Patients’ experiences with diabetic foot ulceration – a thematic analysis

Introduction

Patient experience is a multidimensional concept, influenced by expectations and preferences, as well as by different patient responses. Patients’ experiences are reflected in the physical, psychological, social and cultural dimensions of quality of life [1]. Understanding patients’ experiences is key to patient-centered care [2, 3]. Patients with diabetic foot ulceration (DFU) experience a negative impact on physical and psychosocial functioning and overall reduced quality of life, caused by the presence of pain, infection, fatigue, prolonged hospital treatment and repeated visits and dressings in the surgical clinic [4, 5]. Stigma related to the appearance and smell of ulcerations lead to patients’ loss of self-esteem, anger and frustration, experiencing helplessness, depression, lack of energy and motivation for treatment. Patients may have feelings of guilt and self-blame about their foot problems. The opposite example is patients who learn to accept the situation associated with diabetic ulceration and maintain a positive view of healing, which helps them better cope with the challenges that DFU presents [4, 6]. Diabetic foot ulceration often leads to disability and dependence on family and friends, from whom they need help in performing activities of daily living and are often completely excluded from leisure activities [7]. Patients fail to fulfill their social roles and lifestyle restrictions lead to their social isolation. Patients are often forced to retire early, when the work is risky for them in terms of the load and the risk of leg injuries. Disability causes financial difficulties for patients and their families [1, 4]. Patients often interpret DFU incorrectly and do not associate them with the need to compensate for diabetes mellitus. They fail to recognize the potential seriousness of DFU in time and seek professional help late. It is also related to the fear of amputation, especially if it concerns reulcerations or they know someone who has undergone this procedure. Patients’ experiences are an expression of a complex framework of subjective symptoms, with an impact on everyday life. Psychosocial factors, such as the ability to handle the load, various manifestations of stress, personality traits, and social support play an important role [4, 6, 8].
The aim of the qualitative study was to explore the individual life experiences of patients with DFU and to determine the impact on their daily lives.

Material and methods

Study design, procedures and participants

The study was designed as descriptive qualitative research. We used semi-structured (face-to-face) interviews to collect empirical data, and then thematic analysis was adopted to analyze the data.
The study used a purposive sampling method. The participants were recruited in person during a visit to the surgical vascular clinic and outpatient department of the University Hospital and Jessenius Faculty of Medicine in Martin, Slovakia. Eight participants took part in the study, who met the inclusion criteria: type 2 diabetes mellitus (T2DM), currently present DFU, age > 18 years, no cognitive dysfunction, and signed informed consent. The exclusion criterion was unwillingness to participate in the research. The authors were not involved in providing health care to the participants. An average age of patients was 69 years, an average duration of T2DM was 13 years and an average duration of diabetic ulceration in treatment was 42 weeks. All patients in the sample had completed secondary education with a high school diploma (Table 1).

Data collection

The semi-structured interviews (face-to-face), based on protocol, were conducted in January–March 2023. The duration of the interviews ranged from 30 to 50 minutes. The questions were formulated according to the studies that focused on the quality and barriers in life of patients with DFU [1–4]. The interviews were recorded and subsequently transcribed verbatim.

Data analysis

The data were processed using thematic analysis according to Braun and Clark [9]. Braun and Clark describe thematic analysis as a flexible method to identify and analyze themes in data. It consists of the following six steps:
• familiarization with the data,
• generating initial codes,
• searching for subthemes,
• reviewing subthemes,
• defining and naming themes,
• final analysis and summary of the results and producing a report.
The semantic patterns were identified in the data, after initial reading of the interviews, and were marked with separate codes. By merging codes based on similarities in meaning, specific subthemes were then identified and subsequently grouped into higher order themes. Peer debriefing by the authors was realized to increase the trustworthiness of the study [9].

Results

After thoroughly familiarizing ourselves with the data, 121 codes were generated. Based on the similarity of the individual codes, 12 subthemes were identified. These subthemes were then grouped according to their meaningful connections and similarities, resulting in the establishment of four main themes: Life and Diabetic Foot Ulceration, Causes and Symptoms, Emotional Experience, and Quality of Social Life and Relationships (Table 2).
The theme Life and Diabetic Foot Ulceration represents, in the subtheme Loss and Willingness of Change, the patients´ lives before developing DFU and what they would like to change in the future. Patient P2 stated: My life was much better before the wound on my foot... If I were healthy, I would help people, I mean charity and such things... (tears in her eyes). Patient P7 expressed a desire to change his approach to the disease: I would have paid more attention to my diabetes, simply to what I didn’t do, what I underestimated... I regret that I didn’t go to the diabetologist immediately, that I waited, and now I’ve ended up with a diabetic foot. The willingness of patients to change their lives highlights an opportunity for professionals to leverage this potential to promote lifestyle changes and engage patients in preventing reulceration.
The subtheme Acceptance or Reconciliation reflects patients’ attitudes toward the disease. Patient P1 remarked: This is not how I imagined my retirement... I thought I’d have healthy legs and go mushroom picking and hiking... and now I’m stuck at home. Patient P3 said: The hardest part is that I’ve been lying here for almost ten days. My foot is still so unpredictable. Sometimes it’s red, sometimes blue, sometimes pale, sometimes normal. It is difficult for patients to accept the treatment when their condition does not improve/has not improved for a long time.
Patient P5 came to terms with amputation in anticipating that it would help after two years of living with an ulcer it would free him of suffering and he was saying: ...the doctor said they’d need to cut off my toe first... and on the third day, they suggested removing all three toes... if it helps, then do it. Long-term treatment of diabetic ulceration is a significant burden for both patients and their families, leading some to seek relief even through amputation. At the start of treatment, patients often resist the idea of amputation, as patient P7 expressed: I resisted for so long, thinking it couldn’t be possible that I’m one of those (referring to fellow patients with amputations). But in the end, I was...
The subtheme Is it My Fault? involves patients who consider how diabetic ulcer could developed. Patient P7 said: I simply know that what’s happening with my foot is the price I’m paying for how I treated my diabetes back then... Patient P8 shared: I had been to the general practitioner, who told that you probably have diabetes, but I ignored it... I only started dealing with it when I had problems and my foot turned red. Some patients search for external causes, while others recognize their own role and acknowledge issues with wrong self-management of their diabetes.
The theme Causes and Symptoms is tied to patients’ experiences with their knowledge about T2DM and DFU, as seen in the subtheme Lack of Knowledge. Patient P2 stated: I didn’t really know what it was about, my toe started oozing... I don’t know what it could be from, maybe it just appeared out of nowhere... The lack of knowledge is also reflected in patient P3 comments: I can’t say what might have caused it... (thoughtful look)... I walked barefoot a lot, and nothing like this ever happened before... Patient P8 added: I didn’t pay much attention to my diet, I liked sweet sodas.... All participants had been diagnosed with T2DM for more than ten years, and non-adherence to proper lifestyle habits led to chronic complications, including diabetic ulceration. That informs us about absence of continuing education to prevent diabetic ulceration.
The subthemes Impaired Mobility and Pain reflect the most common symptoms experienced by patients with DFU. Impaired mobility is associated with limited movement and weakness in the lower limbs, which prevents patients from engaging in daily activities and leisure. Patient P1 noted: I struggle to walk... all the women at the windows watch as the lame man (anonymized) walks by... it depresses me. Impaired mobility became a stigma for the patient. Pain is considered a significant symptom by patients with DFU, and experiences with pain vary depending on the type of the ulcer. Patient P6 said: My calves just hurt so much, I had to stop, rest, and then move on... Patient P8, on the other hand, felt no pain despite having a wound, due to diabetic neuropathy. Patients who underwent surgical interventions described ...excruciating and intense pain. After toe amputation, patient P2 described phantom pain: It hurts, and sometimes I feel like my toe is still there. Most patients mentioned using analgesics to alleviate their pain.
The theme Emotional Experience encompasses three subthemes Meaning of Life/Purpose in Life, Hope and Faith. The subtheme Meaning of Life/Purpose in Life introduces the fear, worries, and limitations patients face, as well as the mobilization of inner strength. Patient P1 reflected: ...if I have to lose my leg, I want rather to die, give me an injection, I already have enough of that life. However, some patients found strength to endure the difficult treatment period, like patient P4: ...you have to fight with yourself... just suffer as long as you can, so you can get out of this as soon as possible (tears appeared in his eyes). Patient P6 was confident: ...I’m not a weak person, so I can pull myself together and move on.
Hope for patients is associated with the expectation of improvement in their condition. Patient P3 wished: If they could find a cure so that humanity could be freed from this... that’s what I could imagine. Patient P8 said: I’m still happy that it’s like this (he had his toes amputated)... I’m glad I still have my foot, even without toes... even with one leg, I can use crutches. That keeps me going; if I lost it, that would be a disaster.
The subtheme Faith reflects experiences in the spiritual realm. For patient P1, listening to the mass on television helps. Patient P2 shared: Praying helps me to get through this... and my friends help too (tears in her eyes). Patient P4 remarked: You have to have an interest in something, a love for something, and if you don’t, that’s the end. Patient P7 said: I believe in myself... I don’t have faith in anyone else... For patients, faith is not only understood in religious terms but also as a connection to values like friendship, interests, love, and with self-respect.
The theme Quality of Social Life and Relationships emerged in the subthemes Being Part of Society or Avoid it, Loneliness, and Family Support is Beneficial. The subtheme Being Part of Society or Avoid it reflects how DFU affects patients’ social lives. Patient P3 said: Nothing has practically changed, we still go to social quizzes... except for my annoying pain... In contrast, patient P7 withdrew from social life: I can’t go to social events anymore, I don’t have shoes for it... we were preparing for a ball, but in the end, I didn’t go because... what’s the point when your foot is bandaged... I’m not going to show up in slippers... how would I feel? Patient P2 mentioned: I don’t go out anymore, I just stay home, walking is difficult... before, I was so happy when someone came to visit me, but it’s not like that anymore. Patient P5 commented: As long as I could, I still went to work, even with a cane, but eventually, it became embarrassing, so I stopped... and now I’m struggling (with a sad expression)... once a week, my friends would meet... this summer, I sat with them and listened, but I don’t go anywhere in the winter because there are stairs everywhere.
The subtheme Loneliness expresses the negative feelings resulting from limited social interactions and feelings of abandonment. Patient P5 misses the “old” gatherings: I miss not meeting with my friends and colleagues anymore, not chatting and reminiscing... Patient P4 finds loneliness to be the hardest part of living with DFU: I’m left all alone (tears in his eyes).
The subtheme Family Support is Beneficial is considered crucial by patients with DFU. Patient P1 stated: My wife is my treasure... she takes care of me. Patient P1 finds meaning in his existence in relation to his grandchildren despite DFU and says: I just need a few more years to live for my grandchildren. Patient P6 also found support in her family: My husband and grandson help me cope with it... my daughter also gives me courage. Patient P7 added: My family keeps me afloat; I have two daughters who care about me and a wife who takes care of me. Patients value the interest and care by their family, perceiving their support as positive.

Discussion

Gathering data on the experiences of patients with DFU is crucial for understanding their problems [3].
Through thematic analysis of these experiences, we identified the impact of the disease on the physical, psychological, social, and spiritual aspects of the lives of patients with DFU. The patients with DFU often experience negative impact on their physical and psychosocial functioning and reduced quality of life [4]. Patients’ thoughts of the emergence of DFU were associated with feelings of regret and anger to ignoring regular check-ups and not paying attention to proper lifestyle management with diabetes. Although they had been diagnosed with diabetes for several years, they could not understand how DFU had developed. They misinterpreted the loss of sensation and ischemia in their lower limbs, which led to misguided attempts to improve circulation by walking barefoot or wearing sandals. The feet of patients with diabetes are thus at increased risk of injury [6].
Ogunlana et al. [10] point out that even when patients are aware of appropriate foot care practices, they often fail to follow them. Patients’ lack of knowledge led them to attempt self-treatment of DFU, accelerating tissue devitalization, where amputation ultimately became the only possible therapeutic solution.
Patients in our study had unpleasant physical experiences, including impaired mobility and pain. The study by Khunkaew et al. [1] indicates that DFU causes physical limitations for most patients. Impaired mobility in performing daily activities leads to dependence on family members and restrictions in recreational activities. Thematic analysis of patient experiences confirmed the variability of pain, ranging from claudication pain to no pain, which was associated with loss of sensation due to polyneuropathy. Loss of sensation may cause patients to overlook minor foot trauma or infection, potentially leading to amputation. Patients with DFU experienced social restrictions and expressed regret and shame when using assistive devices and diabetic footwear in public. A study of Tosun Selcuk et al. [11] confirmed that patients were limited by the need to use a walking cane, became dependent on their loved ones, and lost their social lives.
The emotional experiences of DFU varied among patients. They expressed feelings of anger, frustration, a lack of desire to live, and even one of patients contemplated euthanasia if he had to undergo amputation. In contrast, a patient with a long-term DFU accepted amputation as a relief from the chronic and untreatable ulceration, repeated dressings, and surgical visits.
Experiences of loneliness were associated with feelings of hopelessness, stress, and anxiety. Patients who found support in their families were more emotionally stable, these similar findings were confirmed and reported in other studies [1, 4, 11].
The nurses should manage and coordinate an interdisciplinary team in the care of a patient with DFU according to evidence-based practice. The collaboration of the interdisciplinary team should be reflected in the care protocol for the patient with diabetic ulceration, which includes assessment, diagnosis, planning, implementation and evaluation of the effectiveness of interventions and goals in the care and education with the active involvement of the patient or relative. It is also appropriate to use digital technologies for monitoring the results of self-management of diabetes, screening and foot care, or the possibility to consult with professionals about difficulties. The continuous training of the members of the interdisciplinary team in order to implement the latest evidence and standards on the prevention and care of patients with diabetic ulceration into practice is also important.

Study limitations

Data collection from patients with DFU was conducted at a single healthcare facility, the University Hospital in Martin, which may limit the generalizability of the findings due to the identical conditions and approach to patient care.

Conclusions

The experiences of patients with DFU represent a complex framework that impacts their daily lives. Experiences with impaired mobility, pain, long-term treatment, and fears of amputation, negatively affect patients’ lives, leading to feelings of helplessness and despair. Psychosocial factors play a crucial role, such as the willingness to improve diabetes self-management, coping with stress, and social support from family. Nurses should leverage patients’ willingness to improve their diabetes self-management and prevent reulceration by their education.
A systemic approach requires education on the prevention and care of diabetic feet, the establishment of a certified role for a podiatric nurse. It is also important to involve health insurance companies to allocate financing rewards for education as a key component of therapeutic interventions performed by nurses.

Disclosure

Institutional review board statement: Not applicable.
Approval for the qualitative study was granted by the Ethics Committee of the University
Hospital in Martin (Slovakia) under number 107/2022. The study was conducted in accordance with the Declaration of Helsinki (1989) and with Regulation (EU) 2016/679 of the European Parliament and of the Council [12] and the signed informed consent of the patients.
Financial support and sponsorship: None.
Conflicts of interest: None.

References