A qualitative study of the experience of lower extremity wounds and amputations among people with diabetes in Philadelphia

Abstract

The purpose of this study was to explore perceptions among people with type 2 diabetes about foot ulcers and lower extremity amputations. This was a qualitative observational study utilizing open-ended, semistructured interviews of 39 people with diabetes who were purposively selected because they had either a foot ulcer (n = 19) or a lower extremity amputation (n = 20). Interviews were audio-recorded, deidentified, and entered into NVivo 10.0 for coding and analysis. Our integrated analytic approach combined inductively and deductively derived codes that were applied to all transcripts. Coded data were summarized and examined for patterns. Participants' description of the relationship between diabetes and their foot ulcer or amputation revealed a limited understanding of the disease process. Disruption and loss of independence was expressed whether the person had a foot ulcer or an amputation. Treatment recommendations for foot ulcers were viewed by most as extremely difficult. Amputation was a feared outcome, but some learned to adapt and, at times felt that the amputation enhanced their quality of life. Clinicians have assumed that a focus on limb salvage is preferred over a major amputation. However, because of the complexity of care requiring frequent healthcare provider visits, the frequency of care failure, the frequency of recurrence, and mortality associated with having had a foot ulcer, it may be more appropriate for clinicians to prioritize quality-of-life salvage. Foot ulcer treatment failure may be due to a lack of providers' understanding of the impact of treatment on a patient's life.

Reasons for (non‐)adherence to self‐care in people with a diabetic foot ulcer

“…Rather than one action, recommended self‐care consists of multiple parts, and all need to be performed daily and over long periods of time. This has been described in another study as “extremely difficult.” Our findings partly confirm this, but take the research one step further by also describing facilitators and participants’ solutions to this barrier. However, it is important to realize, for both researchers and clinicians, that this is an additional task, implied by the presence of the foot ulcer, on patients who are already caring in a complex and erratic environment .…”

“…Social and economic factors play a major role in diabetic foot ulcer self‐care adherence and this takes various forms. The most important here is the reliance of patients on caregivers for their self‐care, in line with experiences described in another study . The personal circumstances of patients should therefore always be taken into account and access to paid caregivers should be improved.…”

“…With adherence to diabetic foot self‐care being a multifactorial and complex process and influenced by individual experiences and the places where people live, better understanding of diabetic foot ulcer self‐care adherence requires research with a range of methods, both qualitative and quantitative, to reflect the multifactorial nature of adherence . This can also be seen from a qualitative study in this population, where disruptions and adaptations during foot ulcer care are described . The rich descriptions from this study underline the importance of qualitative methods; however, since they did not investigate self‐care adherence, nor any of the factors or dimensions related to self‐care, qualitative research on this topic remains needed.…”

“…This diabetic foot ulcer self‐care typically consists of wearing an offloading device at all times, changing wound dressings, and frequently checking the ulcer for infection or deterioration. For diabetic foot ulcers to heal, adherence to this self‐care is crucial, but these recommendations have been described as extremely difficult …”

Promoting Self-Care of Diabetic Foot Ulcers through a Mobile Application: A User-Centred Design and Evaluation (Preprint)

“…The carer of participant 4 also joined the interview to provide an additional perspective. All participants owned smartphones, but only six of them regularly used apps on their phone (P1, 3,4,5,6,8).…”