) I take two type of blood pressure: one is 10 mg and one [pause] er, the 10 mg twice a day, and 5 mg once a day. So when I see it's high up, I take straight away another 5 because I don't want to overdose myself (patient 6, 50-year-old male)
A different participant omitted an antihypertensive medicine for several weeks to prove to his GP that his blood pressure was perfectly well controlled without medication.
All participants said that they understood the importance of high blood pressure readings and the need to communicate this to a healthcare professional. However, some of them did not seek medical advice when readings were elevated. On questioning, 15 patients did see either their GP or practice nurse for a blood pressure review, whereas 11 patients said they had not as they did not want to ‘bother the doctor’ and/or when they repeated their blood pressure the reading was lower, which reassured them.
Patients' relationship with their GP
Overall, the increased empowerment had an impact on participants' relationship with their GP. A number of participants commented that their GPs reacted positively to them being involved in the trial. Some said that their GP would look at their home blood pressure readings and compare them to clinic values:
‘I could use it because the GP says to do a few readings before I go to see her next, so that she can compare her readings with mine. The last time I took three readings up to her … she was pleased to have that to compare it with … ’ (patient 5, 61-year-old female)
However, several patients remarked that their GPs were not as involved or'interested’ in their blood pressure as they would like.