Exploring barriers and enablers of self‐management behaviours in patients with diabetic foot ulcers: A qualitative study from the perceptions of patients, caregivers, and healthcare professionals in primary care

Abstract

Diabetes mellitus (DM) is a serious threat to global health and diabetic foot ulcers (DFU) remains one of the most common complications of DM1 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 life4, 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 amputation3, 6 and is a leading cause of global disability.2 Singapore has the highest rate of diabetic lower extremity amputation (DLEA) in the world7 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 preventable10 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, 11-13 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.26-28 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 diabetes31-37 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. 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. 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). 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. 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. 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. 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 analysis40 and dyadic analysis41 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 with the transcripts for the transcripts were and to important of the data were not while codes using codes from the The is a for understanding the and of and factors related to is used as a for and understanding the determinants of self-management behaviours in patients with that the and health factors of DFU are important factors for the and of diabetic foot the was used to barriers and enablers of foot self-care behaviour multiple levels of the healthcare such as healthcare and The for this was to provide with a platform to enable further of factors that influence the of the findings and and The researcher is a who has been largely involved in the treatment of patients with DFU within the health primary care in Singapore and with complex of individuals with DFU in the healthcare The clinical experiences and engagement with the data and the to identify the barriers to DFU care and potentially modifiable for care was through to study and and was by the that the is a wound care and has and practical experience in for patients with DFU. is with by patients and their care Additionally, the other had prolonged engagement with the topic and used reflexive thematic data study team was also conducted to improve the data analysis process. was by the of and verification of transcripts and findings by the was by team and in the analysis process and identify to were with a person a was was through a of the study participants and the of to support The findings are reported according to the criteria for qualitative research individuals in the study including patients with active DFU, family caregivers, and HCPs who of three senior family wound care and one podiatrist. patients to in the interview because of wound care in the one of the study the interviews were The characteristics and sociodemographic information of all the participants are presented in the patient the average age was the average of diabetes was the average of DFU was months. All patient participants had a of DFU, and up to of them had a of ulcers up while ulcers of the The of DFU, DFU, and DFU were and The codes were three themes based on the The first was those factors related to the barriers and enablers around the individual level, by the healthcare level, and the related to and The three themes were individual perceptions, healthcare and and The to comprised barriers (eg, lack of control over and treatment, perceived low threat of poor and perceived and three enablers (eg, through family and The interdependent themes and on barriers and enablers of managing DFU in the are in control of It also to the clinic then to then to the was not in a place during the not to up on on their and cannot be it to it it to It cannot be been about 15 on and about wound it any it there are then became a no when it cannot do the only was to to a could only on the no because their wound is the and in their of are trying to from and for wound that give up any do is it no more The most for self-care is to the that to for wound that is the a years that cannot heal, do not how few months it but to wound has been there for it no way to It has been years the and living with with a wound with of and have no high expectations on because diabetes, cannot take when with are and do not give any new it one to with but cannot that do not They do not that this is to and the foot and not the in their the foot this but a risk and to to their first of to that the wound to wound and The way to it that do not to do not give more the of more how that education on it and it to that then that with the patient is and to that wound is the a from not not at least at it up a to control of control or all these a senior using then a are the do not then of stopped for diabetes that take a in how to to to their their patient and do not to all their or do not understand patients, for to with patients and have them to time to the patients and do not have time to to the do all these on and then on the patient not because of consultation time not time has been in for care of patients with diabetic foot ulcers are is do not understand are Those are needs for self-care and be The is found the of the a then this is They this used to high to all of a The this recommended this when people at all is not diabetes that comments. Diabetes self-care all these are from It not that and diabetes is and all these was was this was all the It is and take a time for to do not care about from other had a to foot for take of the of foot and and the for to on foot for any or to take and to take of foot to foot those are and family needs and emotional support health and self-care of education from and also and to is diabetes and complications diabetic foot and how to take care of We also diabetes health in living a in a of people for all these Singapore is a health to the foot the are the most important is The of the related to diabetes care has led to the of various support for While these have been effective and by the rates of adherence to foot care remain suboptimal and foot care is not by patients despite the serious 15 despite the of diabetes care for DFU in primary care in Singapore and other and the timely and treatment of individuals with DFU in the the of amputation by DFU remains understand the barriers by patients with DFU, this study interview data from patients, family caregivers, and HCPs to the barriers by patients with DFU as to identify for refinement of existing services and the development of DFU interventions in the primary care settings. study findings that and emotional the interplay of low perceptions of low perceived and patients' DFU by emotional and and low to DFU self-care of the study participants had prior DFU experience with a prolonged of DFU care and reported a low perception of control over and treatment to prior participants reported low control over and treatment They that ulcers were and and their or experiences of multiple of and/or The and their poor low control perceptions and adversely emotional and and their adherence to and emotional were reported further was the between low control to from treatment, such as low foot self-care is related to poor including survival.21 The of control amputation has been in qualitative The and prolonged treatment for and the healing rate of DFUs not only low control perceptions but also was by all especially among those with with prolonged wound healing and multiple wound care. has been in the of and more in It was to of and emotional but it is not well understood in to DFU. findings that was more than experience and and included cognitive and emotional with DFU that patients' self-management and foot care. It is of that most study participants had a prior of DFU and/or of the majority of those reported low perceived threat (eg, and/or for the serious complications of DFU foot self-care as shown in It is that patients with DFU who have multiple or may not view DFU as as other DM by qualitative patients often view amputation as a DM and do not consider as a cause of Besides individual beliefs and perceptions, and factors were also important. communication and as shared by the study participants treatment The of communication and emotional with HCP have been identified by a qualitative meta-synthesis as for a of and HCP participants in study also the of communication but often by time to DFU care was the perceived especially with to and participants and about for their with and often not to the increasing the risk for poor healing and were also as related to and for foot treatment treatment While care as a key Patients reported that wound care them treatment through care. Patients especially that the HCP (eg, wound care was not only for wound care but also from the HCP to them to well with their foot care is the key to the care and care to the of between a patient and an HCP to clarify and to an of based on the understanding for self-management care may DFU care through a process in the patient and HCP treatment or for self-management in the family support was pivotal and family caregivers were identified as the key in DFU Family caregivers provide both practical assistance and emotional support for patients with patients also the of family and may emotional and patient and self-management aimed to or these may be A main of this study is the of perspectives of key stakeholders in DFU, that patients, their caregivers, and HCPs a more understanding of the of DFU in primary care. the of to levels and the interplay of various factors in DFU. We also conducted dyadic analyses to and the perspectives of patient and family caregivers in each These dyadic analyses for and the as well as for the of a of to be sampling not to any patients with DFU. Further is to understand the illness perceptions of patients with DFU in order to new DFU There were a of participants in the as most of patient participants not have an for wound treatment in the clinics on the interview studies consider conducting interviews in the of participants as this may for inclusion of with the clinical setting. this is the first qualitative study conducted in Singapore that the interdependent perceptions of patients, caregivers, and HCPs on DFU self-management in primary care. beliefs including low control over and treatment, and the low perceived threat of consequences were the key individual barriers to DFU for patients with an with prolonged healing and complex and also foot self-care practices. through and support were key enablers to DFU self-management The findings be used to interventions for improving self-management in the of DFU and in primary care. and study and data and data and or and and and The of Nanyang Technological University and National Healthcare Group Singapore for the for Care and The to their to and for their to wound care for their support in for in the The to all participants in this study for their time and for Care and a between the of Nanyang Technological University and the National Healthcare Group No. The that have no of have been with self-care of living with an active foot a are to and diabetes of all these DM self-care are the more about do have the most questions or about self-care for are the that may more about are to important is foot care for in of with about understanding of diabetes and diabetic foot ulcers more on example, is perceived of DM to DFU or is perceived of diabetes and more about understanding of for example, to treatment including and are of about foot are with this for are about are with foot especially those foot care that may be more for more do and healthcare could do to support could support with foot are to treatment and for foot example, are the and of foot wound that to treatment to (eg, foot do and could have to from a new diabetic foot with on care of with a diabetic foot more on may be of to with as especially to improve the of example, improving foot self-care as as on do are the main for in foot more on do do to support and who is living with an active foot a do and could have to from a new diabetic foot ulcers or with on care of patients with diabetes and diabetic foot more on with experience with providing care for patients with DFU. are the most parts of with DFU well and DFU care and may often do the most of these is the of a patient in foot important and may in the way of of foot care recommendations parts do are the most for may be the for example, to treatment including treatment, to increase the of in patient's self-care and have been with in and for patients who are living with an active foot a do patients and family caregivers do to achieve do and could have to them from a new diabetic foot ulcers or The data that support the findings of this study are from the corresponding upon

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