Challenges and Expectations of Diabetic Foot Care from the Patients’ Point of Views

Abstract

Introduction

Diabetic foot ulcer (DFU) as a common complication of diabetes needs a multi-disciplinary care approach in which the patient suffering from DFU is considered as a member of the care team. According to the effective role of patients in DFU prevention and management, this study was an attempt to explore patients’ views and expectations regarding provision of DFU preventive and therapeutic care to facilitate the process of care and management.

Methods

A qualitative research approach, using two focus group discussions, was conducted with patients suffering from diabetes and DFU. The questions designed to encourage the discussion were focused on the patients’ experience of foot and DFU care. We continued the discussions until we reached data saturation. The participants’ responses were recorded via a recorder and by taking notes. Afterwards, the discussions were transcribed and common themes were identified and categorized.

Results

Initially, fifty-seven codes were extracted which were then summarized and classified. Afterward, three themes and six sub-themes were determined as follows: defective education and ineffective communication("a defect in the patient education system", "impaired communication"), multi-faceted challenges of wound healing ("out of pocket expenses, treatment compliance", "non-physical injury"), and full support ("empathy" and "patient-centeredness").

Conclusion

According to patients’ views, patients’ concerns, and their socioeconomic conditions should be taken into consideration in designing an effective DFU care plan. In this regard, a strong communication with the patients to prepare a holistic care intended for patients’ full support would be essential.

Introduction

Diabetes mellitus is one of the most prevalent non-communicable diseases worldwide [1]. It is predicted that by 2045, 700 million people worldwide will have diabetes [2]. Among its different side effects, Diabetic Foot Ulcer (DFU), with the risk of > 50% recurrence after 3 years, is one of the most prevalent complications which impose heavy costs on the patient, family, and society [3, 4]. Actually the annual incidence of DFU is estimated 2–4% in developed and maybe higher in developing countries [5]. Additionally evidences suggested an excess rate of mortality in diabetic patients suffering from DFU compared with those without any foot complications[6, 7]. In this regard the main recommendation for DFU prevention and management is employing a multi-disciplinary team approach to DFU care [8]. It is said that a multi-disciplinary care approach makes the provision of coordinated, timely, and effective care and treatment interventions possible [9].

As the patient is a member of the multi- disciplinary diabetic foot-care team, patient education with the aim of promoting the knowledge about foot care and self-examination is known as a key strategy to prevent diabetic foot complications [10–13].

The results of different studies indicate that in order to achieve an effective prevention program and a comprehensive care plan, the patients’ presence, feelings, and understanding of the their health conditions are essential [14]. When adopting a holistic approach to diabetes care, we should address all aspects including the patients’ feelings, concerns, fears, and expectations in our plans [14, 15] i.e., it is unlikely to plan a successful educational, preventive, and therapeutic program for DFU without involving patients and including their concerns. Patients’ contribution in the DFU the prevention and management process is very important and necessary because all diabetic patients are potentially at risk of DFU which could be prevented by increasing their knowledge and practices of adiabatic foot care [16]. Moreover high-risk diabetic patients would be taking part in a foot care program with multidisciplinary approach [17].

Given the patients’ pivotal and effective role in the multi- disciplinary team for diabetic foot care and prevention, this study aimed to explore the views of patients suffering from diabetes and DFU about requirements of providing DFU preventive and therapeutic care.

Method

In the present study, the needs of diabetic patients about foot and DFU care were explored in order to understand their needs and expectations of the healthcare providers to optimize the process of care and management.

Study Design

In the present study, a qualitative design in the form of a Focus Group Discussion (FGD) was chosen. FGD is a qualitative research method whereby the facilitator poses a question to the participants, thereby creating an opportunity for eliciting information about an issue through group discussion. It encourages the participants to establish interaction and exchange information about their experiences/views [18–20]. Due to the interaction and influences of individuals on each other, FGDs reveals dimensions of people’s perception and knowledge which are inaccessible via other data collection methods [21].

Study Participants

The participants were diabetic patients who received diabetes and diabetic foot ulcer care in primary and specialty care centers. After coordinating with the supervisor of the clinic, the patients, who were taking the educational courses at the clinic, were invited to participate in the FGD concurrently. The researcher (MA) prepared a list of the volunteered patients with their names and contact information. Next, two researcher (MA and NM) selected the patients based on their medical information and by observing maximum variations in terms of the type of diabetes, age, sex, oral drug consumption or insulin injection, duration of diabetes, and a history of diabetes complications, including retinopathy, nephropathy, neuropathy, cardiovascular diseases, and DFU. Therefore, the participants were selected via a purposive sampling method.

The researcher explained the study and the purpose of the research to the patients via phone calls. Once the patients announced their interest in participating in the FGD, the researcher arranged the time and place for holding the FGD at the clinic.

Setting

The research setting was the Diabetes and Metabolic Diseases Clinic of Tehran University of Medical Sciences (TUMS). Once the informed consent forms were obtained, the participants were asked to attend the meetings at the pre-set time. The sessions were held in a classroom located in the clinic. The participants were asked to sit in a circle, and they were informed that their voice was recorded via voice recording equipment. The sessions were held on Thursday, from 10 a.m. to 12 noon.

At the beginning of each session, the moderator (MA) explained the objectives of the study to the participants, showed how the activity would be carried out and how the data would be processed. The co-moderator (NM) assisted in recording the interviews, observed group interactions, took notes and contributed with clarifying questions.

Data collection

Two FGD sessions were directed by MA as the moderator, who was not a member of the healthcare system. However, she (MA) had research experience in the field of diabetes and diabetic foot care and was acquainted with the use of FGD techniques. The other researcher (NM), as the co-moderator closely observed the session, took notes of the discussed topics and helped in clarifying the question.

At the onset of each FGD session, the moderator introduced herself and informed the participants of the goal of the session. The participants were asked to observe the guidelines of the meeting which were explained to them at the beginning of each session. The guidelines were as follows:

• Each participant should introduce him/herself at the beginning of the session. However, they could introduce themselves with a pseudonym.

• The time allotment for each participant to discuss a specific topic is managed by the moderator/co-moderator.

• The participants should not interrupt each other.

The FGD commenced by posing open-ended questions about service provision for DFU prevention and care. The questions were focused on:

1. What are your expectations of the healthcare providers regarding diabetic foot prevention and care?

2. What was your experience of care and treatment provision before the occurrence of foot ulcer or in the first stages of encountering the ulcer?

The moderator (MA) encouraged the participants to express their opinions and reveal their view points and experiences about the topic of discussion. In this regard the next questions were not structured; rather, they were based on the participants’ responses. Probing questions such as “What do you mean? Could you explain more? Could you give an example? Is there something missing that you’d like to mention?” were asked to enrich the data.

The participants’ responses were recorded via a recorder and by taking notes. There were two FGD sessions; which lasted for 80 and 60 min, respectively. There were ten and six patients participating in the first and second sessions, respectively.

The participants could express their views about DFU prevention and care and mention important points regarding their relationship with the healthcare team. At this stage, we tried to rely on participants’ statements regarding their experiences, without any interpretation or judgment. At the end of the interview, the participants were asked to express other points that deemed necessary.

Data Analysis

Two FGD sessions were held until reaching data saturation. Indeed, we continued the discussions until no new idea was expressed, or when the responses were similar or repetitious, suggesting that we reached data saturation [22]. The transcription and concept mining were performed simultaneously. The conventional content analysis based on three main phases of preparation, organization, and analysis report [23–25] was adopted.

In the preparation phase, all the discussions of the FGD were transcribed immediately after each focus group discussion session (by MA) and selected sections dealing with each topic of interest were divided into the unit of analysis (by MA and NM). If there was any difficulty with the understanding of the responses or any disagreement, the third researcher (SB) was consulted. At the beginning of the organization phase, by using the inductive process, the semantic units relevant to the research questions were selected, and initial open codes were assigned to them. In the next stage, similar open codes were classified into sub-themes based on their similarity and semantic relevance. Then, the sub-themes were grouped under themes. Finally, the themes, sub-themes, open codes, and key statements extracted from the FGD transcripts were reported.

Trustworthiness

Trustworthiness is an important dimension of qualitative studies. According to Guba and Lincoln, four criteria of trustworthiness include credibility, transferability, consistency, and confirmability [26] which was considered in the current study.

To ensure credibility, the researcher tried to establish good rapport, allocate enough time, and garner the trust of the participants for data collection. The results were returned to the participants for member checking and ensuring the accuracy of the collected data. The research team also had in-depth and prolonged engagement with the qualitative data.

To adhere to transferability, we tried to avoid selecting homogenous participant by having maximum diversity in selection of participants, including diversity in the type of diabetes, receiving healthcare services from primary healthcare centers, age, sex, taking oral drugs or insulin injection, duration of diabetes, and history of diabetes complications. To ensure consistency, all the steps and process of research were recorded and reported as precisely as possible.

To enhance confirmability, the peer check process was used, and the extracted codes and themes were independently reviewed by two research members in order to reach a consensus about the codes and classification of the themes. The codes and classifications for which there was no consensus were revised by repeated reviewing of the FGD transcripts until consensus was achieved.

Ethical Consideration:

The present study approved by the Ethics Committee of Iran University of Medical Sciences (IUMS) in 2020 (code: IR.IUMS.REC.1398.1184). All participants signed the written informed consent forms. The participants agreed to have their voices recorded and were ensured of the anonymity, confidentiality of data, and the right to withdraw from the study. The researcher was committed to adhering to the principle of confidentiality in recording, maintaining, and disposing of the files at the end of the research and transcribing the interviews.

Results

Participants

The final number of participants in the two sessions was 16 patients with type 1 (n = 4) and type 2 diabetes (n = 12) who received diabetes and DFU care in primary and specialty centers. Ten participants were male and six were female, aged 40–75 years, and 14 participants were married. Four participants had a history of taking oral drugs alone, and 12 participants had received insulin injections in addition to taking oral drugs. The patients’ level of education varied from under high-school diploma to BA/BS. The duration of diabetes was 5–25 years, and 13 patients had experienced at least one of diabetes complications, e.g., retinopathy, nephropathy, neuropathy, cardiovascular diseases, and DFU (Table 1).

Table 1.

Characteristics of participants in focus groups

Participant Number	Gender	Age	Educational Level	Type of Diabetes	Marital Status	Duration of Diabetes	History of Diabetes Complications
1	Male	64	Under High-school diploma	2	Married	24	Yes
2	Female	58	High-school diploma	2	Widowed	7	No
3	Male	69	High-school diploma	2	Married	22	Yes
4	Female	40	BA/BS	1	Single	18	Yes
5	Male	51	BA/BS	2	Married	5	No
6	Male	75	Under High-school diploma	2	Married	25	Yes
7	Female	60	High-school diploma	2	Married	20	Yes
8	Female	47	High-school diploma	1	Married	20	Yes
9	Male	44	BA/BS	2	Married	9	No
10	Male	59	High-school diploma	2	Married	19	Yes
11	Male	41	BA/BS	1	Single	15	Yes
12	Female	62	High-school diploma	2	Married	12	Yes
13	Male	71	Under High-school diploma	2	Married	15	Yes
14	Male	55	BA/BS	2	Married	17	Yes
15	Male	43	BA/BS	1	Divorced	25	Yes
16	Female	64	High-school diploma	2	Married	13	Yes

Emergent Themes

Fifty-seven primary codes were extracted from the rich and in-depth description of the participants. The codes were summarized after repeated readings and classified on the basis of their similarities and semantic relevance. Through analysis and comparison, three themes and six sub-themes were determined and received a conceptual and abstract name based on their nature.

The themes included: “defective education and ineffective communication” (sub-themes: "a defect in the patient education program", "impaired communication"), “multifaceted challenge of wound healing” (sub-themes: "out of pocket cost", "non-physical injury"), and “full support” (sub-themes: "empathy" and "patient-centeredness") (Table 2).

Table 2.

Codes, sub-themes, and themes resulting from the Focus Group Discussion sessions

Codes	Sub-themes	Themes
Lack of practical recommendations in patient education	A defect in the patient education program	Defective education and ineffective communication
Lack of an appropriate patient education program
Lack of a specialized foot care education program
Practicing/consolidating treatment compliance	Impaired communication
Trying to elicit submissive behavior from patients
Maintaining paternalistic doctor –patient relationship
Ignoring patients’ financial problem	Out of pocket treatment expenses	Multifaceted challenges of wound healing
Lack of insurance support
Confusion in selecting the best treatment interventions
Worries and feeling of hopelessness about recovery from wound healing	Non-physical injury
Feeling of being neglected during the treatment process
Expecting physicians to have a feeling of being identified with patients	Empathy	Full support
Having the opportunity to express their emotions
Expecting a person-centered care approach	Patient-centeredness
Expecting peer support to aid in prevention and treatment

Theme 1: “defective education and ineffective communication”

Knowledge and awareness of DFU, especially before its occurrence, was a challenge expressed by the patients. The participants mentioned the challenge as a defect in the patient education and ineffective communication.

Sub-theme 1–1: A defect in the patient education program: The majority of participants had little information about the diabetic foot, except for those who had seen such a phenomenon among their acquaintances and had observed its effects on different aspects of the person’s life. For example some of the participants had the following statements:

Participant 1 (M): “I didn’t know the diabetic foot ulcer exists before I got it myself.”

Participant 4 (F): “No one had educated me about diabetic foot ulcer; I’d just heard other patients in the clinic that their feet had ulcers.”

Participant 7 (F): “My father had diabetes and foot ulcer for a long time; that's why I knew if my blood sugar isn’t low, my feet will have ulcers.”

Participant 9 (M): “They kept telling us we should exercise and follow a diet; no one taught us about foot care.”

Participant 12 (F): “The only education they gave me for preventing foot ulcer was, 'Take care of your feet.' That's all.”

Participant 14 (M): “The highest level of education provided at the clinic is giving pamphlets with a small font, and every line of the text creates so many questions. No one explains the symptoms before the occurrence of foot ulcer.”

Participant 16 (F): “I wish they’d show us how to wash and dry the foot instead of long and time-consuming lectures.”

Sub-theme 1–2: Impaired communication: Miscommunication between healthcare team and patients and their families was an obstacle to the provision of suitable education to diabetic patients. Most of the participants believed that there was no efficient education about reducing the risk factors of developing a foot ulcer and its prevention in diabetes. The education, they said, did not match to their needs and conditions. In other words, mutual communication was not established between the healthcare team and the patients as some of them stated as follows:

Participant 2 (F): “The doctor jots down the medications in a flash and throws me the prescription. They don’t answer my questions, let alone educate me.”

Participant 5 (M): “It doesn’t matter whether we’re present in the examination room; the doctors do what they've got to do and say what they've got to say.”

Participant 15 (M): “The doctors expect us to say ‘yes’. The doctor and nurse don't give me any chance to talk. They quickly say what they’ve got to say. This is my foot ulcer we're talking about.”

Theme 2: Multi-faceted challenges of wound healing

According to the participants, after the occurrence of DFU, they and their families faced different challenges, classified into "out of pocket cost" and "non-physical injury".

Sub-theme 2–1: Out of pocket expenses, treatment compliance: These include financial burden associated with the delivery of costly treatments not covered by insurance. Some of the participants discussed as follows:

Participant 3 (M): “Heavy costs of insulin, visits, and tests don't give us time to think of anything else, let alone diabetic foot ulcer.” There was also confusion in choosing the type of treatment that needed the support and attention of the healthcare team.

Participant 6 (M): “No one asked my opinion about the treatment when my foot developed an ulcer. I was afraid of the maggot therapy but they used it on my foot anyway.”

Participant 10 (M): “We couldn't pay for the treatment. And there was no other option.”

Sub-theme 2–2: Non-physical injury: Another challenge was the sense of hopelessness, physical and mental exhaustion, and the fear of losing job, which made them preoccupied when encountering the DFU.

Participant 3 (M): “I’m very sad. When I come to the clinic, because of my ulcer, I feel like a stinking creature people run away from.”

Participant 16 (F): “When my foot developed the ulcer I lost all hope for the future. Diabetes does everything; it will eventually take my foot from me.”

Theme 3: Full support

We are encountered with two groups of patients with diabetic foot ulcer; patients who have fully recovered, and patients who have undergone amputation. What they both share is the need to receive attention and support from the treatment team. The participants needed support from others, including family, friends, other patients with diabetes, colleagues, and especially the treatment team. This support can help maintain a healthy life, understand the needs related to diabetes control and reduce the risk of diabetic foot ulcer recurrence, adjust to the side effects of the ulcer, and delivery of care in the case of possible amputation. Thus, the participants mentioned full support in the form of empathy and patient-centeredness.

Sub-theme 3–1: Empathy: The participants’ perception of support, especially from the healthcare team, was the empathy for tolerating the complications of diabetic foot ulcer. They wanted their voice to be heard so that they could express their concerns out loud.

Participant 1 (M): “I wish the doctors and nurses could be in our shoes. In that way, there'd be room for our cooperation, and they’d hear our voice.”

Participant 9 (M): “My emotions are as important as the appearance and size of my foot ulcer; I wish they'd give me time to talk about my feelings as well.”

Sub-theme 3–2: Patient-centeredness: The patients asked for an opportunity to visit and share their experiences with other diabetic patients in peer educational programs. They believed that the experience of participating in a program with peers is very beneficial.

Participant 4 (F): “A group learning class for prevention of diabetic foot ulcer would be great.”

Participant 11 (M): “Patients who’ve had an ulcer or undergone amputation are our best teachers.”

Participant 14 (M): “We learn better points in a WhatsApp group with patients and nurses.”

The participants also expressed that individual counseling was essential. They also found repeated telephone calls or emails beneficial when necessary. They mostly emphasized that they should be considered as part of the treatment team around which everything revolves. According to the participants, they need to receive individual education and care based on their personal health conditions and the risk factors for ulcer recurrence.

Participant 16 (F): “I had a good experience; once, when I had the ulcer, the doctor gave me some time to talk about using the wheelchair and express my opinion.”

Discussion

Due to the undeniable and effective role of patients in DFU prevention and treatment, FGD sessions were held to explore DFU care needs of patients with diabetes. The results demonstrated their needs and concerns in three themes of “defective education and ineffective communication”, “multi-faceted challenges of wound healing”, and “full support”.

A defect in the patient education system and impaired communication were the sub-themes of the “defective education and ineffective interaction” theme, suggesting the lack of appropriate education and effective communication with the patient simultaneously. In line with these results, the results of a study examining the obstacles to diabetic foot care in developing countries have suggested that the patients need more time for understanding the content knowledge of the education program offered by the treatment team, and this requires that the treatment team spend more time for the patients [27]. In a similar study explaining the obstacles to diabetes self-care, the patients requested more time for visiting and counseling, while also discussing the necessity of receiving continuing education via different methods and updating their information about diabetes care [28]. Consistent with these findings, a study investigating the causes of improper blood glucose control from the perspective of diabetic patients reported that lack of proper education and communications with the treatment team due to the irregular attendance and visit in the clinic are among the factors affecting improper blood glucose control [29].

The “multi- faceted challenges of wound healing”, with sub-themes "out-of-pocket Cost of treatment" and "non-physical injuries" demonstrate the effects of variables additional to the DFU on patients’ health. The results of similar studies show that socioeconomic challenges and the personal and family conditions of patients clearly affect the overall management of diabetes and its complications. Even if the patients do not explicitly note this point, the effect of their challenging life conditions on this chronic disease management and treatment method is obvious [27, 30]. Interestingly, in a qualitative study examining the views of the DFU treatment team about proper care for patients with diabetes, factors such as education level, socioeconomic status, and social support were observed as the factors affecting disease control and treatment [31]. As for non-physical injuries, in a similar study, the patients noticed the individual factors affecting the management of diabetes, stress, hopelessness, social isolation, depression, fear, and denial as the obstacles to adherence to a healthy lifestyle [28]. In the present study, in the sub-theme of non-physical injury, the patients expressed the necessity of talking to the treatment team about feelings such as worries, hopelessness, and being neglected.

Finally, “full support” through "empathy" and "patient-centeredness" was another concern of the patients. This may be more salient in developing countries facing a shortage of specialized clinics and the time limits of multi-specialty diabetic foot treatment teams. Similar studies also highlight the necessity of holding group discussions with the patients in the form of group counseling and expressing their experiences [28]. A similar study has emphasized the formation of peer support groups for patients to facilitate learning and share their experiences of the disease, noticed as a component of patient-centeredness in the present study [32].

Overall, in line with the present study, the results of a qualitative research examining the obstacles of DFU demonstrate similar concerns, including high costs, poor insurance coverage, problems associated with defective education, and insufficient visits to deliver proper care services. However, the issues of insufficient understanding of the healthcare recommendations [32] and low motivation to change the lifestyle were not mentioned by participants of the present study [30]. Moreover, none of these studies [27–29, 31, 32] directly mentioned the miscommunication between the treatment team and the patients. Meanwhile, in the present study, the patients had many concerns about the authoritarian behavior of the healthcare team and the necessity of following them (sub-theme of impaired communication).

Conclusion

Based on the results of the current study, the members of the multi-disciplinary care team should pay attention to the patients’ special conditions and develop a holistic care plan intended for patients’ full support. In addition to the complications of DFU, it is crucial to consider the patients’ socioeconomic conditions in order to provide the best care. To this end, the DFU care team member should establish a strong communication with the patients at all stages of the medical procedure and have an understanding of patients’ concerns and their families’ worries.

Limitations

There were fewer FGD sessions than the researcher expected. However, it is unlikely that factor has affected the findings due to the similarity in the patients’ comments and not receiving any new comment/idea after two sessions.

Abbreviations

DFU

Diabetic Foot Ulcer

FGD

Focus Group Discussion

F

Female

M

Male

Authors’ contributions

MA and NM hold FGD sessions. MA, NM and SB extracted the themes, sub-themes, open codes, and key statements from the FGD discussions. MA, SB and AD had the major contribution in writing the manuscript. ZS and KSA read and commented the manuscript. All authors approved the final manuscript.

Funding

Iran University of Medical Sciences vice-chancellor for Research (grant number 1398–2-75–15000) has granted the study.

Declarations

Ethics approval and consent to participate

The present study is part of the PhD dissertation entitled "Developing the Game Design Document and Designing a Demo of Diabetic Foot Gamification" submitted by Maryam Aalaa, and approved by the Ethics Committee of Iran University of Medical Sciences (IUMS) in 2020 (code: IR.IUMS.REC.1398.1184).

Consent for publication

All authors have approved the manuscript and agree with its submission to the “Journal of Diabetes & Metabolic Disorders”.

Competing interests

The authors declare that they have no competing interests.