Foot Self-Care Experiences Among Patients With Diabetes: A Systematic Review of Qualitative Studies

Research that explores foot self-care practices and clinical foot care recommendations for persons with diabetes mellitus is limited. Purpose: The aim of this systematic review was to understand the gaps between the American Diabetes Association clinical recommendations on preventive foot self-care and perceptions of and actions taken by patients with diabetes and diabetic foot ulcers (DFUs). Methods: PubMed, the Cumulative Index of Nursing and Allied Health Literature, Cochrane Online Library, Psychological Information Database, and Google Scholar were systematically searched for qualitative research literature published in English from January 1, 2001, to October 21, 2016, using the MeSH terms diabetes mellitus, diabetic foot ulcers, foot care, experiences, and perception to examine the experiences of patients with diabetes regarding foot self-care practices. Publications were screened for inclusion according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses, and The Standard for Reporting Qualitative Research was used to appraise trustworthiness and publication bias. Publication details (author, year, title, country in which the study was conducted, and the type of publication), study aims, design (study methodology, method of sampling, and analysis method), and participant details were abstracted to Excel sheets for analysis of foot self-care experiences and to determine common themes (foot self-care issues) among patients with diabetes. Results: Of the 14 publications identified, 9 (that included 113 patients with diabetes [95 with or history of DFUs and 18 with no DFUs] and 28 health care professionals [14 podiatrists, 8 physicians, and 6 registered nurses]) met the inclusion criteria for analysis. Research included 4 qualitative descriptive design studies, 2 descriptive phenomenology studies, 1 grounded theory study, 1 interpretive phenomenology study, and 1 exploratory qualitative design study. Four (4) studies were found to lack transparency, and 7 studies did not address trustworthiness. The common themes identified were the high clinical and lifestyle burden of DFUs, poor foot self-care knowledge, perception barriers and resistance, adoption of self-management practices, and discordance between patient and provider impressions and expectations. Conclusion: Several barriers to optimal foot care in persons with diabetes with and without foot ulcers were identified and may be explained and addressed by considering the Health Belief Model. Clinical interventions should be individualized to identify and address patient-specific barriers to optimal foot self-care. Future clinical studies are needed to examine the outcomes of individualized interventions.

Diabetic foot ulcers are known to be 1 of the most significant and devastating complications of diabetes mellitus.¹ It is estimated that as much as 25% of patients with diabetes will develop at least 1 foot ulcer in their lifetime.^2,3 Despite medical treatment and patient-directed foot care interventions, retrospective research studies^2-4 have shown that most DFUs result in high levels of morbidity such as reulceration, lower extremity amputations, impaired quality of life, severe pain, prolonged hospitalization, and financial burden. With the increasing incidence of type 2 diabetes in the United States, DFU rates will rise and consequently impact patients, their families, communities, and society through corresponding costs. Prevention of DFUs is paramount.
Preventive foot self-care practices such as daily foot inspection, toe and nail care, and foot hygiene (daily washing of feet and avoiding walking barefoot) are recommended as part of the American Diabetes Association’s^1,5 (ADA) Standards of Medical Care in Diabetes (hereafter referred to as “ADA Standards of Care”). Per the ADA Standards of Care, foot care recommendations for providers include obtaining a thorough history, performing an annual comprehensive foot assessment, inspecting feet at every clinical visit, referring high-risk patients for foot care and to multidisciplinary specialists, and offering specialized therapeutic foot wear. Evidence from a number of randomized controlled trials^5-7 (RCTs) showed preventive foot self-care practices are effective in preventing DFUs and amputations among patients with diabetes, especially those at high risk for DFUs.⁸

However, despite the preventive foot care recommendations highlighted in the current standards of care for patients with diabetes and the evidence showing foot self-care practices prevent DFUs, an integrative review study⁹ and a descriptive qualitative study¹⁰ have shown poor patient adherence to foot care recommendations. A qualitative research study¹¹ specifically highlighted the gap that exists between what health care providers recommend and the actual actions taken by patients with diabetes.

Previous patient teaching initiatives have shown limited success and demonstrated patients rarely follow foot care recommendations, suggesting that patient teaching does not always translate to actual foot self-care practices.^10,12  Although evidence that explores patient perceptions of foot self-care and clinical foot care recommendations is limited, clinicians need to understand the factors influencing patient ability to care for their feet. Educational intervention alone seems to be inadequate to facilitate behavioral change, as shown in a systematic review¹² that found knowledge alone is insufficient in promoting adherence to foot care recommendations. Therefore, it is important for clinicians to determine whether patients’ perception or experiences affect their response to foot care recommendations.

The purpose of this study was to review available qualitative research on perceptions of patients with diabetes regarding foot self-care practices to identify unknown perceptions that may be critical to future interventions that promote adherence to recommended foot self-care practices.

A systematic review of the literature was conducted in accordance with the code of practice as set out in the Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) statement.¹³ Literature searches were limited to peer-reviewed, full-text, qualitative studies in English published between January 1, 2001, and December 31, 2016. Publications that addressed patients with diabetes and chronic surgical wounds were excluded.

Study characteristics. Assessment considerations included study eligibility criteria, information sources, search strategy, study selection, data items, and analysis of methodological quality.
 

Eligibility criteria. Study populations included adults with type 1 or type 2 diabetes, 18 years of age and older, with or without DFUs.

Information sources. The literature search was conducted using the United States Library of Medicine (PubMed), Cochrane Online Library (Cochrane), Psychological Information Database (PsychInfo), Google Scholar, and the Cumulative Index of Nursing and Allied Health Literature (CINAHL). Search terms were tailored to each database. Free text also was utilized for terms not yet assigned to Medical Subject Headings (MeSH). These databases were selected due to the large volume of evidence-based scholastic and peer-reviewed publications available.
Electronic search strategy. PubMed was searched using MeSH terms in a 4-step process: (diabetes mellitus AND diabetic foot ulcers AND [foot care OR foot care], AND [experiences OR perceptions]). Filters were applied for language (English) and publication date (January 1, 2001, through December 31, 2016).  

The CINAHL database was searched using CINAHL medical headings to ensure that all the main terms and variables in the topic were thoroughly explored: (diabetes mellitus AND diabetic foot ulcers AND [foot care OR foot care], AND [experiences OR perceptions], AND [qualitative studies OR qualitative research]). Filters were applied for language (English) and publication date (January 1, 2001, through December 31, 2016).

A search of the Cochrane Online Library also was conducted using title, abstract, and keywords to widen the search for any eligible studies that could have been overlooked, searching for: (diabetes mellitus [Title, Abstract, Keywords] AND diabetic foot ulcers [Title, Abstract, Keywords] AND foot care OR footcare [Title, Abstract, Keywords] AND experiences OR perceptions [Title, Abstract, Keywords] AND qualitative studies OR qualitative research [Title, Abstract, Keywords]).

Psych-INFO was searched using medical titles and keywords in a 4-step process: (diabetes mellitus AND diabetic foot ulcers AND [foot care OR foot care], AND [experiences OR perceptions] AND qualitative studies OR qualitative research). Filters were applied for language (English) and publication date (January 1, 2001, through December 31, 2016).

Additional searches of Google Scholar and Google were conducted with the combination of the keyword terms diabetes mellitus and diabetic foot ulcers and foot care or foot care and experiences or perceptions.  

Study selection. The title and abstract of each article were initially reviewed to determine whether inclusion criteria were met; if so, the full text was reviewed. Figure 1 illustrates the number of articles identified, included and excluded, and the reasons for exclusions.

Data. Relevant data from the article were extracted and saved into an Excel  database. This information included publication details (author, year, title, country in which the study was conducted, and the type of publication), study aims, design (study methodology, sampling method, and analysis method), and participant details (number of participants interviewed and population characteristics including age, race, ethnicity, and gender). Limitations of the study also were noted. Study characteristics are cataloged as data items in Table 1.

Trustworthiness and rigor. The core criterion to be evaluated in qualitative studies is researcher bias via an analysis of rigor, trustworthiness, reflexivity, and the reader’s judgment.¹⁴ The Cochrane Collaboration recommends that researchers use a specific tool to assess the risk of bias in each included study in a review and the extent to which results of included studies should be believed.¹⁵ Studies were assessed using the Standard for Reporting Qualitative Research (SRQR),¹⁶ which is used to improve transparency by providing clear standards for reporting. SRQR addresses 21 elements to assess the quality of qualitative research studies; each SRQR item was awarded 1 point. Scores below 15 points indicate a lack of rigor and transparency.
Believability in this context referred to the ability and efforts of the researcher to make his or her influence and assumptions clear and to provide accurate information about the extent to which the findings of a research report are valid. Details of how SRQR was used to evaluate trustworthiness of each study are presented in Table 2.

Data analysis and theme development. The qualitative studies were analyzed using thematic synthesis. Coding the primary findings of each study enabled the author to capture and describe the content of the primary findings of each study. The verbatim findings from all included studies were inductively coded into related areas to construct and identify key themes and to develop descriptive themes that would bring together and integrate findings similarly emerging across most of the studies included. A draft summary of the findings across the studies was organized into 4 common descriptive themes.

Using the search term diabetes mellitus in PubMed yielded 353 111 publications; adding diabetic foot ulcers reduced the number of articles to 6807, including foot care OR footcare into the search terms reduced the number of the articles to 506, and adding experiences or perceptions significantly reduced the numbers of articles to 5. Limiting the search to papers published in English brought the number of articles eligible for analysis to 4, and limiting the inclusion to studies conducted among adults resulted in 2 articles. This process was repeated in the other literature databases and yielded 12 studies that qualified for full text review; the final numbers were 2 from PubMed, 5 from CINAHL, 1 from Cochrane, and 4 from Google Scholar. Three (3) were excluded for not addressing foot care in persons with diabetes, leaving 9 peer-reviewed, qualitative research studies. Details of the initial search results and refined inclusions are presented in Figure 1. Characteristics of the included studies are outlined and summarized in Table 1, and outcomes from each study are reported in Table 3.
Study characteristics.
 

Design. The 9 full-text articles included 113 patients with diabetes (95 patients with DFUs or a history of DFUs and 18 with no DFUs): 4 were qualitative descriptive design,^9,11,17,18 2 were descriptive phenomenology studies,^19,20 1 used a grounded theory design,²¹ 1 used an interpretive phenomenology,²² and 1 used an exploratory qualitative design.²³ Analysis of the transparency of the reviewed studies according to SRQR showed 4 studies scored below 15, indicating a lack of transparency. Only 2 studies critically appraised the issue of trustworthiness.^19,20 All other studies failed to report the issues of trustworthiness; thus, findings from these studies should be interpreted with caution.
 

Location. Study location varied; 4 studies were conducted in the United Kingdom, 1 in the US, and 1 each in South Africa, Jordan, Iran, and Barbados. All 9 studies sampled adults with diabetes; 3 also assessed provider perspectives.^{17 21,23}  
 

Participant characteristics. Clinically, participants included 18 individuals with diabetes and without foot ulceration⁹ and 95 individuals with diabetes who had open or healed ulcers^12,13,15,16; 16 participants had undergone DFU-related amputations.^18,19
 

Themes. The themes identified from all the studies included DFUs as a burden, poor knowledge and perception about foot self-care practices, nonadherence to foot care recommendations, and engaging in risky self-management practices. In general, participants’ perceptions of foot self-care differed from their providers and from the standard of care guideline recommendations.
 

DFUs as a burden. Findings indicate that patients with DFUs suffered depression, anxiety, and fear of re-ulceration, the threat of amputation, the slow healing process, taking medication, loss of independence, and lifestyle limitations,^17,19 while others felt serious anger resulting from an inability to fulfill their social roles²² and emotional pain related to immobility and the fear of amputation.¹⁷ Some authors reported that participants felt hopeless and perceived a loss of social support in their struggle to prevent re-ulceration.^18,19,21 Patients with healed DFUs often felt a lack of control to prevent re-ulceration due to their perception of foot care being frustrating and overwhelming.¹⁸
 

Poor knowledge and perception about foot self-care practices. Results also showed that some patients with diabetes did not practice foot self-care because of their perceptions and beliefs about foot self-care.^19,22,23 For example, study participants often did not feel a need for foot self-care because they perceived foot self-care as less important compared to glycemic control, felt it was unnecessary, and did not understand why it is important to care for their own feet.^21-23 Others lacked knowledge or information about foot self-care^17,19,22 and/or misinterpreted foot self-care information from their providers.^17,21,22 The studies reviewed also suggested that patients with diabetes have poor foot self-care knowledge and often do not pay attention to foot self-care education provided by the health care providers.^9,19,21 For instance, some patients with diabetes and DFUs believed that podiatrists would heal their ulcers, making it unnecessary to take action for themselves.¹⁷ A substantial number of participants reported lack of knowledge of the necessity of foot self-care practices and what to do, and were, in part, responsible for their inability to practice foot self-care.^17-19  

Nonadherence to foot care recommendations. Findings indicated that patients were less likely to adhere to treatment recommendations that conflicted with their usual or preferred lifestyles.^9,17,19,22 For example, despite agreeing that foot rest was one of the best remedies for foot ulceration, a few patients with DFUs were not able to rest their feet as recommended because they perceived it as uncomfortable.¹⁷ Additional reasons for not following foot care recommendations included not believing such care was necessary^17,18 or not appreciating their feet could be injured.^21,23 Similarly, some patients with DFUs believed that DFUs are a spiritual, and not a medical, problem.²⁰ For instance, most participants in 1 study perceived DFUs as a spiritual problem mostly caused by witchcraft, ancestry, or God and not by lack of foot self-care.²⁰

Engaging in risky self-management practices. Most patients in the reviewed studies based their foot treatment regimen on their personal health care beliefs; these included self-management practices such as rubbing their feet with olive oil, applying ointments on DFUs, inserting their feet in cold salted water,¹³ soaking feet in hot water,²⁰ and/or wiping feet daily with surgical methylated spirit.¹¹ Wiping the feet daily with surgical methylated spirits can cause skin dryness and predispose the skin of the feet to ulceration.¹¹ None of these practices are included in the foot self-care guidelines recommended by the American Diabetes Association.⁵ Most patients in the reviewed studies sought self-management strategies with the goal of comfort, cure, and preventing DFUs, despite the fact that some practices inadvertently increased their risk of developing a foot ulcer.^11,20,21

Discordance between patient and provider impressions and expectations on foot self-care. Three (3) studies compared patient and provider perspectives on recommended foot self-care practices, demonstrating that patients’ interpretations of foot care information were sometimes different from what was intended by providers.^17,21,23 Both patients and podiatrists identified barriers to effective foot self-care. For example, some podiatrists reported that some patients with diabetes and foot ulcers irresponsibly neglected to care for their feet, often did not follow foot self-care recommendations, and should be blamed for their foot complications, given that they received training on foot self-care.^17,21 On the other hand, some podiatrists acknowledged that the advice given to patients with DFUs is often difficult to follow and was believed to decrease adherence.¹⁷ An emphasis on tight glycemic control was reported to dominate the thinking both of health professionals and patients, deeming other aspects of diabetes care, including foot care, into less of a priority.²³ Health care professionals also reported patient resistance to foot self-care, while patients blamed their providers for not providing access to quality foot care services.^21,23 Patients also believed they had not received enough training and support from health care professionals who primarily blame the patient for the DFU, citing patients’ lack of knowledge, lack of attention to self-foot care education provided, and no adherence to foot self-care recommendation provided.^17,21,23 For example, podiatrists in 1 study reported that although patients with DFUs agreed that foot rest was one of the best remedies for foot ulceration, few patients rested their feet as much as recommended.¹⁷ In this same study, patients with DFUs reported they expected their podiatrists to cure their DFUs and did not feel it was necessary to take actions for themselves.

This study reviewed the literature to understand the gaps between clinical recommendations on preventive foot self-care practices and patient actions. Findings from this study suggest that patients with diabetes face significant barriers to following foot care recommendations from health care professionals.^17,19,21,23 The patients’ lack of knowledge or understanding, as well as their perspectives about foot self-care and DFUs, adversely affected their behavior toward recommended foot self-care practices.^19,22,23 Because patients lacked understanding about and/or knowledge of foot self-care, they neglected foot self-care recommendations and/or were unable to care for their feet.^9,17-19,21 As such, patient behavior regarding foot self-care may lead to foot complications. These observations are similar to findings from a cross-sectional descriptive study²⁴ focused on other chronic health conditions, such as hypertension and asthma, which showed that lack of self-care knowledge leads to more serious complications.

In general, significant gaps seem to exist in the way foot care recommendations are communicated to patients with diabetes in the clinical environment. This may be a problem of health literacy affecting patients’ understanding of foot care recommendations in clinical settings. The Centers for Disease Control and Prevention²⁵ define health literacy as the degree to which an individual has the capacity to obtain, communicate, process, and understand basic health information and services to make appropriate decisions. Poor health literacy may influence patient understanding of information delivered by providers^18,26; a patient with poor health literacy has difficulty understanding written information  provided. The current study findings underscore the need to promote consistent delivery of diabetes education as it relates to foot care or, in general, in consideration of individual patients’ level(s) of health literacy to facilitate behavioral change. On the other hand, it is vital for health care professionals to develop effective oral communication and patient-teaching skills because effective oral communication from a provider is an important aspect of patient care and has a profound effect on the patient’s perceptions of health care quality and treatment outcomes.²⁷ Additionally, the use of health communication principles (eg, plain language), digital technology, text messages, and web-based tools have all been shown to engage patients with diabetes and improve diabetes-related outcomes.²⁷

Patients with diabetes have varied perceptions and beliefs about foot self-care that affect their foot self-care practices.^11,13,20,23 Adherence to foot self-care recommendations is poor due to patients’ perceptions about prevention versus cure as it affects their foot self-care practices,^11,21,22 a finding that also aligns with findings both from an integrative review10 and a focus group study.²⁸

he Health Belief Model²⁹ (HBM) assumes that individual beliefs and perceptions determine health behaviors and may help explain why individuals do or do not perform preventive health actions. The primary constructs of the original HBM include perceived susceptibility, severity, benefits, and barriers, as well as self-efficacy.²⁹ The HBM can be used to explore how patients with diabetes perceive the benefits of engaging in recommended foot self-care practices (perceived benefits) or the belief in their ability to care for their feet as recommended by their health care providers (self-efficacy). In addition, perceived barriers to recommended foot self-care practices can affect patient health behaviors such as foot self-care practices. For example, findings from the current study suggest that patients with diabetes and DFUs rarely follow foot care recommendations when they believed foot care recommendations conflicted with their preferred lifestyles.^9,17,19,22 This finding is congruent with findings from other research studies demonstrating that patients with diabetes and DFUs sometimes choose to disregard health care provider recommendations, especially if those recommendations conflict with their preferred lifestyles.²⁸ A cross-sectional survey study³⁰ found perceived barriers are the main obstacles to adopting self-care activities among women diagnosed with type 2 diabetes.

In the studies reviewed, some patients with diabetes ignored foot self-care practices because they did not believe their feet were susceptible to injury.^2,21 According to the HBM, perceived susceptibility prompts people to adopt healthier behaviors because the greater the perceived risk, the greater the probability of engaging in behaviors to reduce the risk. In this study, patients’ perception of foot self-care as unnecessary and less important may be responsible for their negligent behaviors toward foot self-care practices.^17,19,21,22 This finding is consistent with findings from a longitudinal study³¹ that analyzed differences over time in patients with newly diagnosed type 2 diabetes and found that the presence of a DFU made no difference in adherence to care recommendations. However, findings from a systematic review³² argued that only patients with diabetes and without foot ulcers lacked understanding about foot self-care. Therefore, it is uncertain whether experiencing a DFU prompts greater opportunities for learning, understanding, and adherence to foot self-care among patients with diabetes.

One of the studies reviewed²³ reported that patients with diabetes and DFUs considered foot self-care less important than glycemic control. Evidence from an integrative, systematic literature review¹⁰ identified perceived importance as an enabler of foot self-care practices. Therefore, perceived importance of foot self-care practices is a significant determinant as to whether patients will embrace or ignore recommended foot self-care practices. Future interventions may be tailored toward changing patients’ perceptions and responses to foot self-care recommendation.

In the studies reviewed, 3 studies compared the perceptions of health care providers, especially podiatrists, to perceptions of patients with diabetes on recommended foot self-care.^17,21,23 Both patients with diabetes and their health care providers identified they did not consider foot care a priority. Health care providers believed patients with diabetes are resistant to self-foot care recommendations and are to be blamed for their foot complications, given they received foot care education. On the other hand, some patients with diabetes blamed their health care providers for not providing quality access to foot care services.²³ An integrative review³³ supports that health care providers struggle to meet evolving treatment targets  given current time and resource restrictions and are frustrated with patient adherence to treatment recommendations.
Although patient teaching is important, it seems that barriers to improving foot self-care are amenable to behavior change both from patients with diabetes and their health care providers. Before health care professionals can obtain desired outcomes in promoting adherence to recommended foot self-care, it would be beneficial to identify perceived barriers to foot care education among health care professionals to facilitate ongoing training on current best practices and recommendations for foot self-care education to appropriately care for their patients with diabetes. It is important to identify and address perceived barriers to communication about foot self-care between patients and their providers in order to improve patient adherence to medical plans, account for differences between provider expectations and patient expectations, and ensure that the importance of foot self-care are understood.

To date, educational interventions have been focused on improving knowledge without considering patients’ beliefs and perceptions about foot self-care practices. This study underscored the need to identify and address perceived barriers to communication about foot self-care between patients and their providers in order to address barriers and improve patient adherence to recommended foot self-care practices. Until further barriers to patient teaching and education in clinical settings are addressed, health care professionals would continue to focus on the patient alone, which has been found to be ineffective in promoting adherence to recommended foot self-care practices.¹² In clinical practice, patients’ level(s) of health literacy needs to be considered when designing written teaching interventions on foot self-care. Teaching interventions that are not well-designed and written at high literacy levels may be barriers to understanding and practicing foot self-care recommendations. Therefore, it is important to provide understandable and accessible information to all patients with diabetes, irrespective of their literacy or education levels. Findings from a cross-sectional survey study²⁴ recommend that health care providers determine their patients’ levels of literacy and then provide understandable and accessible information for patients to make appropriate health decisions. Such educational interventions would accommodate individuals with diabetes and low health literacy and may promote self-efficacy with positive effects on foot self-care.

Future interventions should primarily focus on assessing patient-health care professional barriers to foot care recommendations and on tailoring interventions to address barriers in order to promote adherence to recommended foot self-care practices. Moreover, interventions should shift focus to addressing perceptions that can facilitate positive behavioral change toward foot self-care practices. Additional research is warranted to compare patients’ perceptions to their providers’ perceptions to close the gap between patient and health care professional expectations and to provide additional recommendations for clinical practice.

The inferences that can be drawn from this review are limited by the quality and quantity of available evidence. Because the studies were conducted in different countries with different cultures, any conclusion drawn should be viewed with caution. Moreover, essential data such as patient comorbidities or rate of re-ulceration were not reported in all studies. The main disadvantage of qualitative studies is that their findings cannot readily be extended to wider populations. Therefore, the results of this systematic review should be interpreted with this limitation in mind.

A systematic review of the relevant literature identified 9 qualitative research studies, yielding a pooled population of 113 patients with diabetes, with or without DFUs. Evidence from this study showed that the health perceptions of patients with diabetes impacted their foot self-care. This study found there is substantial poor knowledge and/or perception about foot self-care practices among patients with diabetes, with or without DFUs. Despite the available foot care recommendations, some patients are nonadherent to these recommendations and prefer to engage in risky self-management practices capable of increasing their risk of developing a foot ulcer. There is substantial discordance between patient and provider impressions and expectations on foot self-care and significant gaps and barriers in the way foot-care recommendations are communicated to patients with diabetes in the clinical environment. Promoting adherence to foot self-care recommendations will require clinical interventions that identify and address perceived barriers to communication between patients and their health care providers. Interventions should be individualized and offered at appropriate literacy level to focus on perception and behavioral change toward foot self-care practices. Focus needs to be shifted from the usual practice of patient teaching to identifying the best methods of clinical interventions for each individual patient aimed at reducing barriers, changing perceptions, and enhancing behavioral response to foot self-care recommendations.

Dr. Oni is an assistant professor of nursing, Oregon Health & Science University School of Nursing, La Grande, Oregon. Please address correspondence to: David Oni, PhD, MSN, RN, Oregon Health & Science University School of Nursing, 301G Badgley Hall, One University Boulevard, La Grande, OR 97850; email: onid@ohsu.edu.