Theme 1: mismatched viewpoints on the ‘problem’ of psychological distress

From the physician’s perspective, psychological distress was not a concern for all PWD, as they recognised that it stemmed from ‘unsuccessful diabetes management’. The physicians posited that diabetes distress were unlikely to arise in patients with adequate glycaemic control. For example, psychological challenges highlighted by physicians were often centred around adherence issues and financial constraints rather than the emotional experiences of the patient themselves.

The more medicines patients take, the higher the hurdle for treatment and the (financial) burden. (Physician 02)

It is not always the case that the patient will get better because he/she has worked hard on diet and exercise, so I think the psychological burden of not wanting to take more medication, or taking more medication even though he/she is working hard, or having to pay more for treatment, is probably quite large. (Physician 05)

I don’t think patients would feel much conflict if they were in a situation where their blood glucose control is stable, or if they are doing their best to get positive results from their treatment (Physician 01)

This perspective reflects a broader concern regarding the systemic challenges faced by patients rather than implying any individual shortcomings. These observations indicate that the physicians’ understanding of diabetes distress is often influenced by clinical outcomes and systemic issues, rather than directly reflecting the emotional states of the patients. Physicians viewed high HbA1c as a primary source of stress for their patients.

In contrast, PWD described the psychological challenges associated with type 2 diabetes, including feelings of shock at diagnosis, the burden of daily self-management, inability to control their diet as much as they would like and inability to exercise. They also reported anxiety associated with both increased and decreased blood glucose levels.

I was not good at exercising, so even if I was told to exercise, I did not know what to do or how to do it, and I couldn't even do hard exercise. I couldn't do hard exercises and the doctor told me many things that I couldn't do, so that was pretty hard on me. (Patient 06)

I was always worried about my HbA1c level, and every time I went to the doctor (from the reception to the end of the visit), it took an hour and a half, which was painful and agonising. I got angry when it (HbA1c) went up again. I get angry if it went up again, my body would get worse again. (Patient 10)

When you have diabetes, you get tired easily. This tiredness has affected my mind. (Patient 03)

No, I have no choice but to pray, pray, pray. It’s just like the announcement of passing a test. It’s just like an announcement of the result of an entrance exam. Every month. (Patient 10)

These statements highlight the complexities of patient emotions tied to diabetes, however, the clues for the physician to determine whether the patient was suffering from a diabetes distress was when the patient’s test values, such as blood glucose levels, were not stable, or by what they said or did in the exam room. Therefore, some physicians believed that patients with stable physical conditions did not experience psychological conflict.

Some patients had learnt how to deal with diabetes from their relatives with diabetes; consequently, they believed their experiences made them less likely to be stressed.

As far as diabetes is concerned, I didn't think it was too much of a challenge because if I took my medicine, my (blood sugar) level would go down. (Patient 01)

These vignettes present a landscape of mismatched viewpoints regarding psychological challenges in PWD. PWD experience diabetes distress stemming from shock at diagnosis, self-management struggles, and anxiety over blood-glucose fluctuations. Conversely, physicians view diabetes distress through medical lenses, citing issues such as poor adherence, financial strain and unstable test results. Although HCPs recognise the importance of addressing both the physical and psychological aspects of diabetes, there is a concern that these divergent perspectives may lead to support for diabetes distress being limited to patients with an emerging problem.

Theme 2: unspoken struggles: PWDs’ self-responsibility and HCPs’ limited resources in diabetes care

Many patients believed that diabetes was their responsibility and that they should be responsible for dealing with illness-related problems.

Ultimately, type 2 diabetes is a problem in one’s own life, especially because it is a lifestyle-related disease. Therefore, there is probably a sense of self-blame, and that is something I have to solve by myself in the end. (Patient 03)

It was caused by my own poor diet. I don't want to think about it, but I feel that way again. (Patient #08)

Even if I consult with someone, in the end it’s me who has to do it. (Patient #04)

This sense of self-responsibility often stemmed from societal perceptions of diabetes as a lifestyle-related disease, leading to feelings of shame or self-blame when challenges arose.10 32 The diabetes distress cited by the patients varied. Patients described their own experiences, including shock at diagnosis, anxiety and dissatisfaction with diet and exercise regimens, self-blame due to poor self-management, anxiety about blood glucose levels, medical costs, complications, negative effects of daily stress on their health, inconvenience in daily life due to disease, weight gain or loss, frustration when self-management results were not reflected in medical data, stigma, relationships with doctors and other healthcare professionals, dissatisfaction and anxiety about treatment, and a wide range of other issues.

I can cut down on sugar as much as I like, but when it comes to salt, I can't help myself. (Patient #07)

It was really tough at first, for about a year, because there are so many temptations in the city. (Patient #06)

The fact that I was working so hard but not getting any results was really damaging. (Patient #03)

Although PWD experience self-blame and feel the need to address their diabetes distress on their own, support from family members and close associates provides crucial encouragement. PWD reported receiving substantial assistance from their families in coping with their conditions. Some indicated that they never experienced diabetes distress because they could quickly alleviate stress through communication with family members or close friends they felt comfortable with.

My son is very important to me. I can't imagine what my life would be like without him. (Patient 07)

I would say stupid things like ‘I'm so hungry’ to my son, and he would encourage me to ‘hang in there a little longer’ (Patient 06)

Furthermore, patients tended to seek guidance from individuals with medical knowledge due to their concerns about their physical condition and self-management. To actively pursue their sense of self-responsibility, patients engaged in various strategies to obtain accurate medical information. These included friends and family members who were medical professionals, as well as close relatives who also had type 2 diabetes.

I think that if someone with a medical licence is talking there, then it’s reliable. (Patient 06)

Patients who had a close relationship with a doctor or other healthcare professional defined the healthcare professional as someone who knew about the disease and someone they could talk to about anything without feeling embarrassed. It was with these people that they also shared the painful feelings associated with self-management. However, other patients defined healthcare professionals as someone to whom they sought medical advice, only discussed treatment and self-management and did not actively share their emotional feelings. Physicians expressed the belief that their ability to provide psychosocial support was primarily restricted to offering general lifestyle advice and explaining drug treatments. This limitation was attributed to several critical factors, including a significant lack of human and time resources, insufficient training in addressing psychological issues and the absence of reimbursement benefits for such support. Many physicians felt that the healthcare system did not allocate adequate resources for the psychosocial aspect of patient care. For instance, they often faced overwhelming caseloads, which restricted the time available for each consultation. This reflects a broader systemic issue where financial constraints hinder the provision of comprehensive care.

I think the most important factor is cost. The costs of human resources, time, and almost all other costs are insufficient. There are of course cases where people want to do something but can't. (Physician 01)

Due to the time limit, I can't listen to every little detail either. (Physician 08)

Moreover, the time allocated for consultations was frequently criticised. This succinctly highlights the reality many physicians face: despite their desire to support their patients emotionally and psychologically, the structure of the healthcare system limits their capacity to do so effectively.

My consultation time is fixed at 7.5 minutes per person, so it will not increase beyond that in principle (Physician 06)

It’s not that the doctors are bad, but because the time per consultation is already down to 5 minutes or so, I think it’s quite difficult to provide psychological care within that time. (Physician 05)

While physicians agree adhering to diabetes distress guidelines is considered an ideal approach to comprehensive patient care, the practical implementation of these guidelines is fraught with challenges. The discrepancy between theoretical frameworks and real-world constraints further complicates HCPs’ efforts to address the psychosocial needs of their patients.

There are many people (patients), so I think we just have to think about what we can do little by little in that situation (Physician 03)

Even if I want to learn, I don't know where I can learn about things like that. I don't know where I can learn about psychosocial aspects. (Physician 07)

Theme 3: perceived motivational deprivation in patient–HCP relationships: struggling between support and discouragement

HCPs can serve both as motivators and demotivators. Patients visit a clinic once a month, undergo blood tests and are examined by a physician. The relationship between patients and HCPs (mainly patients’ doctors) can be divided into two main types. One is an HCP who understands the patient well and can be trusted: the HCP looks at the test results, praises the patient for a month of hard work or sympathises with the difficult days and offers words of advice and motivation for the next month.

I'm in the diabetes department, so there are only diabetics here, but even when I'm waiting in the waiting room, I hear voices (of sympathy and praise for my efforts in self-management) like that. I hear them saying things like, 'You did a great job,' and I think it’s very important to hear that person being praised. (Patient 06)

The nurses' help was the most important as they listened to me and helped me when I couldn't do it. (Patient 07)

The other type is HCPs’ motivational deprivation of the patient. By providing one-sided lifestyle guidance without listening to the patient’s life background, patients became exhausted and visits to the clinic became a painful experience.

After all, I was told to reduce the final number, whether it be weight, blood sugar, or haemoglobin A1c. I understand that this is true. But the previous doctor was not so clear about the specific numerical target (Patient 01).

I have to go once a month, 12 times a year, so I don't want to go with a bad feeling when I go. I don't understand why I have to pay money once a month and get angry, or why I have to complain about my efforts. It is my body, and it is natural for me to work hard, but I want to go see someone who understands that. (Patient 06)

Physicians devised ways to reinforce disease awareness, lifestyle advice and drug treatment policies so that patients could become active in self-management behaviours. They also provided support to motivate patients to self-manage their disease based on a good understanding of their situations and personality traits.

If hospitalisation is possible, I always tell them that if they have the right knowledge and work on it correctly, it(diabetes) is not something to be afraid of. Then there are drugs. There are several medications that can help people lose weight, so I try to motivate them by showing them that they have lost weight, and they become more positive about treatment. (Physician 01)

I look for positive aspects in the patient, find them, and develop them. Of course, in the beginning, I tell them how important it is, or that it will make them blind, or that they will have a myocardial infarction, etc., but to be honest, many times it doesn't resonate with them, so I try to develop their good points. (Physician 08)

However, the physicians also shared their experiences of misreading patients’ intentions and undermining their trusting relationships.

When I came to see the patient, he always said ‘yes, yes, it’s okay’, but he cried to the nurse and said, ‘It’s hard that I can’t smoke’. I wanted to ensure that the patient had a firm grasp of the knowledge. In short, like a schoolteacher,… Then gradually, the patient stopped making eye-to-eye contact with me. (Physician 03)

In the quote from physician 03, the physician reflects on a misalignment in communication with the patient. While the intention was to educate, the approach may have inadvertently led to a breakdown in rapport. This situation illustrates the challenges HCPs face in understanding and addressing the emotional needs of patients, particularly in the context of diabetes management. This difficulty in communication not only contributes to patients’ feelings of discouragement but also ties back to earlier discussions regarding patients’ hesitance to disclose their emotions, ultimately fostering a sense of motivational deprivation.

Despite the good intentions of physicians to motivate and educate, they often find themselves in a conflicted position where their methods may not resonate with patients. This underscores the need for a more nuanced understanding of patient–provider dynamics in diabetes care.

Theme 4: self-tracking data as a communication channel with HCPs and as a tool for self-motivation

Some patients used self-tracking and diagnosis data not only for self-management but also for communication with HCPs and self-motivation. This self-tracking behaviour can provide insights into PWD’s emotional states and levels of diabetes distress, as it reflects their engagement and commitment to managing their condition.

Most patients maintained some form of record of their weight, lifestyle and test results, but the positivity of the records varied from individual to individual. Many patients were given a ‘Diabetes Coordination Notebook’ by their HCPs. The notebook was published by the Japan Diabetes Association, under the sponsorship of several pharmaceutical companies. Patients can obtain this notebook free of charge. It is expected to be used to share patients’ medical and physical information in team-based medical care. The main section is for the medical facility to record the test results and findings at the time of patients’ visits. The association also provides a ‘Self-Management Notebook’ for patients to record their self-management. The notebook is in photocopiable form, and photocopies can be provided to medical institutions.

Even patients who did not actively record their medical conditions had been recording and storing the results of examinations at the time of consultation in the form of this Diabetes Coordination Notebook or similar. Some patients said that the ‘Self-Management Notebook’ was too cumbersome, and they stopped recording it.

No, I don't do it now, not at all. In the beginning, I used to write in some kind of diabetes handbook that I got at the beginning, but I don't do it at all now. (Patient 01)

However, some patients actively recorded their daily lives. Many of these patients actively used records to reinforce self-management behaviours and to communicate with their HCPs. This active engagement serves as a coping mechanism, providing a sense of control that can alleviate feelings of distress associated with managing diabetes.

I feel like I submit every time, and the changes in numbers are recorded by the doctor. I measure my blood glucose levels in the morning and before dinner in the evening, and I also record my weight and the number of steps I took the day before and the number of steps I walked. I also record my blood pressure, so I hand it in as well. (Patient 03)

When I go to the doctor once a month, the doctor tells me that I'm getting calmer and that I've lost weight, and she tells me what I'm doing and that it’s good, and that I should keep doing it. When I gain a little bit, she tells me what I did. When I gained a little weight, she would ask me what I did to gain it, so I told her honestly that I had been exercising a little less and eating more sweets than usual. (Patient 06)

The patients mentioned that the records were a great motivation for them to continue self-management and improve their lifestyle. This self-motivation is crucial in mitigating the diabetes distress often associated with self-management.

I feel quite accomplished when I get my step count. (Patient 04)

I'm turning it into a game (of keeping track and improving lifestyle). By doing so, I feel that I am able to strengthen my motivation. (Patient 03)

Among patients using self-tracking, preferences diverge between those who leverage digital tools and those who favour paper-based methods. This divergence reflects the broader spectrum of individual experiences and needs when it comes to managing their health.

I really want to welcome the (CGM’s) aspect of being able to get 24-hour data and the ease of collaboration with doctors (Patient 03).

I actually love the task of writing, and I write a diary every day, (Patient 06).

This points to a group among patients who may find solace and clarity in traditional methods, despite the potential benefits of modern technology. From the HCP’s perspective, the acceptance of digital tools within healthcare institutions varies.

I hope there can be digital tools that allow me to consult immediately when I'm facing difficulties in my daily life (Physician 3),

From the HCP’s perspective, the acceptance of digital tools within healthcare institutions varies significantly, with some professionals hesitating about their implementation. On the other hand, a certain physician reflects an understanding of the potential benefits digital tools can bring to both patients and providers, emphasising the need for accessible communication channels. However, there are significant barriers to adoption as well. The acceptance of digital tools within healthcare institutions was hesitant about their implementation.

There are many doctors who are not good with digital technology (Physician 09).

When it comes to dealing with trouble, it becomes difficult to implement these tools if no one is familiar with them (Physician 08).

While I think real-time blood glucose monitoring is incredible due to the advancement of devices (Physician 03)

These comments highlight a critical challenge in integrating digital tools into clinical practice.

While there was some hesitation about using digital tools for self-tracking and blood glucose monitoring, some physicians expressed the opinion that self-tracking on shared lifestyles was useful because it provided information to fill in the gaps between monthly laboratory values, while others expressed hope that the continuous visualisation of blood glucose levels outside of office visits would help in planning treatment. However, only a limited number of physicians have adopted the currently available CGM equipment for treatment.

Of course, HbA1c is considered to be the sum of two months' data, but there are things in daily records that can't be understood from one-time data, so I think it (sharing self-tracking data) is useful from that perspective as well. (Physician 08)

I think it has a huge impact. Until now, we have only been able to obtain information about a patient’s eating habits from their own words, but now we can see their blood glucose levels as an objective indicator on a graph. We can talk about things like, “It’s high at night,” or “Unexpectedly, it’s higher in the morning”, or “What are you eating at that time?” I think this will reduce the time required for discussion, or rather, the time required for exploration and enable conversations that approach specific actions. (Physician 05)

I write my weight in my Diabetes Coordination Notebook, so my doctor can comment that I’ve lost a lot of weight. (Patient 03)

Through the lens of self-tracking data, PWDs not only navigate their diabetes management but also engage in a transformative process that fosters self-efficacy and reduces psychological distress. The act of documenting their health metrics serves as a dual-purpose tool, facilitating communication with HCPs and empowering patients to take ownership of their health. This interplay between self-management and emotional well-being underscores the critical role that self-tracking plays in alleviating the psychological burden often associated with living with diabetes.