When a Diabetic Foot Ulcer Results in Amputation: A Qualitative Study of the Lived Experience of 15 Patients
Diabetes is a chronic disease that can lead to complications resulting in diabetic foot ulcers (DFUs), foot infections, osteomyelitis, and amputations. Almost 50,000 amputations performed every year in the United States are due to DFUs. A qualitative analysis using Colaizzi’s step-by-step approach to phenomenology was conducted to describe the experiences of 15 patients with diabetes living with a foot amputation. Semi-structured interviews were recorded digitally, transcribed, and analyzed. The analysis included reading transcripts multiple times, identifying noteworthy verbatim statements, then abstracting key words and phrases; similar key words and phrases were grouped into a meaning unit. The researchers rereviewed original transcripts, verbatim statements, and extracted key words and phrases and devised meaning units to identify main themes. Rigor in this study was ensured by developing an audit trail that linked the meaning units and themes back to key words and verbatim statements in the original transcripts and then allowing the participant to ensure accuracy of recounted information. Five major themes emerged from the data regarding patient concern about the ability to be productive members of society (ie, transitioning from having a nonhealing wound to living as a new amputee) — financial burden, powerlessness, social support, placing blame, and uncertainty in one’s continued ability — each having implications for health care providers as well as patients. By considering the experience from the patient perspective, health care professionals may be better prepared to discuss patient concerns with follow-up care and day-to-day living, especially in getting help with finances. Additional research is needed to uncover models of care that may help these patients remain productive members of society and reduce the burden of amputation on patient quality of life.
Potential Conflicts of Interest: none disclosed
Diabetic Heel Ulcers: A Major Risk Factor for Lower Extremity Amputation
Preventing Foot Ulceration and Amputation by Decompressing Peripheral Nerves in Patients with Diabetic Neuropathy
Diabetes is a chronic disease that can lead to complications resulting in diabetic foot ulcers (DFUs), foot infections, osteomyelitis, and amputations.1 More than 171 million people worldwide have diabetes, and this population is expected to double in the next 13 years.2 The International Working Group on the Diabetic Foot3 (IWGDF) considers amputation a global epidemic and estimates more than 1 million amputations for DFUs occur every year; worldwide, a partial or full amputation occurs every 30 seconds. Most often, patients with peripheral vascular disease, critical limb ischemia, osteomyelitis, or gangrenous ulcers undergo amputation with partial limb salvage as the only possible outcome.
The number of Americans with diabetes has risen to almost 26 million; nearly 80 million individuals have prediabetes.4 Medicare data from 2006–2008 as cited in the Agency for Health Research and Quality5 (AHRQ) Publication No. 10(11)-EHC009-2-EF report show 8% of individuals age 65 and older with diabetes have DFUs, and nearly 2% of these individuals have had some form of amputation. Moreover, the AHRQ reports surgeons perform almost 50,000 amputations due to DFUs in the United States every year. Each day, more than 500 individuals in the US experience foot amputation, and more than half of these individuals require a second amputation within 2 years. Additionally, 90% of individuals undergoing an amputation do not receive inpatient rehabilitation care, which leads to poor patient outcomes.6 Many individuals are readmitted to the hospital within 1 year of the amputation due to complications of the affected limb. Moreover, amputations due to a DFU frequently have negative social, economic, and psychological consequences for individuals and their families.3 Care of patients newly diagnosed with diabetes begins with classes to teach self-care and continues through the relationship with health care personnel to assist in the lifelong maintenance. This is especially important for patients with diabetic neuropathy, because foot ulcers may occur without pain. Foot inspection should become an important part of daily routine. Health care policy directed to assist the patient with services may be necessary because copays may not be affordable. A transitional care program with an interdisciplinary team may help amputees more easily move from hospital to home to the highest level of mobility.
The IWGDF3 used a systematic search of databases to obtain information and summarize data. Although the literature is replete with statistics related to DFUs and amputation, less is known about the lived experience of the individual who has undergone the amputation. Little research has been done in the US or internationally to examine how individuals perceive their lives after amputation due to DFUs. Health care providers develop a plan of care for this group of patients based on assumptions about their patients’ needs. However, having a better understanding of the experiences postamputation from the patients’ perspective may offer an opportunity to improve the initial care plan, follow-up care, and overall quality of life (QOL). All care providers, including experts in diabetic foot care, need more information about what it is like to have an amputation resulting from a DFU and the day-to-day experience postamputation from the patient’s point of view. Examining the experience through the lens of the patient may guide health care professionals to make practice changes based on the evidence provided by patients.
Diabetes and PVD are major causes of amputation, costing more than $6.5 billion each year.1,4 Recent updates from the Infectious Diseases Society of America7 Clinical Practice Guidelines for the Diagnosis and Treatment of Diabetic Foot Infections provide excellent information concerning ways to decrease the need for an amputation.3 These guidelines support the assessment of arterial blood flow to the affected limb when wound healing is compromised. By improving arterial blood flow, wounds have a better chance to heal and fewer amputations would be needed.4 Despite these guidelines, many individuals with diabetes are undergoing amputation and experiencing changes in QOL. A prospective, mixed quantitative and qualitative study,8 conducted in Spain, assessed the impact of amputations on QOL and confirmed 1) foot ulcers affected QOL and 2) individuals who had amputations that healed more quickly returned to a more normal lifestyle faster. The same study found 1) loss of protective sensation had a more negative effect on QOL than the amputation itself, and 2) complications of Charcot foot and PVD increased functional disability. Likewise, a cross-sectional study9 of 60 participants living in the Sudan with diabetes-related lower limb amputations of >5 years assessed medical outcomes, sense of coherence, and QOL using valid and reliable instruments; the study showed patients with limb amputation had better family life QOL (P <0.0001) than those without amputations, but all other aspects of QOL were negative and linked to time since amputation. A similar study conducted in Jamaica10 with 87 participants between 43 and 86 years of age with amputations explored age, level of amputation, and gender with regard to QOL. Study findings revealed a higher QOL and functional independence with below-knee amputations (P <0.0001) and significantly better QOL among women (P <0.05). A meta-analysis11 of the literature assessed outcome measures of functional rehabilitation and QOL after amputation in young and older amputees. Younger patients with average body weight were found to have more lower leg amputations and recovered more quickly. However, regardless of age, persons receiving social support and persons with a positive attitude had the greatest potential for successful rehabilitation and greater QOL. Similarly, Livingstone et al’s12 grounded theory study of five amputees showed the progression of DFUs to amputation caused feelings of powerlessness and fear due to impaired mobility. Resilience depended on available social support and having a positive attitude helped in the adjustment to new lifestyle. A phenomenological study13 conducted in Brazil with 8 patients requiring amputation due to DFUs showed the impact of the hospital experience. Participants reported feelings of abandonment, feeling imprisoned in the hospital room, loss of control, being treated as if diseased, and isolation before and after amputation.
Foot ulcers are a debilitating complication of diabetes mellitus affecting the QOL of both patient and family. Emotional, physical, and social costs are high, especially when a foot ulcer leads to amputation. With the amputation, some patients experience loss of function and are unable to fulfill a place as productive members of society. Individuals with an amputation lose their ability to support their families and themselves.14 Yet health care providers have a limited scope in which to gauge a holistic treatment plan. Gaps in the literature show research is needed to investigate patients’ lived experiences surrounding amputation post DFU.
This study was conducted to explore the lived experience of patients who have had an amputation resulting from a DFU. Knowledge about how patients perceive the loss of a limb and the impact of the amputation on social support, income, function, mobility, recreation, and phantom limb pain can help health care professionals better assist patients in adjusting to changes imposed by limb loss.
A qualitative research design using Colaizzi’s14 step-by-step approach to phenomenology was employed for this inquiry project. The goal of phenomenology is to produce a rich description of the participants’ experiences.15 Colaizzi’s approach includes 10 steps that comprise collecting, recording (in this study, digitally), transcribing, and analyzing face-to-face interview data to identify and organize key elements. Transcripts of interviews were read and re-read multiple times. An audit trail was developed by connecting original transcripts that contained the participant verbatim statements to a 4-column table in which raw transcript verbatim data were recorded, then key words and phrases were identified, meaning units were developed, and overall themes were identified. Experiences were exhaustively described, and the fundamental structure of the phenomenon was identified. The final stage of Colaizzi’s method involves validating study finding.14 Member checking — a strategy used in qualitative research to add to the confirmability of study findings — was employed. Each participant in the study met with the researcher after data analyses were complete to confirm the findings of the study and that conclusions drawn by the researcher represented their experiences.
Setting and sample. The setting for this study was a suburban community in a state in the Northeast region of the US. Purposeful sampling was used to recruit participants within a 5-hospital system. The sample size included up to 15 participants older than 40 years who experienced an amputation after a DFU. The number of participants for this study was based on saturation of the data and redundancy of information. In order to be included in the study, participants had to have had an amputation from a DFU, speak and understand English, be willing to provide written informed consent, agree to participate in a 30- to 90-minute interview, and agree to have the interview digitally recorded. Individuals with cognitive impairment or mental health issues were excluded from the study. Interviews took place in the participants’ homes, an office, or a neutral setting; the selected setting was without distractions and at the convenience of the participant.
Before signing a consent form, the purpose of the study was explained to the participants. Participants were informed of their right to withdraw from the study at any time without reprisal and the right to have any recorded data on the digital tape or transcript excluded from the data analysis process.
Instruments. A semi-structured interview guide comprised of open-ended questions was used to collect data. The questions were designed to encourage participants to share experiences without directing the interview in a specific way. A demographic questionnaire, developed by the researcher, was used to obtain descriptive information about participants. The questionnaire contained 6 demographic-information seeking questions regarding age, gender, marital status, ethnicity, educational level, and type(s) of amputation (see Table 1).
Data collection process. Participants met with the researcher 2 times during the interview process. The second meeting, conducted in person or via telephone, was at the conclusion of data analysis to review findings with study participants to ensure accuracy.
Throughout the interview process, the researcher was sensitive to body language, tone of the interview, and unspoken feelings shown by the participants. Comments regarding noteworthy nonverbal behaviors occurring during the interview were included in the typed transcript. Digital tapes were reviewed immediately after the interview and were transcribed within 24 to 48 hours after the interview by the researcher. The researcher compared the transcripts with the digital tapes for accuracy before Colaizzi’s 7-step approach to data analysis and interpretation was performed.15
Data analysis. Colaizzi’s14 procedural steps included first acquiring a sense of each transcript. The researcher listened to the digital tapes and read participants’ transcripts multiple times to gain a sense of the participants’ experiences.14 Colaizzi’s second step — rereading the transcripts and identifying key words, significant phrases, or statements — was used to extract significant statements. Next, the researcher identified early emerging themes by rereading the extracted data and comparing the extracted raw data to the whole transcript. In step four, formulated meaning was organized into clusters and themes captured using an audit trail to show the meaning units, their arrangements into clusters, and theme labeling. In step five, the researcher began to write an exhaustive description of the lived experience after amputation resulting from a DFU. In step six, the researcher recorded the fundamental structure of the lived experience in terms of the processes and meanings derived from step five in a computer file using typed transcripts, extracting the common threads to establish common themes.
The final stage of Colaizzi’s14 method was to validate the findings of the study. The researcher returned to the participants for final interviews to ensure the data analysis and essential structure of the phenomenon represented their experiences. If participants did not recognize the depicted experiences as accurate, they would be asked to discuss what was not representative of their experience and given an opportunity to expand on the initial interview. However, disparity between a participant’s perspective and the researcher’s findings did not occur and further exploration of participants’ experiences was not warranted. Thus, with all the participants in agreement with findings, validity was ensured. In addition, a second researcher read verbatim transcripts, examined the data abstraction table, and was in agreement with the identified themes.
Trustworthiness. Rigor or trustworthiness must meet the 4 criteria — credibility, dependability, confirmability, and transferability — for a phenomenology research study.15 Credibility and dependability were achieved through rechecking with participants to validate the findings described were true to the participants’ experiences. Confirmability demanded an audit trail, allowing another researcher to follow activities over time. Finally, transferability was important in understanding the research findings fit with any other participant found in a similar circumstance.14 Transferability was achieved by sharing the results of the analysis with an individual external to the study. An external participant who underwent amputation reviewed the results of the study and discussed the experiences as described that were similar to her own personal experiences. Had the external participant’s experience differed from the participants in the study, discrepancies would be reported and reasons sought for the differences. For example, improved socioeconomic status of an individual may influence access to medical care in a more positive way than those who were in this study and were socioeconomically disadvantaged.
Protection of human subjects. Main Line Hospitals (MLH) Institutional Review Board (IRB) Request for Initial Review of Research Project Involving Human Subjects Form MLHIRB was submitted, and approval was received on January 17, 2013. Participants’ names were not used on any transcribed or coded data or in the narrative analysis and report of findings.
Informed consent. The informed consent form contained information about purpose of research, expected duration of participation, description of study, setting, and risks and benefits to the participants, and approval by Main Line Hospitals IRB was obtained. The participant received a copy of the signed consent form.
Participant data. Fifteen (15) participants were interviewed in this study. All participants were adults and ranged in age from 57 to 84 years (mean 71.5 years); the majority (13) were at least 60 years old. Ten were Caucasian and 5 were African Americans. More than half (8) were married; the 7 remaining participants were widowed, divorced, or single, and lived alone. Participants were relatively well-educated; 10 were high school graduates and 5 were college graduates, 3 with a Masters or post-Masters Degree. Nine participants had 2 or more amputations, beginning with 1 toe in an attempt to salvage most of the foot then progressing to more extensive amputations. Eleven participants had a unilateral amputation, and 4 had bilateral foot or leg amputations. Participants with more than 1 amputation underwent surgeries on separate DFU occurrences.
One interview included the participant and his spouse; the spouse provided most of the dialogue due to the participant’s difficulty to speak normal sentences. This participant had memory loss concerning timeline and dates of amputations but was included in the study because his wife was able to provide the information on dates of surgery. Demographic characteristics of the participants are varied (see Table 1).
Themes. The 5 major themes gleaned from this study were financial burden, social support, powerlessness, placing blame, and uncertainty. Each theme was composed of several subthemes; 1 subtheme (grief) was interwoven throughout the 5 themes (see Table 2). Participants grieved over the loss of health and physical and financial independence. The identified themes play a key role in influencing the psychological, sociological, emotional, physical, and functional health of these participants.
Theme 1: financial burden. The theme financial burden emerged from the data and included the subthemes costly medical care, loss of income, inability to support family, and cost of medications and treatments. Participants described their experiences with financial burden that accompanied not only the cost of medical care, but also socioeconomic costs associated with loss of employment. Participants endured the financial costs associated with surgery, recovery, rehabilitation, and in cases with below-knee amputations (BKAs) and above-knee amputations (AKAs), the cost of the fitting of prostheses, and the rehabilitation associated with the prosthetic device. One participant stated:
I’m still paying for it. I said look, I said I can’t give you much, maybe give you $30.00 or $40.00 a month. I don’t have enough money for food.
Another participant shared:
It made me disappointed when I had to quit working. What depresses me about it is I got cut off the 25 years of work potential for making money.
An employed participant shared this perspective on financial burden as related to the cost of copays:
Financially with a different personal choice, I’m paying $32.00 visit copay.
Cost affected the ability for some to access care. One participant, a double amputee who relied on subsidized community transportation assistance, remarked:
And for me, community transit is not free. That hurts in the pocketbook, you know.
Theme 2: social support. Social support was important to the recovery and ongoing needs of the participants and included three subcategories: health care professionals, family, and community. The support of health care professionals gave the amputee a great deal of comfort. One participant stated:
It was amazing to see the doctors and nurses, people came in and the wound people gave me perfect information.
One participant had great appreciation for the professional support and knew he could not have done so well without the surgeon’s dedication. This participant shared:
If it hadn’t been for him, I wouldn’t have this foot. I’m dealing with this.
The support provided by family members helped participants through the emotional turmoil that accompanies amputation. They were relieved when family members were not repelled by the loss of limb. The participants with no family support were often cynical and angry. One participant, a widower, suggested his experience was similar to that of a veteran returning from war without limbs. This participant talked about the effect of amputation on the wholeness of men and the inability to develop relationships and the support of others.
The biggest problem, the biggest obstacle, that people have, particularly men, is how the opposite sex is going to handle a person they’re going to meet with an amputation.
Community support came primarily in the form of transportation to rehabilitation sessions, doctor’s visits, and wound care. One participant’s insurance company denied ambulance services. He was fortunate to have community volunteers who took him to his appointments. Participants felt burdened with worry over public transportation resources and expressed anger and disgust.
I use community transit; they are the pits. That’s one of my real nemeses, community transit.
Theme 3: powerlessness. Participants expressed feelings of powerlessness in their inability to perform self-care and in loss of independence due to immobility, declining health and comorbidities, and loss of body parts. One participant described his anxiety while waiting for a visiting nurse to come to his home.
I was here by myself, and I always was very nervous the first time one of them came.
Theme 4: blame. Several participants expressed self-regret for not seeking timely care; others wished their health care professional was more aggressive in treating the disease and preventing comorbidities. One participant shared his family history of diabetes in this way:
My dad had everything, he had dialysis, high blood pressure, diabetes, and I have the same thing. My twin is diabetic, too.
Another participant blamed her health care provider for not diagnosing her diabetes.
I called him on the phone and told him I could hardly walk on my foot. He said it’s probably your neuropathy… just take your medicine.
One participant talked about having been medicated for diabetes then taken off the medication, which was believed to be the reason for the amputations. Both participant and spouse blamed the cascading events on the health care professional’s decisions, not on the disease. His wife stated:
They called him a borderline diabetic and stopped treating him for diabetes.
Theme 5: uncertainty. Participants experienced uncertainty in a variety of situations, including use of prosthesis, ability to go out with friends or work, and wound care. Some participants stated they had no idea what to expect with rehabilitation. Transitioning through the health care system from outpatient clinic to hospital to rehabilitation was the first of many uncertain steps in participant’s experience.
I started out with 1 toe amputated. Before I knew it the other 4 were being amputated. Right after that they took the whole left foot.
It was the hyperbaric chambers what did me in. It’s kind of scary.
I came out of surgery, I realized that I lost all my toes, and then I realized it was most of my foot. I figured my life was ended.
Five important themes emerged from this descriptive study of persons with a DFU who underwent amputation: financial burden, social support, powerlessness, placing blame, and uncertainty. These five themes are not unique to this study.13
For current study participants, financial burden resulted from copays to lack of insurance coverage that put a strain on the family budget, particularly for the elderly. High copays and out-of-pocket expenses required some participants to choose between food and medical bill payments. All participants relied on healthcare professionals to keep them informed, and most had strong family support. However, a reported lack of community and healthcare professional support caused undue stress when moving through the health system, regardless of care site (eg, hospital, rehab center, nursing home, or at home). Participants blamed themselves as well as the healthcare providers for the need for the amputation. Some participants blamed themselves because they didn’t understand the importance of diabetic foot care or what it entailed. They lacked knowledge of diabetic foot care before, during, and after an ulcer occurred and expressed feelings of “not knowing” and worried about new health problems and unexpected surgery. Others worried about whether they might need more amputations; their fear caused them to delay seeking professional help. Loss of independence after amputation required access to wheelchairs and ambulance services due to immobility, and participants expressed powerlessness in daily activities.
The findings from this study have implications for practice, health care providers, health policy, and research. To reduce anxiety, patients should have a better understanding of each step of surgery. Health care education in caring for amputations, including knowledge of care of the residual limb and the steps to prostheses fitting and future needs, will allow the patient to have more confidence in the provider and alleviate fear and uncertainty. For instance, 1 patient was angry because he did not know he had to get a prescription for his prosthetic limb from a rehabilitation physician, not his own physician. This lack of patient understanding of the process in post-amputation rehabilitation resulted in an unnecessary delay in care.
Further research is needed to determine if health disparity has a commonality between elderly groups, insurance types, socioeconomic levels, and amputation rates and the type of prosthesis the patient is allowed based on mobility and insurance. Research in methods to prevent amputation by monitoring patient self-care with new technology may help in avoiding major limb amputations.
Because the study involved a novice interviewer, some questions may have been asked in a leading way. Another limitation is that all participants lived in the Northeast region of the US and were well-educated; therefore, responses cannot be generalized to all communities or individuals with different education levels. Lastly, the participants were all receiving health care at the time of the study.
DFU-related amputations result in changes in social support, feelings of powerlessness, placing blame on themselves and their caregivers, financial burdens from loss of income, and uncertainty of the future. Health care provider understanding of the patient experience while hospitalized and postdischarge may assist in alleviating fear of seeking medical attention before amputation is the only outcome.11 Amputation counseling of patients should include social support system and financial options for ongoing care to help reduce the uncertainty for these patients and temper the blame placed on themselves and their health care providers. Feelings of powerlessness can be reduced by using the patient-centered approach in recovery from amputation. This is the author’s direct observation of the difficulty in the step-by-step processes of the patient’s journey through the hospital with a DFU, following the surgical removal of the affected limb, to the discharge of patient to home or rehab before receiving a prosthetic limb and finally rehabilitation back to walking. Development of a transitional care model with an interdisciplinary team beginning in the hospital could potentially decrease rehospitalization for amputation complications and support patients throughout the continuum of care. Healthcare policy directed to assist the disabled patient with transportation services may help alleviate worry and financial suffering. As described in the study, 1 patient had to choose between paying bills and healthcare because co-pays were too expensive. Another patient described the decisions to establish a monthly payment until his hospital bills were finally paid. A transitional care program is an excellent way to bring an interdisciplinary team together helping amputees successfully move to the highest level of mobility from hospital to home.
Dr. Foster is a nurse practitioner specializing in wound care, Riddle Hospital, Media, PA. Dr. Lauver is a Professor and Coordinator of the Doctor of Nursing Practice Program, College of Nursing, Pennsylvania State University, State College, PA. Please address correspondence to: DeSales Foster, DNP, CRNP, GNP-BC, CWOCN, Riddle Hospital, 1068 West Baltimore Pike, Media, PA 19063; email: email@example.com.
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