RETRACTED: Thoughts and experiences regarding leg amputation among patients with diabetic foot ulcers: A phenomenological study
Abstract
Despite lower-limb amputation being common among patients with diabetic foot ulcers, few studies have qualitatively investigated the patients' perspectives. Therefore, this study aimed to explore the thoughts and experiences of patients with diabetic foot ulcers regarding lower-limb amputation in Hong Kong. A phenomenological study using individual, semi-structured interviews was conducted with 18 participants with foot ulcers recruited in Hong Kong between July and September 2022. The interviews were audio-recorded, transcribed verbatim, and analysed using an interpretative phenomenological approach and a constant comparison strategy. The results highlighted four substantial themes: (a) coping or being alone and taciturn, (b) altered appearance impacting one's sense of maintaining social relations, (c) thoughts about self-efficacy and encountering a new normal, and (d) the possibility of a reduced gap in physical consequences between the old and new self. This study provided different perspectives of patients with a history of diabetic foot ulcers, even in cases where lower-limb amputation has not yet been performed. The results demonstrate that lower-limb amputation is considered a forbidden topic. This makes it culturally difficult for Chinese patients to discuss the matter with healthcare authorities and family members. Healthcare workers should be aware of how they communicate regarding lower-limb amputation.
1 INTRODUCTION
The global population of patients with diabetes rose phenomenally between 1980 and 2021, from an estimated 108 to 537 million people, respectively.1, 2 However, diabetic foot care and medical treatment are complicated, long-lasting, and require multiple players.3-7
Around 15% of people with diabetes develop foot ulcers, and 85% of lower-limb amputations are preceded by a foot ulcer.8, 9 Studies have shown that lower-limb amputation is a major life event that affects every aspect and quality of life.10-13 However, there is an increasing awareness that lower-limb amputation may also enhance quality of life after a long and devastating period of wound attention and care.3, 8 People with diabetic foot ulcers have stated that they gained their lives back after lower-limb amputation.14 Dillon et al. illustrated the need for patients to better understand the prognosis and significance of possible lower-limb amputations.15 A previous study reported that some psychiatrists reported patients expecting negative social consideration and attention after a lower-limb amputation.16 These patients were particularly concerned that the psychosocial aspects and quality of life after lower-limb amputation would affect them as much as the physical aspects.17-19
To the best of our knowledge, only a few qualitative studies have explored the expected outcomes of diabetic foot ulcers and lower-limb amputations from the patient's perspective.3, 13, 20 Some studies have investigated the experiences of patients and their families when considering major lower-limb amputation.13, 21, 22 Most patients with diabetes think about survival, being sick and in a poor health condition, and the consequences of treating diabetic foot ulcers. Anxiety and worries about the need for lower-limb amputation were highlighted, with patients and their families commonly seeking medical consultation for a second opinion.3 They stated that lower-limb amputation often induced panic because of the consequent loss of independence. According to Cornell and Meyr, the results provided insight into patients’ perceived anxiety and worries for being at risk of lower-limb amputation resulting from foot ulcers.11 Patients’ fears and anxieties concerned being completely dependent on others and not being able to walk. Most of the patients failed to mention other aspects such as footwear, wound pain, physical appearance, and financial impact.7
As few studies have examined the thoughts and perspectives of patients with foot ulcers on lower-limb amputation, this study investigated the experiences of diabetic foot ulcer patients regarding such possible amputations in detail.
2 METHODS
2.1 Design
A qualitative study with an interpretative phenomenological analysis (IPA) was conducted between July and September 2022. This approach adopted Heideggerian phenomenology, which indicates the dynamic and interactive nature of the research process. The interpretations of both the participants and researchers regarding the phenomenon were considered in the process of data analysis. IPA offers researchers the liberty to investigate how participants make sense of their lived experience, which is socially constrained, through their own interpretations to obtain a comprehensive understanding of the emotional responses, experiences, and coping strategies of patients with diabetic foot ulcers regarding lower-limb amputation.
2.2 Sampling and recruitment
Purposive sampling was implemented to recruit appropriate participants from online media platform groups in Hong Kong, such as “Diabetes Hongkong” and the “Hong Kong Diabetes Health Association.”
2.3 Inclusion and exclusion criteria
The inclusion criterion involved individuals of Cantonese ethnicity, Chinese-speaking, aged above 18 years, and having a history of diabetic foot ulcer treatment in an outpatient wound clinic. Exclusion criteria included those with hearing impairments and psychiatric disorders.
2.4 Data collection
Individual semi-structured interviews were conducted from July to September 2022. All the interviews were performed by the same researcher (KH), a qualitative scholar experienced in wound care research, to guarantee accurate data collection and consistency in interpretation. Potential participants were referred by a wound nursing specialist or from online media platforms in Hong Kong, with their consent to be contacted by the researcher (KH). Telephonic conversations were conducted to screen participants for eligibility and to inform them of the research objectives, confidentiality issues, and voluntary nature of participation. Written consent was obtained before the interviews. Each interview lasted 60–130 min.
The participants' interviews were guided by open-ended interview questions about their experiences with diabetic foot ulcers and lower-limb amputation. Thus, lay language regarding physical deficits and negative emotions was used to ensure that participants understood the questions. Participants were first asked to express their lived experiences with having foot ulcers and receiving treatment before proceeding to more specific questions (Table 1). The questions particularly involved how their negative emotions were triggered and transformed through their physical deficits. We attempted to understand what the consequences were from the perspectives of the participants and their families, and how they altered their emotional experience. Data saturation was determined at a point during the research when no new information was discovered through data analysis, ceasing data collection.23, 24 All the interviews were audio-recorded with written permission and transcribed verbatim from the interview tapes.
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Given the social distancing policy in Hong Kong during the COVID-19 pandemic, interviews were conducted via telephone or Zoom. To prevent any limitations from the telephonic or Zoom interviews and to safeguard a rigorous data collection process, the following approaches were used24: A phone call was first made to invite the participants to a casual discourse with the researcher and establish rapport. Second, the researcher actively listened, rephrased, and reflected the feelings of the participants to foster self-expression, confirming the researcher's understanding of their responses. The researcher responded with simple verbal confirmations to express respect towards the participants’ responses.
2.5 Data analysis
The IPA approach was used for data analysis.25 The interview transcripts were read word-by-word multiple times to establish a deep overall understanding of the participants' experiences. Notes were written about the content and interpretations of the narratives. The researcher analysed the relationships expressed in the notes and clustered them according to similar intentions and beliefs, into sub-themes and themes, developing a preliminary framework. A table with the sub-themes and themes was cross-checked with the transcripts to assure consistency. Finally, each theme was highlighted through a narrative approach with verbatim quotations. Continuous comparisons were made to consider the differences and similarities between all cases, especially in terms of diabetic foot ulcer severity, coping with the symptoms, and treatment regarding lower-limb amputation.26
2.6 Rigour
The rigour of this study was strengthened using IPA's five rigour principles.27 Balanced integration was augmented by persistently comparing themes with transcripts to ensure that the interpretations were grounded in participants’ narratives. Openness was guaranteed by having research team members evaluate the analysis and interpret decisions until mutual agreement was achieved. Specificity was achieved by complementing the research findings with verbatim excerpts to highlight the context of the participants. Resonance and realisation were ensured by associating the research findings with future implications and the significance for research and nursing practice in clinical settings. This study followed the consolidated criteria for reporting qualitative studies.28
2.7 Ethical considerations
Prior to data collection, ethical approval for this study was obtained from the local academic institute in Hong Kong (HRE210166). Participant was voluntary and participants could withdraw from the study at any time. The study information was described in layman's terms to account for individual differences in understanding the information. Written consent was acquired from each participant before the interview. Data confidentiality and privacy were ensured. All audio recordings were coded with numbers and stored in a password-protected computer.
3 RESULTS
A purposive sample of 18 adults with a history of diabetic foot ulcers was included (Table 2), with a mean age of 54 years (range: 44–66 years). All participants lived in Hong Kong; the majority were married and had completed at least secondary education.
| Characteristic | All | Male | Female | |||
|---|---|---|---|---|---|---|
| n = 18 | n = 13 | n = 5 | ||||
| n | % | n | % | n | % | |
| Age (years) | ||||||
| 44–53 | 11 | 61 | 8 | 62 | 3 | 60 |
| 54–63 | 6 | 33 | 5 | 38 | 1 | 20 |
| >64 | 1 | 6 | 0 | 0 | 1 | 20 |
| Education level | ||||||
| Secondary | 5 | 28 | 3 | 23 | 2 | 40 |
| Tertiary | 13 | 72 | 10 | 77 | 3 | 60 |
| Marital status | ||||||
| Single | 4 | 22 | 2 | 15.5 | 2 | 40 |
| Married | 11 | 61 | 9 | 69 | 2 | 40 |
| Divorced | 3 | 17 | 2 | 15.5 | 1 | 20 |
| Living status | ||||||
| Living alone | 7 | 39 | 4 | 31 | 3 | 60 |
| Living with family | 11 | 61 | 9 | 69 | 2 | 40 |
| No. of year(s) of wound experiences at time of the interview | ||||||
| <1 | 4 | 22 | 4 | 31 | 0 | 0 |
| 1 | 1 | 6 | 0 | 0 | 1 | 20 |
| 2 | 3 | 17 | 2 | 15 | 1 | 20 |
| 3 | 8 | 44 | 6 | 46 | 2 | 40 |
| 4 | 0 | 0 | 0 | 0 | 0 | 0 |
| >4 | 2 | 11 | 1 | 8 | 1 | 20 |
| Religious belief | ||||||
| Nil | 8 | 44 | 4 | 31 | 4 | 80 |
| Christian | 5 | 28 | 5 | 38 | 0 | 0 |
| Catholic | 2 | 11 | 1 | 8 | 1 | 20 |
| Buddhist | 3 | 17 | 3 | 23 | 0 | 0 |
3.1 Theme 1: Coping or being alone and taciturn
“I did not pay attention to my blood sugar (glucose level), I did not take proper care of my foot (diabetic foot ulcer), I knew there was a risk of amputation. All this was a punishment for me, and now the retribution is coming to me bit by bit.” (No. 15, 50 years old, >three years of wound experience).
“I think it is because they do not want to hear it for themselves, they do not like and do not want to see something so horrible and ugly. I do not know if it is disgusting for other people to see it. It is like watching soldiers chopping off people's legs in the horrifying videos of the historical Holocaust. This is the only amputation you hear and see people talking about!” (No. 18, 48 years old, three years of wound experience).
“I am more at ease … Fortunately, they [members of the self-help support group] told me about the relevant things. It turned out that I knew in advance that the wound would feel scarred after the operation.” (No. 14, 61 years, > three years of wound experience).
3.2 Theme 2: Altered appearance impacting one's sense of maintaining social relations
“I am still me; my husband, daughter, and friends feel that I have not changed and accept who I am. However, more strangers on the street look at me with strange eyes. I know how to deal with this situation. You can turn a blind eye to these strangers and face them with a static direct gaze.” (No. 6, 48 years old, three years of wound experience).
“People are always faced with all kinds of mental distress. When you have an unforeseen and inescapable problem at hand that you need to face, you must think about it.” (No. 2, 60 years old, two years of wound experience).
“Although I lost a leg, when I was wearing trousers, I do not think people perceived me as wearing a prosthetic leg. I normalized myself with my body image and shape, maybe they could see me limping a little … Well, at the same time, it meant I could walk around.” (No. 11, 44 years old, >four years of wound experience).
3.3 Theme 3: Thoughts about self-efficacy and encountering a new normal
Several participants mentioned that they had trouble assuming a sense of self-efficacy after lower-limb amputations and expressed that having an amputation was like being at a crossroad; they could either be brave or lose courage.
“Oh! My Buddha (Guanyin Bodhisattva), I keep away from others' pity … The world is suddenly recognized from an absolutely different perspective when I am talking to friends, looking at my wife and daughter in the eyes, and giving them a kiss. I am no longer sitting down where I am not at eye level (crises), I am not in a chair. After (lower limb) amputation, this is the first time I am standing up and high because I can do it (laughs).” (No. 3, 48 years old, three years of wound experience).
“If a fish dies in the fish tank, it must be taken out, otherwise the fish in the same fish tank will not survive … This is the in and out, and it is also to find the value of survival for my own life. I can go out without a stick for support. I do not have to walk on both feet, I can still walk away from home for a while. I can feel the sun shining on my face and see the bright side” (No. 4, 45 years old, <eight months of wound experience).
“I know I can trust them (healthcare professionals) and know everything (information related to lower-limb amputation) beforehand; but, now that I have my leg again, it is like pulling myself up by the bootstraps because I must (force) move on. I hope it is going to be a piece of cake for my life journey.” (No. 1, 62 years old, three years of wound experience).
3.4 Theme 4: The possibility of a reduced gap in physical consequences between the old and new self
“Although people do not help me 100%, now I think I would be much more dependent on my husband to assist me with housework. The less of a liability I am, the better I feel about myself.” (No. 16, 49 years old, >four years of wound experience).
“My wife was pale and nervous; it could be stressful to her. I only endure in silence, I sometimes look out of the window.” (No. 13, 53 years old, <one year of wound experience)
“I need to have a day-to-day life where I do not think so much about it (lower-limb amputation) anymore. I have already prepared a bit at home, such as changing the handle of the bathroom, moving out some furniture to ensure more space to facilitate a wheelchair.” (No. 9, 55 years old, two years wound experience).
“I dare not have too much hope. And then I think, but I need to sit in the wheelchair to rest if I get a (phantom) pain in my leg … But now I have no feelings in my legs, I consider whether it could be severe or if my brain has already become adapted to missing a leg?” (No. 17, 51 years old, six months of wound experience).
4 DISCUSSION
Exploring the lived experiences of participants illustrated that even those not currently facing lower-limb amputation experienced anxiety and fear about it. Their concerns, hopes, wishes, reflections, and anxieties regarding lower-limb amputation defined them. The main findings of the present study highlighted that such thoughts were rarely shared with other people, not even family members or healthcare professionals, because of the cultural belief that lower-limb amputation is a taboo topic and one should suffer alone.
Owing to the apparent disability of a lower-limb amputation, fears of encountering strangers are prevalent, which encourages the use of prosthetics. The classic treatise of Goffman delineates between individuals who are discredited—whose stigma is clearly well-known or visible—and those who are discreditable, that is, those whose stigma is hidden and concealable.29, 30 Using a protected prosthesis preserves the illusion of having both legs, commensurate with the normative assumption of society. Barg et al. expressed this as a belief of undesirable awareness when meeting a stranger.3 People who experienced amputation felt that the cosmetic characteristics of a lower-limb amputation may be just as important as the physical characteristics.16, 31 Patients who were highly socially conscious recognised that it would be more difficult to conduct daily living activities after amputation.32 Cornell and Meyr's study described that physical appearance was one of the aspects that participants were the least bothered about.10 Therefore, there were varied feelings regarding the importance of physical appearance.
The findings showed that lower-limb amputation is considered a taboo topic in Hong Kong. Normative expectations arise when people meet others, and deviations in such expectations can cause stigma.33, 34 Even in interactions with healthcare professionals, the lack of conversation about lower-limb amputation may support stigmatisation.20, 35 Further reasons for not talking about the issue could include anxiety and worry about what lower-limb amputation will entail or fears of annoying family members. In the United States, a study stated that preliminary negative perceptions of lower-limb amputations were an unfortunate complication of diabetes instead of death and that healthcare professionals perceived lower-limb amputation negatively.3 Some people associated words, such as depression, anxiety, fear, and life-long phantom, with lower-limb amputation.10, 16, 36 Hence, several studies have described amputation negatively.3, 10, 12, 16, 37, 38 The experiences in this study showed that diabetic foot ulcers can be the trigger of major challenges. At the same time, people with diabetic foot ulcers can enhance their quality of life after lower-limb amputation.3, 39
To eliminate the taboo regarding lower-limb amputations and ensure the safe expression of feelings and beliefs, healthcare professionals should recommend having a discussion on the issue, particularly if a patient with diabetic foot ulcers has not yet undergone lower-limb amputation. Our results reflected the desire of those facing lower-limb amputation to communicate with other patients suffering from diabetic foot ulcers.37 Dillon et al. also demonstrated that such meetings can be encouraging.12, 14 A stigma is defined as a stereotype or negative idea (an attribute that is deeply discrediting) concerning a person or groups of individuals, when their aspects or behaviours are considered inferior compared to societal norms.30, 40 Prosthetic users are stigmatised, but experience tolerance when encountering other people with diabetic foot ulcers. The findings of this study demonstrate the desire for an accepting environment where lower-limb amputations can be openly and voluntarily discussed. Peer support mentors who have experienced lower-limb amputations can provide psychological support for transformation after surgery. Consistent with previous studies, an appropriate venue and atmosphere of patient meetings with these unique support mentors should be facilitated.35, 41-43
Furthermore, this study suggested that self-efficacy and coping expectations may vary widely after amputations. These self-efficacy expectations range from devastating to controllable. Participants emphasised the importance of early experiences and appreciated the role of healthcare professionals in delivering knowledge and support. There is evidence of greater self-efficacy and the cultivation of a good quality of life and functional capacity through improved disease self-management and a high degree of communication between patients and healthcare professionals.44
Performance encouragement, emotional support, and empathy can be of enormous benefit to patients,45, 46 and it is important to consider how people cope with challenges. Assessing individuals' requirements for support establishes the patient's coping abilities, revealing their self-rated self-efficacy.16, 47
Existing studies have suggested the importance of support, information, education, and empathy.12, 14 Another qualitative study delineated that diabetic foot ulcer patients with lower-limb amputation highlighted the importance of reassurance, emotional and peer support, communication, and education in informing and preparing individuals for life after amputation with rehabilitation.47 Palaya et al. also reported that meaningful information, tailored and empathetic education, and social support could help patients feel empowered.48 This requires consideration of individuals' levels of self-efficacy.14 Healthcare professionals should understand their role in supporting patients with diabetic foot ulcers and their family members as they form suitable situations for dealing with the new situation.
The findings showed that participants were concerned about lower-limb amputation being associated with elevated dependence. Participants feared being a heavy burden to their family members, and the application of a prosthesis could be regarded as a rational chance to achieve independence. Some studies also highlighted the concerns about increased dependence after lower-limb amputations.3, 12 The authors found that addressing this concern is required with discussions about ambulatory physical functions, expectations, body appearance, family roles, and aspects of the social world preceding lower-limb amputation. Other studies have shown that certain participants, depending on their personal and physical circumstances, were willing to use a prosthetic leg.7, 16 Participants described how idealistic expectations of surgery may become more real through education prior to the surgery, encouraging the uptake of beneficial lifestyle activities.48 This suggests the importance of having honest and authentic conversations about mobility and prosthetic use before amputation.
5 LIMITATIONS
The present study was limited by the fact that all participants were from one country. The in-depth lived experiences and insights gleaned from the participants through the IPA approach may be unique to their experiences, thereby reducing the possibility of generalizability. According to the application of IPA during semi-structured interviews, the existing study attempted to ensure methodological and theoretical consistency to improve transparency and credibility. The findings of this study explored the feelings and reflections regarding amputation among people with diabetic foot ulcerations. The results should be interpreted cautiously since responses might differ in cases where lower-limb amputation was actually conducted.
6 CONCLUSIONS
This research employed the IPA approach to generate detailed insights of people with diabetic foot ulcers, who may have many unspoken thoughts regarding lower-limb amputation. This can encourage healthcare professionals to assess the various feelings and beliefs of these patients about amputation, providing them with strategic opportunities to express those thoughts.
In summary, the present phenomenological study shows that for patients with diabetic foot ulcers, amputation is a taboo issue, and they find it difficult to share their problems with healthcare professionals and family members. Therefore, healthcare professionals have an important role in delivering appropriate care services for diabetic patients and eliminating this taboo.
AUTHOR CONTRIBUTIONS
Ka-Huen Yip: Conceptualization; Yuk-Chiu Yip: Data curation; Yuk-Chiu Yip and Ka-Huen Yip: Formal analysis; Yuk-Chiu Yip , Ka-Huen Yip, and Wai-King Tsui: Investigation; Yuk-Chiu Yip: Methodology; Yuk-Chiu Yip, Ka-Huen Yip, and Wai-King Tsui: Project administration; Ka-Huen Yip: Resources; Ka-Huen Yip: software; Ka-Huen Yip and Wai-King Tsui: Validation; Ka-Huen Yip: Writing—original draft; Yuk-Chiu Yip and Ka-Huen Yip: Writing—review and editing. All authors have read and agreed to the published version of the manuscript.
ACKNOWLEDGEMENTS
The authors thank Nurse Consultants Chan Ka-Wai and Shit Kam-Yee Francis for their assistance with this research project and the research participants for their time dedicated to this study.
FUNDING INFORMATION
This research was funded by the Institutional Development Grant (IDG) from the Caritas Institute of Higher Education (Reference no: IDG220223).
CONFLICT OF INTEREST
The authors declare that there is no conflict of interest.
ETHICS STATEMENT
Ethical approval for this study was obtained from the Research and Ethics Committee of the Caritas Institute of Higher Education (HRE210166).
Open Research
DATA AVAILABILITY STATEMENT
The data that support the findings of this study are available from the corresponding author upon reasonable request.
