diabetic foot thesis pdf

An official website of the United States government

The .gov means it’s official. Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

The site is secure. The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

• Publications
• Account settings

Preview improvements coming to the PMC website in October 2024. Learn More or Try it out now .

• Advanced Search
• Journal List
• Int Wound J
• v.16(1); 2019 Feb

Perceptions and experiences of diabetic foot ulceration and foot care in people with diabetes: A qualitative meta‐synthesis

Laura coffey.

1 Department of Psychology, Maynooth University, Maynooth Co. Kildare, Ireland

Conor Mahon

2 School of Nursing and Human Sciences, Dublin City University, Dublin Ireland

Pamela Gallagher

Diabetic foot ulceration (DFU) is a common and debilitating complication of diabetes that is preventable through active engagement in appropriate foot‐related behaviours, yet many individuals with diabetes do not adhere to foot care recommendations. The aim of this paper was to synthesise the findings of qualitative papers exploring diabetic people's perceptions and experiences of DFU in order to identify how they could be better supported to prevent ulceration or manage its impact. Five databases (MEDLINE, PsycINFO, CINAHL, EMBASE, Web of Science) were searched in May 2016 to identify eligible articles. Findings were synthesised using a meta‐ethnographic approach. Forty‐two articles were eligible for inclusion. Synthesis resulted in the development of five overarching themes: personal understandings of diabetic foot ulceration ; preventing diabetic foot ulceration: knowledge, attitudes, and behaviours ; views on health care experiences ; development of diabetic foot ulceration and actions taken ; and wide‐ranging impacts of diabetic foot ulceration . The findings highlight various barriers and facilitators of foot care experienced by people with diabetes and demonstrate the significant consequences of ulcers for their physical, social, and psychological well‐being. The insights provided could inform the development of interventions to promote foot care effectively and provide appropriate support to those living with ulceration.

1. INTRODUCTION

Diabetic foot ulceration (DFU) is among the most common and debilitating complications of diabetes, with a lifetime incidence of up to 25% in people with this condition. 1 DFU represents a major health problem in this population because of its deleterious impact on physical and psychosocial functioning 2 and increased risks of DFU recurrence, 3 amputation, 1 and mortality. 4 Treatment is expensive and challenging, often involving prolonged hospitalisation and complex medical procedures. At least one‐third of direct costs generated by the treatment of diabetes and its complications in the United States is linked to DFU. 5 The personal, societal, and economic costs of DFU, coupled with the rapidly increasing prevalence of diabetes worldwide, 6 highlights the importance of developing effective prevention strategies and supports.

DFU is multifactorial in causation, usually resulting from interactions between biological risk factors (eg, peripheral neuropathy) and foot‐related behaviours (eg, wearing ill‐fitting shoes). It is estimated that at least 75% of all cases could be avoided through high‐quality preventive care. 7 The patient's active engagement in foot care is a cornerstone of successful prevention. 8 , 9 Key behaviours that reduce the risk of developing DFU include daily inspection of feet and immediate reporting of irregularities to a health professional, avoidance of behaviours that place the foot at risk (eg, walking barefoot), consistent use of appropriate footwear, and attendance of annual foot screening. 9 , 10 However, many individuals with diabetes do not practice these behaviours. 8 , 11 , 12 For example, almost two‐thirds check their feet rarely if at all, 8 and few adhere to footwear recommendations. 13 , 14

The importance of the patient's perspective in successfully promoting engagement in foot care has been widely noted. 2 , 8 , 15 Although national and international guidelines on the management of the diabetic foot strongly emphasise educating patients in appropriate foot self‐care, 8 , 9 the efficacy of existing interventions is limited; this has been attributed to their inattention to the psychosocial processes underlying foot‐related behaviours. 2 Exploring patients' views and experiences of DFU may help to further our understanding of the factors that contribute to their engagement in foot care, identify targets for interventions that will effectively promote these behaviours, and ensure that recommendations for practice fit with their needs and personal interpretations of this condition.

A meta‐synthesis involves drawing together the findings of qualitative studies in order to build a more in‐depth understanding of a specific phenomenon and is being used increasingly to inform health‐related policy and practice. 16 The aim of the present review is to conduct a meta‐synthesis of qualitative studies exploring the perceptions and experiences of individuals with diabetes regarding DFU. It is anticipated that our findings will offer useful insights on how individuals with diabetes could be better supported to prevent, or manage the impact of, DFU.

2.1. Search strategy

MEDLINE, PsycINFO, CINAHL, Embase, and Web of Science databases were searched from inception to 11 May 2016 (see Appendix for a sample search strategy). A comprehensive list of qualitative methodology search terms was included to maximise the identification of relevant articles. 17 Reference lists of eligible papers were hand‐searched for additional material. Two authors (L.C. and C.M.) screened titles and abstracts for relevance and independently reviewed the full texts of potentially eligible papers. Any disagreements were discussed and brought to a third author (P.G.) if consensus could not be reached.

2.2. Selection criteria

Papers were included if they (a) included a sample of adults (ie, aged 18 years+) with diabetes and explored their perceptions and/or experiences of DFU, (b) used qualitative methods of data collection and analysis, (c) were written in English, and (d) were published in a peer‐reviewed journal. Papers were excluded if (a) they included individuals without diabetes in their samples and did not report findings for participants with diabetes separately or (b) their qualitative findings lacked sufficient detail to contribute meaningfully to the synthesis (ie, no themes reported).

2.3. Quality assessment

The quality of included papers was assessed independently by two authors (L.C. and C.M./P.G.) using the Critical Appraisal Skills Programme (CASP) qualitative research checklist. 18 CASP considers the rigour and credibility of evidence in eight areas: research design, recruitment, data collection, reflexivity, ethical issues, data analysis, findings, and value of the research. Reviewers used a three‐point rating system 19 to assign scores based on whether the paper being assessed was considered to provide a weak (a), moderate (b), or strong (c) explanation of each area. Any differences between scores were resolved through discussion and reference to a third reviewer (C.M./P.G.) if required. Scores were summed for each paper, giving a possible score of 8 to 24. Papers were not excluded on the basis of their scores; reviews were conducted to aid readers' critical consideration of their credibility.

2.4. Data synthesis

A meta‐ethnographic approach, 20 , 21 which has been applied extensively in health care research on patient experiences of illness and care, 16 was used to synthesise data. The Enhancing Transparency of Reporting the Synthesis of Qualitative Research (ENTREQ) statement 22 was followed. Eligible papers were read and re‐read by L.C. and C.M.; their details were recorded by C.M. using a data extraction form. A table of first‐ and second‐order constructs relevant to the aim of the meta‐synthesis was compiled for each paper by L.C. First‐order constructs are study participants' interpretations of their experience (ie, direct quotations); second‐order constructs are study authors' interpretations of participants' accounts. Using these tables, L.C. grouped conceptually similar constructs from different papers together to identify key concepts (ie, common and recurring themes). A grid of key concepts was then produced and used to develop third‐order constructs (ie, the views and interpretations of the synthesis team, expressed in terms of higher‐order themes and sub‐themes). L.C. led the synthesis; third‐order constructs were confirmed independently by C.M. and P.G.

3.1. Study selection

The systematic search yielded 1539 results excluding duplicates, of which 1386 were excluded at title/abstract. Full texts of the remaining 153 articles were obtained; 114 were excluded upon reading. Three additional papers were identified from the reference lists of included papers. Overall, 42 articles 23 , 24 , 25 , 26 , 27 , 28 , 29 , 30 , 31 , 32 , 33 , 34 , 35 , 36 , 37 , 38 , 39 , 40 , 41 , 42 , 43 , 44 , 45 , 46 , 47 , 48 , 49 , 50 , 51 , 52 , 53 , 54 , 55 , 56 , 57 , 58 , 59 , 60 , 61 , 62 , 63 , 64 reporting the findings of 35 qualitative studies were selected for inclusion (Figure ​ (Figure1 1 ).

Flow diagram of article selection process

3.2. Study characteristics

The characteristics of included papers are summarised in Table ​ Table1. 1 . The majority were based on research conducted in the United Kingdom (n = 18); the remaining papers originated from Sweden (n = 4), the United States (n = 3), Australia (n = 2), Brazil (n = 2), Jordan (n = 2), Norway (n = 2), Barbados (n = 1), Bermuda (n = 1), Canada (n = 1), France (n = 1), Iran (n = 1), Ireland (n = 1), South Africa (n = 1), and Uganda (n = 1); one included participants from Germany, Italy, and the United Kingdom. Sample sizes were reported in all but one paper 26 and ranged from 3 to 67. DFU status varied across studies, where reported. In 32 papers, all participants had previous or current diabetes‐related foot complications. In five papers, some (n = 4) or all (n = 1) participants were described as having no history of ulceration; five papers did not specify participants' foot health status. Thirty‐three papers used interviews as their primary method of qualitative data collection, six used focus groups, and three incorporated both methods.

Characteristics of included papers

CASP, Critical Appraisal Skills Programme; DFU, diabetic foot ulceration; GP, general practitioner.

3.3. Quality assessment

CASP total scores for each paper are provided in Table ​ Table1. 1 . The quality was good overall but varied considerably across papers, with scores ranging from 10 to 21 of a possible 24 ( M  = 16.43, SD = 2.81, median = 17). In the eight areas assessed, ratings were generally the lowest for reflexivity and highest for quality of findings and value of the research.

3.4. Data synthesis

Synthesis resulted in the identification of five overarching themes: (a) personal understandings of DFU, (b) prevention of DFU: knowledge, attitudes, and behaviours, (c) views on health care experiences, (d) development of DFU and actions taken, and (e) wide‐ranging impacts of DFU. These themes and their sub‐themes are outlined in Table ​ Table2, 2 , along with illustrative quotations from participants and a list of the papers that contributed to their development.

Qualitative synthesis: Themes, sub‐themes, and inclusion in papers

DFU, diabetic foot ulceration; USD, United States Dollar; GP, general practitioner.

3.4.1. Personal understandings of DFU

Several papers explored participants' knowledge and perceptions of DFU, which revolved around its identity, cause, timeline, consequences, and controllability. Overall, participants' comprehension of DFU was often either limited or erroneous. This had the effect of impeding attempts at self‐care and resulted in participants exposing their feet to greater risks in some cases.

Some participants, including those with previous 28 , 31 , 34 or active 61 ulceration, lacked awareness as to what DFU is or looks like. 28 , 31 , 34 , 40 , 61 This hindered foot self‐care 28 and delayed both ulcer detection 28 , 34 , 61 and seeking of medical attention, 28 , 34 putting the foot at increased risk for negative sequelae.

Participants' beliefs regarding DFU causation often conflicted with conventional medical understanding of this condition. Many were unaware, or had limited knowledge, of the role diabetes plays in DFU aetiology, irrespective of their ulceration status. 24 , 25 , 26 , 31 , 34 , 35 , 36 , 37 , 40 , 43 , 45 , 46 , 51 , 52 , 56 , 61 , 64 Some only received a diagnosis of diabetes on presenting with an ulcer, 24 , 25 , 56 while others did not become aware of the relationship between diabetes and foot problems until seeking treatment for ulceration. 37 Several participants cited poor circulation as the primary cause of DFU/amputation. 26 , 31 , 36 , 40 , 43 , 45 , 56 , 61 Loss of sensation from peripheral neuropathy was sometimes misinterpreted as reduced blood flow to the feet, 40 , 56 , 61 leading to misunderstandings regarding the purpose of tests to assess peripheral sensation 61 and misguided attempts to increase circulation by walking barefoot or wearing open‐toed sandals, which inadvertently put them at an increased risk of foot injury. 40 , 61 Some participants described culturally specific beliefs they held about DFU causation that diverged from medical explanations of this condition. 51 , 52 , 56 , 64

There was some evidence that individuals who had no prior experience of ulceration viewed DFU as an acute condition that would heal quickly, 34 , 39 , 40 , 46 , 58 , 60 whereas those with previous or active ulcers viewed healing as a prolonged, or indefinite, process. 32 , 36 , 39 , 43 , 44 , 45 , 46 , 51 , 52 , 55 , 61

Consequences

Many participants were either unaware of, or unconcerned about, their risk of diabetes‐related foot problems. 24 , 25 , 26 , 27 , 31 , 33 , 34 , 39 , 40 , 42 , 48 , 51 , 53 , 56 , 61 Some believed that DFU and amputation only occurred in acute cases 24 , 61 or instances of poor hygiene 40 and were critical of individuals who neglected themselves to such an extent. 35 , 40 , 48 It was apparent that many individuals did not consider cuts or sores on the foot to be a cause for concern 40 , 45 , 46 , 52 , 61 and believed they would heal easily without medical intervention. 23 , 34 , 39 , 40 , 45 , 46 , 52 , 61 Those with a history of ulceration acknowledged that they had failed to grasp the potential seriousness of DFU before it was too late. 28 , 34 , 39 , 48 , 58 , 61 , 62 However, some individuals with no prior experience were aware of the risks and feared developing an ulcer. 35 , 52 Fear of amputation was also frequently reported, 26 , 28 , 30 , 33 , 35 , 36 , 39 , 40 , 43 , 44 , 45 , 46 , 47 , 52 , 54 , 58 , 60 , 61 , 63 , 64 especially among those who either had personal experience of DFU 26 , 28 , 30 , 33 , 36 , 39 , 43 , 44 , 45 , 46 , 47 , 54 , 58 , 60 , 63 , 64 or knew someone who had undergone this procedure. 33 , 39 , 40 , 52 , 60 , 61 , 64

Controllability

Many individuals had limited perceived control over DFU, particularly those with previous or current ulcers, and felt that little could be done to prevent DFU occurrence 26 , 28 , 39 , 43 , 44 , 45 , 46 , 51 , 52 , 58 , 60 , 61 or were unaware that there were different stages at which action could be taken, 26 , 44 , 45 , 46 , 61 leading to a sense of hopelessness and resignation. 26 , 28 , 39 , 43 , 44 , 45 , 46 , 51 , 52 , 58 , 60 Participants in several papers, especially those with a history of ulceration, 26 , 28 , 30 , 36 , 38 , 39 , 43 , 44 , 45 , 46 , 47 , 51 , 54 , 58 , 60 expressed uncertainty 28 , 30 , 36 , 38 , 39 , 46 , 47 , 51 , 54 , 58 , 60 or had a negative outlook 26 , 38 , 39 , 43 , 44 , 45 , 46 , 47 , 52 , 58 regarding the future.

3.4.2. Preventing DFU: Knowledge, attitudes, and behaviours

Participants' knowledge of, attitudes towards, and engagement in behaviours that prevent DFU were examined across papers. It was apparent that even when knowledge of appropriate foot care behaviours was present, perceived barriers, such as their impingement on everyday activities, precluded adherence.

Foot self‐care knowledge, engagement, barriers, and motivators

Varying levels of knowledge and engagement in foot self‐care were reported by participants. Many recognised the importance of maintaining healthy feet and avoiding DFU 28 , 34 , 35 , 36 , 39 , 40 , 43 , 44 , 45 , 46 , 52 , 61 , 62 , 64 and demonstrated good awareness of appropriate behaviours, 25 , 26 , 28 , 35 , 36 , 37 , 43 , 44 , 45 , 46 , 51 , 52 , 61 , 62 , 64 such as seeking immediate medical assistance for foot injuries. 28 , 31 , 33 , 35 , 36 , 40 , 43 , 44 , 45 , 46 , 51 , 61 , 62 , 64 These individuals tended to practice foot self‐care regularly. 28 , 30 , 31 , 35 , 36 , 40 , 43 , 45 , 46 , 47 , 51 , 52 , 61 , 62 , 64 Others, however, lacked even a basic knowledge of, 25 , 33 , 43 , 45 , 46 , 52 , 61 , 64 or perceived little need for, 24 , 25 , 26 , 27 , 31 , 33 , 40 , 48 , 52 , 61 preventive action; their behavioural performance was often limited or inconsistent at best. 26 , 40 , 45 , 46 Several factors appeared to impede engagement in foot self‐care, in addition to participants' misperceptions of DFU outlined in the previous theme. Some disregarded foot self‐care recommendations as they had difficulty accepting their diabetes. 26 , 28 , 33 , 39 , 44 , 48 , 52 For others, the lack of visible symptoms and gradual onset of this “silent disease” 35 provided few cues for action, leading them to become complacent about their feet. 24 , 31 , 35 , 43 , 44 , 48 , 58 As one of several self‐management practices required of people with diabetes, foot self‐care was often considered of lower priority than more immediate demands (eg, taking medication, monitoring blood sugar). 26 , 41 , 61 Physical and cognitive limitations, such as poor eyesight, 34 , 35 , 43 problems remembering, 26 , 33 , 40 , 61 or difficulty reaching feet, 26 , 35 , 51 , 64 also posed challenges in performing foot self‐care unaided. Factors that appeared to motivate engagement in foot self‐care included receipt of education and/or training from health professionals, 25 , 31 , 33 , 34 , 35 , 37 , 42 , 43 , 45 , 46 , 48 , 51 , 55 , 57 , 61 , 62 which empowered participants to look after their feet. 26 , 37 , 41 , 43 , 45 , 46 , 47 , 48 , 51 , 62 Family members were also pivotal in promoting foot self‐care by providing advice 23 , 24 , 33 , 35 , 43 , 46 , 51 , 55 , 56 , 61 and practical assistance. 23 , 29 , 34 , 35 , 36 , 43 , 44 , 45 , 62 , 64 Having a greater sense of personal responsibility for one's feet appeared to encourage more proactive care. 26 , 35 , 36 , 39 , 41 , 43 , 45 , 51 , 52 , 61 , 62 Personal experience of foot complications 28 , 30 , 31 , 35 , 39 , 43 , 45 , 46 , 57 , 58 , 61 , 62 , 64 often served as a “wake‐up call” 28 to initiate positive behavioural changes, although knowing or observing others who have experienced DFU or amputation had a similar effect. 33 , 38 , 39 , 40 , 52 , 56 , 60 , 61 , 62 , 64

Therapeutic footwear views and practices

Many individuals expressed frustration with wearing prescribed footwear and other orthotic devices, 27 , 28 , 29 , 30 , 32 , 49 , 50 , 53 , 57 , 60 which were found to be expensive 30 , 41 , 43 , 45 , 55 and uncomfortable. 28 , 29 , 30 , 32 , 49 , 55 , 60 Some experienced such pain and discomfort that they feared they were putting their feet at increased risk of DFU. 28 , 29 , 32 , 49 Others reported severely restricted lifestyles. 32 , 51 , 53 , 57 , 60 The bulky, unattractive appearance of therapeutic footwear was also remarked upon 27 , 28 , 30 , 32 , 43 , 49 , 53 , 57 , 60 as it prevented people from wearing their preferred choice of clothing 27 , 28 , 32 , 49 , 50 , 60 and drew unwanted attention. 28 , 32 , 49 , 53 , 57 Female participants described how the “diving boot”‐like 57 appearance of their footwear impacted their sense of femininity 27 , 28 , 49 , 50 , 57 , 60 and self‐confidence, 27 , 50 , 60 particularly on social occasions. These factors led many individuals to intentionally defy therapeutic footwear guidelines, 28 , 32 , 49 , 53 , 57 , 60 although for some, their functional value ultimately outweighed any aesthetic concerns. 32 , 43 , 49 , 57

Taking risks

Participants across studies admitted to taking chances with their foot health. Many purposely ignored foot self‐care advice, 27 , 28 , 33 , 37 , 39 , 45 , 48 , 56 , 62 while others knowingly engaged in hazardous behaviours such as wearing inappropriate footwear, 27 , 28 , 29 , 40 , 46 , 49 , 50 , 57 , 60 , 62 walking barefoot, 28 , 40 , 46 , 52 , 62 and disregarding instructions to rest the ulcerated foot. 30 , 48 , 50 , 53 , 58 , 60 , 61 This was especially the case when recommended actions impinged on everyday activities, with participants taking strategic risks to maintain as normal a life as possible. 28 , 30 , 32 , 34 , 39 , 45 , 48 , 49 , 50 , 53 , 57 , 58 , 60 , 62 Even those who did adhere to foot care recommendations acknowledged that they might struggle to do so in the long term. 28 , 62

Preferences for foot care education

Attitudes towards foot care education were generally positive, where explored. 42 , 61 , 62 Four papers examined participants' preferences concerning the form this education should take. 26 , 31 , 61 , 62 The value of providing information that was clear, practical, and positively framed, 26 , 31 preferably in the form of leaflets that could be taken home and kept for reference, 26 , 31 , 61 was emphasised. Although it was acknowledged that the inclusion of graphic images of foot ulcers could induce fear, 26 , 31 some felt this was necessary to motivate behavioural change. 31 Views were mixed regarding whether foot care education should be provided on an individual or group basis. Individuals who took part in Vedhara and colleagues' 62 intervention were receptive to its group‐based format, which provided them with the opportunity to share with and learn from others; conversely, most participants in Burnside and colleagues' study 31 expressed a preference for one‐to‐one sessions. With regard to timing, some believed education should be provided shortly after the diagnosis of diabetes, 31 , 42 although the value of further sessions to reinforce learning was highlighted. 42 , 62 Participants in two studies suggested that general information on diabetes should be provided before focusing on foot care. 31 , 62 Some individuals admitted they were unlikely to attend foot care education despite being aware of its importance. 31 , 61 Barriers to attendance included work and child care commitments, mobility issues, financial constraints, and a dislike of hospitals as a venue. 31

3.4.3. Views on health care experiences

Participants across studies expressed dissatisfaction with elements of their health care experiences regarding DFU and voiced a desire for more holistic care.

Dissatisfaction with foot care provided

It was widely reported that health professionals often neglected to examine participants' feet 24 , 25 , 26 , 40 , 56 , 61 and failed to provide 24 , 25 , 32 , 34 , 37 , 42 , 43 , 44 , 45 , 46 , 48 , 51 , 53 , 55 , 61 or reinforce 33 , 34 , 42 , 53 , 61 advice on foot care, which limited knowledge of appropriate behaviours and undermined their perceived importance. 40 , 61 Many inconsistencies were noted in the foot care received from different health professionals and services, 23 , 24 , 25 , 26 , 44 , 47 , 48 , 55 , 56 , 59 which resulted from a lack of continuity in staff, 44 , 55 , 56 , 59 poor co‐ordination between services, 44 , 59 and confusion over the division of responsibility for different aspects of care. 44 , 47 These inconsistencies diminished participants' confidence in the quality of care provided 23 , 48 , 55 and delayed referral to appropriate services in some cases, resulting in adverse consequences such as amputation. 23 , 25 , 55 Furthermore, many expressed dissatisfaction with the care they received while hospitalised for DFU. 25 , 44 , 54 , 55 Such disappointing experiences led to feelings of mistrust 23 , 26 , 41 , 48 , 55 , 56 , 59 and the questioning of health professionals' knowledge and expertise, 44 , 48 , 52 , 55 , 56 , 59 although they were sometimes attributed to health care underfunding and the limited availability of personnel and resources. 37 , 44 , 59 The financial burden of foot care‐related expenses was frequently mentioned, 23 , 30 , 37 , 38 , 41 , 43 , 44 , 45 , 46 , 52 , 53 , 55 particularly the cost of travel to and from health care appointments. 30 , 37 , 38 , 52 , 53 In some instances, government assistance covered costs such as medical supplies, 30 , 41 , 55 appointments, 30 , 37 , 45 and prescribed footwear. 55 Inadequate access to appropriate health care was widely experienced 23 , 24 , 37 , 38 , 45 , 46 , 54 , 55 , 58 because of issues such as geographical location 23 , 24 , 37 , 46 , 52 and limited mobility. 37 , 44

Positive views of health professionals with expertise in foot care

Health professionals with specific expertise in foot care (eg, podiatrists, diabetes specialist nurses) were generally held in high regard, 23 , 24 , 29 , 31 , 37 , 38 , 39 , 40 , 43 , 44 , 46 , 47 , 48 , 53 , 61 and the care they provided was often preferred to that of general practitioners and other doctors. 29 , 42 , 48 , 53 Regular appointments with such professionals provided reassurance, 40 , 43 , 44 , 46 , 48 , 61 but the availability of such services was often limited. 29 , 37 , 40 , 41 , 43 , 44 , 46 , 55 , 64

Dissatisfaction with patient‐provider communication

Health professionals' communication with participants regarding DFU and foot care was widely considered to be poor. 26 , 37 , 39 , 40 , 47 , 53 , 54 , 56 , 59 , 61 , 63 In particular, individuals who underwent diabetes‐related amputation often remarked on the insensitivity of consultants in disclosing their need for this procedure. 37 , 39 , 53 , 54 Appointments were frequently rushed 29 , 34 , 36 , 47 , 52 , 59 or consisted merely of providing medication without discussion. 24 , 25 , 34 Many health professionals appeared to lack a holistic view of their patients, 39 , 50 , 54 , 59 failing to develop a good rapport 40 , 56 , 59 or provide emotional support. 29 , 39 , 53 , 54 , 59 Participants often felt that their health care providers did not appreciate the impact of DFU and foot care demands on their everyday lives 25 , 26 , 39 , 50 , 53 , 54 , 60 , 63 and tended to underestimate the seriousness of their condition, paying little heed to their concerns. 34 , 38 , 40 , 54 , 61 This delayed the diagnosis of conditions such as peripheral neuropathy 40 and receipt of appropriate treatment, 23 , 34 , 54 sometimes resulting in prolonged hospitalisation 34 and even amputation. 38 Many commented on the paternalistic nature of their relationships with health professionals 26 , 35 , 40 , 44 , 53 , 54 , 59 , 61 , 63 ; some described being reluctant to ask questions 32 , 43 , 44 , 60 , 61 or deliberately withheld information from them. 26 This appeared to encourage passivity in health care interactions and undermined participants' role as active self‐managers of their condition. 40 , 43 , 44 , 46 , 54 , 59 , 61

Desire for more holistic care

Among participants who reported positive health care experiences, health professionals who made an effort to develop a good rapport 37 , 44 , 46 , 47 , 54 , 59 , 61 and took an interest in their emotional as well as physical well‐being 29 , 43 , 44 , 46 , 47 , 58 , 59 were praised highly for their supportive interactions. Many emphasised the importance of empathy, understanding, and open communication in health care contexts, 37 , 39 , 44 , 45 , 46 , 47 , 48 , 54 , 58 , 59 , 61 which helped foster a sense of trust 39 , 48 , 59 , 61 and made them more inclined to follow advice. 45

3.4.4. Development of DFU and actions taken

Participants across papers described the circumstances leading to the discovery of a foot ulcer and their choices regarding its treatment.

Pathways to DFU

Factors preceding DFU included burn injuries 23 , 28 , 34 often incurred through unsafe behaviours (eg, applying a hot water bottle, 34 , 52 putting feet too close to a heat source, 23 , 34 bathing feet in boiling water 23 ), skin damage caused by inappropriate footwear, 25 , 27 , 34 , 39 , 44 , 45 , 50 , 55 experiencing a cut or sore on the foot 25 , 27 , 34 , 39 , 43 , 44 , 45 , 46 , 51 , 53 , 55 that was self‐inflicted in some instances through scratching 46 , 51 or peeling skin off the foot, 39 and failed attempts to self‐treat such wounds. 25 , 27 , 28 , 52

Discovery of DFU

Reduced sensation from peripheral neuropathy increased susceptibility to foot injuries 51 , 53 and delayed their detection. 23 , 34 , 43 , 44 , 45 , 53 , 62 Ulcers were often discovered incidentally by family members. 23 , 50 , 53 , 62 Feelings of shock 37 , 44 , 60 and anger 43 , 44 , 45 were often experienced on their discovery, particularly when amputation was required, 37 , 60 and many expressed surprise at how rapidly their foot's condition deteriorated. 34 , 39 , 47

Decisions regarding DFU treatment

Participants often failed to seek medical attention immediately for DFU, 23 , 25 , 33 , 34 , 38 , 39 , 45 , 46 , 56 waiting days or even weeks before attending a health professional and usually only when it had worsened significantly 23 , 34 , 39 or at the behest of family members. 23 , 33 Reasons for delay included underestimating the potential seriousness of the ulcer (especially if reduced sensation meant that little pain was experienced 28 , 34 , 46 , 56 ) or expecting it to heal by itself. 23 , 34 , 46 Individuals in two studies who injured their feet while on holiday decided to wait until returning home to seek medical attention. 34 , 39 Many participants opted to treat the ulcer themselves before seeking medical intervention. 23 , 25 , 27 , 28 , 34 , 35 , 36 , 39 , 45 , 46 , 52 , 56 Others used prayer to heal their wounds. 36 , 45 , 46 , 47 , 64 Some participants reported using alternative treatments specific to their culture (eg, witch doctors, herbal remedies). 36 , 43 , 45 , 46 , 52 , 56

3.4.5. Wide‐ranging impacts of DFU

Several physical, social, vocational, psychological, and interpersonal consequences of living with DFU were reported across papers, which had significant and enduring impacts on participants' independence, participation, and well‐being.

Physical impact

Many participants experienced significant pain 27 , 29 , 30 , 32 , 36 , 43 , 44 , 45 , 46 , 50 , 52 , 54 , 58 , 60 , 61 , 62 , 63 and reduced mobility 27 , 29 , 30 , 32 , 38 , 39 , 46 , 50 , 51 , 58 , 60 as a result of ulceration, which had a negative impact on well‐being. Some stated that amputation would be preferable to enduring the intense pain they experienced. 29 , 60 Sleep disturbances were also common. 27 , 29 , 30 , 43 , 44 , 46 , 58 Prolonged healing times were frequently reported, 36 , 39 , 46 , 60 , 63 with some entering into a cyclical pattern of DFU healing and recurrence. 32 , 39 , 45 , 55 Caring for the ulcerated foot was very time consuming, with multiple appointments to attend 28 , 30 , 47 , 50 that often necessitated travelling long distances. 37 , 38 , 47 , 53 , 55 Indeed, many felt that DFU care had taken over their lives. 39 , 43 , 45 , 50 , 51 , 60 , 63 Additional diabetes self‐management responsibilities 39 , 46 were often hampered by reduced physical activity levels resulting from DFU. 39 , 58

Social and vocational impact

Disrupted lifestyles because of restrictions in daily activities were widely reported, 27 , 28 , 29 , 30 , 32 , 38 , 39 , 43 , 44 , 45 , 46 , 50 , 51 , 53 , 55 , 58 , 60 , 63 with many being unable to bathe or shower, 27 , 30 , 50 , 53 drive a car, 29 , 32 , 50 , 55 , 63 or go shopping 30 , 55 unassisted. Activities often had to be planned in advance 30 , 58 ; in some cases, the medical care necessitated by DFU dictated where participants could spend their holidays. 30 , 39 , 58 Leisure activities were often severely curtailed or abandoned altogether. 30 , 32 , 39 , 43 , 45 , 50 , 51 , 53 , 58 Some struggled to fulfil their expected social roles as parents or grandparents because of ulceration. 27 , 39 , 50 , 53 Social isolation was often experienced as a result of such lifestyle restrictions. 28 , 29 , 30 , 39 , 46 , 50 , 58 , 60 The stigma of ulcers was frequently mentioned, 28 , 30 , 35 , 38 , 46 , 53 , 63 as was embarrassment at their appearance 25 , 30 , 53 and odour 30 , 46 , 63 ; some feared rejection from loved ones. 38 , 46 , 52 Participants across studies experienced loss of employment or were forced into early retirement by DFU, 27 , 30 , 32 , 38 , 39 , 43 , 45 , 46 , 50 , 51 , 52 , 53 , 55 , 56 , 58 , 60 especially those whose work put their feet at risk (eg, standing for extended periods, wearing steel‐capped boots). 30 , 53 This resulted in financial hardship for many. 27 , 32 , 38 , 39 , 43 , 45 , 46 , 50 , 53 , 55 Individuals who remained working reported decreased productivity, 30 dependence on fellow employees to maintain work performance, 43 and workplace discrimination, 52 although those who were self‐employed had greater flexibility in their working conditions. 53

Psychological impact

Many participants experienced anxiety as a result of their ulceration. 27 , 28 , 30 , 36 , 37 , 38 , 39 , 43 , 44 , 45 , 46 , 47 , 50 , 53 , 54 , 60 , 63 Fears of prolonged healing, 63 causing further damage to the foot, 27 , 29 , 57 , 58 , 60 and DFU recurrence 28 , 30 , 36 , 47 were expressed in addition to fear of amputation (Section 3.4.1), resulting in an enhanced sense of vulnerability 27 , 29 , 54 and loss of social confidence. 27 , 50 , 60 Fear of becoming dependent was also common. 28 , 43 , 44 , 45 Living with DFU and the restrictions it imposed often resulted in reduced quality of life, 27 , 29 , 30 , 32 , 43 , 45 , 46 , 50 , 53 , 60 loss of self‐esteem, 27 , 30 , 35 , 39 , 46 , 60 and an altered sense of self. 32 , 50 , 54 In particular, being unable to provide for one's family had a negative impact on participants' self‐esteem and sense of identity. 30 , 39 , 46 , 50 , 60 Many expressed anger and frustration at the loss of independence they experienced. 29 , 30 , 39 , 50 , 58 , 60 , 63 Others felt a sense of powerlessness. 38 , 39 , 43 , 44 , 45 , 50 , 54 , 58 , 63 Negative or depressed affect was common 28 , 29 , 30 , 32 , 43 , 46 , 50 , 60 and often accompanied by a lack of energy and motivation. 29 , 43 , 58 , 60 Participants frequently experienced guilt and self‐blame for their foot problems 27 , 28 , 35 , 37 , 38 , 39 , 48 , 50 , 58 and expressed regret over not looking after their feet better. 25 , 28 , 35 , 38 , 48 Nonetheless, many learned to accept their DFU 29 , 32 , 43 , 44 , 45 , 53 and maintained a positive outlook, 29 , 39 , 44 , 62 which helped them to cope better with the challenges it posed. Perceived benefits of their experiences included having greater appreciation of the seriousness of their condition, 43 feeling closer to their partner, 30 becoming a stronger person, 45 developing greater patience, 30 and receiving better medical care. 45

Sources of support and impact on relationships

Family members were an important source of emotional 27 , 28 , 29 , 36 , 37 , 38 , 39 , 53 , 55 , 56 , 63 and practical 23 , 27 , 28 , 29 , 30 , 36 , 37 , 45 , 46 , 50 , 55 , 58 , 60 , 63 support in dealing with DFU, taking on tasks participants were no longer able to perform. 27 , 29 , 30 , 43 , 50 , 55 , 58 , 60 , 63 Some individuals, particularly those who were older, relied on community health services for ulcer management. 29 , 30 , 36 , 43 , 44 , 45 , 47 , 55 , 58 , 59 Other sources of support included church members, 36 , 56 community workers, 36 , 38 , 40 and fellow DFU patients. 47 , 56 , 60 , 62 Although support from family members was greatly appreciated, participants often experienced the sense of being a burden because of their increased dependence on others. 27 , 28 , 29 , 30 , 46 , 50 , 55 , 58 , 63 Altered roles within the family also placed a strain on relationships. 27 , 29 , 30 , 39 , 43 , 45 , 46 , 50 , 53 , 55 , 63 Some participants were reluctant to discuss their experience of DFU with loved ones 28 , 39 or interfere with their lives and activities. 30 Others received insufficient support from friends and family, 36 , 37 , 38 , 60 whom they felt underestimated the seriousness of DFU and its impact. 28 , 43 , 45 , 58

4. DISCUSSION

To the authors' knowledge, this detailed and comprehensive meta‐synthesis is the first to explore patients' perspectives on DFU and foot care and makes a valuable contribution to the growing body of research on this important but often neglected complication of diabetes. Five overarching themes are described that move beyond the results of individual qualitative studies and add to our understanding of how people with diabetes perceive and experience this condition.

From this meta‐synthesis and other sources (eg, 8 , 11 , 15 ), it is clear that patients' understanding of DFU and its prevention is currently lacking. Our findings indicate that participants in the included studies did not simply have a deficit of knowledge but, rather, had alternative interpretations of DFU at odds with medical explanations of this condition, which had a significant influence on their behavioural choices. The beliefs we identified correspond with the five core dimensions (identity, cause, timeline, consequences, controllability) of the common sense model of health and illness behaviour (CSM). 65 The CSM offers a useful framework for exploring how patients' perceptions of a particular health condition may influence their cognitive, emotional, and behavioural responses and has been successfully applied to a wide range of medical conditions, 66 including diabetes. 67 The present findings further indicate the potential utility of this model in guiding health care interactions and developing interventions to enhance patients' understanding of this condition and encourage foot self‐care. 2 , 8

In line with previous research, 8 , 11 , 12 , 13 , 14 engagement in preventive foot care was generally quite limited across studies because of a variety of personal and environmental barriers. Our findings indicate that an individualised, rather than “one‐size‐fits‐all”, approach to education in foot self‐care based on discussion of patients' beliefs, preferences, and life circumstances may be the most effective in producing behavioural change. Our meta‐synthesis found that individuals were particularly unlikely to partake in foot protective behaviours if they impinged on their lifestyles, and many knowingly engaged in risky activities in order to maintain some sense of normality. This underlines the need for foot care recommendations that strike a balance between preserving foot health and maintaining patients' independence.

Education alone may not be sufficient to influence behaviour if individuals lack confidence in their ability to perform foot self‐care. Interventions that aim to promote engagement by improving self‐efficacy could result in greater and longer‐lasting behavioural change. 8 Self‐management interventions enhance patients' ability and confidence to manage long‐term conditions (LTCs) effectively by providing education, training, and support to develop their knowledge, skills, and both internal and external resources. 68 Their utility in improving clinical and psychosocial outcomes 69 , 70 , 71 and reducing health care costs 72 among people with LTCs including diabetes 73 , 74 has been widely demonstrated. Self‐management interventions specific to diabetic foot care hold significant promise. 75 , 76

It is apparent from our findings that individuals with diabetes do not feel adequately supported by their health professionals either medically, educationally, or emotionally in looking after their feet, which undermines the purpose and necessity of preventive foot care. There are several possible reasons for this. First, health professionals are already under time pressure to provide basic care to patients with such complex health needs; additional resources may be required to provide adequate foot care and education. 77 Second, many health professionals lack training in the provision of education on foot self‐care and are unfamiliar with consensus guidelines on treating the diabetic foot 78 and may thus lack awareness of what constitutes best practice. Central to the issues that have emerged from this meta‐synthesis is the need for more effective communication and greater partnership building within health care interactions relating to DFU in accordance with national and international guidelines that prioritise patient‐centred care and shared decision‐making. 8 , 79 Satisfaction with patient‐provider communication is associated with better understanding of diabetes, 80 self‐care, 81 and related health outcomes. 82 In addition, research indicates that people with diabetes desire more involvement in decision‐making around their condition, 83 which is linked with greater adherence to diabetes self‐management. 81 , 84 Involving individuals with diabetes to a greater extent in decision‐making regarding DFU, as well as family members who play an important supportive role as this review shows, may encourage them to become informed and empowered managers of their own foot health. 8

The findings of this meta‐synthesis also highlight the need for the improved implementation of recommended guidelines regarding the prevention and management of foot problems in people with diabetes. Optimal care requires not only medical management of DFU but also screening, education, and surveillance. This will be most effectively provided in an integrated health care system with multidisciplinary input. Indeed, increased availability of multidisciplinary diabetic foot care has a dramatic impact on DFU and amputation rates. 85 However, the findings of this review indicate that many individuals with diabetes still have insufficient access to such services, and those who do often encounter inconsistencies in care with potentially hazardous consequences. The growing emphasis on DFU prevention and management in international policy 8 , 9 is welcome but should be complemented by greater investment in health care resources and improved co‐ordination across the various pathways of care to tackle this issue effectively.

Ulceration had wide‐ranging physical, social, vocational, psychological, and interpersonal impacts on the lives of those affected that were significant and enduring in nature. The findings of this meta‐synthesis highlight the importance of providing individuals living with ulceration or the threat of recurrence with psychosocial support in dealing with its impact on everyday life. 2 , 62 Preliminary findings from Vedhara and colleagues' group‐based intervention for those at risk of re‐ulceration 62 indicate the potential benefits of utilising peer support. However, barriers to attendance identified in the present review need to be addressed in the development and delivery of such programmes and suggest that a “one‐size‐fits‐all” approach may not be optimal. In addition, vocational retraining and return‐to‐work interventions may prove valuable given the significant impact that loss of employment has, both emotionally and financially, on individuals with DFU.

4.1. Strengths and limitations

While the present meta‐synthesis highlights important findings, certain limitations should be acknowledged. First, although a qualitative methodological filter was used to refine our search, poorly labelled studies may have been unintentionally omitted. Greater investment in the consistent and appropriate indexing of qualitative research in electronic databases is urgently required. 17 Second, articles were limited to peer‐reviewed publications in English; eligible studies reported in other languages and publication types may have been excluded. Third, significant heterogeneity in sociodemographic and DFU‐related characteristics, both between and within study samples, make it difficult to gauge the applicability of findings to wider populations. Finally, all included studies provided data at one time point only; longitudinal research is required to examine changes in perspectives on DFU and foot care over time.

5. CONCLUSION

Investment in DFU prevention and management is key to reducing health care expenditure on complications of diabetes. 5 , 9 This meta‐synthesis offers valuable insights into what it means to have, or be at risk of, ulceration and demonstrates the complexity of issues influencing the behavioural choices of individuals with diabetes regarding their feet. The findings have significant implications for health professionals, researchers, and policymakers regarding health care delivery and the development of interventions to effectively promote engagement in foot care in this patient group and provide appropriate supports for those living with ulceration.

SAMPLE SEARCH STRATEGY FOR MEDLINE (OVID) DATABASE

• English language
• exp diabetic foot/
• (diabet*).tw
• (foot OR feet).tw
• Interviews as topic/ or interview/ or focus groups/ or narration/ or exp qualitative research/
• (qualitative* or ethnograph* or phenomenol* or ethnonurs* or (grounded and theor*) or (purposive and sample) or hermeneutic* or heuristic* or semiotics or (lived and experience*) or narrative* or (life and experience*) or (cluster and sample) or (action and research) or (observational and method) or (content and analysis) or (thematic and analysis) or (constant and comparative and method) or (field and stud*) or fieldwork or (field and work) or (key and informant) or (theoretical and sample) or (discourse and analysis) or (focus and group*) or interview* or discussion* or (ethnological and research) or ethnomethodolog* or (mixed and method*) or (mixed and model*) or (mixed and design*) or (multiple and method*) or multimethod* or triangulat*).tw

Coffey L, Mahon C, Gallagher P. Perceptions and experiences of diabetic foot ulceration and foot care in people with diabetes: A qualitative meta‐synthesis . Int Wound J . 2019; 16 :183–210. 10.1111/iwj.13010 [ PMC free article ] [ PubMed ] [ CrossRef ] [ Google Scholar ]