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.