1
INTRODUCTION
Diabetes mellitus (DM) is a serious threat to global health and diabetic foot ulcers
(DFU) remains one of the most common complications of DM
1
affecting around 20 million people annually.
2
DFUs are complex to treat, take months or years to heal, and the recurrence rates
remain high up to 40% within 1 year of healing.
3
People with DFUs are at risk of prolonged healing times and hospitalisation, reduced
quality of life
4
,
5
and higher five‐year mortality rates.
3
Moreover, DFU is a causal factor for up to 85% of patients with diabetes who subsequently
undergo lower extremity amputation
3
,
6
and is a leading cause of global disability.
2
Singapore has the highest rate of diabetic lower extremity amputation (DLEA) in the
world
7
because of DFU and the trend is increasing.
8
Additionally, DFU is a substantial clinical and economic burden to health systems
in Singapore with escalating healthcare costs corresponding to more proximal amputation
levels and high re‐admission rates.
9
Thus, understanding barriers to managing DFU is vital for improving patient care.
The vast majority of DFUs and DLEAs are preventable
10
and failures or delays in timely treatment or self‐care especially could explain the
increasing trends. Foot self‐care is pivotal to preventing DFU recurrence and reducing
the rates of DLEAs,
3
,
11
,
12
,
13
but it is often ignored.
14
,
15
While important, education about foot care alone is often insufficient in improving
self‐care and preventing DFU recurrence.
16
,
17
Patient‐related cognitive and emotional factors, especially illness perceptions, are
key determinants in facilitating or hindering appropriate foot self‐care behaviours.
18
,
19
A qualitative meta‐synthesis review found that patients with DFU often presented poor
understanding and low perceived risk for DFU, low perceived control over DFU occurrence,
and inconsistent engagement in foot self‐care.
18
Misperceptions of DFU arise when patients have poor awareness of DFU presentation,
causes of DFU and the consequences of poorly‐managed DFU.
18
Holding beliefs about diabetes, such as low control or influence on ulceration, are
associated with poor engagement with self‐care in DFU,
20
and has also been shown to adversely affect survival.
21
A lack of perceived control in preventing further DFUs is related to the emotional
and behavioural responses of individuals living with the threat of re‐ulceration.
22
Patients' perceptions of managing DFU may also differ from the standard of care guideline
recommendations despite the perceived benefits of self‐management.
Besides patient‐related factors, system‐level or healthcare provider (HCP)‐related
factors are equally important. Empathetic patient‐provider communication characterised
by sensitivity and rapport promotes openness and adherence to self‐care while insensitive
communication has been found to increase patient dissatisfaction and lead to worse
clinical outcomes.
18
There is substantial discordance between patient and practitioner's impressions and
expectations of foot self‐care and significant gaps and barriers in the way foot‐care
recommendations are communicated to patients with diabetes in the clinical environment.
23
Prior studies, however, only included HCPs in tertiary care settings and focused on
patients with diabetes without foot ulcer.
24
,
25
Patients with DFU are predominantly cared for in primary care settings. It is therefore
important to consider the needs and perspectives of primary care HCPs in DFU care
in order to address barriers and improve patient adherence to recommended foot self‐care
practices.
Studies to understand DFU recurrence are relatively few and focused almost exclusively
on patients' perspectives.
18
Less emphasis has been placed on understanding the needs of family caregivers who
are often involved in the DFU treatment process. Family caregivers support patients
with DM self‐care by administering treatment and rendering practical assistance (such
as wound care or transport), promoting/encouraging patients' self‐care and foot care
behaviours through reminders and monitoring, synthesising, and communicating health
information, and giving emotional support.
26
,
27
,
28
The diverse and central roles that caregivers play in the patients' care underlie
the complex and reciprocal influence between patients and caregivers. However, the
perspectives of family caregivers and the interdependence of the two partners (patient
and caregiver) are not well understood in DFU care.
Previous studies to understand the relationship between illness/health perception
and DFU care and self‐management behaviours mostly used quantitative methods.
20
,
21
,
29
Qualitative research is well placed to understand how individuals experience and respond
to particular situations and conditions regarding health and illness.
30
However, there is a paucity of qualitative research on illness perceptions and the
interplay of individuals (patient‐caregiver dyads) and system‐level and HCPs factors
regarding self‐care behaviour in improving DFU care in primary care. Existing studies
largely focused on patients with diabetes
31
,
32
,
33
,
34
,
35
,
36
,
37
rather than those with active DFUs. The findings from these studies cannot be extrapolated
to patients with DFU as the perceptions of foot self‐care behaviour may differ between
patients with and without prior DFU. The interdependent perceptions in self‐management
of patients, their family caregivers, and HCPs are not well understood in DFU care.
Several studies only reported the barriers to foot self‐management from HCPs' perspectives
alone.
24
,
38
,
39
The perceptions of self‐management behaviour among patients, caregivers, and HCPs
may vary significantly.
This study aimed to understand the barriers and enablers of managing DFU from the
perceptions of various stakeholders in order to identify the potentially modifiable
factors associated with suboptimal DFU care. These modifiable individual and/or dyadic
factors could inform the development of tailored interventions or refinement of existing
diabetes services in primary care.
2
MATERIALS AND METHODS
2.1
Study design
This study used a descriptive qualitative research design. We conducted individual
interviews with patients with active DFU and their caregivers. We also conducted focus
group discussions (FGDs) with HCPs who were involved in DFU care in the primary care
setting.
2.2
Ethics statement
Ethical approval for this study was provided by The National Healthcare Group Domain
Specific Review Board ethics committee (Ref No. 2021/01074) and the Nanyang Technological
University Institutional Review Board (Ref No. NTU IRB‐2022‐338).
2.3
Sampling and recruitment
Purposeful maximum variation sampling was used to identify participants for the study
from seven general primary care clinics between April and July 2022. These seven clinics
serve the population in the central and northern parts of Singapore. We purposively
sampled patients with active DFU to include individuals of different ages, genders,
ethnicities, educational backgrounds, time since diagnoses, and other clinical baselines.
Caregivers were sampled including spouses and children to gain an understanding of
the barriers to DFU care from a wide variety of angles and provide a holistic view
of DFU care. HCPs selected were those who were directly involved in the care of patients
with DFU while trying to achieve a diverse representation among the various professions,
for example, family physician, wound nurse, and podiatrist.
Patients and caregivers were recruited subject to the following inclusion criteria:
age 21 years old and above; with active DFU receiving care in primary care settings
(patients only) or providing/supporting care for a person with DFU (caregivers only),
conversant in either English or Chinese. Those unable to give consent because of cognitive
or psychiatric diagnoses or only fluent in dialects were excluded. Inclusion criteria
for HCPs were those providing care or consultation to patients with DFU at the primary
care clinics for at least 6 months. Members of the research team and HCPs who do not
provide care for DFU (eg, pharmacists and laboratory technicians) were excluded.
2.4
Interview guide
Three interview guides were developed for the three stakeholder groups based on relevant
literature and expert inputs (see Appendix A). They comprised non‐directive, open‐ended
questions on the following topics: perceptions and experiences of DFU, understanding
DFU treatment, challenges/concerns, emotions regarding DFU, needs/resources, and patient's
behavioural responses. The interview questions were pilot tested on one participant
of each group prior to the actual interviews. Questions and prompts were refined iteratively
to enable topics that have not been previously identified to be pursued in subsequent
interviews.
2.5
Data collection
Informed consent was obtained prior to data collection. The face‐to‐face individual
interviews were conducted in a private consultation room within the patient participant's
primary clinic for DFU treatment by one interviewer who had prior experience in qualitative
methodology and was effective in conducting semi‐structured interviews in both English
and Mandarin. Each interview lasted between 35 and 60 min with an average time of
45 min. Participants' sociodemographic and clinical characteristics were documented.
Recruitment for individual interviews was stopped upon thematic saturation. Thematic
saturation was accomplished when themes and subcategories in the data became repetitive
and redundant such that no new information could be gathered by further data collection.
Two virtual FGDs (up to 90 min each) were conducted in English with two different
groups of HCPs using a flexible topic guide with prompts. The zoom videoconferencing
platform was used and FGDs were led by two facilitators: a senior researcher (KG)
who has considerable expertise in qualitative methodologies and an HCP who has wound
care experience and prior qualitative health services research. There was no prior
relationship between the interviewers and interviewees for both individual interviews
and FGDs. Field memos were kept during interviews and FGDs to record situations, ambience,
and non‐verbal communications, as well as the interviewer's thoughts, analytical notes,
and any potential biases. Care was taken to clarify points raised by all participants
during each interview and verbal verification with each participant on the main points
that the participants had shared during the interviews.
2.6
Data analysis
Each interview and FGD was transcribed verbatim. The accuracy of the transcripts and
translations (from Chinese to English) were verified by comparing them against the
recordings. Transcripts were not returned to the participants for comments. Data from
transcripts were analysed discursively using reflexive thematic analysis
40
and dyadic analysis
41
and by exploring multiple perspectives on single events, rather than a single account.
The analysis first took place at an individual level, and then at a dyadic level.
Individual analyses are descriptive, moving to interpretive according to reflexive
thematic and six‐phase analytical process (ie, familiarisation with the data, generating
initial codes/themes, reviewing/defining/naming themes, and producing report)
42
as a set of guidelines, rather than rules, that were applied in a flexible manner
to fit the data and the research questions.
40
Dyadic codes/summaries were created based on the codes/summaries for the individual
pairs on how each pair addressed a particular problem. Further codes were developed
from the dyadic analysis that reflected the pairs' experiences and needs rather than
individual experiences.
43
All themes emanating from transcripts/codes/summaries were identified through both
an inductive and iterative process. Data analysis began with reading and achieving
familiarity with the transcripts for pre‐analytical understanding. Next, the transcripts
were coded line‐by‐line inductively and deductively to ensure important aspects of
the data were not missed, while efficiently assigning codes using pre‐established
codes derived from the Social Ecological Model (SEM) framework.
44
The SEM is a theory‐based framework for understanding the multifaceted and interactive
effects of personal and environmental factors related to behaviours.
44
SEM is used as a foundation for planning and understanding the determinants of self‐management
behaviours in patients with diabetes.
45
,
46
Current evidence reveals that the social impact, family, and health system factors
of DFU are important factors for the management and prevention of diabetic foot diseases.
26
,
47
,
48
,
49
Hence, the SEM framework was used to deductively map barriers and enablers of foot
self‐care behaviour across multiple levels of the healthcare system, such as individual,
healthcare system, relational, and community social‐cultural levels. The rationale
for this framework application was to provide us with a robust platform to enable
further exploration of factors that influence the adoption of the findings across
micro (individual), meso (healthcare system), and macro (relational and social‐cultural)
levels.
2.7
Researcher's positionality and ‘reflective lenses’
The researcher is a Senior Wound Nurse Clinician who has been largely involved in
the treatment of patients with DFU within the public health primary care sector in
Singapore and deals with complex cases of individuals with DFU in the healthcare cluster.
The researcher's clinical experiences allow her reflective and thoughtful engagement
with the data and the analytic process
40
to identify the barriers to DFU care and potentially modifiable targets for care intervention.
2.8
Methodological rigour
Rigour was ensured through attention to study credibility, confirmability and dependability,
and transferability.
50
Credibility was supported by the fact that the principal investigator (ZX) is a wound
care nurse specialist and has long‐term ongoing interactions and practical experience
in caring for patients with DFU. She is thus familiar with issues faced by patients
and their care processes. Additionally, the other researchers had prolonged engagement
with the topic and used reflexive thematic data analyses. Regular study team debriefing
was also conducted to improve the data analysis process. Confirmability was enhanced
by the continual documentation of field notes and verification of transcripts and
findings by the researchers. Dependability was achieved by having team members (ZX
and PL) participate in the analysis process and identify similarities to enhance findings.
Any disagreements were resolved with a third person until a consensus was reached.
Transferability was supported through a detailed description of the study participants
and the use of verbatim quotes to support themes. The findings are reported according
to the consolidated criteria for reporting qualitative research (COREQ) guidelines.
51
3
RESULTS
3.1
Participants' characteristics and sociodemographic
Twenty‐eight individuals participated in the study including fifteen patients with
active DFU, five family caregivers, and eight HCPs who consisted of three senior family
physicians, four wound care nurses, and one podiatrist. Five eligible patients declined
to participate in the interview because of work/personal commitments after wound care
in the clinic. No one dropped out of the study after the interviews were completed.
The characteristics and sociodemographic information of all the participants are presented
in Tables 1, 2, 3. Of the fifteen patient participants, the average age was 64.5 years;
the average duration of diabetes was 22.7 years; the average duration of DFU was 6.5 months.
All patient participants had a history of previous DFU, and up to 80.0% of them had
a history of previous amputation. Toe ulcers made up 66.7% while plantar ulcers constituted
33.3% of the sample. The percentages of neuropathic DFU, neuro‐ischaemic DFU, and
ischaemic DFU were 60.0%, 33.3%, and 6.7% respectively.
TABLE 1
Characteristics of patients with active diabetic foot ulcers who participated in individual
interviews (N = 15).
Patient name
a
Age
Race
Gender
Marital status
Highest education level
Employment
Occupation (if retired or unemployed, note last employment)
Duration of DM (years)
Duration of DFU (months)
History of DFU
History/Level of Amputation
Location of Wound
Type of DFU
c
John
62
Indian
Male
Married
Secondary school
Retired
Security officer
30
13
Yes
Yes, transmatatasal
Plantar and transetatarsal head
Neuropathic DFU
Tan
64
Chinese
Male
Divorced
Primary school
Unemployed
Electrician
14
3
Yes
Yes, toe
Toe post‐amputation site
Neuropathic DFU
Steve
70
Malay
Male
Married
Secondary school
Unemployed
Taxi driver
35
24
Yes
Yes, left BKA**
Toe
Neuropathic DFU
Rahim
55
Malay
Male
Married
Secondary school
Unemployed
Taxi coordinator
10
2
Yes
Yes, Toe
Plantar and metatarsal head
Neuropathic DFU
Andy
46
Chinese
Male
Single
Junior College
Employed
Video editor
8
3.5
Yes
Yes, toe
Toe
Neuro‐ischaemic DFU
Sophie
63
Chinese
Female
Married
Primary school
Unemployed
Coffee shop assistant
40
2
Yes
Yes, toe
Toe
Neuropathic DFU
Mary
71
Chinese
Female
Married
Primary school
Unemployed
Housewife
21
2
Yes
Yes, right BKA
b
Toe
Neuro‐ischaemic DFU
Quek
70
Chinese
Male
Married
Primary school
Retired
Driver
23
2
Yes
Yes, toe
Toe
Neuro‐ischaemic DFU
Mike
56
Chinese
Male
Single
Primary school
Unemployed
Security manager
22
4
Yes
Yes, toes
Toe
Ischaemic DFU
Wilson
73
Indian
Male
Married
Primary school
Employed
Cleaner
30
4
Yes
No
Plantar
Neuropathic DFU
Robert
58
Indian
Male
Married
Primary school
Employed
Security manager
21
6
Yes
Yes, toe
Plantar
Neuropathic DFU
Tina
59
Malay
Female
Married
Secondary school
Unemployed
Food company clerk
21
6
Yes
No
Plantar
Neuropathic DFU
George
70
Eurasian
Male
Married
Bachelor
Employed
Security manager
22
24
Yes
Yes, transmetatarsal
Plantar and transetatarsal head
Neuropathic DFU
Cherry
87
Chinese
Female
Married
No formal education
Unemployed
Housewife
21
3
Yes
No
Toe
Neuropathic DFU
Gary
63
Chinese
Male
Married
No formal education
Unemployed
Maintenance worker
22
3
Yes
Yes, toe
Toe post‐amputation site
Neuro‐ischaemic DFU
a
Pseudonyms were used to preserve the anonymity of the patients.
b
BKA: below‐knee amputation.
c
DFU: diabetic foot ulcers.
TABLE 2
Characteristics of caregivers of patients with diabetic foot ulcers who participated
in individual interviews (N = 5).
Relationship to patient* (pseudonym)
Age
Race
Gender
Employed
Occupation (if retired or unemployed, note last employment)
Steve's wife
66
Malay
Female
Unemployed
Housewife
Mary's husband
74
Chinese
Male
Unemployed
Construction worker
George's wife
44
Chinese
Female
Employed
Retail clerk
Cherry's daughter
65
Chinese
Female
Unemployed
Housewife
Gary's son
27
Chinese
Male
Employed
Clerk of public sector
TABLE 3
Characteristics of HCPs of patients with a diabetic foot ulcers in primary care who
participated in focus group interviews (N = 8).
Study ID
Age
Gender
Profession
Years of service in healthcare
Years of service in primary care
Accumulated years of service in taking care of DFU
a
HCP1
36
Female
Wound nurse
12
5
5
HCP2
40
Female
Wound nurse
16
10
10
HCP3
34
Female
Wound nurse
12
5
5
HCP4
50
Female
Physician
25
19
6
HCP5
37
Male
Physician
12
7
6
HCP6
37
Male
Physician
12
7
7
HCP7
35
Female
Wound nurse
13
6
5
HCP8
37
Male
Podiatrist
13
9
13
a
DFU: diabetic foot ulcers.
3.2
Summary of themes
The codes derived were organised into three interlinked superordinate themes based
on the SEM. The first theme was those factors related to the barriers and enablers
around the individual micro level, followed by the healthcare system meso level, and
the macro level related to wider relational and community/society. The three superordinate
themes were individual perceptions, healthcare system influences, and relational and
community societal factors. The nine subthemes across micro‐ to macro‐levels comprised
six barriers (eg, lack of control over ulceration and treatment, disease fatigue,
perceived low threat of consequences, poor patient‐practitioner communication, financial
concerns, and perceived social stigma) and three enablers (eg, motivation through
personalised care, family support, and community social support). The interdependent
superordinate themes and subthemes on barriers and enablers of managing DFU embedded
in the SEM framework are displayed in Figure 1.
FIGURE 1
The interdependent superordinate themes and subthemes on barriers to and enablers
of managing DFU embedded in the Social‐Ecological Model across micro‐ to macro‐levels.
3.3
Superordinate themes and subthemes
3.3.1
Superordinate theme 1: Individual perceptions (micro‐level)
Subtheme: Lack of control over ulceration and treatment (barrier)
The complexity of DFU resulted in a lack of perceived control over oneself to manage
DFU which adversely affected patients' physical and emotional well‐being. The experiences
of living with DFU and heightened risks for amputation were viewed as uncontrollable.
The constant threat of lower limb amputation made patients feel distressed/powerless
which ultimately impeded treatment adherence.
…My toe turned black… it's bad control of diabetes! It goes also to the clinic then
referred me to hospital then said to chop off the thing. I was not in a good mental
place during the time. I did not go to see doctor, even though I'm supposed to. It's
self‐destructing. I totally like gave up on myself… (Andy).
Patient participants with multiple episodes of re‐ulceration and re‐amputation expressed
very low confidence in preventing their feet from getting DFU and viewed DFU as unpredictable.
They felt vulnerable and powerless to manage DFUs and reported being overwhelmed by
prolonged wound healing and frequent recurrence of DFUs. Lack of control over the
DFU appearance and outcomes made both patients with DFU and caregivers harbour strong
feelings of anxiety and worry about DFU prognosis, complications, and possible amputations
and feel discouraged about foot self‐care as healing and controls seemed elusive and
non‐feasible. Negative experiences (ie, fear, anxiety, and stress) might affect one's
decision making in performing self‐care.
…… they (foot ulcers) come on their own and cannot be prevented! If it (ulcer) wants
to come, it will come. If it wants to turn badly, it'll turn out very badly. It cannot
be prevented; it's been about 15 years, on and off… I am very worried about my wound
if it will get worse, any broken skin. If it relapses, that's very horrible… Sometimes
there are blisters… then fluid comes out became a wound, no choice! … (sigh…). (Mary).
… we never know when it (ulcer) comes back. I cannot do anything… so many years… the
only option was to bring her to see a doctor. I could only rely on the doctor, no
choice! (sigh…) (Mary's husband).
HCPs commented how the low control over healing, made a motivation to follow self‐care
low as efforts seemed futile and unproductive.
… because they already thought their wound is becoming the biggest trouble and challenge
in their life. I feel like, instead of coping (with it), they are trying to run away
from it. (HCP3).
Subtheme: Disease fatigue (barrier)
The couple participants recounted feeling fatigued because of the complex unpredictable
prognosis of their wound requiring frequent clinic visits for wound treatment and
emotional exhaustion related to slow healing. Some patients with plantar ulcers and
multiple episodes of re‐ulceration/re‐amputation with prolonged healing chose to let
go of any efforts or avoided active engagement in treatment. The unpredictability
of their illness treatment left them feeling physically and mentally exhausted resulting
in a sense of hopelessness and powerlessness in their future life. They appeared to
have low treatment efficacy and were less motivated in participating in active self‐care
practices and performing their caregiving role leading to a sense of resignation and
disease fatigue.
…controlling diet made me loss appetite and coming for wound dressing made me feel
exhausted! I am very worried that I will give up any time. So I'm now very laid back,
do whatever I want! … now is 2 years! I'm losing patience already so you know, I'm
like just letting it go… I got no more hope… The most challenging task, activities
for self‐care is to accept the fact that I need to come back here for wound dressing…
(sighs) that is the biggest problem! twice a week, every week. And now it's 2 years!
If 2 years that hole cannot heal, I do not see how few months gonna help. Just let
it be… (sigh…) (George).
Sometimes I feel exhausted but what to do? I am his wife… His wound has been there
for so long… it seems no way to heal… (sigh…) It has been many years facing the challenges
and living with him with a longstanding wound with many episodes of recurrence. I
am already numb and have no high expectations on him. Whatever will happen, will happen…
(George's wife).
Subtheme: Perceived low threat of consequences (barrier)
Patient participants, despite knowing the importance of diabetes and foot self‐care,
underestimated the seriousness, susceptibility, and threat of the consequences of
their health conditions and took risks for non‐adherence to treatment advice. Although
she was equipped with good knowledge, her low perceived threat of consequences affected
her decision‐making in good adherence to self‐care advice likely because of the chronic
nature of DFU leading to low motivation.
Because sometimes like “oh okay,” because nothing happened. I knew I got diabetes,
I knew I cannot take sugar. But when I drank coffee with sugar, nothing happened,
you know my feet are okay. You know my legs and feet do not give me any problems.
When I get new wound, it healed. I always said, nothing one [it's nothing], it's okay
to drink coffee with sugar… but now I cannot think like that already… (Tina).
HCP participants also shared some patients' ‘carefree’ attitudes reflecting the perceived
low threat of DFU, which subsequently made them view the treatment of severely infected
DFU as a lower own (self) priority despite placing strong demands for urgent DFU care
from their HCPs.
“They really do not care! They do not see that this is severe enough. His toe already
turned to gangrene and the whole foot become swollen and gangrenous… he does not know
what's the priority in their life… the foot already like this but still taking a risk
and want to go home to pack their things first instead of going to hospital (emergency
department) instantly… (HCP3).
Subtheme: Motivation through personalised care (enabler)
Patient participants raised the importance of personalised consultation(s), trust,
and committed relationships with HCPs. They reported that more personalised consultations
encouraged them to take an active role in foot self‐care. They were very keen to see
the same wound nurse not only for wound care but also to get personalised support
and/or individualised motivation to live well with their chronic foot conditions.
I'm just hoping that the same wound nurse can continue to dress my wound and motivate
me … The way she works, she wants to make me live. So it makes me very embarrassed
that I do not want to live. So if I do not help myself, I'm gonna give her more work.
Yes! That's the word, guilty! (George).
HCP participants also felt that DFU services needed more personalisation and to move
away from rigid content delivered uniformly for all patients towards a more tailored
one that aligns better with patient values and priorities.
I think, instead of pouring more resources into like blanket education, maybe we can
look into how we impart that education on self‐care… perhaps targeting it and individualising
it to that patient. And then harmonising that with what the patient is passionate
and motivated about… (HCP6).
Many patient participants felt that simple words of encouragement and affirmation
from their HCPs validated their effort(s) on ulcer healing and prevention and made
them feel more motivated to keep going.
I just wanted to hear that “hey, your wound is improving!”… I guess the positive outlook
helps us a lot. …that totally like elevates you from distress. You would not think
too negatively, you would not think so depressing, it's like, at least you know it's
improving, you'll survive! … at least, it helped me lift up a bit. So, it's still
hope! It's just stick to your strict control of diet control or all these things,
there's still hope… (George).
3.3.2
Superordinate theme 2: Healthcare system influences (Meso‐level)
Subtheme: Poor patient‐practitioner communication (barrier)
Patient participants expressed frustration and some dissatisfaction with patient‐practitioner
communication. Negative interactions undermine motivation to self‐care and follow
treatment recommendations.
… a senior consultant using words like “I hope you get better”! If you hope I get
better, then I'm a dead duck. Then she said “why?” You are the doctor, you do not
hope I get better, you should make me better!! You know, if you hope then what's left
of me? Since then, I've stopped seeing doctors for my diabetes (angry face) …I feel
that doctors should take a course in how to talk to patients! (George).
Patient participants value empathy and emotional connections in their health care
interactions. They expressed that empathy from HCPs was key to allowing them to share
their concerns so that they can be addressed or at least be understood. This would
help them to be more open to considering changes in their behaviours.
… When you talk to your patient, you must touch their heart! If you touch their heart,
they will let you know everything. Being patient and showing empathy, you do not need
to ask, they will tell you all their story. If you nurse or doctor, do not understand
your patients, it's very hard for you to communicate with your patients and have them
listen to your advice! (Steve).
Majority of HCP participants noted the limited consultation time as a critical barrier
to the in‐depth discussion(s) with patients. Empathetic communication was recognised
by both patients and HCPs but the latter group felt that in‐depth communication was
hindered by time restraints.
…there's very little time allocated to see the patients and we do not have sufficient
time to evaluate what's happening to the patients… I wish I can do all these on my
own and then follow‐up on the same patient but…logistically it's not easy because
of limited consultation time per patient. Overall, not enough time has been put in
for care of patients with diabetic foot ulcers (HCP5).
Subtheme: Financial concerns (barrier)
Many patient participants expressed their concerns and dissatisfaction with the costs
of the prescribed off‐loading shoes. They described the cost as a financial constraint
and barrier which likely hindered their adherence to footwear advice from their HCPs.
(off‐loading) shoes are expensive $200! What is this?! … I do not understand why they
are expensive! Those are basic needs for self‐care and should be subsidised! The problem
is money…
(Tan)
The financial constraint was further confirmed by HCP participants who recounted stories
of many of their patients being put off by the high costs of therapeutic footwear.
…Once they found out the price of the off‐loading shoes, they got a shock. And then
they said… “Oh, maybe this is less priority.” They pushed this part (footwear advice)
backwards… (HCP8).
3.3.3
Superordinate theme 3: Relational and societal factors (macro level)
Subtheme: Perceived social stigma (barrier)
Some patient participants expressed that prescribed footwear was ugly and stigmatising.
They felt embarrassed and stressed about being judged by people around them because
of the prescribed footwear.
I used to wear high heels. Then suddenly I need to change everything. So like, all
of a sudden. The doctor advised me, must wear this shoe, recommended this shoe. To
me like, “must I wear this? So ugly!” when people look at my shoes, putting away all
my shame is not easy… (Tina).
Patient participants felt ashamed and stigmatised to live with diabetes. They were
particularly sensitive to others' judgements about having diabetes. Those social judgements
and biases about diabetes and obesity had a negative impact on their mental health
and hurt their feelings. The hurtful stigmatisation and the negative perspectives
left them feeling tough to internalise it, espousing negative views of themselves.
They described that patients with DFU need support from society to improve their self‐care
behaviours.
I feel diabetes very shameful, “you got diabetes!” You know that kind comments. Diabetes
so what? I know my life sucks… I think self‐care all these things are like need help
from society. It does not help that it's like society treats diabetics like, you go
outside, and diabetes is like ostracised and all these things. Because I'm fat. Since
I was young I was this size, I was ostracised all the time. It is tough and will take
a long time for me to like, do not care about opinions from other people…” (Andy).
Subtheme: Family support (enabler)
As shared by patient participants, their family members were an important source of
emotional and practical support in dealing with DFU. Family members took on the responsibility
for several tasks for their loved ones especially when patients themselves were no
longer able to perform because of their amputation and other medical conditions. This
was confirmed by the dyad participants.
I had a problem to reach my foot for daily check‐up. My husband helped me take photos
of the bottom of my foot and toes and show me the photos for me to check on my foot
for any cuts or wounds (Mary).
Reminding her to take medication and her insulin jabs every morning, helping her to
take photos of her foot to let her inspect her foot daily… those are my daily routine
and I am like her family doctor… she needs my help and emotional support towards her
health and self‐care (laugh) … (Mary's husband).
Subtheme: Community social support (enabler)
Positive social influence appeared to be an important determinant of the self‐management
behaviour of the patient participants we interviewed. Patient participants reflected
that the government had provided more support in recent years to empower people with
the knowledge and skills to be better informed about how to monitor and care for their
diabetes.
…we got plenty of education resources from government and society, newspapers, also
TV programs, internet and everything to show us what is diabetes and complications
like diabetic foot and how to take care of them. We also got free diabetes health
screening in our community…” (Steve).
Patient participants also shared their observations about the positive social influence
of healthy living related to diabetes diet advice. This appeared to have a positive
impact on lifestyle change towards improved self‐management for individuals with diabetes
and foot complications.
…healthy living becoming a norm in society … Suddenly I see a lot of people asking
for all these (sugar‐free drinks). So I know Singapore is becoming a health conscious
country already! Same to the foot self‐care… the feet are the most important thing,
so wearing shoes is safer, much safer” (Rahim).
4
DISCUSSION
The recognition of the challenges related to diabetes care has led to the widespread
implementation of various support programmes for patients. While these programmes
have generally been effective and acceptable by patients,
52
the rates of adherence to foot care remain suboptimal and foot care is still not sufficiently
prioritised by patients despite the serious repercussions.
9
,
15
Most importantly, despite the availability of specialised diabetes care for DFU in
primary care in Singapore and other settings, and the timely identification and treatment
of individuals with DFU in the community, the incidence of diabetes‐related amputation
caused by DFU remains alarmingly high.
53
To better understand the barriers faced by patients with DFU, this study combined
interview data from patients, family caregivers, and HCPs to delineate the barriers
faced by patients with DFU so as to identify actionable targets for refinement of
existing services and the development of DFU specific interventions in the primary
care settings.
Our study findings indicated that perceptual and emotional processes namely the interplay
of low perceptions of control, low perceived threat, and disease fatigue hindered
patients' DFU management by triggering emotional and physical exhaustion and low motivation
to adopt DFU self‐care recommendations. Many of the study participants had prior DFU
experience with a prolonged journey of DFU care and reported a low perception of control
over ulceration and treatment outcomes. Similar to prior work,
20
,
21
,
22
,
36
our participants reported low personal control over ulceration and treatment outcomes.
They felt that ulcers were unpredictable and uncontrollable, and recounted their personal
or indirect/vicarious experiences of multiple episodes of re‐ulceration and/or amputation.
The persistent wounds and their poor outcomes fuelled low control perceptions and
adversely affected emotional and physical well‐being and demotivated their adherence
to treatment. Emotional distress and emotional vulnerability were reported which further
eroded motivation towards treatment. Most notable was however the link between low
control to disengagement from treatment, such as low foot self‐care behaviours,
20
,
36
which is consistently related to poor prognosis including survival.
21
The struggle of regaining control after amputation has been highlighted in recent
qualitative work.
54
The intensive and prolonged treatment protocols for DFUs, and the slow healing rate
of DFUs not only fuelled low control perceptions but also triggered disease fatigue.
Disease fatigue was vividly discussed by all participants, especially among those
with plantar/trans‐metatarsal head ulcer(s) with prolonged wound healing and multiple
recurrence/re‐amputations requiring long‐term wound care. Fatigue has been studied
extensively in the context of chronic diseases
55
like diabetes,
56
and more recently in coronavirus infection.
57
It was thought to comprise of physical, cognitive, and emotional aspects but it is
not well understood in relation to DFU. Study findings indicated that disease fatigue
was more than physical experience and symptoms and included cognitive and emotional
exhaustion with DFU that dampened patients' motivation towards self‐management and
foot care.
It is of note that although most study participants had a prior history of DFU and/or
direct /indirect experience(s) of amputation, the majority of those interviewed reported
low perceived threat (eg, severity and/or susceptibility) for the serious complications
of DFU which undermined foot self‐care as repeatedly shown in previous studies.
14
,
20
,
36
,
37
It is possible that patients with DFU who typically have multiple comorbidities or
even end‐stage kidney disease may not view DFU as threatening as other DM complications.
As noted by qualitative review, patients often view amputation as a rare DM complication
and do not consider wounds as a major cause of concern.
18
Besides individual beliefs and perceptions, interpersonal and system factors were
also important. Poor patient‐practitioner communication and strained interactions
as shared by the study participants discouraged treatment adherence. The importance
of empathetic communication and forming emotional connections/rapport with HCP teams
have been identified by a recent qualitative meta‐synthesis review
18
as critical for fostering a sense of trust and motivation towards treatment. HCP participants
in our study also recognised the value of good communication but often felt disempowered
by time constraints.
48
,
58
Another interpersonal barrier to DFU care was the perceived stigma, especially with
regard to specialised footwear and appearance.
1
,
52
,
53
Patient participants felt embarrassed and worried about being judged for their appearance
with customised therapeutic footwear and often chose not to follow the footwear advice
increasing the risk for poor healing and re‐ulceration. Financial constraints were
also noted as costs
33
,
48
,
49
,
59
related to footwear and transport for foot treatment hinder treatment adherence.
While strained interactions hindered adherence, personalised care emerged as a key
enabler. Patients reported that personalised wound care consultations made them feel
motivated towards treatment through personalised care. Patients especially noted that
seeing the same HCP (eg, wound care nurse) was not only for wound care but also getting
personalised support/motivation from the attending HCP to encourage/empower them to
live well with their chronic foot conditions. Personalised care approach is the key
to the chronic care model and personalised care planning refers to the negotiated
discussion (or series of discussions) between a patient and an HCP to clarify goals,
options, and preferences to develop an agreed plan of action based on the mutual understanding
for self‐management improvement.
60
Personalised care may enhance DFU care through a collaborative process in which the
patient and HCP discuss treatment or management goals for self‐management improvement.
As consistently documented in the literature,
26
,
27
,
28
family support was pivotal and family caregivers were identified as the key allies
in DFU management. Family caregivers provide both practical assistance and emotional
support for patients with DFU.
26
,
28
In addition, patients also acknowledged the importance of community social support.
Supportive family and community networks may mitigate emotional distress, buffer disease
fatigue and enhance patient resources and self‐management hence programmes aimed to
build or mobilise these networks may be warranted.
A main strength of this study is the triangulation of perspectives of key stakeholders
in DFU, that is, patients, their caregivers, and HCPs which allowed a more in‐depth
understanding of the challenges of DFU management in primary care. In addition, the
adoption of SEM theory helped formalised connections across micro to macro levels
and the dynamic interplay of various multifaceted factors in DFU. We also conducted
explorative dyadic analyses to contrast and combine the perspectives of patient and
family caregivers in each dyad. These dyadic analyses hold promise for deepening and
broadening the content, as well as for the trustworthiness of our findings.
41
Finally, a number of limitations need to be considered. Our purposive sampling method
did not manage to recruit any patients with first‐episode DFU. Further work is needed
to understand comprehensively the illness perceptions of patients with new‐onset DFU
in order to prevent new DFU occurrence. There were a small number of caregiver participants
in the study, as most of our patient participants did not have an accompanying caregiver(s)
for wound treatment in the participating clinics on the interview day. Future studies
should consider conducting interviews in the home of participants as this may allow
for greater inclusion of dyad samples compared with the clinical setting.
To our knowledge, this is the first qualitative study conducted in Singapore that
revealed the interdependent perceptions of patients, caregivers, and HCPs on DFU self‐management
in primary care. Low personal beliefs including low personal control over ulceration
and treatment, disease fatigue, and the low perceived threat of consequences were
the key individual barriers to DFU self‐management, particularly for patients with
an ulcer with prolonged healing and complex prognosis. Poor patient‐practitioner communication,
financial constraints, and social stigma also hindered foot self‐care practices. Motivation
through personalised care, family, and community social support were key enablers
to DFU self‐management behaviours. The findings can be used to develop interventions
for improving self‐management capabilities in the context of DFU management and prevention
in primary care.
AUTHOR CONTRIBUTIONS
Research idea and study design: Konstadina Griva, Xiaoli Zhu, and Eng Sing Lee; data
collection: Xiaoli Zhu and Phoebe X.H. Lim; data analysis/interpretation: Xiaoli Zhu,
Phoebe X.H. Lim, and Konstadina Griva; supervision or mentorship: Konstadina Griva
and Eng Sing Lee; manuscript drafting and revision: Xiaoli Zhu, Konstadina Griva,
Eng Sing Lee, Phoebe X.H. Lim, Yee Chui Chen, and Frederick H. F. Chan.
FUNDING INFORMATION
Centre for Primary Health Care Research and Innovation, a partnership between the
Lee Kong Chian School of Medicine, Nanyang Technological University Singapore, and
the National Healthcare Group Singapore, Grant/Award Number: Ref No. 7.1/008.
CONFLICT OF INTEREST STATEMENT
The authors declare that they have no conflict of interest.