The in-depth interviews yielded data on many topics; three of the major themes are reported on here:
Beliefs about foot ulceration and causes of amputation
Being diagnosed with diabetes meant there was a great amount of information to take in and, as a result of this, participants tended to push foot-care advice into the background:
‘I had been told at the surgery [that foot care was very important] but I hadn't sort of … you know how they go on about, they go on about your diet, they go on about your cholesterol, they go on and you think, “Oh it's just another thing”, you know.’ (Mrs Q, aged 62 years)
Often it was hearing about other peoples' foot problems that alerted participants to the possibility of complications:
‘Well, I suppose it's hearing about our neighbour having to have three toes off. Makes me a bit more conscious of the fact that I've got to look after them.’ (Mrs P, aged 72 years)
As highlighted by one responder, very few participants thought there was a relationship between glycaemic control and foot complications:
‘About her [sister with diabetes], she was not taking her medicine properly and so her sugar level wasn't controlled and one of her legs was amputated.’ (Mr H, aged 50 years)
Most of the participants expressed uncertainty about what a foot ulcer is and its cause:
‘Well, I'm not sure to be honest, I couldn't describe it, not really. No, I'm not entirely sure what they're talking about, how to describe it.’ (Mr O, aged 67 years)
‘I should think it would more or less, um, come up like a white spot and go to something like a boil. Something like that on the foot.’ (Mrs K, aged 78 years)
Only two out of the 18 participants were aware that a foot ulcer is a sore or wound on the foot of a person with diabetes:
Interviewer (I):‘… what is a foot ulcer?’
Participant (P):‘It's a break in the foot, in the skin, I suppose.’
I:‘Any break in the skin?’
P:‘Yeah.’ (Mr G, aged 78 years)
‘A sore is the same thing as an ulcer.’ (Mrs P, aged 72 years)
Despite uncertainty about what exactly foot ulcers are, the general perception was that they could be treated and cured. Similarly, the majority of participants did not expect difficulties with the healing of cuts, sores, or blisters on the feet:
I:‘In the information you have had about diabetes and foot health, has there been anything about foot ulcers?’
P:‘Yes, um obviously that if that happens then to consult the chiropodist straight away and you will be seen straight away and it will be sorted for you … I mean I wouldn't go round for a blister or something like that. I would try and treat that myself and then if it didn't clear up after a couple of days then I would go and seek help then for it.’ (Miss R, aged 44 years)
Only in the case of lack of proper care, for example poor foot hygiene, was it was thought likely that a minor injury or foot ulcer could lead to amputation:
‘Well, I'd say, one doesn't like to be critical … maybe he [acquaintance who had his toe amputated] is not as particular about sort of keeping himself clean, I don't know.’ (Mr I, aged 69 years)
‘And then, I mean, years ago diabetics had to have toes and feet and legs and things amputated, didn't they? Which apparently does still happen if people don't look after their feet.’ (Mrs S, aged 59 years)
There was great variation in participants' self-reported foot care, ranging from wiping feet with surgical spirit to not washing the feet on a daily basis. However, all participants perceived their own foot hygiene to be adequate, while sometimes taking the view that other people put less effort into it:
P:‘Well, the bottom line, really, has always been cleanliness and I think that's very important where feet are concerned and particularly diabetic feet as well. So yes, that rates as very important to me. And I think that if people made the stipulation that they spent 10 minutes every day doing their feet it would save an awful lot of problems.’
I:‘You think it would avoid a lot of foot problems?’
P:‘I think it would.’ (Mrs P, aged 72 years)
Many participants were aware that amputations are much more common in people with diabetes. Participants' responses during the interviews indicated that most held beliefs regarding lower-limb complications that appeared to differ from the medical evidence as described in the introduction and illustrated in Appendix 2. The main cause of amputation was believed to be peripheral vascular disease but without the involvement of skin damage and infection. The perception was that poor blood circulation alone would lead to the destruction of nerves and tissue in the feet. Foot symptoms, such as loss of sensation or burning sensations, which many had been told were due to ‘nerve damage’, were interpreted as the result of circulatory problems:
I:‘Why do you think it is that diabetes can affect the feet?’
P:‘The circulation goes, doesn't it? Well, I think it's the circulation. Because you do get like … I have got some, some of my toes, I haven't got much feeling in …’
I:‘So you think the fact that you've got slightly numb toes is because the circulation isn't quite getting into your toes?’
P:‘I think so.’
I:‘What could be the effect of having numb toes?’
P:‘Well, if the blood doesn't get there and you're not looking after them you can get like my cousin and you can get gangrene.’ (Mrs Q, aged 62 years)
I:‘What could be the risk to your feet from numbness?’
P:‘Well that to me is a sign of bad circulation. If you stop getting a decent flow then eventually something is going to wither and die. So it's sort of quite important to keep the circulation going if you can.’
I:‘So do you view that [numbness] as the first symptom of poor circulation?’
P:‘Yeah.’ (Mr F, aged 43 years)
The fact that most of the participants subscribed to the belief that poor blood supply alone was the root cause of foot symptoms often resulted in misinterpretation of explanations and feedback from health professionals. For example, in spite of being informed that tests were to assess sensation in the feet, participants nevertheless made the assumption that they were really to test the blood circulation:
I:‘Do they tell you what the [foot] tests are for?’
P:‘No, they just tell you that they're checking for, you know, to see how sensitive your feet are and that. But it's obvious they're just checking to see whether the circulation's getting down that far.’ (Mrs Q, aged 62 years)
Participants who had been diagnosed with nerve damage were particularly worried that the condition might get progressively worse and eventually necessitate amputation:
‘It worries me really, because you hear of people losing their legs and their feet. Well, I assume it starts from … well, I don't know whether it [numbness and discomfort] can go any worse and go up my leg. It don't go no further than my ankle, but I've never questioned the doctor. I've never said anything to him, but I don't know whether it does go up your leg. Is that how they lose their legs?’ (Mr D, aged 69 years)
Nerve damage and symptoms such as numbness or discomfort were interpreted as a consequence of reduced blood circulation. Participants believed the main cause of amputation was poor blood circulation leading to gangrene; foot injuries and ulcers, on the other hand, were only thought to lead to amputation in rare cases when some kind of neglect had occurred (for example, poor hygiene or delayed treatment). Participants' beliefs are illustrated in Appendix 3.
These beliefs differ from medical evidence, which points to a break in the skin, reduced healing potential due to vascular disease, and infection as the crucial factors in amputation. It would appear that because participants focused, sometimes exclusively, on blood circulation (rather than ulceration) as a cause of amputation, this adversely affected their foot-related behaviours and communication with health professionals.
Relationship between beliefs and foot-related behaviours
From a medical perspective, the most important aspects of foot care for people with diabetes are prevention of skin damage and prompt professional treatment of any break in the skin.11 However, the majority of participants in the current study expected a sore or cut on a foot to heal normally without medical treatment:
I:‘What do you think could happen if for instance you cut your toe on something sharp?’
P:‘Well, I would expect it to just heal up again I think. Obviously you'd need to sort of keep an eye on it, keep it checked, you know.’ (Mrs C, aged 73 years)
Instead, participants were concerned about preventing the blood supply to their feet from becoming restricted. The general belief was that physical manipulation, either by exercising or massaging the feet, could stimulate the blood flow:
I:‘Do you think your hands and fingers might be at risk [of poor blood supply]?’
P:‘Yeah, but you tend to, you've got more movement, you know what I mean, and your hands and your fingers are moving all the time, whereas your feet, they're really, I mean especially if you're inactive … You know, your toes and your feet are not actually moving that much unless you're walking and I mean with your hands, you're manipulating things all the time.’
I:‘So do you sometimes sit in the evenings and take your shoes off and move your toes?’
P:‘All the time.’
I:‘You do?’
P:‘Um, well when I say move my toes, I'll sit there, I'll sit in the corner, I'll lift my leg up and I'll just massage my foot, you know.’ (Mr F, aged 43 years)
‘I haven't never been told that, but I do sit here every night with no socks on and try and move my toes and that. I do that every night practically, but the toes are so stiff.’ (Mr D, aged 69 years)
Wearing open-toed sandals (with socks, in the winter) or buying footwear a size too large was also believed to give the toes space to move, and a common practice among participants:
‘I'd go for a size bigger, you know. That's what I tend to do with everything on my feet. I always tend to buy anything bigger. I take a 9 normally, but I buy 10 because it gives me that extra room.’ (Mr D, aged 69 years)
Furthermore, half the sample said that they would regularly walk around without footwear in an attempt to keep the joints flexible and the circulation going. Some participants were aware that this behaviour was at odds with practitioner advice:
I:‘If you're at home, what do you wear on your feet?’
P:‘Well, I'm terrible for going round in bare feet.’
I:‘Why do you say that's terrible?’
P:‘Well, they say “You've got to watch your feet, so don't go without in case you step on anything”, you know. And they're right, I suppose, really.’ (Mr O, aged 67 years)
Most of the participants appeared to engage in behaviours that could actually increase the risk of skin damage and ulceration, on the assumption that it would improve the blood circulation. Although the risk of minor foot injuries was recognised this was not considered of particular consequence, as an ‘ordinary’ lesion was not considered worse for someone with diabetes compared to someone without diabetes:
I:‘Is it a problem that you wear open-toe sandals? I'm thinking in terms of maybe accidentally stubbing your toes.’
P:‘Well, sometimes you're lucky that you don't [laughs]. Um, yeah there is a chance, but then that's a chance I suppose I take. Well, I suppose it's like anybody if they knocked their toes, you'd have to have it seen to, I'd have to go and have it seen to, wouldn't I, or see to it myself or something.’ (Mrs M, aged 62 years)
Many of the participants mentioned that they had numb areas on their feet. However, there was a general lack of awareness that this might affect sensation:
I:‘Do you sometimes put your hand inside your shoes to make sure there's nothing loose in there?’
P:‘No, I don't, that's the sort of thing I never think about, to be honest.’
I:‘No? Or that there's no grit inside them?’
P:‘Well, if there's grit, surely you can feel it, of course.’ (Mr O, aged 67 years)
Many participants had been advised to examine their feet regularly, but the purpose of this was not always clear:
‘It's a load of old tosh isn't it? What would I want to check them [feet] every morning for?’ (Mr J, aged 70 years)
Communication with health professionals
Most participants reported some difficulty communicating with health professionals about foot health and were often left feeling confused:
‘They did explain it [result of foot tests] to me but I couldn't … he said “You see, that's like that” and I was like “Yeah …” and I thought “No I don't really, but never mind [laughs], you're the expert”.’ (Mrs S, aged 59 years)
Nevertheless, even though explanations were often difficult to comprehend, many participants appeared to have complete trust in health professionals and tried to adhere to advice on the assumption that there must be a good reason for it. They tended to doubt their own competence and sought reassurance from health professionals. Regular check-ups with a podiatrist provided such reassurance, but only half of the sample had access to this service:
‘I do feel I'm in good hands, they're very good indeed. Although I check as much as I can, and I'm quite thorough really, it is good to have somebody else, who knows what they're doing, having a look at a regular basis. I'm just grateful for what they do, because hopefully it's all for my benefit.’ (Mr I, aged 69 years)
Although they trusted health professionals, participants sometimes decided to ignore advice, but were then left feeling that they were being ‘naughty’:
‘They told me I mustn't walk round without shoes on and I'm very naughty, because I do.’ (Mrs S, aged 59 years)
‘They said you should really always wear shoes or slippers. Naughty girl that I don't.’ (Mrs P, aged 72 years)
Other participants were somewhat disaffected with health professionals. Some felt they were not given adequate explanations for foot problems or that health professionals were not sufficiently interested in foot health:
I:‘Weren't you told anything about what caused it [pain in feet] ?’
P:‘No, that's all he said “nerve endings”. I wish I knew why it was, I don't. The doctor don't sound very interested so … it's square one again, isn't it?’ (Mr J, aged 70 years)
‘I would say, actually, if I'm honest with you, the feet side of things is something that always gets ignored. If your doctor and your nurse don't prioritise it, why should you?’ (Mr F, aged 43 years)
Participants mentioned that foot checks were sometimes not carried out at the annual diabetes review:
‘They [nurses] do all the checks every time, yeah. Sometimes they forget to do your feet.’ (Mr G, aged 78 years)
Additionally, they commented that health professionals sometimes did not believe they had the symptoms they were reporting:
‘She [GP] said “Oh, it's your arthritis”. I said “It's not, please”. “Oh yes, you've had it for years, there's nothing you can do, so it's probably that”. And I said “It's a different pain, it's different, I know it's different”. Which it was, it turned out, when I seen somebody else, that it was [neuropathy] .’ (Mrs M, aged 62 years)
In a few cases, communication seemed very poor:
‘Every time I see [the GP] he's got his computer on down there and he don't look at eyes, he's looking at the computer all the time. It's just like talking to the wall. So I don't bother any more.’ (Mr J, aged 70 years)
It was clear that participants who reported difficulties communicating with health professionals were more likely to ignore foot-care advice and, instead, rely on what they considered to be common sense.
