Abstract: The management of a diabetic foot ulcer requires the patient to change his or her behavior. Despite little evidence, it is suggested that psychological factors are influential in the healing of diabetic foot ulcers. It is, therefore, important to determine how patients with diabetic foot ulcers and the podiatrists who treat them perceive and understand foot ulceration, as this may influence patients’ behaviors. To address this gap in knowledge, 2 qualitative studies were undertaken. In the first study, interviews were conducted with 13 patients with diabetic foot ulcers recruited from outpatient podiatry clinics. A second study was conducted with podiatrists working in the outpatient clinics from which the patients were recruited. In both studies, the interview schedules consisted of a series of open-ended questions concerned with examining beliefs about ulcers, causes and treatment of ulcers, and adherence to treatment recommendations. All interviews were tape recorded, transcribed, and coded for emerging themes using the “constant comparison” approach to qualitative data analysis. The experience of having ulcers had a considerable impact on patients’ lifestyles. Both ulcer and treatment affected the patient’s mobility, independence, and social life. These experiences often lead to anger, fear, depression, helplessness, boredom, and loss of self-esteem. Podiatrists also perceived that foot ulcers had a negative impact on patients’ lives and their emotional well-being and were aware of factors that may influence adherence to treatment. It is suggested that understanding and addressing the psychosocial aspects of foot ulceration may lead to better adherence and may improve clinical outcomes.

Disclosure: This work was funded by the MRC Health Services Research Collaboration.

F

oot ulceration is a common and costly complication of diabetes. Approximately 15% of the more than 150 million people with diabetes worldwide will develop diabetic foot ulceration at some stage in their illness.¹ Through mechanisms that are not well understood, damage to the vascular and nervous systems occurs in diabetes, leading to complications. Neuropathy affecting the nerves of the feet can lead to loss of sensation, making the feet more susceptible to damage. Coupled with poor blood supply, this can result in infection and ulceration, a condition known as the diabetic foot.
       Foot ulcers may take weeks or months to heal, and nonhealing ulcers may be followed by infection, gangrene, and amputation of the affected limb. Indeed, these ulcers constitute the most common reason for hospitalization of people with diabetes mellitus.² Studies in the United States estimate that 1 in 5 patients who develop diabetic foot ulcers will eventually have to undergo amputation.³ The economic consequences are also considerable.⁴ Diabetic foot ulcers cost the United Kingdom health service an estimated £220 million per year.⁵ They are often characterized by poor healing. Research indicates that 67% of diabetic foot ulcers remain unhealed after 20 weeks of care.⁶ Poor healing rates increase the burden on patients in terms of morbidity, distress, and impaired physical functioning and on the health service in terms of the costs of long-term medical and nursing care. However, the diabetic foot has been a neglected area of research, and studies of the psychological consequences of foot ulceration are scarce.⁷ Identifying ways to improve healing rates of diabetic foot ulcers could reduce the burden on patients and on the health service.
       A recent study⁸ showed that patients with current ulcers reported poorer health-related quality of life (QoL) than those whose ulcers had healed primarily without amputation. The impact of lower-extremity ulcers on QoL in people with diabetes and their caregivers has also been investigated.⁹ Patients and caregivers experienced negative effects in 4 domains: social, psychological, physical, and economic. These negative effects were predominantly results of reduced mobility and consequent changes in lifestyle. This resulted in reduced social activities, increased family tensions, lost time from work, and a negative impact on general health in both groups. Psychological consequences included frustration, anger, guilt, and anxiety about future ulcers and possible amputations.⁹ Similarly, people with diabetic foot ulceration may have poorer psychosocial adjustment to illness, higher levels of depression, and more dissatisfaction with their personal lives.¹⁰
       Research has confirmed that certain foot care behaviors (eg, podiatry clinic attendance, foot lubrication, adherence to prescribed footwear) predict foot lesions, and modification of these factors leads to a reduction in foot ulceration.^11,12 Thus, behavioral factors are critical in the successful management of foot ulcers. However, it is clear from clinical experience and the research literature that patients do not routinely comply with diabetes and foot care recommendations.^13–17 The reasons for nonadherence are less evident. Psychosocial factors, such as social support, lifestyle, emotional well-being, and illness beliefs, have been found to influence the likelihood of adherence to treatment regimens across many conditions. There is some evidence that such factors may also be important in foot ulceration. For example, Vileikyte and colleagues¹⁸ reported that patients’ beliefs about their ulcers and treatment may guide their adherence to other behaviors, including preventive foot care. Similarly, it has been shown that such beliefs may also affect help-seeking behavior.¹⁹
       The clinical management of diabetic foot ulcers involves eradicating infection and maintaining glycemic control. For patients, the management of their ulcers involves a range of demanding self-care behaviors. Some, such as diet, exercise, monitoring blood sugar, and taking medications, are related to their diabetes, while others, such as prolonged periods of foot or leg elevation and wearing specialized footwear and/or dressings, are specific to their foot ulcers.
       Adherence, also known as compliance, is defined as the extent to which a person’s behavior coincides with medical or health advice.²⁰ Adherence to the diabetic regime has proved difficult to measure,¹⁶ in part because many measures are based on self-reports, which are often unreliable.²¹ Another factor is the complexity of the prescribed regimen, which involves many behaviors that vary across situations. Despite the problems with measurement, findings unequivocally suggest that patients do not adhere well to the self-care regimens for diabetes.²¹
In order to elucidate the extent that psychological and behavioral aspects influence the healing of diabetic foot ulcers, it is important to determine how patients with diabetic foot ulcers and the podiatrists who treat them perceive foot ulceration. Therefore, the focus of the present qualitative work was to explore the experience of foot ulceration and treatment from the perspective of both patients and podiatrists.

Methods

       Ethical issues. Ethical approval for the interviews described in this article was granted by the United Bristol Healthcare Trust Research Ethics Committee (Bristol, United Kingdom).
       Goals and methods. The goal of the article is to assemble the results of interviews undertaken with patients and podiatrists by 2 separate researchers (DT and AF) to examine the experience of foot ulceration and treatment from both perspectives.
       Qualitative methods. The aforementioned issues regarding patient and podiatrist perspectives were explored using open-ended questions and further probing of participants’ responses. Interviews were predominantly exploratory, enabling the exploration of other issues of importance to interviewees. Interviews lasted between 45 and 95 minutes, were recorded on audiotape, and transcribed verbatim.
       Recruitment of patients. Patients with diabetic foot ulcers were recruited from outpatient podiatry clinics, which they attended as part of their standard foot treatment. Fourteen patients agreed to be contacted by the researcher. Of these, 13 agreed to be interviewed; 9 were male; 4 were female; and their ages ranged from 45 to 66 (mean 57.3) years. Patients had been diagnosed with diabetes for 3 to 47 years (mean 19.7 years) and had experienced foot ulceration for 6 months to 16 years (mean 6.9 years). Five had type 1 diabetes, and 8 had type 2 diabetes. One patient controlled her diabetes with diet only, 4 with oral agents, and 8 with insulin injections.
       Recruitment of podiatrists. Twelve podiatrists (10 female, 2 male) took part in the study. The participating podiatrists were regular practitioners at 1 of 3 study centers located in Bristol, United Kingdom—the Bristol Royal Infirmary (BRI), Frenchay Hospital, and Southmead Hospital.
       Analysis of interviews. Data analysis was conducted using a “constant comparison” approach, a method that is common to qualitative data analysis methodologies, such as grounded theory and interpretative phenomenological analysis (IPA). Interview transcripts were analyzed for emerging themes by an investigator and coded. The interview codes were categorized into themes. Descriptive reports of the interviews were compiled to allow for preliminary analysis as data were gathered and to allow emerging themes to be tested in subsequent interviews. Using constant comparison methods, each theme was examined in detail. The next stage of analysis involved collation, conceptualization, and interpretation of the emerging themes.

Results

       Emerging themes from the interviews with patients and podiatrists from the independent studies are presented in parallel and illustrated with quotes from the transcribed text.
       Emotional impact on patients. When patients were asked how they felt about having foot ulcers, they expressed a range of emotions.
       Depression. Depressed mood was most common after being diagnosed with a foot ulcer and as problems persisted or recurred. While the majority of patients had felt upset about their foot ulcers at some time, several patients appeared to have suffered an episode of depression. Common reasons for depression were the slow healing process, the recurrence of ulceration, taking medication, loss of independence, and lifestyle limitations.
       Patient: “I do get a little bit depressed.”
Interviewer: “What kind of things make you feel fed up?”
Patient: “Well, because it’s not healing up very quickly…the hospital has said, ‘That isn’t as bad as it looks.’ That cheered me up at bit more…and if it’s not looking so good I shall sink down a little bit.”
Interviewer: “It sounds like your foot really affects your mood then?”
Patient: “Yeah. Yeah. Your foot controls your every day workings…well, controls your life, really, your feet, doesn’t it?” (male, aged 66, foot ulcer[s] for 3 years)
       Threat of amputation was a significant cause of depressed mood in several patients.
       “[The surgeon] said, ‘You are inevitably going to lose that foot.’ All sorts of things go through your mind. I was really fed up then. I didn’t think it was ever going to get better. That really, really upset me because I thought however am I going to cope with life with a foot removed?” (female patient, aged 62, foot ulcer[s] for 3 years)
       Several patients felt that their foot ulcers had reduced their self-esteem. Reasons for this included being unable to work and provide for family and the loss of independence associated with restricted mobility. However, the most significant cause of depressed mood was change in appearance and body image.
       Patient: “Oh, I don’t go out. I haven’t been out socializing for a long time. I don’t feel right dressing up…with [the aircast] on. I used to get up and enjoy myself but you can’t; that’s it.”
Interviewer: “Do you think it affects your self-esteem?”
Patient: “Oh, I think so.”
Interviewer: “In what way?”
Patient: “I don’t know…you feel down all the time I think…gets you a bit depressed I suppose at times, and I just don’t want to bother.” (female, aged 60, foot ulcer[s] for 1 year)
       Anxiety and fear. Threat of amputation was the most frequent cause of anxiety, related to a fear of losing control of the ulcer. This fear was greatest after consultation with health professionals, speaking to other people with diabetic foot ulcers, and seeing amputees. Seeing the ulcer and foot deteriorate (eg, become gangrenous) was also distressing and frightening. Other common causes of anxiety and panic were having to wear a nonremovable cast and being unable to work and provide for family. Many patients had fears for their future health.
       “Are my feet going to go black? That’s one of my worries. Are my toes going to go black, and I’ll have to have them off?” (female patient, aged 58, foot ulcer[s] for 16 years)
       One patient described feeling “terrified” when she realized she would need to have her toes amputated. Her fear was so great at times that she would avoid asking questions about what the operation would entail. She described this as “fear of the unknown.” However, fear had a positive effect in some, as it motivated them to try harder to manage their diabetes.
       Patient: “[At the hospital there was] a man in a wheelchair. And he’d lost from his knees down. And [my son] said to me and ‘that’s how you’ll end up with your diabetes.’ And I think it registered in my mind. If you don’t take care, you know that fear’s there in the background all the time.”
Interviewer: “And does that make you try harder to manage your diabetes?”
Patient: “Oh, without a shadow of a doubt. Yeah.” (male, aged 65, foot ulcer[s] for 8 years)
       Boredom and frustration. Most patients acknowledged that they had been advised to elevate and rest their ulcerated feet. This inevitably restricted movement and activities. While this advice was welcomed at first, patients soon found that they became bored and frustrated as they sat at home. Common causes of frustration were the sudden deterioration of the ulcer despite one’s efforts to prevent this, needing care from professionals and practical help from friends and family, and having problems with mobility.
       Podiatrists’ perceptions of emotional impact on patients. In common with patients, podiatrists also noted the perceived impact of ulceration on their patients, acknowledging the presence of anger, depression, anxiety, and frustration. In particular, anger and frustration were perceived to be rooted in the disruption to their lives caused by frequent hospital visits, advice given by healthcare professionals, and slow progress. Even patients who were perceived to be “coping okay” or “taking it in their stride” were thought to be frustrated.
       “Some patients do get very frustrated and very upset about it, because it is taking over their lives and affecting it in so many ways.” (female podiatrist)
       Patients were thought to be anxious about the fate of their feet, and it was believed that the realization of the seriousness of their conditions would be frightening. A major incident, such as amputation, was perceived as having a very negative effect, making a patient depressed and reducing his or her QoL. Podiatrists also acknowledged, however, that they may not always be aware of the patient’s emotional response, as the patient may present a positive exterior.
       “They can come in and be sweetness and light, and they can actually really be thinking, ‘Oh, I’m just sick to death,’ you know, under the surface.” (female podiatrist)
       Patients’ reactions to clinics. Podiatrists perceived a variety of patient reactions to clinic visits. Patients who realized the seriousness of their problems and the level of care provided by the multidisciplinary team at the clinic were perceived as feeling safe and comforted. The clinic was perceived to provide these patients with a sense of security. It was thought that a patient’s realization of the seriousness of his or her condition could be brought about by exposure to other patients and that this realization might be frightening. It was also speculated that the clinic could be a depressing place because of the serious condition of the patients. These negative reactions to the clinic were perceived to be predominantly in new patients and less common in long-term patients.
       “It’s quite a depressing clinic to come to though. I mean…there’s a lot of people sitting outside our door with major problems, so to sit amongst that group, when perhaps your problems don’t seem that major, must be quite terrifying. Especially for the people with amputations and rather smelly ulcers and things like that. And you sit amongst them and suddenly [realize] you’re one of this group. I think that must be quite terrifying.” (female podiatrist)
       However, it was commonly believed that for a small core of patients, attending the clinic regularly was an important social experience. These patients, who were often perceived to be lonely, appeared to enjoy attending, as the interaction with other patients in the waiting area is a source of social support. It was perceived that this might have developed a dependence on the clinic and a sense of institutionalization among some patients.
       “Its like a little family downstairs. All the patients know each other…in some respects as well, I think, there’s a social side to it as well, the clinic…or a support side.” (male podiatrist)
       It was suggested that people who were more independent, younger, or working were unlikely to become dependent, less likely to enjoy coming to the clinic, and may find it boring. Podiatrists acknowledged that for such patients, attending the clinic could be seen as disruptive to patients’ lifestyles. Getting to the clinic could be inconvenient and expensive and could possibly cause frustration due to long waiting times. For patients in paid employment, it was perceived that the time out of work might have a negative impact. Podiatrists discussed a spectrum of reactions by patients attending the clinic but, for the most part, agreed that patients are quite happy to come, despite other commitments.
       “We do have people who absolutely hate coming to start with and they get institutionalized fairly quickly…a lady like that, when she first came was, ‘I don’t want to come here week after week,’ you know, 3 months later, ‘Aren’t you putting me down for next week?’…they get quite dependent sometimes…the people who take more responsibility for their disease, if you like, are the ones who are less likely to keep coming.” (female podiatrist)
       Patients’ adherence to treatment recommendations. It was clear that patients were less likely to adhere to treatment recommendations that conflicted with their usual or preferred lifestyles. For example, despite agreeing that footrest was one of the best remedies for foot ulceration, few felt able to rest as much as recommended. Many were aware that walking or standing caused the condition to deteriorate but continued such activities, as the need for rest conflicted with their lifestyles. The most common reason was that footrest was impractical. Also, sitting at home was seen as boring and frustrating, and staying in bed all day was not feasible.
       “I know what the answer is: if I get an ulcer…you keep your feet up. But again to do that, it’s very awkward because you have still got to live. I know Dr. X, when he says, ‘Go home and rest,’ that is the answer, but there are certain other things you have got to do as well, you know, like earn a living!” (male patient, aged 45, foot ulcer[s] for 3 years)
Interviewer: “How much rest were you able to get with your foot elevated?”
Patient: [indicates none]
Interviewer: “None at all?”
Patient: “No. Well, I’m not a ‘sitting down’ person really.” (female, aged 62, foot ulcer[s] for 1 year)
       Prescribed footwear was a concern for the majority of patients and was a common source of dissatisfaction with care; the biggest concern was the appearance of the shoes and, secondly, their comfort. Men and women complained that the shoes were unfashionable, and most preferred to wear sandals in hot weather. Others were unhappy that the temporary footwear was not waterproof and prevented going out in wet weather. Consequently, nonadherence with footwear was common.
       Over half of the patients had worn a nonremovable cast. The majority found the casts cumbersome, inconvenient, tedious, and uncomfortable. The cast had to be worn continuously and was particularly problematic when sleeping, bathing, and walking. Three patients had been very distressed by having to wear a nonremovable cast, and 2 demanded that the casts be removed. One patient said wearing a fiberglass cast caused him to have a panic attack. He was so desperate to have it removed he tried to cut it off himself.
       Patient: “Psychologically, I thought there was something going wrong inside, and I couldn’t move my toes. And I like to wiggle my toes, because having neuropathy, you wiggle them, you can’t feel it, but you know they’re moving and they’re there.”
Interviewer: “So, you really hated that cast then?”
Patient: “I did! Couldn’t get it out my mind…I tried out [in] the shed to cut it off with the tree cutters. But it was fiberglass, and you can’t cut it off. I was out there—garden shears, hedge cutters…” (male, aged 66, foot ulcer[s] for 3 years)
       Quality of life was an important consideration for those fearing or requiring amputation. Five patients had undergone toe or foot amputation, and 5 others said they were told they would need amputations. Two others said they may need or feared amputation. Fear, shock, and distress were common, as patients felt their QoL would be significantly affected by amputation. In contrast, 2 of the patients who had undergone amputation expressed relief to be free from pain and were now more mobile. Another said he was in so much pain from his foot ulcer that an amputation would be preferable.
       “But if they had a toe problem, I’d certainly say, ‘Have it taken off. You’ll be much, much better, because you can get things that will help you to walk around without any pain in very good quality of life. Whereas to walk around with that pain, with all those toxins flying ‘round your body, is just awful. Listen to your doctors and chiropodist and do have amputations rather than battle on with pain.’” (female patient, aged 43, foot ulcer[s] for 1 year)
       Podiatrists’ perceptions of adherence. Adherence was generally referred to by the podiatrists as compliance and was perceived to vary from patient to patient over time. The podiatrists believed that the advice they gave patients was very difficult to follow, and consequently, patients would not do so. An additional view was that some patients expected the podiatrist to cure their ulcers and, therefore, did not feel it was necessary to take action themselves.
       With regard to the effects of time on compliance, it was perceived to occur in both directions. Some patients were perceived to initially demonstrate noncompliance and then have a “turnaround,” or a point of realization, after which they followed advice. Contrary to this was the view that other patients do follow advice initially, but their adherence waned over the treatment course. Podiatrists perceived the main catalyst for changes in adherence to be the provision of information about self-care, the consequences of nonadherence, and stronger, more explicit approaches to communicating such information. It was speculated that reduction in adherence might occur after an event in the patient’s life, as the second quote here illustrates, or because patients did not see notable improvements. The perception appeared to be that improvements in adherence could be achieved, but deterioration in adherence is out of the podiatrist’s control.
       “I think it very much depends on the patient, to be quite honest with you, and at what stage in their disease…sometimes, to begin with, patients don’t have a clear understanding of their condition, and so they often don’t follow that advice…again, a turnaround can occur when you provide information, and the patient will follow, but then, again lots of the long-term patients that were here seen with major problems, I do begin to wonder how much advice they actually take.” (male podiatrist)
       “I had a patient this week who we gave an air-cast to and I asked to actually note down how many hours a day he wore it. And he was very keen at first, but as the week went on, he had 1 day where he didn’t wear it at all because something socially was happening, and then after that point, he didn’t…he hardly wore it at all. And I think that is quite indicative of what happens…initially, they’re quite keen, but as soon as something happens and it takes them off that track, then they’re never so keen again.” (female podiatrist)
       Podiatrists perceived that realizing the seriousness of one’s condition was an important factor and prompted increased adherence. Conversely, podiatrists believed that some patients were in denial about their ulcers and that these patients were nonadherent.
       “If they accept that they do have control over [their ulcers] then they, a lot of them, take on board that they need to have [tight control over] the diabetes and stuff, and they are more careful.” (female podiatrist)
       “A couple of patients I’m thinking of particularly really just bury their head[s] in the sand and they don’t want to know about it.” (female podiatrist)
       Podiatrists reported that only a small portion of the information given to patients was retained. However, they believed that regular reiteration of advice on each visit increased the likelihood of information being retained. In the clinical situation, podiatrists may assume that patients understand the information being given, but when patients do not follow advice or come back asking the same questions repeatedly, it was apparent that they have not understood.
       Podiatrists acknowledged that the advice that patients receive could be complicated and confusing. Patients receive instructions from many different health professionals regarding various aspects of their self-care regimen, and podiatrists believed that patients were “bombarded” with so much information that they do not retain it all. Some information could be confusing or contradictory. For example, patients are required to rest yet are also advised to exercise and not gain weight.
       Podiatrists questioned the appropriateness of the advice they give in terms of the patients’ lives. The advice given is generic rather than tailored specifically to the patients and their needs, which was believed to decrease adherence. It was suggested that patients’ interpretations of information might differ from that intended by the podiatrist, as illustrated by the quote below. It was also believed that patients manipulate their interpretation to suit themselves.
       “He assured me he was resting, but when you talked to him a bit more, he was resting by doing weights and things that didn’t involved using his foot… and he thought, you know, ‘This is resting; I’m not doing my usual activity, so therefore I’m resting.’ But it wasn’t.” (female podiatrist)
       It was also perceived that patients’ beliefs about the effectiveness of self-care advice influenced their compliance. It was perceived that some patients, particularly those who did not appear to understand the severity of their ulcers, were more likely to not believe that following the podiatrist’s advice would cure their ulcers. In addition, because healing is very slow, it takes time for patients to see changes in their ulcers. Podiatrists believed that this might lead patients to doubt the effectiveness of any actions they may have taken.
       “I think it’s because they don’t believe what we’re telling them…they don’t see the connection, really. And they don’t see that it’s going to make any difference.” (female podiatrist)
       It was speculated that the slow pace of healing might cause anxiety in new patients. Podiatrists thought new patients expected the hospital clinic to solve their problems and healing to occur quickly. The following quote demonstrates how podiatrists perceive their own expectations of the medical profession to be more realistic than those of patients.
       “I think I’m perhaps more realistic about what the medical profession can provide than what the patient would be, because I don’t believe they can provide all the answers. But the majority of patients feel that, you know, the medical profession should provide all the answers, and once the medical bit is being dealt with, you know, that’s them kind of out of the picture.” (female podiatrist)
       Podiatrists were aware of many potential barriers to adherence that may affect patients’ abilities to perform the behaviors they prescribe. Barriers included physical disability, time, and socioeconomic factors. Podiatrists were aware that blindness, a complication of diabetes, affects patients’ abilities to care for their feet as is necessary. The absence of pain was also considered to be an issue. Because patients cannot feel pain, it was also recognized that they underestimated the seriousness of their conditions and did not feel rest was necessary. It was perceived that self-image was a significant barrier to wearing the prescribed or advised footwear for some patients, especially women. For example, 1 female podiatrist noted, “They want to look nice I suppose, most people. And money, I think, comes into it. A lot of people can’t get to the shop. They haven’t got the money to try these things. They haven’t got the time or the inclination to wander ‘round Broadmead [shopping district] looking for these things, you know, and…they’re probably not able to, a lot of them…I think for the majority of people it is the way that they look. Which is totally understandable, that the sensible shoe doesn’t look great.”