Impact of findings on practice
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Patients’ low awareness and limited use of community pharmacy as a self-care resource may be indicative of community pharmacists’ professional identity as ‘dispensers’ of medicines.
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The ‘patient voice’, often ‘unheard’ in community pharmacy research, needs to be recognised and incorporated into new and existing community pharmacy research, interventions and service design.
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Community pharmacy needs to demonstrate evidence of its value in the management and self-care support of LTCs, alongside effectively ‘marketing’ this value to patients.
Introduction
Aim
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To explore and describe patients’ perspectives of how they engage in self-care of LTCs and the resources they access for self-care support.
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To understand how patients view and use community pharmacy in the ongoing management of their LTCs for self-care support.
Ethics approval
Method
Results
Participants
Main findings
Engaging in self-care
Broad themes—aspects of self-care along LTC trajectory | Specific themes: engaging in a self-care activity | Exemplar quotes |
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Being diagnosed with a LTC | Seeking information after being diagnosed | I was in hospital for an asthma attack, a really bad asthma attack and it took ages to get over it and the doctors there said I had COPD but I didn’t know what it was then so I had a look myself what it was. (EP12 – 70 year old female with COPD and asthma) |
Finding meaning and adjusting lifestyle to LTC | Yeah, when I was first diagnosed I pretty much stopped drinking completely because I was kind of misinformed really but now I started drinking a lot more, and I just monitor it. (EP4 – 26 year old male with diabetes) | |
Managing physical health aspect of LTC | Taking/adhering to prescribed medications as a habit/ritual | Taking your medications, well, that just comes automatic now. Once you’ve been taking it for years its habit now, its habit and you know exactly what you’re doing. (SP4 – 77 year old male with asthma, CVD and arthritis) |
Changing/modifying lifestyle to cope with physical demands | Well, I mean in the past I used to be very active and played tennis and hockey, but I haven’t done that for a long time. My husband and I fished, that was our hobby, but nowadays my main exercise is the garden. (EP5 – 85 year old female with asthma, CVD and diabetes) | |
Symptom monitoring and management | I was in the supermarket and I was feeling horrible [hypoglycaemic]….I bought one of those little orange juices. I wouldn’t normally because it does shake your blood sugar up, but I drank some of that and the pure juice, of course it shoots your blood sugar up. (SP2 – 65 year old female with diabetes and CVD) | |
Managing emotional health aspect of LTC | Staying positive and hopeful | I mean we all worry as we get older you know, we are getting nearer to the end you know [laughs]….But its, um, you know, when you see people that are sick, it’s upsetting, you know, um, when you are hoping that those kind of things don’t happen to you, but you know, nobody knows. (EP1 – 70 year old male with CVD and gout) |
Seeking psychological counselling and support | Yes, when I was going through university, I did actually see a counsellor because one or two things became too heavy to deal with I did see a counsellor about the emotional side, but I must have only had about four sessions before I realised I can deal with this on my own… (EP6 – 26 year old male with a heart defect) | |
Managing stress | Well, sometimes it [blood sugar] goes high, like, stress makes it just go up a lot, but, because I was very paranoid of going to sleep with low blood sugar. So, yeah, I’d say that my good control came probably, like, about four years ago when I started to realise how important your health actually is and if you just pay a little bit of attention to it, then it can be fine. (EP2 – 26 year old female with diabetes) | |
Long-term maintenance of health and wellbeing | Making healthy lifestyle choices | I take the tablets and I try and take as much exercise as possible. I could do with losing more weight. I’ve stopped smoking a long, long time ago. Um, and am trying on having a reasonable diet, ye. (EP8 – 78 year old male with asthma and CVD) |
Self-monitoring | Well, I’ve a fair idea, you know your own body better than anybody else and I have a fair idea of when I feel out of sorts and something isn’t right and if there’s something bothering me I won’t wait too long before I go to the doctor if it’s worrying me. (SP9 – 73 year old female with CVD and COPD) | |
Healthcare utilisation | Yes. Recently, maybe two or three months ago, I was having hypos which meant I was in the supermarket and I was holding on to the shelf, because I thought I was going to [faint]. So I made an appointment to see the nurse and she said, you definitely have to see the doctor. As far as she was concerned everything was fine apart from that. So the doctor changed my tablets. (SP2 – 65 year old female with diabetes and CVD) |
Resources for self-care support
Most participants indicated that their prescribing healthcare professional (mainly GPs) provided them with medicines information and advice, although many also indicated that they read the patient information leaflets that came with the medicines. Despite obtaining their prescribed medicines from community pharmacy, they did not mention community pharmacy as a source of information on medicines use, except occasionally when they had been prescribed a new medicine. While participants affirmed that they were aware they could obtain medicines-related information from the pharmacy, they felt they did not have the need to do so since they already obtained this from GPs. Some participants admitted that they were unsure whether community pharmacy could deal with problems relating to the use of prescription medicines.I think I pieced together bits of information; I probably did look online a little bit and then GPs and nurses and just got combined information…the education I got wasn’t that fantastic, to be honest, …I mean I think the doctor at the hospital should have given me more information, I was just sort of given a bag of insulin pads and just told to go away… So I sort of had to just learn it on my own what worked and what didn’t work really….But also actually a lot of stuff that I found out was from another diabetic person, like, one of my friends that I met, like, he was very helpful and very informativeEP4 (26 year old male with diabetes)
With regards to making lifestyle changes, many participants indicated that they had been offered information and advice from healthcare professionals, primarily doctors and nurses in their GP practices/hospitals, about making lifestyle changes. However, most patients acknowledged that healthcare professionals provided lifestyle information and advice mostly passively rather than being more proactive in supporting behaviour change or referring them to other services which offered more proactive support. Again, most patients resorted to non-healthcare professional sources to help them make the lifestyle changes for their LTCs.I: And when you had the issue why did you go back to the doctor, did you think about going to the chemist rather than going to the doctor’s?R: No, I didn’t actually, no, because I didn’t think a chemist…well, I just didn’t think, that maybe a chemist couldn’t mess with my prescription, I would have to go to the doctor’s, wouldn’t I?EP12 (70 year old female with COPD, diabetes and CVD)
I wanted to lose weight anyway and that’s what I was doing before the asthma flared up last year [laugh] and then all of a sudden I couldn’t do anything. …The doctors were like, well, you know, swimming and stuff, do something gentle, but you don’t lose weight doing gentle exercise. I’ve got a personal trainer at the gym to help me.EP7 (24 year old female with asthma)
Community pharmacy as a resource for self-care support
Participants were probed further on their awareness and use of any services or interventions in the community pharmacy for self-care support of LTCs. While most participants indicated awareness of community pharmacy as a potential self-care resource, some routinely returned to their GP, and others simply did not consider the community pharmacist as an option. When probed about this, some participants indicated that it was because their GPs was their first point of call, while some others suggested that community pharmacy was not readily visible to them.I know the pharmacy offers a lot of services, in terms of, like, free checks for this, checks for that and checks for this, I’ve never felt the need to go in and see them, like, one of them is a free check for your diabetes risk, which I feel is a bit unnecessary and, yeah, I know they do offer advice on prescriptions, but I’ve never felt the urge to take advantage. So I know that they do offer a lot, but, for me, my first port of call would be my doctor. EP13 (45 year old female with diabetes and CVD)
This topic was explored further with participants asked to discuss any situations when they had chosen to visit the pharmacy for anything relating to their LTCs and the use of their medicines, instead of going to their GPs. Most participants struggled to think of a situation like that and went on to indicate that they always sought the help of their GP if they had any concerns about their medicines or their LTCs. They suggested that they would not readily consider seeking help from community pharmacy unless they had run out of all other options. When asked for the reason for this, most participants could not come up with a clear reason but indicated that it could be because they viewed community pharmacy as a medicines supplier.I don’t know, it’s just my perception, I’ve always just gone to the doctor’s for advice and never the pharmacist, and it’s just the way that it’s always been for me; I’ve never really thought to question it with them; I don’t really know why, to be honest.SP1 (62 year old female with diabetes and CVD)
Some participants further admitted that, while they were aware that community pharmacists were suitably qualified to help them, they felt community pharmacists did not appear visible enough for them to be approached for help. They again confirmed their perspective of community pharmacy being that of a medicines supplier, which dissuaded them from viewing and utilising community pharmacy for other purposes.I: And then with the diabetes what sort of situation would want you to go to the pharmacy and ask to see the pharmacist?R: I suppose I would go there if, say, there was a big waiting list at my doctor’s, I couldn’t easily get to my diabetic doctor; they [community pharmacy] would probably be like my third or fourth choice of someone to ask….. Yeah. I honestly, I don’t know why, but I never really thought of using them, I’d just seen them as the people who give me my medication.EP4 (26 year old male with diabetes)
I know they are qualified; it’s just that it’s not your immediate thought …But for some reason, I don’t know, the pharmacist um, you just forget that the pharmacist is actually there [laughs]. You know, because you go into the pharmacy and there are lots and lots of, mainly women, um, who are making up medications and so on, according to prescriptions, and you tend to forget that the pharmacy and not a dispenser, you know, yea.EP3 (57 year old female with diabetes, hypocholesteraemia and psoriasis)