qualitative nursing research articles on diabetes

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Purpose: Nurses are key players in the care of diabetes patients. It is not clear how nurses experience the diabetes care role within a multidisciplinary care context. This article reports the perspectives of nurses working in one National Health Service trust in the United Kingdom, about their role in diabetes care. Methods: The study employed a descriptive qualitative approach. Participants were nurses who worked in two diabetes clinics in one National Health Service trust in the United Kingdom. The study included 10 female participants, who provided nursing care to patients with diabetes. Data were collected between May and September 2017. Results: Three themes were generated in relation to the role of nurse in diabetes care: 1) Nurses’ performed role: the role performed by nurses in diabetes care was regarded as complex and one that required appropriate preparation and support; 2) Implications of the nurses’ performance: nurses engaged in multiple activities that aimed at providing holistic and patient centred care, and 3) Challenges facing nurses in diabetes care: nurses reported facing significant challenges that interfered with their care role and which could negatively affect patient outcomes. Conclusions: Nurses play a critical role in the care of diabetes patients and require significant support to undertake their role.

Diabetes , Diabetes Nurse , UK , Care , Role

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1. Introduction

Diabetes is increasingly becoming a global public health concern with its prevalence steadily on the rise [1]. A study by Saeedi and colleagues Saeedi et al. [2] reported a prevalence of diabetes at 9.3% in 2019, which is projected to rise to 10.2% by 2030 and 10.9% by 2045. United Kingdom (UK) is reported as one of the Western European countries with the highest number of people with Diabetes with a reported increase in newly diagnosed cases [3]. Type 2 Diabetes (T2D), defined as chronic hyperglycaemia caused by decreased insulin production or impaired insulin function [4] comprises 90 percent of people who are affected by diabetes globally [1]. Because it may show signs of disease after a long time of acquisition, managing T2D is an on-going challenge in the healthcare sector, as its complications impacts health outcomes and healthcare costs [1].

Managing diabetes requires new models of care and practice. Increasingly, healthcare systems are adopting nurse-led models that are believed to be patient centred, as opposed to the more traditional physician-led model that focuses on medical treatment and cure. Empowering nurses with more independent roles in diabetes care has been suggested as a possible initiative to improve the outcomes of patients with diabetes [5]. When comparing a nurse-led model with traditional care, Li and colleagues [6] demonstrated that the nurses led model was more effective in improving glycemic control and reducing diabetes distress.

In practice, the management of diabetes in the UK involves a multidisciplinary approach, with an integration of different care providers such as physicians, nurses [7] and other professionals such as dieticians and podiatrists [8] [9]. A multidisciplinary approach is believed to improve the quality of diabetes care compared with the individual patient-provider care model [1] [7]. We sought to explore how nurses in one NHS trust working in diabetes care undertook their role and how their role was influenced by other colleagues, being part of a multidisciplinary team. The article is part of a larger PhD study undertaken by the lead author at a UK university. The lead author has expertise in chronic disease and qualitative research. The article will provide evidence that could contribute to the understanding of the role provided by nurses to diabetes patients and how nurses can be supported to work in a team to contribute to improvement in the care provided to diabetes patients.

2.1. Study Design

The current study employed a descriptive qualitative approach, to explore the nursing care offered in two diabetes clinics in one NHS trust in the UK.

2.2. Sample/Participants

Sampling aimed at selecting samples that would exhibit relevant descriptions and behavioural actions applicable to the study’s aims and objectives. A combination of both convenience and purposive sampling was used to select participants who directly worked with diabetes patients and were available to participate in the in-depth interviews. We aimed to include a total of 15 participants, however, consistent with qualitative research, the principle of data saturation was employed in determining the final sample size. Participants were labelled with code numbers followed by the site code (NUH).

2.3. Study Settings

Two sites from one NHS hospital in the UK were identified as research sites for the study. Both sites were providing comprehensive care for patients with diabetes in hospital based outpatient clinics. In each site, one diabetes clinic was included.

2.4. Data Collection

Following ethical approvals, the clinics’ managers arranged for the researcher to meet with staff, where she introduced herself and made known her intentions. Following provision of relevant information, potential participants were requested to consent for study participation which included face-to-face interviews and observations. Consent to observe a care session was also sought from patients and other healthcare providers who would be involved during such a session.

Semi-structured interviews were conducted with diabetes care nurses using a semi-structured interview guide (Appendix 1). Participants were interviewed in a private room at each clinic. Following consent of participants, interviews were recorded using a digital voice recorder (Philips 1100 recorders). Hand-written notes were taken and reflective accounts of interviews were documented soon after each interview. Employing observations in this study enabled the researcher to observe the nature of interactions between nurses and patients during consultations, allowing the researcher to explore the actual roles that nurses were undertaking on a day-today basis within the clinics. A convenient place to sit was selected that allowed the researcher to observe and take notes basing on facial expressions and body language of both nurses and patients. We drew on questions generated from the observations to enrich the interview schedules and improve the trustworthiness of the data. During observations of nursing activities, field notes were written, but the activities were not audio or tape-recorded. Participants’ names were not used in the field notes. The study observations covered five hours in the morning and three hours in afternoon. Data was collected between May and September, 2017.

2.5. Ethical Considerations

The study was part of a PhD program and as such the protocol was approved by the PhD students’ University and the National Institute of Health. In addition, formal permission to undertake the study in the clinics concerned was sought and granted.

2.6. Confidentiality and Protection of Participants

All information given by the participants was held in the strictest confidence, and only the researcher with the supervisory team had access to it. All digital recordings and computer-based copies of the transcripts were stored in a password-protected computer on the university database server and treated according to the university guidelines and data protection laws. All participants’ hard copy forms will be kept in a lock-protected cupboard at the university for seven years from the end of the study.

2.7. Data Analysis

Each interview was transcribed verbatim immediately after the interview ended, to enable the researcher capture fresh memories of the interview proceedings including emotions and facial expressions. All interviews were conducted in the English language. Transcribing each interview took between five to ten hours. Data analysis was influenced by both the eight steps and six steps suggested by Stake [10] and Miles and Huberman [11] respectively, while the overall scene was guided by Braun and Clarke [12]. For each data set, we followed general strategies which include: 1) preparing and organising the data, 2) reducing the data into themes through a coding process and condensing codes, and 3) presenting the data into figures, tables or a discussion by each source of data collection [13] (p. 180).

The analysis process started with a close reading of the raw text to enable familiarisation and understanding of the content. Notes of thoughts and memos were recorded throughout the analysis process. The initial stage of analysis used an inductive thematic analysis approach, where codes were generated from the data. Initial coding of each transcript was made separately and all codes were labelled and provided with descriptions. “Freenode” and “tree node” tasks were employed to arrange data in the computer and to sort and rank codes, which enabled the development of a hierarchy of codes. The coding process stopped when no dissimilar codes emerged, when refinements were not adding any new codes, and when the study’s objectives had been met. A qualitative computer analysis programme (QSR NVivo10) was used to sort codes and categorise data for detailed analysis.

2.8. Maintaining Rigour

To maintain rigour, various individuals were involved in the coding process including the principle researcher and the PhD supervisors. The first author’s previous work and research experience in chronic diseases and medical-surgical nursing could have influenced her interpretation of the data and she ensured that this background was considered throughout the research process. Additionally, the current study used multiple data sources that included in-depth individual interviews and observations (triangulation) that allowed for cross-data validity checks, hence strengthening the credibility of the research.

3. Findings

This article reports findings about the role of nurses in providing diabetes care in one selected NHS trust in the UK. The study included 10 female participants, who were between the age of 30 to 66 years, with a nursing experience ranging from four to 38 years. The nurses’ qualifications ranged from Nursing Diploma to Master’s degree and their years of experience in diabetes clinical care ranged from two to 21 years, with the majority having more than 10 years’ experience in diabetes care. All participants approached to take part in the study participated.

The data from individual interviews and participant observations generated three key themes, pertaining to their role in diabetes care. These included: Nurses’ performed role, implications of nurses’ performance, and challenges facing nurses in diabetes care. These findings are summarised below with representative quotes to support the interpretations made by the researchers.

3.1. The Performed Role of a Nurse in Diabetes Care

The performed role of nurses in diabetes care was found to be diverse and challenging. Nurses reported participating in various activities such as health education and promotion, providing patient support, prescribing, and other interprofessional roles. Although most of these roles pertained to those of a general nurse, providing them in a diabetes care setting came with special responsibilities. The performed role of nurses in diabetes care was further presented under several sub-themes.

3.1.1. Health Education and Health Promotion

Nurses reported providing health promotion messages that they felt were helpful for the patients. They taught patients how to interpret laboratory results, and spent much time in consultation with patients, gathering baseline information about them, and providing relevant information about diabetes care. Patient empowerment and encouragement for self-management was included in diabetes care and management.

“ We ask the patients what they want to get out of the consultation and then I personally have a duty of care to make sure that they have the correct information . So , I will deliver education in a way that I feel is appropriate to the patient .” ( Nurse 2-NUH )

“ We provide professional education . We do provide that on either an individual basis or group educational sessions , as we noticed that some patients are better in understanding and appropriately controlling their glycaemic level in group sessions .” ( Nurse 8-NUH )

The main barriers to providing health education included patient’s demand for focused and detailed information about their conditions, their progression, and treatment. Nurses also reported language barrier, which they overcame by using drawings (with non-English speakers). Such processes sometimes required additional resources.

The patient cannot speak or understand English very well . The nurse was trying to understand what he was saying and to make sure he understands what she is saying . Alternatively , she was drawing for him and writing to make sure he understood what she said . The consultation took more than 30 minutes , but the patient looked comfortable and appeared to indicate understanding of what the DN said . ( Observation 6-NUH )

3.1.2. Providing Holistic Care

Nurses provided various kinds of support to their patients to respond to their individual needs. They reported approaching their patients holistically, by attending to other needs that are not directly related to diabetes. One nurse reported how her unit took care of patients’ diverse needs including cultural and financial issues, foot care, physical and psychological care, as well as social support:

“ Our patients come with different needs and we make sure we cover these needs . Some of them [ patients ] have needs that are related to their cultural backgrounds , others have financial problems and in that case , we try to provide some solutions , though this needs other interventions that are not under our scope of practice …” ( Nurse 2-NUH )

Providing care that focused on the individual patients’ needs was reported to increase the quality of care provided to T2D patients and was perceived to result in better patient outcomes such as successful diabetes control and patient satisfaction with care.

The effort I ’ m providing here and patients appreciate each time they come to the clinic .” (Nurse 7-NUH)

3.1.3. Prescribing

While nurses undertook an important role in providing patients with medication advice. Nurses also reported being able to prescribe after successfully completing a prescribing course. The prescription role generally included prescribing/adjusting insulin dosages.

“ I provide consultations to patients , prescribe or adjust his insulin , and check his routine readings and his diary to make sure he is following the treatment plan .” (Nurse 3-NUH)

“ I ’ m a nurse prescriber . I can prescribe insulin and I can change the insulin , and mix insulin …” (Nurse 8-NUH)

Many nurses felt it is important to be authorised to prescribe treatments beyond diabetes, as diabetes can contribute to other conditions. For instance, a nurse reported that her patient came with high cholesterol levels and needed medication such as statins, and despite her feeling competent to prescribe the medication, she was not authorised to do so in her current setting.

“ My patient this morning is actually having high cholesterol levels and I know the statin works and he is tolerable but I ’ m not able to prescribe it ...” (Nurse 5-NUH)

“ Actually , I cannot prescribe other than for diabetes as this is a medic ’ s role .” ( Nurse 6-NUH )

While taking on the prescriber role may add workload to the nurse working in diabetes care, many viewed it as an added resource to quality care provision and in some cases time saving. For example, waiting for doctors to prescribe would delay a patient’s treatment and could lead to clinic delays in general.

“ Some patients urgently need some treatment and we should refer them … That can delay the start of treatment ..., prescribing makes the flow of the clinic quicker ..., it saves a patient ’ s time and their experience would become better as they can start taking that medication right away .” ( Nurse 10-NUH )

3.1.4. Interprofessional Roles

Nurses working in diabetes care were undertaking roles in collaboration with other nurses and other healthcare professionals. The roles undertaken on patients other than diabetes patients made the nurse working in diabetes care added more workload to them and were sometimes viewed as disruptive to the diabetes care role.

“ A nurse or a doctor at the ward calls me up to teach a non-diabetic patient […] Those things might look small but they are interrupting our work .” (Nurse 1-NUH).

On some occasions, it was reported that the nurses’ role interpretations/interruptions by other colleagues raised the issue of power relations, especially within the nurse/doctor relationship. Some nurses, who took on additional/multiple roles outside their prescribed scope of work felt it being unfair to them as they seemed to be doing someone else’s job.

“ I will not have a registrar so I will be my own registrar … It is about adding more pressure and more responsibilities that are more than what you could handle . On the wards , as well I do more work . We [ nurses ] have to make the right decision about patient discharge and this can sometimes be very challenging .” ( Nurse 9-NUH )

Most times, undertaking additional roles was found challenging and sometimes compromising the quality of care provided to diabetes patients.

“ Doing work more than what you should do is a conflict . Sometimes we do not have a doctor available and we are seeing patients on the wards and it is a tricky situation .” ( Nurse 8-NUH ).

3.2. Implications of the Nurses’ Role in Diabetes Care

Nurses discussed how they felt about the contribution of their role to the overall care of diabetes patients. They felt their role contributed to providing timely interventions that are patient focused and that resulted into better quality of life for the patients. Their role was perceived as one that provided patient-centred care, enhanced their autonomy in practice, and expanded their scope of practice.

3.2.1. Providing Patient-Centred Care

The nurses regarded the care provided to diabetic patients as patient-centred, as it aimed at addressing the holistic care needs of their patients. Nurses admitted that on some occasions they were not able to personally resolve patients’ concerns; however, they provided pathways for them to follow so as to address their worries and concerns.

“… the care we provide is holistic , we cover patients ’ needs holistically .” ( Nurse 7-NUH )

“ I certainly have patients who would say to me I don ’ t need to see a doctor today because I ’ m happy with what we ’ ve done ”. ( Nurse 2-NUH )

Nurses reported that a patient-centred approach facilitated a two-way communication, where the nurse understands and covers the patient’s needs, which can sometimes be complex. This dedicated communication could lead to a trusting relationship between the nurse and the patient and resulted into treatment adherence among patients. A patient centred approach was viewed as holistic, empowering, and one likely to positively impact on patients’ outcomes.

“… we don ’ t consider our patients as only patients; we know a lot about their lives . We [ nurses ] support people ... This is indicated by patients following up with their treatment plan .” ( Nurse 8-NUH )

3.2.2. Enhancing Professional Autonomy

Nurses reported that the diabetes care role shaped their self-confidence in managing their patients. Expression of self-confidence can be considered as an enabler for the nurses’ abilities to make decisions, solve problems, and plan patient care independently. Nurses working in diabetes care had their own patients, where each of them was dedicated to take care of particular clients, which ensured patients’ continuity of care. The nurses had their own patient caseloads and developed ways of working to deal with most patients’ issues, relating both to diabetes care and non-diabetes issues. Nurses who reported capability to adjust patients’ insulin intake when required felt that their professional autonomy was enhanced.

3.2.3. Professional Development-Extending the Role

The extended role was explained by diabetes nurses as their ability to prescribe both diabetes and non-diabetes medication, in order to facilitate holistic patient care. Nurses mentioned drawbacks to this function such as regarding prescribing as part of a doctor’s role while some viewed it as an unsafe procedure if specific capacity building is not provided.

“ So , you would not do anything you are not qualified to do . But there is always an expectation that you can have extra patients put into your schedule .” ( Nurse 2-NUH )

Nurses considered the provision of diabetes care an on-going practice and meetings with their peers and doctors at the clinic contributed to keeping their knowledge about new treatments in diabetes up-to-date. Developing the role of a diabetes nurse by extending their role and keeping up-to-date with new treatments and practice was thought to contribute to enhancing patient care.

3.3. Challenges Faced by Diabetes Nurses While Undertaking Their Care Role

Nurses reported various external forces that interfered with the nurses’ work while providing diabetes care and thus affected its quality. These issues included staff shortages and heavy workload, remuneration concerns and negative relationships with other staff members as elaborated below.

3.3.1. Shortage of Staff

Nurses expressed that the limitations in staff numbers, including both doctors and nurses required them to work more than their normal workload. This affected the quality of their work and also impacted their own health. The nurses identified a number of issues that could arise as a result of long hours of work and exhaustion.

“ We are expected to do more and more and see more and more people as there is a lack of staff . You know there are so many things to be done by one person and that makes us feel tired and exhausted .” ( Nurse 6-NUH )

The wellbeing of nurses is a fundamental factor in patient care. If the nurse is exhausted and frustrated, she/he may lose her sense of caring as well as being prone to making mistakes, putting patients at risk.

3.3.2. Increased Workload

Apart from their few numbers, nurses considered that they were expected to undertake more roles than was within their workload. It was evident that the nurses did not have sufficient time to fully manage all the aspects of patient care, a problem which impacted on their ability to provide quality patient care.

“… there is no limit to the expectation that we would do . There is your seniors ’ expectation that you discharge duties within the scope of your profession . So , you would not do anything you are not qualified to do . But there is always an expectation that you can fit extra patients into your schedule .” (Nurse 2-NUH)

As a result of the nurses’ shortages and the continuing pressure of work, they considered that they were expected to undertake more than they could reasonably do on a daily basis, which was frustrating to them.

3.3.3. Lack of Recognition and Support

Organisational dynamics was reported to sometimes hinder the nurses’ performance. Nurses reported that conflicting expectations from senior management increased their workload and time pressure.

“ The only time I get upset is when I ’ ve got a full workload and you get the nurse in charge saying to me , you have to go and see this patient . I can ’ t go and see this patient as I have another patient . However , she [ the in-charge nurse ] said you ’ ve got to go .” ( Nurse 2-NUH )

Nurses also reported interruptions during their work caused by fellow staff such as doctors and other nurses which interfered with their completion of tasks. Occasionally, nurses reported being contacted to accomplish tasks that were not their responsibility.

“ We have not got a doctor here at all and the next couple of days I ’ m going to be on my own here …” ( Nurse 9-NUH )

3.3.4. Financial Conflict

A few nurses expressed concerns about not receiving an appropriate level of income to match their role. Some complained that their income was just the same as for nurses working in general departments which are non-specialised, while others felt they did more work compared with the general nurses who are sometimes paid more than them. This was a demotivating factor for the nurses.

“ We are not having enough income compared to what we are doing and what we receive is similar to other nurses in other departments . We are covering quiet huge parts in diabetes care … We just cannot ignore the patients when they come seeking help .” ( Nurse 10-NUH )

4. Discussion

The current study reported the perspectives of nurses from a selected NHS trust, about their role in providing care to diabetes patients. Nurses reported engaging in various activities that could exceed their job description or scope of work. For the provision of quality care, it is essential for the role of nurses to be guided and defined [14].

Nurses in the current study reported adopting an individualised approach to care, in which each patient’s needs are handled on a personal basis. Although this approach can be demanding, it has been found to result into better patient outcomes [6], and should be promoted in diabetes care practice. To provide individualised care, nurses engaged into multiple activities aimed at meeting the various care needs of their patients, of which some form the general nurses’ role in the UK [15] and some were beyond diabetes care. A holistic approach to care is considered patient-centred and has been associated with improved patient health outcomes. In addition, providing holistic care means that the nurses get to spend more time with their patients which has been reported to result into patient satisfaction [16]. This approach could also be useful in minimising human resources and contribute to saving costs. These data support the need for adopting a holistic approach to patient care, while further research will be essential to highlight how this approach is implemented in practice and its actual impact on diabetes patient health outcomes.

Providing holistic care may also mean that nurses perform more roles including those outside diabetes care. Performing additional roles was perceived in the current study as a move towards professional autonomy, where nurses wished to have the authority to attend to their patients holistically, including prescribing medications. Consistent with literature that indicates that nurses in the UK have moved towards performing advanced roles [17], nurses in the current study reported engaging in advanced roles such as prescribing, which they highly supported and recommended. It has been documented that nurse prescribing is a successful practice that supports a range of services such as holistic management of chronic diseases, including diabetes [18]. Research undertaken in diabetes care has also supported this initiative indicating that it improves the quality of care provided by enhancing timely access to medications [19] [20]. However, to advance their role, it is essential that nurses are equipped with adequate knowledge about the disease condition and its treatment as nurses’ poor consultation skills have been attributed to poor patient outcomes [21]. This suggests further training for nurses working with diabetes patients.

To improve the care of patients, it is suggested that nurses work in a team with other healthcare providers, to ensure the integration and coordination of patient care [1] [7]. In the current study, it was suggested that nurses could not appropriately provide quality care to the patients alone and thus required other members of the health care team. A team-based approach was shown to further strengthen the provision of patient-centred care. Although this approach could be helpful, it was reported in the current study to result into work overload, when nurses undertook roles supposed to be done by other care providers. This challenge could also be associated with shortage of manpower, which is an outstanding challenge in the provision of diabetes care [22].

Nurses in the current study further reported being demotivated by the lack of adequate resources such as private space which affected the quality of care provided, while some felt demotivated due to underpayment. Whilst not measured in the current study, nurse retention is influenced by factors that affect motivation such as support from colleagues and superiors, and empowerment [23]. Not meeting the needs of nurses has also been found to contribute to poor work outcomes [24], while addressing them is associated with quality care and healthcare providers’ satisfaction [25]. A supportive environment is advocated for in healthcare facilities to enhance the role of nurses in T2D care.

Limitations

Being a single institution study, we recognize that our findings may not be applicable beyond the context of the study, hence the need to undertake similar studies in other diabetes care settings in the UK and internationally, to generate more representative conclusions that could inform strategies to improve the care of diabetes patients. Furthermore, our study employed a purely qualitative approach. While we recognize that qualitative studies can be in themselves pragmatic, they stand a limitation of self-reporting bias. Hence, the application of recommendations in this study should be made in consideration of other related studies.

5. Conclusion

The current study aimed to establish the role of nurses in diabetes care in a selected NHS trust in the UK. The findings indicate that the role performed by nurses in diabetes care may be complex and requires appropriate preparation and support. Nurses in the current study engaged (or would want to engage) in multiple activities that aimed at providing holistic and patient centred care. In performing their care role, nurses encountered significant challenges that could interfere with their care role and was feared to affect patient outcomes. Nurses also reported feeling inadequately prepared for the advanced roles in diabetes care, and therefore required additional capacity building to facilitate their role. Support of management and other healthcare providers may be critical in enabling nurses working with diabetes patients to undertake their role. This study should be extended to more NHS trusts to provide more generalizable evidence about the role of nurses in diabetes care in the UK.

Appendix 1: Semi-Structured Interview Guide for the Study

1) What do you do as a nurse in this clinic?

2) Could you tell me about your role in providing health promotion?

3) What is your involvement in medication?

4) What guidelines and protocols guide your work?

5) How independent do you work?

Conflicts of Interest

The authors declare no conflicts of interest regarding the publication of this paper.

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Self-Care Management of Patients with diabetes: nurses’ perspectives

Noor azimah awang ahmad, mohammad azmirul azmi sallehuddin, yan choo teo, hanif abdul rahman.

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Corresponding author.

Received 2020 May 13; Accepted 2020 Nov 5; Collection date 2020 Dec.

To explore nurses’ experiences of providing education on self- care management to patients with diabetes.

A qualitative phenomenological study using semi-structured interview on all nine certified diabetic nurse educators in the main hospital and health centres in Brunei. Prolonged engagement with participants and data, and member checking were employed to ensure thematic analysis was trustworthy.

Three main themes emerged; 1) Factors of effective teaching strategies that emphasizes on assessing patients’ knowledge and education level to provide individualised instructional plan, which need to follow latest ministerial guidelines and effective pedagogy; 2) Barriers to provide effective education including psychological, financial, and lack of familial support, 3) Overcoming barriers through parallel health education and counselling, referring to medical social worker and non-governmental organizations, and inclusion of family members and carers in plan of care.

Diabetic nurse educator plays a crucial role to ensure patient with diabetes achieved competency and compliance with long term self-care management. Nurses’ need to ensure psychological preparedness and patient literacy assessment when designing individualised health education session. While identifying and addressing key barriers for each patient to ensure effectiveness of management plan and improve quality of life. More research are still needed to explore experiences and innovation solutions from nurses in different parts of the world to better inform policymakers and improve organisational and national guidelines for management of patients with diabetes.

Keywords: Diabetes, Self- care management, Patient education, Phenomenological study

Introduction

Education on self- care management has become gold standard for patients with diabetes [ 1 ]. Patients with diabetes require day-to-day knowledge of nutrition, exercise, monitoring, medication to accomplish daily self- care goals [ 2 ]. Evidence have shown that those who were well-equipped with self-care knowledge have become more confident to take control of their condition. They reconcile with healthy lifestyle and blood glucose level monitoring, which consequently improve quality of life [ 3 ]. Lack of knowledge hinders self- care performance and poor blood glucose control, which leads to development of diabetes complications such as blindness, renal failure, and amputation [ 2 ].

Diabetes nurse educator (DNE) plays an important role to equip patients with knowledge and confidence to achieve self-care goals for metabolic control declared in the National Standards for Diabetes Self- Management Education and Support [ 4 ]. The seven principles of effective self-care management include healthy diet, exercise, adherence to medication, glucose level monitoring, problem solving, reducing risks and healthy coping [ 5 ]. However, effectiveness of health education activities are affected by an individual’s acceptance of their disease. In addition, adherence to self- care management could be affected by sociodemographic factors such as patient’s education level [ 6 ]. Furthermore, delivery strategies is also an essential consideration. Teach back technique and use of pictures are recommended strategies for patients with low literacy [ 7 ]. Whereas, one to one consultation was reported to be more effective than group- based consultation [ 8 ].

Although DNEs have been conducting health education session for patients with diabetes, their perception and experiences have not been properly explored [ 9 ]. This is especially important because studies have found perception on self-care behaviours of nurses and patients were significantly different [ 9 – 11 ]. This differences and discrepancies need to be understood and enable knowledge to be imparted to patients effectively. Therefore, the present study aimed to explore diabetic nurse educators’ experiences of providing education on self- care management to patient with diabetes.

Study aim and design

A qualitative phenomenological study to explore nurses’ experience of providing health education on self- care management to patient with diabetes.

Settings and sample

All certified diabetic nurse educators (DNEs) from both the largest referral hospital and two main health centres in the Brunei-Muara district were recruited for this study. The eligibility criteria were: 1) certified DNEs with the nursing board of Brunei, 2) experienced in giving health education on self-care management to patient with diabetes. There were only eleven DNEs in the source population. Two of them assisted in pre-testing the study protocol and questions to ensure comprehensibility and smooth running of the session. Pre-testing participants were excluded from the main interview to minimise bias and avoid contamination of data, considering those who were involved in designing the protocol, would likely influence responses from new participants [ 12 , 13 ]. The remaining nurses agreed to participate voluntarily (100% response rate).

Data collection procedures

Following recruitment and pre-testing, data was collected through semi-structured focus group interview. The questions were asked based on the research questions:

How do nurses educate patients with diabetes on self-care management?

What strategies are being used to educate patients with diabetes on self- care management?

What are the challenges for nurses to educate patients with diabetes on self- care management?

The session was conducted in a private, conducive venue. The interview was audio-recorded. A total of two focus groups were conducted, considering the small number of eligible participants, however, through member-checking strategy, the researcher return to participants to affirm their responses and emerging, until most of the results were agreed upon.

Data analysis

Audio records were transcribed verbatim, producing 178 pages of text, and analyzed through thematic analysis. Two strategies were employed to ensure credibility and rigour, i.e., prolonged engagement and persistent observation, and member checking (also known as participant validation). For the former, the scripts were read several times to get a sense of the whole context. Common and repetitive concepts were categories and formed sub-themes. Previous literatures guide construction of suitable themes. Relevant quotations from the original transcript was extracted for reporting. For the latter, participants and research team members examine and comment on the excerpts of transcripts and emerging themes until at least 80% of the results were agreed upon.

Ethical consideration

The study protocol was approved by the joint research and ethics committee of Ministry of Health and Institute of Health Sciences, Universiti Brunei Darussalam. Participants have read and understood the study details before agreeing to sign the written consent, including agreement for the session to be audio-taped. No participant-identifying information was collected. Each participants were assigned individual codes.

Nine diabetic nurse educators participated in this study. Participants demographic characteristics and codes used to denote them are presented in Table 1 .

Demographic characteristics of participants

Three emerging themes were identified; 1) Factors of effective teaching strategies; 2) Barriers to provide effective education, 3) Overcoming barriers.

THEME 1: Factors of effective teaching strategies

The respondents reported that nurses need to assess patient’s level of education, knowledge and understanding to ensure effective education and patients received the information well. They used teach-back (talk back) method to assess the patient’s level of understanding and on what they have learned. For elderly patients the nurses would usually use simplest term to the session.

“… First thing we do is we asked about their knowledge regarding diabetes, do they know about diabetes, what is diabetes, what’s the complication…”(PT05DC, P3) . “…..This is what we call as a talk back session. We ask them back what they have learned asked them back what was the things that we have educated them previously on or the time before that we did this talked back session….” (PT02DC, P4) “……I adjust adjusting according to their level of education if educating patient who is teachers are more easy if elderly patients so we have to estimate what they understand like make a simplest way..” (PT06HC, P2)

The nurses normally would also justify explanations such as reason they need comply with insulin regimen, using simple terms.

“……make them understand what happened to the body why they need insulin….” (PT08DC, P1) “…..if they are lacking of understanding that’s why we are trying to use the simple way……..” (PT06HC, P3)

In delivering the education of self- care management the DNEs ensured essential content of education was included, which covered three important aspects of self- care management which were diet, physical exercises, and medications.

“….we explain that there are 3 parts in managing the diabetes so one is dietary, control the diet, second exercise the hormone metabolism will help you, thirdly is medication….” (PT03HC, P4)

Most nurses included content from Clinical Practice Guideline Diabetes Mellitus that was published by the Ministry of Health in 2007.

“All of us here are using clinical practice guideline diabetes mellitus under MOH that was published in 2007…. we use guideline standard so all are standardised everything that we taught are the same things…..” (PT04DC, P7)

However, some of the respondents also used guideline from external sources.

“….Guideline usually we got it from our courses, diabetes slides mostly from there and we also got it from our workshop lecture so we just summarise the topics from there and we make new notes….” (PT03HC, P8).

They also provided demonstration and practical session on insulin injection technique to ensure patients were able to conduct the injection technique safely at home and to ensure the patient compliance well to the insulin injection.

“Besides demonstration we asked them to hands on based on what we have shown the technique if they can perform it correctly then they are safe to be injected at home…” (PT04DC, P12)

In addition, they utilised pictures, drawing and provided leaflet in the session. Pictures were used to show complications of the disease. Leaflet was distributed on insulin technique. Showing pictures throughout the session helped patient visualise rather than explanation alone.

“Usually we use some drawing and we also give them leaflet by showing the complications of diabetes through this pictures and also leaflet of insulin technique guidance…” (PT02DC, P2)

Majority of the respondents reported importance of updating their knowledge through reading, attend lectures and taking the exam to ensure they are capable of delivering effective education to the patients.

“First we are exposed to many materials that required us to read a lot, attend lectures and we got exam and also practical so to see whether we are capable doing or not and to see what we taught patient is effective or not and we keep taking examination and attend many lectures” (PT04DC, P7) “…..I update my knowledge through reading the latest one, sometimes what I’ve learned before was not sufficient for example about exercises…..”. (PT01HC, P7)

THEME 2: Barriers to provide effective education

Psychological barrier.

Majority of the respondents reported that lack of acceptance and denial were the most common psychological barriers that hindered nurses in delivering effective education to the participants.

“…so my experience in educating patients with diabetes usually newly diagnosed diabetes they cannot accept being diagnosed as a diabetes….” (PT03HC, P1) “....challenges that we have faced is the patient itself because most of the patients sometimes when they are diagnosed with diabetes they are in denial stage….” (PT05DC, P1)

Financial barrier

They also stated that patients were having difficulty to purchase healthy food, which was more expensive than fast food. Advising them to comply to diet modification became quite difficult.

“….. financial problem as we know healthy food is quite costly and expensive so if we advised them to take Jacob crackers, this kind of fruits these foods are quite costly to them so it difficult…..” (PT05DC, P7)

Lack of familial support

Most patients had poor support from family members, particularly on diet compliance, because they were used to unhealthy lifestyle.

“….family who have diabetic in their family members are having difficulties to support the one who has diabetes because they are get used to their unhealthy lifestyle…… (PT05DC, P1) “…our diabetic patient is really difficult as in Brunei we get used with all these culture that eat too much…..” (PTO5DC, P7)

THEME 3: Overcoming barriers

Psychological support.

Majority of nurses would provide counselling and motivation activities to encourage them to make changes within themselves in performing the self- care management such as monitoring the blood sugar intake.

“….. I give motivation to them that you don’t be sad even though you have been diagnosed diabetes yes you are labeled as diabetic but you can prevent through blood sugar target..” (PT07HC, P13) “……..we advise them to build motivation what makes you motivate…” (PT07HC, P15)

Family and financial support

The participants worked closely with medical social workers for patients with financial and transport problem. The nurses also garnered support from family as part of their diabetes management.

“.. we consult with the MSW (Medical Social Worker) to help those who has problem with financial and transport at least to settle these matters for them………” (PT05DC, P7). “The thing is regarding diabetes, family member need to be involve that is important….” (PT04DC, P13)

This study explored nurses’ experiences of providing health education on self- care management to patients with diabetes. Several interesting points were uncovered. First of all, nurses’ perceived that lack of psychological readiness was the main inhibiting factor for patients’ acceptance of their condition and thus compliance with self-care management. Similar studies have also revealed that patients who were in denial stage had led to poor lifestyle changes, particularly dietary modification [ 14 – 16 ]. MacDonald et al. [ 17 ] therefore recommended that health education and counselling should be conducted in parallel and consistently throughout management of patient with diabetes. Extensive experience is required to be flexible and respond accordingly to patients’ psychological issue and mood. Consequently, national guideline for diabetic nurse educators need to be revised, taking also into account that nurses in the present study perceived that ministerial guidelines for content of health education was outdated. Hence, it is important for certified DNEs to be both updated and stay current with content of health education as well as competent in recognising patient’s emotional and psychosocial needs. The provision of psychological support by active listening and being empathetic at the beginning and during subsequent sessions have shown to convince them to change their lifestyle [ 16 ]. Furthermore, the involvement of family members or carers during the health education session have helped motivate the patient and deal with self-care and psychological preparedness [ 18 ].

Secondly, nurses’ perceived that financial problem was also one of the main barrier to self-care compliance. Some patients could not afford to buy healthy foods, which are normally more expensive. Several studies have shown that financial constraints have led to poor adherence to treatment regimen and self-care management in the UK and US, respectively [ 18 , 19 ]. In Brunei, patients who have financial and transport difficulties would be referred to the department of medical and social services in the Ministry of Health. In Canada, non-profit organisations, social workers and industry conducting compassionate relief programs would help address their financial burden and help them to get access to their services [ 15 ].

The present study also uncovered that nurses used different teaching techniques and strategies for the patients. Education session based on patients’ preferences and individualised teaching plan while maintaining standard content, were found to be more effective [ 20 ]. Several teaching strategies and teaching aids were also more helpful in diabetes education such as hands-on demonstration and practical, and provide pictures, leaflets and drawings. Nurses could then help patients visualise, practice and assess competency, particularly on insulin injection, and as a result, increase understanding and ability for self-care and reduce diabetes complications in the long run [ 21 ].

Finally and equally important, is the assessment of patients’ literacy level. The present study revealed that nurses emphasized importance of determining patients’ knowledge and education level when designing the session. This is essential when considering health education on diabetes self-care are laden with complex and multidimensional instructional plan to address deficits in any of the cognitive, affective and psychomotor domain [ 14 ]. To further ensure effectiveness of behaviour change, it is also essential to identify ways to modify health beliefs, enhance self-efficacy, and change cultural norms regarding behavioral change, while having support from family members and carers to initiate and sustain beneficial behaviours [ 22 , 23 ].

Study limitations

This qualitative study provide rich description of nurses’ experience on self-care education. Although all diabetic nurse educators were recruited, the results is not generalizable to other settings due to small sample size, different societal norms and local cultural practices. The experiences may reflect the experiences of younger nurses. Future studies exploring experiences of nurses from different countries and societies could extract valuable insights to understand better on more effective ways to self-care education to patients with diabetes.

Implications to practice

The present findings could strengthen existing educational programme for diabetes self-care management. It also engages DNEs to actively think about improving current practices through constant knowledge update, providing individualised session plan, as well as, employing innovative strategies to promote active participation from patients and family members.

Conclusion and recommendation

To conclude, diabetic nurse educator plays a crucial role to ensure patient with diabetes achieved competency and compliance with long term self-care management. Nurses’ need to ensure psychological preparedness and patient literacy assessment when designing individualised health education session. While identifying and addressing key barriers for each patient to ensure effectiveness of management plan and improve quality of life. More research are still needed to explore experiences and innovation solutions from nurses in different parts of the world to better inform policymakers and improve organisational and national guidelines for management of patients with diabetes.

Acknowledgments

We thank the study participants who voluntarily participated in this study and we also extend our gratitude to the Nurse Manager of Diabetes Center Clinic and Nursing Officer of each Health Centre in Brunei- Muara for their immense cooperation.

Abbreviations

Diabetic Nurse Educator

Compliance with ethical standards

Conflict of interest, ethical approval.

The Joint Research Ethics Committee of Pengiran Anak Puteri Rashidah Sa’adatul Bolkiah, Institute of Health Sciences Research Ethics Committee (IHSREC), Universiti Brunei Darussalam and the Medical and Health Research Ethics Committee (MHREC) of the Brunei Ministry of Health approved this study [(UBD/IHS/B3/8).

Publisher’s note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

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• Published: 24 May 2022

The experiences of patients with diabetes and strategies for their management during the first COVID-19 lockdown: a qualitative study

• Mireia Vilafranca Cartagena   ORCID: orcid.org/0000-0003-2953-3196 1 , 2 ,
• Glòria Tort-Nasarre   ORCID: orcid.org/0000-0001-5270-821X 3 , 4 , 5 ,
• Maria Romeu-Labayen   ORCID: orcid.org/0000-0001-9482-9474 5 , 6 &
• Josep Vidal-Alaball   ORCID: orcid.org/0000-0002-3527-4242 7 , 8  

BMC Nursing volume  21 , Article number:  124 ( 2022 ) Cite this article

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During the pandemic, primary care systems prioritised attention to COVID-19 patients; chronically ill patients, such as people with Type 2 Diabetes were obliged to take more responsibility for their own care. We aimed to analyse the experiences of patients with Type 2 Diabetes Mellitus during the stay-at-home order that was in place during the first wave of the COVID-19 pandemic and identify the strategies and resources used in managing their care.

We conducted a qualitative descriptive study. The participants were ten patients with type 2 Diabetes Mellitus who experienced strict lockdown during the first wave of the COVID-19 pandemic in Catalonia, Spain, selected using intentional sampling. We recorded semi-structured interviews with the participants and conducted thematic analysis.

We identified 14 subthemes, which we then grouped into three overarching themes: 1) anxiety, fear, and vulnerability (anxiety, fear, vulnerability, rethinking life, loneliness, sadness), 2) insufficient diabetes monitoring by the health system (health care received, glycaemic control, view of treatment by health providers) and proactive self-care (changes in daily routine, diet, physical activity, medication, personal protective equipment & social distancing).

Despite the exceptional nature of the situation and the stress, worry, and changes in their daily lives, many respondents reported that they had successfully modified their lifestyles. Self-care was effective during confinement and was based on a process of adaptation using the resources available, without face-to-face contact with primary care health staff.

Relevance to clinical practice

These results can help to guide the design and implementation of self-care-focused strategies and also to explore new ways of empowering patients without access to health care personnel.

Peer Review reports

Introduction

Novel coronavirus disease (COVID-19) is a highly transmissible, rapidly spreading disease which has had a dramatic impact all over the globe. Although the overall mortality rate due to COVID-19 is relatively low [ 1 ], diabetes has emerged as a prominent comorbidity, associated with a severe and acute picture of respiratory distress and increased mortality. Thus, patients with chronic diseases such as type 2 diabetes (T2D) appear to be particularly vulnerable to the effects of the virus, and T2D is a major risk factor for poor prognosis in COVID-19 infection [ 2 ].

With the outbreak of the pandemic, governments imposed policies to reduce the transmission of the virus, including quarantine, isolation, social distancing and stay-at-home orders. These exceptional measures had a direct effect on the health behaviours of patients with chronic pathologies such as T2D [ 3 ]. Many patients with diabetes have encountered barriers to care due to the policies introduced to combat COVID-19, although maintaining good blood glucose control in these patients has proved to be an effective measure in preventing the transmission of the virus [ 4 ].

Type 2 diabetes cannot be cured, but lifestyle changes such as following a healthy diet, regular physical activity, and maintaining normal body weight can slow the progression of the disease and reverse its effects [ 5 ]. However, previous studies have shown that long-term maintenance of weight loss and complete adherence to diet and physical exercise recommendations is rare, especially in the adult population. Understandably, during the pandemic, many patients with T2D have found it particularly difficult to adhere to these lifestyle recommendations due to the restrictions on their access to health services and the problems in obtaining fresh food and in exercising [ 6 ].

In Catalonia (Spain), a stay-at-home order took place during the first wave of COVID-19, March 14 to May 2, 2020, at which time the measures were progressively relaxed. Stay-at-home orders (or “lockdown”) are implemented when quarantine for exposed patients and isolation for infected patients are insufficient to contain the spread of a disease [ 7 ]. During the seven weeks of strict lockdown in Spain, people were only allowed to leave home to receive medical treatment, buy food or work as an essential worker. Leaving home for exercise was prohibited, and non-essential businesses were shuttered.

Early research shows mixed effects of COVID-19 lockdowns on patients with diabetes. [ 8 ]) show that while glucose levels for type 1 diabetes patients improved significantly, those for T2D worsened in the short term. Makki et al. [ 9 ] show that patients with T2D had better glycaemic control during lockdown, but they do not specify whether the lockdown conditions were as strict as those in Spain.

Nursing professionals have a vital role to play in educating patients about the need to adapt their lifestyles and in helping them to modify their behaviour with respect to their health [ 10 ]. During the pandemic, primary care nurses have been obliged to prioritise care for COVID-19 patients [ 11 ], and as a result they have had to postpone the care of the chronically ill [ 12 ]. In this scenario, innovative strategies are needed to monitor and motivate diabetic patients who have had to take on more responsibility for their care [ 13 ].

Qualitative research on the experience of patients with COVID-19 has provided valuable information [ 4 ]. However, few qualitative studies have addressed the experiences of patients with chronic pathologies during the pandemic, and even fewer in patients with T2D. People with chronic conditions experienced a confluence of the COVID-19 pandemic and chronic diseases in the context of difficulty in accessing healthcare, sedentary lifestyle and increased stress and anxiety [ 14 ]. Shi et al. describes the perceived barriers to diabetes self-management of people with T2D during the pandemic: inadequate knowledge and behavioural beliefs, shortage of resources, health problems, negative emotions and lack of support [ 15 ]. A structured analysis of the experiences of these patients would provide a valuable tool for organising the community and human resources needed in similar situations.

The aim of the present study is to analyse the experiences of patients with T2D that were under a stay-at-home order during the first wave of the COVID-19 pandemic and to identify the strategies and resources used in the management of T2D in this new situation.

We conducted a qualitative descriptive study, a design that is suited to arriving at a deeper understanding of practice in applied disciplines and is especially pertinent when the goal is to understand participants’ perspective and experience [ 16 ]. We began with a deductive approach to develop the interview guide and then conducted an inductive analysis of the resulting data. The study is part of an ongoing project about diabetes and physical activity, which was underway when the pandemic began (Authors, in progress).

Participants

Sampling was intentional [ 17 ]. The participants were the ten patients with T2D from four different primary health centres in central Catalonia (Spain) that were participating in our ongoing study about diabetes and physical activity. The inclusion criteria were adults aged 55 to 79 years diagnosed with T2D at least two years previously. We chose this age range because 55 is the age at which the prevalence of T2D begins to increase rapidly in the population, and a cut-off at 79 allowed us to ensure that participants were young enough to conduct physical activity [ 18 ]). Additional inclusion criteria were having no complications associated with T2D, having good metabolic control (hbA1c < 7), and showing good adherence to T2D treatment (defined as adherence to prescribed medication for T2D, physical activity > 150 min/week, and healthy diet). The exclusion criteria were gestational diabetes or type 1 diabetes, cognitive impairment, or admission to hospital during confinement. All ten participants from our initial study agreed to a follow-up interview about their experiences of COVID-19. Data saturation [ 19 ] was reached by the tenth interview, when we detected that no relevant new information was emerging.

Data collection

Data were collected through a semi-structured interview. The research team developed a set of interview questions relevant to the study objectives, based on the researchers’ clinical experience and a review of the scarce existing literature about patients with chronic illness during the pandemic: How is the COVID-19 pandemic affecting you as a person with diabetes? Can you describe the effect of the stay-at-home order on you at a personal, family, and professional level? Describe to me the care you received for your T2D during the stay-at-home order. How did your lifestyle change (In what sense? Can you tell me?). During the interview, follow-up questions were asked to encourage participants to provide additional details about their perspective.

The interviews were conducted by the principal investigator (PI) between July 2020 and January 2021. In the initial interviews for the ongoing study about T2D and physical activity, the PI had conducted interviews with the participants lasting approximately 45 min. When the pandemic broke out, the team devised a second phase of the study, and the PI invited the participants to a follow-up interview about their COVID-19 experiences. All ten agreed to participate and gave their informed consent. We opted for telephone interviews because we thought it would be easier for participants than video conferencing. We suggested that participants conduct the interview from a quiet place in which they wouldn’t be interrupted. This second interview lasted between 15 and 35 min, meaning that for each participant we have a total of between 60 and 80 min of recorded data. Participants’ confidentiality was protected by giving them pseudonyms. The voice files and transcriptions were encrypted and stored on a computer protected with an encrypted password. The interviews were performed and transcribed in Catalan or Spanish, depending on the preference of the participant. Later, the transcribed interviews were returned to participants for their approval. All participants accepted their transcribed interviews without changes.

Data analysis

Data were analysed using thematic analysis [ 20 ] by ATLAS ti ®vs 9 support. We identified and reported patterns that emerged from the data and arranged them systematically to shed light on the research questions, while trying to keep faithful to the perspectives expressed by participants [ 16 ]. We conducted the analysis in the following phases:

Phase 1 Become familiar with the data by listening to recordings, transcribing them, and reading and rereading the transcripts. Entering transcripts into software Atlas-ti vs 9. Author 1 (MCV) participated in this phase.

Phase 2: Segmenting the meaning units in the transcripts and inductively grouped them to create subthemes and identify relationships among them. Author 1 participated in this phase.

Phase 3: Group the meaning units and abstracted the subthemes. Define the parameters of each subtopic. 14 subtopics have been tagged. Author 1 participated in this phase.

Phase 4: Group the subthemes into overarching themes (which became the primary structure for our analysis). Which in turn we grouped into three themes. Devise a glossary of themes. Author 1 participated in this phase.

Phase 5: Revised, discussed and agreed upon the subthemes and themes while returning to the data to verify the analysis. Authors 1, 2 (MRL) and 4 (GTN) participated in this phase.

Phase 6: Write the research report. Authors 1, 2 and 4 participated in this phase. Author 3 (JVA) examined both the processing and product of the research study.

Rigour, reflexivity and quality criteria

The trustworthiness of data was determined by Credibility, Dependability, Conformability, Transferability [ 21 ].

Credibility has been achieved thanks to the analyst triangulation, to undertook constant revisions of the themes, subthemes and units of analysis and evaluation, ensuring qualitative validity by authors 1, 2 and 4. Transferability has been achieved by describing a phenomenon in sufficient detail to transferable to other settings and people. Dependability was ensured in this study thanks to the review by the third researcher who examined both the processing and product of the research study. Confirmability was achieved through the reflective effort of each researcher to be aware of and try to limit the influence of their own positionality on their analysis. As well as a transparent description of the research steps taken from the start of a research project. All methods were carried out by relevant guidelines and regulations.

The research team have experience with qualitative research and resolved disagreements by consensus, and complied with the Consolidated Criteria for Reporting Qualitative Research [ 22 ].

Ten patients with T2D from four primary care centres in central Catalonia (Spain) participated in the study. Table 1 displays the participants’ main sociodemographic characteristics. Ages ranged from 58 to 79 years, and 60% of participants had had T2D for more than 10 years; most also had a past history of pathology other than T2D.

In our inductive analysis, we identified 14 subthemes, which we grouped into three themes: 1) anxiety, fear and vulnerability, 2) insufficient diabetes monitoring by the health system, and 3) proactive self-care. Table 2 shows an example of the final themes, the codes from which they are built, and an example of a meaning unit from each code.

Anxiety, fear and vulnerability

The context of pandemic and confinement had a strong emotional impact on participants, and the most-expressed emotions were anxiety, fear, and vulnerability. Participants described the lockdown during first wave of the pandemic as something that was totally abnormal and hard to believe; they were shocked to hear the news of the number of deaths in Spain every day:

I thought I was dreaming. I thought this shouldn’t be happening in this day and age 3: 1 (P3).

One issue that respondents mentioned was the fear of infecting others, despite all the protective measures they used. For example, one participant, a health centre worker, was afraid of contagion in spite of the measures she took with her family:

In fact, at first I was worried that I might pass it on to them; I was working, I think the worst time was before [the state of emergency] (…). I got a room ready in case I had to isolate 5:13 (P5).

They also reported negative emotions, such as anxiety and worry:

I have anxiety problems, what`s been getting me down is the fact that I’m feeling a little agoraphobic 8:10 (P8).

It was the anguish of being locked away, of thinking you couldn’t see my 5-year-old granddaughter. My brother …. the family … my daughter and my son… 4:3 (P4).

Others felt fear at seeing so many COVID-19 infections at close range:

We’re all a bit scared. My children have all been through it, three of my four grandchildren. My daughter-in-law has had some awful aftereffects 3: 8 (P3).

Or at living close to death:

Scared. Because you see that the people who started to fall ill were mainly over 55 years old and it really hits you … 6: 1 (P6).

It was made worse by the experience of the loss of friends and family, or by news of acquaintances being admitted to the ICU:

I felt very sad to think of all the people who … I have relatives who have died and … it affected me a lot … not being able to be there … not being able to be with them 3.3 (P3).

On the other hand, some of them managed to keep these feelings of sadness at bay, thanks to their contacts with family, mainly through social media and video conferencing.

I saw them on the phone … and that kept me happy 7:16 (P7).

This feeling of social isolation was extremely negative:

I took it badly because I couldn’t leave the house, I couldn’t see my friends… 9.1 (P9).

For some, it was a negative experience because it disrupted their everyday routines and their self-care.

I felt terrible, it disrupted everything for me. I go to the pool for my water aerobics class, and everything was closed (…). I felt really bad having to spend all day at home 1: 1 (P1).

I used to walk two hours a day, when I was confined because I stayed at home, and I started to put on weight again … 6.4 (P6).

On the other hand, some respondents reported that the confinement and the change in their daily routines was an opportunity for reflection and thinking about their lives:

Three months, locked up at home without singing, without walking, without exercising … I mean, it practically gives you a vision of yourself, the experience of being alone for so many days, it’s a bit like being in a monastery (…). From this point of view the confinement was quite interesting 10.5 (P10).

Insufficient diabetes monitoring by the health system

During the pandemic, health centres prioritised attention to COVID-19 patients, and on-site care of chronic diseases was postponed. Patients reported that their analyses and tests were cancelled:

During the pandemic no diabetes care was available. And even now, there are people who are being told over the phone that it isn’t important … they’re told not to come because no tests are being done 5.6 (P5).

Nonetheless, medication and supplies for diabetics were provided:

At the beginning of the pandemic, I went to look for supplies for diabetes and they gave me enough for three or four months 7.9 (P7).

Some respondents felt abandoned by the health staff who normally cared for them:

Abandoned… (silence) … The normal monthly check-up with the nurse to look at everything (…) didn’t happen. I also have blood tests every three or six months to check my sugar level… (…) but they didn’t happen either 8.2 (P8).

Some participants expressed not understanding the reason for the restriction:

Why can children go to school in a group, in a class, but a doctor can’t see you, they can only talk to you by phone … even though when you go for an appointment there’s a separation between you, the desk, you’re at least a yard away … and wearing their masks … and it turns out they can’t see you … well, a lack of personal protection … yes, you really notice it, because there has been a lot of neglect 8.5 (P8).

But others expressed more understanding of the situation even though they were not seen by health staff:

If you put yourself in their shoes, you realise they couldn't have done any more … 3.5 (P3).

Some patients realised that they had to take control of their disease, because no one else could help them; they ended up accepting the situation:

Well, you realise you’ve got to take care of yourself. And in all, a little self-discipline. Because I didn’t have anyone else to depend on, it was only me, there was no one else (P8).

Others stated that this situation did not affect them because they were already used to a patient-centred model and that the maximum responsibility for their care lay with them:

What sort of care do you expect? We have to care for ourselves … no matter how much they call me and ask me if I’m following my diet, if I’m eating properly, if I’m walking … no matter how much they call … it's up to you …. it's not an injury that you need someone to come and treat you, this is something that’s your own decision 4.5 (P4).

Most participants monitored their blood glucose:

Because I knew I had to check my glucose, I checked it every day and no problem 7.11 (P7).

Proactive self-care

In the management of their disease during lockdown, patients with T2D introduced changes in terms of their physical activity, diet, and medication. Given the impossibility of going outside to exercise, many adapted their physical activity to their home space:

Well, being at home, I coped quite well. I went out onto the rooftop, where I was able to move around and pass the time. I walked up the stairs two or three times. So, I coped quite well 2.2 (P2).

Many participants established routines and did their regular activities, at different levels of intensity:

Every day, every day, every day, and it started … first I started 15 min a day, and then went up to 45 min every day and more intense; I walked fast, then I ran, faster and faster until I got a sore back 4.4 (P4).

This change in physical activity was regarded as a problem by some, but not by others:

I would open all the doors of the apartment and go around until I got tired, and when I got tired, I stopped. It was very boring 1: 5 (P1).

As there was time for everything (…), establishing a routine of walking one hour in the morning and one in the afternoon was not too hard 10: 7 (P10).

However, others abruptly stopped taking exercise:

I didn't do any physical activity while the stay-at-home order lasted 6.6 (P6).

All participants had access to fresh food and their normal diet, since the food shops stayed open during lockdown.

The shops where I go have got everything, fish, meat, chicken, everything 11.9 (P1).

Most reported good adherence to their regular diet:

Well, I saw that I couldn’t … do anything else, or go out … well, it's better to take care of yourself a little, isn’t it? This is also unconscious because I don't think about being diabetic … it’s something I’ve just accepted …. 13.7 (P4).

Others ate between meals, out of stress or boredom:

When I’m nervous, when I’m anxious … there are people whose stomachs close up, but I’m the opposite. I have snacks even though I’m not hungry 12.2 (P3).

None of the respondents had trouble getting their usual medication, and they followed their prescriptions, although they stressed that they were taking the medication without any medical supervision:

What I did is what I always did, there was no change. I went to the pharmacy every month to get my medication 11.9 (P1).

Most participants complied with the recommendations regarding personal protective equipment, hand washing, disinfection, ventilation of the home, and social distancing.

I was careful with my mask, I washed my hands a lot, and cleaned the flat 3.11 (P3).

Some participants applied specific protective measures in their homes:

At the door everyone took off their shoes, and they left their coats in a separate room, they sprayed their hands continuously, and every other day I changed the bed linen, ventilated the flat, cleaned everything. (…). Every time I went to the bathroom I pulled the chain with the lid down, and then cleaned my hands with disinfectant and the toilet as well 4:14 (P4).

Others reported taking particularly strict protective measures, due to their condition:

I took much more care (than other people) because I’m diabetic 8:12 (P8).

Some participants reported that they kept their distance from others, due to their diabetes:

I kept away because I thought I was much more likely to infect them than they were to infect me … so to avoid contagion I kept away from them 8:17 (P8).

Or that their families imposed this distancing on them, in order to protect them:

I asked her [the participant’s granddaughter] to give me a kiss because I needed one, but she said, “No, grandma, I have to go to school, and I don't want to” … And I said, “I’ll just give you a little kiss on your head” and she said “No, no, no!” She wouldn’t let me … 3: 9 (P3).

We have analysed the experiences of patients with T2D in lockdown during the first wave of the COVID-19 pandemic in Catalonia, Spain, and their strategies for managing their disease. Patients with diabetes felt especially vulnerable to infection, and presented emotional difficulties similar to those recorded in patients with COVID-19 at home or with other chronic conditions [ 6 ]. However, despite the changes they experienced in their daily lives and the barriers to accessing chronic care follow-up in primary care centres, they were able to establish routines for self-care.

Fear, anxiety, and vulnerability

Global guidelines on containment measures for the prevention of COVID-19 place special emphasis on vulnerable populations, including people with diabetes [ 23 ]. Our results show that when patients were aware of the risk of contracting COVID-19 due to their T2D status they felt particularly vulnerable and fearful of falling ill. Our data are in line studies showing that having a chronic illness (including T2D), belonging to a risk group, or the death of a family member due to COVID-19 are positively associated with fear of COVID-19 [ 24 ]. The emotional impact of the pandemic was considerable, as the necessary lifestyle changes caused feelings of anxiety among many patients. Elsewhere, the pandemic has been associated with increased stress in general populations, and external stress may reduce physical activity and lead to a poorer diet [ 25 ].

The participants engaged in social distancing due to their fear of infecting others but found the experience to be emotionally challenging. Indeed, due to the high mortality related to COVID and the frequency of near-death experiences, an increased awareness of mortality has been reported during lockdown [ 25 ]. Not only diabetic patients have this perception: other patients with chronic and immunocompromised diseases such as cancer, rheumatoid arthritis, asthma, Crohn’s disease, hypertension, and cardiovascular disease also felt anxiety and fear during the pandemic [ 26 ].

Despite the negative emotional experience of most, for some participants, the suspension of everyday life routines represented an opportunity for reflecting on what was most important to them.

In contrast to reports in other countries [ 27 ], our participants had no difficulty accessing medication or blood glucose control equipment such as glucose strips, needles, or glucometers. However, all of them encountered barriers to accessing primary care. Although they expressed understanding of the pandemic situation, many felt abandoned by the health care system, as other researchers have reported [ 28 ].

Our data suggest that the use of telemedicine and an e-Health model could achieve satisfactory levels of self-care especially in patients with an hb1Ac greater than 6. The popularisation of the Internet and the use of smartphones and emerging fifth-generation networks have allowed patients to attend medical appointments remotely instead of coming to the hospital during the COVID-19 outbreak.

Our results also provide relevant data regarding blood glucose control during the COVID-19 pandemic. Although diabetes is a primary risk factor for the development of severe and septic pneumonia due to infection, patients do not generally intensify their metabolic controls [ 29 ]. This may be due to a lack of information received from professionals monitoring the chronicity of primary pare or due to the lack of protocols or clinical practice guidelines adapted to the situation. In the study by [ 30 ], medication intake was significantly reduced during the pandemic, although in our study compliance with medication intake remained good.

Changes in the provision of health care due to the pandemic have created the need for greater attention to emotional and psychosocial health of patients with T2D. [ 31 ].

The measures imposed by the authorities affected the daily life of the general population as well as that of patients with T2D. In general, this situation was experienced negatively, given that it caused social and family isolation.

The restrictions introduced by the authorities to prevent or reduce the risk of virus transmission led to significant changes in diabetes control. One of the nursing strategies applied to address the needs of patients with T2D in primary care was to promote self-care. Self-care-focused nursing interventions can achieve significant improvements in responsibility for health, physical activity, nutrition, and stress management [ 32 ].

All patients had access to fresh food, since food shops remained open during the lockdown and most patients continued with their usual diets. Most already had a good adherence to diet, although some reported eating between meals out of boredom. Although our participants had access to medication and food, the pandemic made it more difficult to manage their diabetes [ 31 ].

The results show that the stay-at-home order forced patients with T2D to limit their activities, including physical activity. Barone et al. [ 33 ] found that physical activity in diabetic patients fell by 59.5% during the COVID-19 pandemic and suggested that this variable be closely monitored due to its potential negative consequences on metabolic and cardiovascular health. As regards physical exercise, some patients reported decreased activity; others adapted their routines at home to be able to carry out physical activities recommended for a healthy lifestyle, such as walking, running, and going up and down stairs. A few participants performed no physical activity during lockdown, and some achieved optimal T2D risk prevention values, by brisk walking or by observing the current recommendation of 150 min/week of moderate aerobic activity or 30 min/day for 5 days/week [ 34 ]. Despite these changes in behaviour, however, the amount of time devoted to exercise was not optimal for preventing the risks caused by diabetes. The emotional and social impact on certain patients may also be related to the reduction in physical activity, as regular exercise is acknowledged to improve the mental and social health of patients with T2D [ 35 ].

Limitations

This study has several limitations. The first is that the results can only be extrapolated to similar clinical contexts and similar users. The sample is small, and therefore is not representative of all T2D patients with a similar profile. This study can be a launch point, useful for comparison with larger studies in other contexts, to identify best practices in caring for people with T2D during a health crisis.

Second, the context in which the study was carried out was limited to primary care centres in Catalonia with specific sociodemographic characteristics and with good adherence to their prescribed T2D care. Including other types of patients from other geographic areas could provide different results.

Finally, our study includes only the perspective of patients. A fuller picture would emerge if the perspective of nurses monitoring diabetic patients were also included.

Conclusions

This study has provided information on the experiences and emotional responses of patients with T2D during home confinement and on the adaptation of the management of their pathology in Catalonia, Spain. All participants were diabetic patients with good adherence to treatment prior to the pandemic. Due to their health status, patients reported feeling highly vulnerable and fearful of infection. Despite this, patients with T2D were able to establish self-care routines for physical activity and nutrition. In some cases, the lack of access to their normal care at primary care centres made them feel abandoned, although the fact that they were well and that their blood sugar levels were within the recommended levels meant that they did not feel particularly anxious; in general, they were sympathetic to the situation of the health workers. A silver lining of the pandemic may be the way it allowed patients to take control of their disease. This pro-activity on the part of patients should be considered in preparation for future health crises.

Availability of data and materials

The interviews were conducted by the lead author and she is the only researcher who knew the identity of the participants. Her record of interviewees’ names and other personal information will be deleted after publication. Data will be provided upon reasonable request.

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Acknowledgements

The research team would like to thank all participants for their collaboration. We would also like to thank the expert Dr. Susan Frekko.

This research received no external funding.

This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.

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The research team was formed by three nurses (authors 1, 2 and 4) and a medical doctor (author 3). All the authors have experience with qualitative research, but authors 2 and 4 have long experience. Author 4 proposed the study, contributed to its design and to data analysis and supervised the project. Author 2 contributed to analysis. Author 3 examined both the processing and product of the research study. Author 1, who is also the PI, conducted the interviews and contributed to the analysis and to writing the discussion. The author(s) read and approved the final manuscript.

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Correspondence to Mireia Vilafranca Cartagena .

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The study was approved by the ethics and research committee “Fundació Unió Catalana d'Hospitals” (code nº 19/45) and also complied with the principles of the Helsinki Declaration. Participants received verbal and written information explaining that their participation was voluntary and that they could withdraw from the project at any time. All participants provided informed consent. All interviews were anonymised by assigning an alphanumeric code in observance of the Spanish legislation on personal data protection of 2018.

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Vilafranca Cartagena , M., Tort-Nasarre, G., Romeu-Labayen, M. et al. The experiences of patients with diabetes and strategies for their management during the first COVID-19 lockdown: a qualitative study. BMC Nurs 21 , 124 (2022). https://doi.org/10.1186/s12912-022-00911-4

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Living with diabetes: quality of care and quality of life

Pilar isla pera.

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Correspondence: Pilar Isla Pera, EUI, Campus de Ciències de, la Salut de Bellvitge, L’Hospitalet de llobregat 08907, Barcelona, Spain, Email [email protected]

Received 2011 Jan 20; Collection date 2011.

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Background:

The aim of this research was to characterize the experience of living with diabetes mellitus (DM) and identify patients’ opinions of the quality of care received and the results of interventions.

A descriptive, exploratory evaluation study using qualitative methodology was performed. Participants consisted of 40 adult patients diagnosed with DM and followed up in a public hospital in Barcelona, Spain. A semistructured interview and a focus group were used and a thematic content analysis was performed.

Patients described DM as a disease that is difficult to control and that provokes lifestyle changes requiring effort and sacrifice. Insulin treatment increased the perception of disease severity. The most frequent and dreaded complication was hypoglycemia. The main problems perceived by patients affecting the quality of care were related to a disease-centered medical approach, lack of information, limited participation in decision-making, and the administrative and bureaucratic problems of the health care system.

Conclusion:

The bureaucratic circuits of the health care system impair patients’ quality of life and perceived quality of care. Health professionals should foster patient participation in decision-making. However, this requires not only training and appropriate attitudes, but also adequate staffing and materials.

Keywords: diabetes mellitus, health care quality, quality of life, qualitative research

Introduction

People with diabetes mellitus (DM) live with an incurable disease that requires not only drug therapy and blood glucose control, but also a healthy lifestyle and demanding changes in cultural patterns. 1 This situation may have a deep psychological impact on affected individuals and increase their perception of a poor quality of life. 2 DM is one of the chronic diseases that frequently affects perception of health-related quality of life (HR-QOL), 3 , 4 and is often associated with depression. This is, in turn, related to poor adherence to treatment, and to increased morbidity and mortality. 4

HR-QOL is an interesting subjective concept because it provides information, independently of clinical data, on how the patient feels. 5 HR-QOL is frequently used as a synonym for self-perceived health, which has been shown to be useful in predicting morbidity and mortality. 6 – 8 However, HR-QOL questionnaires have some limitations because it is difficult to adapt them to the patient’s context and to measure complex physical, psychological, and functional variables through a simple numerical evaluation. Moreover, HR-QOL instruments only evaluate the dimensions that patients experience directly, and exclude other variables that also affect their health, such as certain biological and environmental characteristics. 9

Several qualitative studies have documented the experience of living with diabetes and the existence of beliefs and perceptions that allow us to understand how people cope with the disease. 10 – 15 Qualitative investigation allows researchers to gain access to the world of emotions, feelings, and daily experiences, and insight into the impact of advanced technologies on patients, their facilities, and the social milieu of the individuals involved. This type of research also aids reflection on the social role of health professionals. Listening to the patient’s account of their suffering can also help health professionals to be more human and genuine. 16 This study aimed to characterize the experience of living with DM and to identify patients’ opinions of health care received and the effects of health care interventions on their quality of life.

We performed a descriptive, exploratory evaluation study using a qualitative approach from a critical perspective because the social construction of reality begins to emerge through the reflective action of individuals and communities, and knowledge leads to action. 17 Intentional sampling was performed, and included all groups representative of patients (gender, age, type of diabetes, and treatment). Forty adult patients with DM followed up in centers from distinct health care levels within the Barcelona public health system were selected. Twenty-six semistructured individual interviews were performed, and two focus groups composed of seven subjects each were conducted. The author conducted all interviews and focus groups in private offices within the health care institutions. The focus groups consisted of patients with type 1 DM. The focus group technique was discarded for people with type 2 DM because the sample was obtained from different core areas of primary health care and it was easier to recruit individual patients to form groups. In contrast, patients with type 1 DM came from two tertiary hospitals, were younger, and were used to participating in group sessions. The initial script was the same for the interview and focus groups. The interviews lasted approximately 30 minutes and the focus groups lasted 1.5 hours. Both the interviews and the focus groups were recorded on audiotape and transcribed verbatim after informed consent was obtained from all participants. The criterion of data saturation 18 was used to establish the number of informants. The interview format was nondirective. Questions were open-ended, broad, and presented in a flexible manner. The investigator made an effort to acknowledge her assumptions of the phenomenon under study and to take into account the potential impact of her subjective perspective on the data. The investigator took part in a reflexive process during which she recorded her presuppositions derived from the literature and her personal views. These strategies were used in an effort to reduce bias and to gain a thorough understanding of the phenomenon under study that was as representative as possible of the participants’ perspectives. 19 Data were analyzed using content analysis and constant comparison following the method proposed by Miles and Huberman, 20 and consisted of data reduction, data display, and conclusion drawing/verification. A content analysis was performed and cognitive maps were designed to facilitate selection and to identify any interrelationships between the most important concepts and categories. To improve the validity of the study, the information obtained was fed back to the informants at the end of the interview and focus groups. Complementary variables consisted of age, gender, type of diabetes, treatment, presence of acute or chronic complications known to the patient, and time since diagnosis of DM.

Sociodemographic and clinical data are shown in Table 1 . Three categories were established in the qualitative data analysis, ie, living with DM, quality of health care, relationship between health professionals and users, and quality of health care resources and service infrastructure.

Sociodemographic and clinical data for informants

Abbreviations: DM, diabetes mellitus; DM1, type 1 diabetes mellitus; DM2, type 2, diabetes mellitus

Living with diabetes

Patients portrayed DM as a disease that is difficult to control and that leads to a change in lifestyle, requiring effort and sacrifice. Affected individuals used the popular concept of “sugar” to refer to type 2 DM treated with oral antidiabetic drugs and the taxonomy of diabetes to refer to insulin-treated type 1 or type 2 DM, revealing the perception of greater severity and complexity. “At the beginning, it didn’t affect me because I only had high blood sugar but when I got diabetes and had to inject insulin I was very worried; diabetes changed my life” (from a 71-year-old man with type 2 DM).

The most common and dreaded complication of the disease was hypoglycemia. Some patients reported that fear of hypoglycemia stopped them sleeping properly, working normally, driving, or going out with friends. Anxiety about chronic complications was only reported by patients with type 1 DM and referred to retinopathy. There was no visible stigma attached to DM, but some patients felt threatened and consequently hid their disease when seeking work, applying for a driving license, or when they were with friends or casual sexual partners. Beauty, youth, being “fit”, and productivity were important shared values and were projected to the interviewees, encouraging the perception of a difference from “healthy” people and consequently the development of stigma: 21 “If you say you are diabetic, you are eliminated from some selection processes” (from a 39-year-old man with type 1 DM). Many patients feared transmitting the disease to their children, generating worry when planning a family and some anxiety if they already had children: “I was too scared to get pregnant and have a diabetic child. My daughter is eight years old and she’s well, but I always think, ‘Will she be diabetic in the future?’ ” (from a 41-year-old woman with type 1 DM). Underlying this etiologic concept was the idea of fate, because diabetes was perceived as being rooted in their lineage and transmitted through the family blood. 22

Participating patients treated with a continuous insulin infusion pump had begun their treatment one month earlier. The patients were satisfied with the training program and hoped that the continuous insulin infusion pump would stabilize their blood glucose levels and give them peace of mind. However, they described the continuous insulin infusion pump as a foreign object stuck to their bodies, which was annoying because the devices were heavy and uncomfortable to sleep with, when bathing or working, or when taking part in leisure activities: “Injections are much better because afterwards you can forget about them” (from a 36-year-old woman with type 1 DM). The pump must be carried at all times, and was a constant reminder to patients of their disease and insulin dependence.

Some participants confessed that they did not follow recommendations, but most tried to find a balance between medical demands and maintaining a lifestyle that did not involve excessive sacrifice or create major difficulties with other people in their environment. Diet was a notable source of conflict because of the difficulties of modifying habits, adapting to the sociocultural environment, and financial considerations: “The diet is expensive. When I go out with friends, I can’t just ask for a large plate of pasta and nothing else like they do” (from a 20-year-old woman with type 2 DM). All patients agreed that they broke their diet because “… it’s the only way to adapt and have the closest thing to a normal life when you go out with friends, are traveling or celebrating something and, sometimes, to give yourself a treat”.

Perceived quality of life by health professionals versus users

Patients valued medical knowledge highly, and considered this to be superior to any other type of knowledge, although this belief did not prevent many informants from seeking alternative complementary remedies.

Patients managed in primary care valued health professionals positively but many criticized their medical care. They complained of the biomedical focus, waiting times, shortness of consultations, and frequent changes of doctor: “The doctor is always in a hurry, he tells you what you have to take and if you have to have a test and then sends you to the nurse so that she can explain things to you” (from a 54-year-old man with type 2 DM). Nevertheless, they recognized that many problems were due to organizational factors and lack of resources: “Quality is not as high as it should be but that’s because of the lack of time and resources” (from a 64-year-old woman with type 2 DM). Starting insulin treatment increased the perception of risk and led to greater demands: “Primary care doctors look at DM in the same way they would look at a leg. When you need insulin, it would be better if a specialist saw you” (from a 72-year-old man with type 2 DM). Most patients found primary care nurses to be kind, and said they provided a great deal of information, but some found this information to be excessive and hastily delivered. Sometimes the information was poorly understood and not well adapted to the patient’s needs: “I know she’s telling me for my own good, but I don’t listen to her. She always tells me a ton of things I have to do … but I don’t do anything. They don’t realize that I can’t because I’m very old” (from a 73-year-old woman with type 2 DM).

Patients managed in specialized hospital units were satisfied with the health care received, although they reported individual differences, mainly among physicians. The informants acknowledged that when they had problems, they were seen rapidly but, as in primary care, they believed that physicians were only interested in glycemia and its complications, and not in the patient as a person, and that they provided little information. “The doctor gives you the results, tells you whether you are all right or not, and so on … It’s true that if you have a problem and telephone, they’ll talk to you but the doctors explain very little on their own initiative. It’s the nurse who gives you the information but you don’t always go to the nurse” (from a 36-year-old man with type 1 DM). Some participants felt that doctors blamed patients for alterations in glycemia control without stopping to think of the causes and without taking into account individual physical, psychological, and social circumstances: “Sometimes it’s not a matter of whether you follow all the steps. Doing the same thing, one day you have a blood glucose level of 200 mg/dL. I always ask myself ‘what’s happening to me today?’ But I don’t know. The feeling I have is that the doctors think that you must have done something wrong … They follow their manual” (from a 37-year-old woman with type 1 DM). The most highly valued health professionals were patient education nurses working in specialized hospital diabetes units, although patients complained of the lack of continuity in patient education: “I wouldn’t give them a 10 because that’s for excellence but I would give them a 9. The problem is that they only see you at the beginning, although if I ring them and ask them something they’re always helpful” (from a 39-year-old man with type 1 DM).

Resources and service infrastructure

The most frequent criticisms related to dispensation of materials, the schedule for consultations and complementary tests, and bureaucratic circuits. Patients with type 1 DM managed in primary care complained of restriction of blood glucose test strips, waiting times for some tests, and lack of free cover for diabetic lancets, podiatrists, and dentists: “Sometimes I jab myself with a sewing needle because a box of 20 costs me more than 7 Euros and my husband’s pension …” (from a 64-year-old woman with type 2 DM).

The most critical patients were those with type 1 DM managed in specialized units. The Catalan system requires them to go to the primary care center for dispensation of materials, which they interpret as an unnecessary circuit that is time-consuming during working hours and involves bureaucratic procedures with distinct health professionals and administrative staff not connected with their health problem and with little understanding of it: “When my doctor changed my insulin or I need another box, I have to make an appointment with the primary care doctor who doesn’t know that form of insulin and doesn’t even ask about it. He brings up screens on his computer until he finds it and all he does is change a few parameters in a database so that he can give it to me. That’s all, but I’ve lost the whole morning” (from a 39-year-old man with type 1 DM).

Interviewees also complained of the lack of coordination that required them to go on different days for tests that could be performed on the same day and of inappropriate schedules: “They never adapt to your needs. They give you a time for a blood test at 11 o’clock in the morning or even later, even though you tell them that you have to inject your insulin and have breakfast” (from a 36-year-old man with type 1 DM). The circuits for material dispensing and scheduling of appointments and tests increased patients’ perception of social vulnerability: “The dispensation of material and the schedule of appointments and tests are appalling. They make you go at times when you can’t because of work. There’s a domino effect that harms us because the schedule increases prejudices against hiring us and, if you have work, you can be fired or passed over for promotion” (from a 39-year-old man with type 1 DM). Participants also believed that the number of appointments and checkups was lower than that recommended by international scientific societies, due the pressure of waiting lists that prevent appointments from being scheduled according to medical criteria: “The doctor tells you to come back within six months but there are no free appointments and it doesn’t matter if you insist because everything’s full up. They tell you ‘… that’s the way it is …’ and give you an appointment for nine months’ time” (from a 36-year-old man with type 1 DM).

Some patients believed that there is a conflict of interest between industry and research aimed at a cure or prevention of DM due to the monopoly they believed some companies have on treatment and control of the disease: “Curing diabetes is not impossible. When you think of the things that can be done! But a lot of money is involved in diabetes treatment and many international companies and many people get a lot out of it. I’m convinced that they could do a lot more but they just aren’t interested” (from a 36-year-old woman with type 1 DM). Patients’ requirements of health professionals and health managers are shown in Table 2 .

Patient requirements of health professionals and administrators

Diagnosis of DM and recognition of the disease is manifested not only by organic and functional alterations, but also by a process demanding lifestyle changes. In their accounts, in addition to physical problems, patients in this survey expressed feelings and emotions that describe the drama of the sick person, and how DM, its treatments, science, and the health system affect their quality of life. They also describe their needs, expectations, and demands, and the relationship they would like to have with health professionals. However, this type of narration does not occur in the context of health care.

The greater perception of disease severity associated with insulin treatment is in agreement with other studies reporting that dependence on treatment and the risks of insulin creates rejection and dread. 11 – 15 Insulin is rejected by many patients because they believe this therapy has pernicious adverse effects, including blindness, 12 – 14 fatigue, weakness, and loss of stamina, 11 – 23 and should only be used when the person is extremely sick. 11 , 12 These beliefs should be taken into account by health professionals, because the symbolic component of insulin treatment affects its perception and acceptance by patients. Most participants did not show concern about the chronic complications of DM, although some knew that they were affected. This lack of concern could be due to insufficient information, to a perception of lack of vulnerability, a coping strategy to reduce anxiety, 24 lack of initial symptoms (because self-diagnosis and perception of risk are related to visible signs and symptoms), and to timing (because the harmful consequences of poor diabetes control become apparent only in the long term). 24 , 25

Most interviewees had difficulty in following a strict treatment regimen. Patients share some objectives with their health professionals (maintaining blood glucose control, avoiding complications) but also have other physical, psychological, and social needs that can conflict with the objectives of health care professionals. Nurses, in particular, aim to get the patient to undertake “self-management” as a way of promoting autonomy and independence. However, some patients believed that DM limits their freedom and, for these individuals, personal freedom, without excessive rules and restrictions imposed by treatment, is the only way to achieve autonomy and independence. Many patients, especially older ones with type 2 DM, view management of their disease differently from health professionals. For patients, good diabetes control equates with not having symptoms and being able to perform their normal activities, whereas for health professionals, control is evaluated through specific algorithms that bear little relation to the patient’s experience. The perception of not being understood and sometimes blamed for poor diabetes control creates unease and distrust, and leads to health professionals being considered as inflexible scientists who “follow the manual” instead of using their knowledge and experience to assess individual situations. The qualities in health professionals most highly valued by patients were their training, professional experience, and empathy. As in other studies, 26 – 31 satisfaction with health care reflected the patients’ perception that the therapeutic relationship was characterized by dialog, respect, agreement, understanding, concern for the emotional and social problems caused by the disease, and a degree of collusion in occasionally breaking a few rules.

Complaints about not being listened to and lack of respect and trust were numerous, and patients linked these deficiencies directly to quality of health care. Patients complained of the need for better administrative and bureaucratic circuits and for health professionals who are effective, kind, and respectful, and who know how to listen and provide information without being authoritarian. Users, especially the young, required information on new developments in research aimed at curing DM or treatment to maintain realistic hope. Many informants believed that there was an absence of interaction that would allow an exchange of knowledge and active patient participation in decision-making. These results are similar to those of other studies that have reported problems with communication and the biomedical focus, independently of the country in which the studies were performed, 32 – 36 as well as patients’ need to have their experience recognized, 37 – 40 given that 90% of the measures to control blood glucose are performed by the patients or their families, who frequently have to make decisions in real time in response to specific situations. The difference in the present study is that users did not only expressed their needs, but also demanded their rights. This finding was common to all the interviewees, but was more openly expressed by those with type 1 DM and by younger patients. Greater vociferousness in demanding their rights could be due to an increase in basic training and diabetes education among patients and their families, the full implementation of democracy in Spain, developments in the concept of health and public discourse on patients’ rights, and could also be a form of exercising empowerment. Patients and patient associations reject health professionals’ paternalistic and authoritarian attitudes and demand therapeutic effectiveness, dialog, participation in decision-making, and respect, even when they do not wish to comply with recommendations.

A much less studied issue is the relationship between quality of life and the administrative and bureaucratic processes of the health system. In this study, the greatest distress in patients with type 1 DM and the largest number of complaints about quality of health care referred to these factors, because they increased patients’ perception of social vulnerability, and directly affected their quality of life and expectations of the future.

This study has some limitations. The advanced age of some patients with type 2 DM and the geographic distribution of the consultations studied made it difficult to carry out the focus group technique that encourages interaction and increases the individual’s reactions. Second, it would have been interesting to gather data from different sources, such as field notes and focus groups, which might have enhanced the richness, breadth, and depth of the data and the worth of the final interpretations. 19 The qualitative methodology used in the present study does not allow the results to be extrapolated to a broader sample of persons with DM, but is appropriate to examine patients’ accounts of their disease, the problems it generates in their lives, and to identify their perceptions of quality of care. The results transcend the strictly individual experience of the interviewees, and enable reflection on the problems of the health care provided for people with DM. Understanding the patient’s existential framework and their experience of DM are key factors for being able to create new strategies for intervention and improvement. 41

In conclusion, the results of this study indicate the main problems perceived by patients with DM that affect their quality of life. These problems concern the difficulty of following a strict treatment regimen for the rest of their lives, fear of hypoglycemia, a disease-centered health care model lacking dialog and participation in decision-making, and bureaucratic and administrative circuits that hamper the integration of the disease into patients’ social and occupational lives. These findings are not exclusive to the study setting or to DM, but reflect the biopositivist perspective that characterizes modern medicine. 42 – 44 Despite the efforts of some health care professionals and the theoretical development of the health care model and the health care professional-user relationship, the model that still predominates in health care is a biomedical one favoring study of the body as an object, allows expert knowledge to dominate in the therapeutic relationship, and grants decision-making power to health professionals, based on visible symptoms and signs of the disease. To improve quality of care, more comprehensive health care is required that encompasses the physical, emotional, and social problems attributable to chronic disease because the biological focus is unable to meet all the patient’s needs. 45 Health professionals should encourage patient participation in decision-making and take bureaucratic and administrative processes into account, because these processes directly encourage stigma and affect quality of life in DM patients. Achieving this aim requires not only training programs and willingness, but also adequate human and material resources. A major source of conflict in the physician-patient relationship is the pressure of work, especially in primary care consultations. This situation leaves patients dissatisfied, and leads to burnout among professionals, 30 brings the philosophy of the primary care center and family physicians into question, and compromises the effectiveness of the primary care reforms introduced in Spain in 1985. These results concerning the experience of living with diabetes are consistent with those of other qualitative studies, but there is still a dearth of data in the available literature on the impact of linking quality of care with quality of life. Future studies in this area are essential.

The author reports no conflict of interest in this work.

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