Abstract
(1) Background: This study was conducted in the small island developing state of Barbados, which has dubiously earned the title of “amputation capital of the world”, to understand perspectives of persons living with diabetic foot ulceration. (2) Methods: An exploratory multi-lens approach was used (focus groups; dyads; and triads) to gather indigenous Afro-Caribbean perspectives of living with diabetic foot ulceration that may be obscured by using a single method. (3) Results: Findings in this group highlighted the necessity of creating culturally sensitive education tools, as well as understanding how mistrust of local health systems may play a role in decisions to delay seeking health services despite ease of access with no cost at point of care. Problematic historical relationships with health systems among Afro-Caribbean people, for whom oral traditions motivate preference for traditional medicines instead of Western/colonial treatments from North America or Europe, may be deeply entrenched in this population and contribute to health beliefs and behaviors. (4) Conclusions: This paper addresses the gap in the literature regarding the use of qualitative methodologies to explore the beliefs of Afro-Caribbean people within their native context to inform design of culturally responsive self-education programs.
1. Introduction
The International Working Group on the Diabetic Foot (IWGDF) defines diabetes-related foot disease (diabetic foot) as “disease of the foot of a person with current or previously diagnosed diabetes mellitus which may include one or more of the following: peripheral arterial disease, infection, gangrene, amputation, ulcer(s), or peripheral neuropathy” []. Diabetic foot and related complications present a significant health systems burden due to the overwhelming costs of outpatient dressings as well as protracted in-hospital stays. In a 2014 study, diabetic foot disease (DFD) was found to contribute to 30% of hospital admissions at Barbados’ lone public hospital; these represented 89% of all diabetes-related admissions []. Diabetic foot ulceration (DFU) is a “break in the skin of the foot that includes minimally the epidermis and part of the dermis in a person living with diabetes” []. Ischemia and infection are the main indications for admission related to complications of diabetic foot [], and management requires a multidisciplinary approach with vascular interventions; local and systemic infection management; surgical interventions; and likely outpatient follow-up in wound care and orthotic clinics [].
1.1. Diabetic Foot in Barbados
Epidemiological data support the unenviable characterization of Barbados as the “amputation capital of the world” [,]. Various educational efforts and attempts to improve the diabetic foot landscape have met with seemingly little success. As a small island developing state with a high non-communicable disease (NCD) burden, where a quarter of adults are diagnosed with an NCD [], Barbados is on the frontline of NCD-related public health challenges, including those presented by DFD. As early as 1998, the burden of DFD in the sole public tertiary hospital accounted for 67.5% of admitted surgical patients over a six-month period []. These patients too frequently required major amputations for “many trivial preventable problems” []. A recent study of DFD in a Barbadian primary care diabetes specialist clinic setting found a 1-year prevalence of 14.7% for diabetic foot ulceration, with associated complications of retinopathy, antiplatelet therapy, and chronic kidney disease noted []. DFD education and amputation prevention programs have included the World Diabetes Foundation Step-by-Step program, which trained over 200 physicians and nurses in Barbados and St Lucia from 2009 to 2012 []. Unfortunately, these efforts have not realized lower rates of foot ulceration or limb loss in the decade since conclusion of the intervention [].
1.2. Patient Populations and Barriers and Facilitators to DFU
Barriers and facilitators to effective DFU treatment have been explored in various populations, but evidence for Afro-Caribbean people is limited. A 2023 qualitative systematic review and meta-analysis exploring perceptions and experiences of persons with diabetes towards DFU highlighted four overarching themes: perceptions of DFUs (realization and reasons), coping with DFU (including persons’ behaviors towards treatment and management and perceptions towards amputation), expectations (expectation of health personnel and future expectation), and living with DFU (physical and emotion burdens, economic burdens, and change in life) []. Diasporic Afro-Caribbean populations in the United Kingdom living with type 2 diabetes have noted mistrust in medical systems and preference for natural remedies to traditional medical techniques as barriers to treatment []. Prior explorations within a rural Barbadian population found that ethno-botanical practices were present in 75% of the population with its use linked to demographic variables of education and health insurance []. These are echoed in qualitative studies emerging in Southeast Asia, the United Kingdom, mainland Europe, and the United States [,,], but research on groups in the Caribbean region specifically surrounding diabetic foot disease is lacking.
Although disparities in outcomes for Afro-Caribbean people with DFU are well established [], the barriers and facilitators for this population remain poorly understood. Afro-Caribbean people represent the predominant ethnic group in Barbados, which is also burdened by high DFU rates. Better understanding of the experiences of Barbadian patients with DFU has important implications for diabetes care in both Barbados and other communities with similar populations.
2. Materials and Methods
Paradigm, methods and ethical approval: A qualitative methodology was selected given the exploratory, hypothesis-generating nature of the work and the need to generate rich contextual descriptive data to explore the factors influencing the lived experiences of the participants with a stigmatizing medical condition [,]. The work was undertaken using a qualitative methodology with an interpretivist stance, which generated meaningful participant accounts of their lived experiences and perceptions of DFU as a person living with diabetes (PLWD) using focus groups and dyads [,]. Ethical approval was obtained from the University of the West Indies/Barbados [].
2.1. Setting
Barbados is an Eastern Caribbean country with a lone public hospital receiving patients from both private and public referral sources. Public health care is free of cost for all residents at the point of care and is funded primarily through taxation []. Primary public health care for diabetes is facilitated by local polyclinics or primary health centers, as well as one multidisciplinary center for diabetes. Patients who are newly diagnosed, uncontrolled, or have active foot ulceration are referred to the center for a six-month period of care [].
2.2. Sampling Strategy and Participants
Participants were recruited using purposive sampling at two rural and two urban/suburban polyclinics in addition to the multidisciplinary diabetes center wound care clinics, which bridge primary and secondary care. High-risk and complex wound patients are currently managed within the hospital wound clinic; only clinically stable patients attend polyclinics or the multidisciplinary clinic. A total of five groups, including focus groups, triads, and dyads, were included in this study. The inclusion criteria are seen in Table 1 below.
Table 1.
Inclusion Criteria of Participants.
2.3. Data Collection
The researcher (LL), who is deeply embedded in the field of diabetic foot care in Barbados, developed the interview guide informed by theories of planned behavior [] and the need to develop culturally appropriate foot programs and educational tools to more adequately address barriers to care [,,]. The focus group guide explored three major areas: diabetic foot care knowledge, the Barbados experience of diabetic foot, and amputation and limb loss. The interview guide without sub-questions is seen in Table 2 below.
Table 2.
Focus Group Guide.
Focus groups took place from June 2023 to February 2024 and were conducted by LL with debriefing with NG afterwards. Field notes and contact summary sheets were also developed after each interview. Data collection was complete when no new emerging themes arose from the datasets (i.e., when saturation was achieved). The data collection for the participants with DFU was therefore concluded at n = 15 from a total of five sites.
2.4. Analytical Approach: Secondary Analysis
All interviews were transcribed modified verbatim by LL (a postgraduate-trained qualitative researcher). Two interviews were then independent double-coded manually by LL and NG (a doctoral-level qualitative researcher) to ensure consistent coding and data interpretation with any differences resolved through discussion []. The initial coding list of 29 codes was then applied to transcripts using Atlas.ti version 23 to aid in data reduction. The basic themes were then determined through coding frequencies, analyzing patterns in co-occurrences in Atlas.ti version 23 software. The emerging data revealed four organizing themes and one global theme as shown in Table 3.
Table 3.
Code Names and Basic Themes Derived.
3. Results
The recruitment allowed for participation of five groups with fifteen participants. Table 4 summarizes the participant profiles.
Table 4.
Participant profiles.
Site Key:
- Multidisciplinary Center
- Urban/Suburban Facility
- Rural Facility
- Rural Facility
- Urban Facility
3.1. Data Condensation
Inductive coding through the 29-item framework identified the basic themes of “culturally accepted treatment as a barrier to evidenced based care”, “the information desert”, “emotional impact of DFU and limb loss”, and “private/public health systems”. The Sankey diagram in Figure S1 is a further presentation of the findings. Further condensation identified the organizing themes (OT) of Information, Disparity, and Feelings that we subsequently used to present the findings.
The interconnection of these organizing themes leads to a systemic failure to empower individuals living with DFU to achieve remission and ultimately improved quality of life. The further discussion of this web of relationships and its implications for health systems, bounded by principles of empathic neutrality and reflexivity, produced the global theme of Health Care-Related Stigma and Disenfranchisement. These results are now presented using OTs.
3.2. OT1: Information
3.2.1. Sources of Trusted Information on DFU
This theme captured the perceived lack of trusted information available on DFU as well as the complex ways that participants see information as trusted. Reliance on doctors was in keeping with paternalistic patterns.
“The best information would come from the doctor or the nurse”P1, FG 3, 58 years, male
However, some participants preferred to obtain information from the “neighbor”, seen as anyone within their community who was providing information at the time who they viewed as a trusted source:
“One or two people from my neighbourhood (told me about my foot)… If I go to the shop or anything so would be like man…. you foot look funny boy! You diabetic you know be careful before you lose it. I frightened when they say I would lose it.”P2-2, FG4, 56-year-old male
3.2.2. Caribbean Traditional Remedies
Traditional therapies for healing of DFU still persist among participants, with some preferring local remedies to heal DFU as opposed to presenting to a medical facility for initial care. These treatments appear well known amongst the community and no doubt have been passed down through generations by oral traditions, but they often contradict the information advised in Western medical approaches.
“1: Well, the same fella that I now tell you about…he would have tried saltfish skin and all sort of things and it just made the foot worse
3: Yes, that is the thing (remedy) for nail juk (puncture)”
Exchange between P1 and P3 from FG2 (58-year-old male and 69-year-old female)
“My wife saying now she going to get some grated paw-paw (papaya) and see if that would heal it…”P1, FG3 (58-year-old male)
3.2.3. Information Sources
Diabetic foot education shared via print media was not a preferred method of transfer of information according to participants. Identified barriers of illiteracy, which may not be readily communicated to medical personnel, gave rise to preferences for videos, one-to-one education sessions, and talk programs as opposed to print.
“I think we need more people more educated in this thing….; remember that a lot of people cannot read! So, if persons would come out and speak to them, they would understand ……. That is what people don’t know”P2-1, FG4 67-year-old female
Lack of provision of information by healthcare professionals was also seen as a challenge among participants, and they believed they were ill-equipped with the tools for self-management.
“We should (know about diabetic foot) but I never find out… anything…. the source of the diabetic foot no one ever told me….neither here at the clinic or my private doctor”P2, FG3, 79-year-old female
3.3. OT2: Disparity
The differences in care between private versus primary care in Barbados are a perceived barrier in the management of DFU among the Barbadian population. Seen by participants as a place where you receive superior treatment if you have “money”, the private sector for DFU appeared to be viewed as the better option compared to the public sector, where the quality of care was viewed as superior. The participants spoke of experiencing feeling vulnerable in polyclinics and some participants did not appear to easily trust staff.
3.3.1. Vulnerability of Users in Public Systems
Long wait times and discrimination towards some users of the public healthcare system were some of the concerns that users of the public system expressed. Especially for those working, wait times proved discouraging, as these related to loss of income, further increasing the vulnerability of patients.
LL: “because you were saying that you saw people from off the streets, people from everywhere, … in foot clinic….”
P4, FG4: “You are exposed to all infections in there (hospital dressing clinic)”
Exchange between interviewer and P4, FG1 a 76-year-old female
“2: Even when you go to clinic…. you hear…man where you going….you know them people does make your foot get chop off?
LL: That’s the word… (is that what people are saying in the community?)
2: Yep!!
1: Yea yea…
2: Meaning that at the clinic you don’t get the proper attention…and eventually you get you foot amputated.”
Exchange between P1 and P2 in FG3 and the interviewer
3.3.2. Lack of Trust in Public Primary Care Staff
Participants also expressed that they perceived a lack of confidentiality amongst healthcare staff. They felt their medical condition may be discussed with non-medical personnel.
“We telling the truth! Clinic B too… When I used to go to Clinic B, I had a friend who used to work there and every day when she come home… “you know she got a bad foot” you know this, you know that”P2, FG1, 62-year-old female
“They (are) not confidential…the nurses does talk.”P3, FG1, 50-year-old female
3.4. OT3: Feelings
3.4.1. Fear of the Hospital and Limb Loss
Hospital perceptions tied to fear of the facility were seen to be a major cause of limb loss. Participants expressed that limbs were amputated by doctors for payment as common practice and that surgeons found it easier to cut off a limb rather than attempt limb salvage.
“P2: Even when you go to clinic…. you hear…man where you going….you know them people does make your foot get chop off?”P2, FG3, 79-year-old female
“LL: What have you heard that makes you scared?
P1: Everything! Them is cut! Cut! Cut! Cut!”P1, FG 4, 52-year-old male
“Well, I would tell you the truth. If I go to hospital and they tell me to take off a foot or a limb I would be hesitant. They say you getting paid to do that but I don’t know that. I hear that the doctors are paid to cut off your foot and your hand but especially your foot”P1, FG2, 69-year-old female
3.4.2. Global Theme: Health Care-Related Stigma and Disenfranchisement
The overarching/global theme for the research was health care-related stigma and disenfranchisement. This theme encapsulated the three organizing themes derived and explains how health system challenges and perceived barriers interact. An information desert among participants coupled with feelings of fear and mistrust in the public primary healthcare systems, also fed by perceived differences in public and primary healthcare, contributed to the possible increased perception of health care-related stigma (felt, perceived, and possibly infrastructural) and subsequent disenfranchisement of individuals who were then vulnerable to limb loss. These processes are represented in Figure 1.
Figure 1.
The Relationship between Information, Disparity, and Feeling and Resultant Disenfranchisement.
3.5. Reflexivity Statement
The researcher LL is aware of their professional role and position within the landscape of DFU management in Barbados. NG is a medical professional currently practicing within the climate of non-communicable diseases in Barbados. To minimize the risk of bias, LL created summary sheets and used these along with self-reflection as data emerged, as part of the process of internal and external accountability to ensure the truest reflection of the participants’ voices within the presented account.
4. Discussion
Barbados has a history of colonialism and class structure where the voice of marginalized groups that routinely access social services is underrepresented. This, however, can be unearthed using multiple lenses of qualitative data collection through focus groups, dyads, and triads to layer the dynamics of intersection of participants and their environments. This study sought to enlighten the narrative surrounding the complications of DFU among persons living in this Caribbean country, whose experiences and voices have previously been underrepresented in documented research findings. Participants also recounted how societal knowledge of the “amputation capital of the world” colored the backdrop for their perceptions and beliefs.
4.1. OT1: Information
Trusted sources of information identified by participants appeared varied. While participants valued information provided by medical personnel, information from “the neighbor” or trusted persons within their community sometimes took precedence. Treatments and remedies described in oral traditions seemed to be especially relevant and often preferred, as is seen in other Caribbean societies with prevalent “substitution culture” []. “Substitution culture” was a term initially coined by Cawich et al. to describe the preference for ethno-botanical medicines or any alternative medical treatment instead of standard medical care []. For receiving information, participants indicated preference for one-to-one approaches to education that provide opportunity for discussion. Public information programs on television and radio and videos were preferred over written material. These findings may be useful for planning and developing educational programs for diabetic foot education and suggest that storytelling techniques and videos may be more effective promotion methods.
These findings appear to follow on from those identified in a 2015 study in a Barbadian population where participants (persons living with diabetes) described heavy reliance on “self-care” abilities and reported difficulty navigating a public health system with scarce availability of footcare appointments []. Without effective educational resources, patients are left vulnerable and unsure of what diabetic footcare that minimizes complications looks like. There may also be hidden narratives of class and stigma that may be impacting the healthcare experience.
This situation is not dissimilar to those in other diasporic populations, including inner-London black African and Caribbean communities where “getting the message across” is a challenge of diabetes self-management education [,]. Culturally informed education programs responsive to the needs of Caribbean populations are essential for developing programs to engage patients in the design of true patient-centered care.
4.2. OT2: Disparity
Unlike the situations in the United Kingdom and United States, where people of African descent are an ethnic minority, Afro-Caribbean people are the majority ethnic group in Barbados. The long-standing cultural distrust of medical systems and transgenerational preference for alternative treatments seem to be less linked to ethnic minority status and perhaps more to community experiences and preferences for natural or alternative therapies. This has been previously documented in studies reflecting on diabetic education [], asthma, smoking and lung cancer [].
“Socialized Medicine” through a Beveridge model of healthcare provides healthcare free to all its citizens at the point of care through tax payments []. Within Barbados, this model exists but, despite the availability of all major specialty services for medical care at no cost at point of care to all citizens, participants viewed public primary healthcare as inferior to private primary healthcare. Long wait times and a lack of confidentiality among clinic staff were seen as concerning to some participants. This reflected some distrust for the system, which was also viewed by participants as resorting to amputations prematurely.
The lack of trust in evidence-based medical practices and health systems links to poor cultural compatibility with health education within the current context. Cultural identity needs to be a factor in developing health education programs as it is critical to meeting the needs of users, especially within Afro-Caribbean communities.
4.3. OT3: Feelings
The overwhelming feelings of negativity surrounding the risk and experience of limb loss were captured by many of the participants’ accounts. Perceptions of hospital care, especially surrounding referral if needed for tertiary care of DFU, were linked to perceptions of automatic amputation if referred. This was mainly influenced by community beliefs and not lived experiences and was even colored by some HCPs, who indicated that patients recounted perceived high rates of amputation and mortality linked with DFU outcome. This is not verified by any official source, but has been trickled through the community and has become synonymous with DFU in Barbados. This may be a barrier to seeking care early, especially when culturally promoted alternative therapies are seen as effective as well. Persons may therefore turn to these alternative and folk remedies before seeking medical attention, as fear of hospital referral and associated likelihood of amputation are powerful disincentives.
4.4. Limitations
Our study was primarily carried out in public polyclinics and a multidisciplinary center in Barbados, and the study population comprised mainly older persons who were not dual users of private and public systems. As a result, views of private health system users were not included. However, thematic saturation was reached among all the participant sites, and this adds to the robustness of the dataset.
Despite not including private health system users, this study adds to the understanding of persons who are users of the same social supports that can be strengthened in primary care to provide improved tertiary care outcomes. Their voices can contribute meaningfully to the creation of culturally responsive education tools for Afro-Caribbean people.
5. Conclusions
Healthcare disparities among Afro-Caribbean populations exist not only in diasporic communities but also in communities of origin and may be due to access and utilization. As a result, healthcare systems should evolve to embrace ingrained cultural healthcare understandings which may not always align with the healthcare provision and education tools of the global north. HCP engagement with African and African diaspora communities should consider cultural attitudes beliefs and seek to engage patients with relatable educational interventions. As “the neighbor” within their communities is seen as a trust figure, communication through community participatory involvement and non-didactic approaches to education can help build trust in health systems.
Malalignment of patient and healthcare practitioner beliefs increases risk of non-adherence and various footcare behaviors that contribute to DFD []. This same study found that motivation for footcare was derived from lived experiences rather than simply from traditional patient education []. So-called “substitution culture” and the use of alternative therapies for management of DFD is a Caribbean phenomenon documented in neighboring countries [] and anecdotally known to exist in Barbados. As a result, evidence-based medicine and traditional approaches for patient education must involve the lived experiences of patients to develop culturally appropriate tools for addressing barriers and facilitators of DFD.
The exploration of the lived experience of diabetic foot ulcer in a SIDS highlights cultural barriers and opportunities for development of patient-centered diabetic foot education programs which can empower indigenous and diasporic Caribbean communities at risk of foot ulceration.
Supplementary Materials
The following information can be downloaded at: https://www.mdpi.com/article/10.3390/ijerph22020304/s1. Figure S1: Sankey Diagram with Key for Code Descriptions.
Author Contributions
Conceptualization, L.L. and N.G.; data Curation, L.L. and N.G.; methodology, L.L. and N.G.; formal analysis; L.L. and N.G.; reviewing and editing, M.H.C.; supervision, N.G. All authors have read and agreed to the published version of the manuscript.
Funding
This research received no external funding.
Institutional Review Board Statement
The study was conducted in accordance with the Declaration of Helsinki and approved by the Institutional Review Board of The University of the West Indies Cave Hill, Barbados and The Ministry of Health and Wellness Barbados (Ref No. CREC-CH.00124/11/2022; Approval Date: 3 April 2023) for studies involving humans.
Informed Consent Statement
Informed consent was obtained from all subjects involved in the study.
Data Availability Statement
The data presented in this study are available on request from the corresponding author due to privacy.
Acknowledgments
The authors wish to thank the Ministry of Health and Wellness of Barbados for their willingness to participate.
Conflicts of Interest
The authors declare no conflicts of interest.
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