Table 4 Finalised conceptual framework
Themes | Sub themes | Description | Â |
|---|---|---|---|
Medical Information | Cumbersome medical information | The complexity and poor user-friendliness of medical information presentation | " I still don't understand what high blood sugar means. The doctors just keep asking me to have my blood drawn to test it, to find out exactly how high it is…" (FG4, P1) "This confuses me, how can one disease have so many different therapies? … I think there might be different types of Metformin… it's different in the hospital (compared to what's available in community clinic or pharmacy near my suburb). " (FG4, P2) |
| Â | Lack of sources of information | The struggle to find consistent and personalised medical information | "Since being diagnosed, I've been paying close attention to this issue. I like to consult various doctors for advice, but I found that different doctors give different suggestions." (FG4, P1) "The doctor only gave me some general dietary advice. It doesn't really have anything to do with what I usually eat, like I don't have noodles. But I don't know how to look for other trustworthy information." (FG1, P2) |
| Â | Biased information | This construct captures the impact of culturally and societally influenced information on the excessive treatment workload or burden. The challenge arises not from a lack of information but rather from cultural and societal distortions of the information available | "I don't want to use insulin because it causes hypoglycaemia. I've been told that by others, and I know, I know that hypoglycaemia is horrible." (FG1, P3) "Another patient asked, 'Why is your hand that colour?' Answered: 'It's because of the medication. No, not exactly the diabetes medication. But I feel it is.' " (FG2, P1, P5) "I just stick to rice, you know? They say that's all we can have, and now it's pretty much all I eat," remarked a participant, expressing a prevalent dietary misconception among Chinese patients that eating only rice and vegetables is synonymous with health in their cultural context, specifically in remoted area (FG3, P2) "I tried using vinegar-soaked eggs, but it (preparation process) is too much trouble, and it doesn't seem to be very effective." (FG1, P3) |
Healthcare System | Healthcare fragmentation | The challenges arising from system fragmentation are substantial, where patients must navigate a segmented healthcare system and coordinate treatment across multiple departments and providers | "Going to the hospital and figuring out which department to register with wastes a lot of time." (FG3, P2) "The most troublesome thing is that every time I go, there are different doctors, sometimes nurses. The varying advice confuses me." (FG4, P2) |
| Â | Healthcare provider | The complex challenges in patient-provider interactions and consultations, emphasising constrains in the consultation and the impact of the healthcare providers' attitude | "In the room, doctors consult with numerous patients, leaving me with limited time to communicate. Each visit to the doctor is tense (both in terms of time constraints and emotional stress)." (FG1, P4) "During my experience, an unpleasant attitude from healthcare staff really impacts my perceptions and experiences with treatment, primarily due to losing confidence." (FG3, P5) |
| Â | Insurance or recourse use | The complexities of insurance and healthcare resource utilisation, such as inconsistent reimbursement processes and bureaucratic obstacles | "Most of the time, insurance only pays for when you're actually in the hospital. Anything outside (outpatient clinic), you're on your own." (FG2, P5) "The rules for getting money back are all over the place. Different insurances make you jump through different hoops." (FG4, P4) |
| Â | Difficulty with healthcare access | Emphasises systemic barriers in accessing healthcare services, influenced by hospital protocols, and external factors like pandemics | "Why can't hospitals do the same? Like banks keep a couple of counters, just for us (follow-up patient), just make it simple." (FG3, P2) "Getting into the hospital is like going through airport security (during pandemic). You got to show your travel code, health code, and even your COVID test results. Then, there are lots of forms for all of it." (FG1, P2) |
Administration | Periodic examination/monitoring | The challenges associated with frequent medical check-ups and the resource-intensive nature of routine monitoring | "They often ask us to repeatedly check our blood sugar, right? Only after examination can they prescribe medication. ……I feel like there are too few settings (in community). And every time I go to the hospital for a check-up, it's very troublesome, and I have to queue for a long time." (FG4, P2) "I have to go to the hospital (instead of the community clinic) every three months. Mainly to see specialists and for periodic examination, because there is a lack of machines in the community health facilities." (FG1, P1) |
|  | Arranging appointments | The difficulties faced in scheduling medical visits, especially by senior patients who may struggle with technological systems | "Both seeing the doctor and getting prescriptions are burdensome. When I was first diagnosed, I had to see the doctor frequently." (FG4, P1) "Initially, I followed my usual procedure of going to the clinic. However, all the appointment slots were booked up (by others online) …… no slots remained available for elderly." (FG3, P1) |
| Â | Documentation and paperwork | The complexities of keeping health records and remembering what needs to be done, in terms of compiling, updating, and maintaining the documents | "My main burden is monitoring and recording. Sometimes I test my blood sugar, but I didn't record it. The doctor asked me to keep continuous records." (FG4, P1) "Yes, to test blood sugar, and then record it, and medicine intake, and dietary (all need to be kept in health record), or they will ask you more." (FG4, P4) |
| Â | Glucose meters | The use of glucose meters in T2DM treatment poses specific administrative challenges, particularly regarding the need for consistent monitoring, the frequency of use, maintenance of the meter, and the discomfort associated with its use in self-management | "The procedure requires checking blood sugar levels before meals using fingertip blood, and the needle scares me." (FG1, P1) "I need to buy needle every month. If the needle of the glucose meter has been stored for an extended period, I worry that it may lose its accuracy. " (FG2, P1) |
Medication | Management of medications | The logistical challenges in adhering to medication management, encompassing issues like medication storage, concerns about shelf-life, and the cognitive demands of various treatment schedules | "Remembering to take my medication is a challenge. I often forget, especially when I'm busy." (FG1, P1) "Dealing with medication is a burden… remembering to take the medication is hard and carrying it around when going out is inconvenient." (FG4, P3) "Getting medication from the pharmacy is a hassle. Sometimes they don't have what I need." (FG3, P3) |
| Â | Complexity of medication use | The cognitive load and stress from complex medication use regimens, such as the number of medications, timing, and potential interactions concern | "Taking multiple medications at different times of the day is confusing. I sometimes mix up the times." (FG3, P1) "I used herbal medicine before, it smelled terrible." (FG2, P4) |
| Â | Ambivalence towards medication | This construct encapsulates patients' mixed feelings about their diabetes medication, balancing the recognised necessity of these drugs for health management with concerns over dependency | "If I don't take my medication, I feel anxious. It's like I'm addicted to it." (FG1, P4) |
| Â | Side effects and hypoglycaemia | Deals with the management of medication side effects, particularly the risks and fears surrounding hypoglycaemia | "I've experienced low blood sugar. It's terrifying because it feels even worse than high blood sugar.A friend told me to put a candy in my pocket and I've been keeping it in mind." (FG2, P5) |
| Â | Insulin- or injection-related burden | The unique logistical and emotional issues related to insulin or injection therapies, such as concerns of usage, storage, or public stigma | "Storing insulin while traveling is a problem because it needs refrigeration." (FG2, P6) "I feel embarrassed when injecting insulin in public places. I always have to find a private place to do it." (FG4, P2) |
Lifestyle | Interruption of lifestyle and daily routines | Highlights the lifestyle changes necessitated by T2DM treatment, such as dietary adjustments and change in leisure activities, emphasising the conflict between personal lifestyle choices and the compromises required by the disease | "I used to enjoy travelling, but with the way I have to manage my condition now, I just don't have the courage to go far. I stick to places close by and then head back home." (FG2, P2) "Each morning follows a strict routine to comply with my health advice—monitoring my blood sugar, preparing a meal that fits my diabetes management plan, and administering insulin before I eat." (FG1, P3) "For example, I particularly like to eat lychee, but I can't eat it anymore." (FG2, P1) |
|  | Challenges of health behaviours | The difficulties in adhering to recommended health behaviours for T2DM treatment advice, including weight management, physical activity, and dietary compliance, and sheds light on the barriers that hinder the effective implementation of interventions | "Losing weight is the big talk, but it's easier said than done, you know? …… The doctor told me to get moving, but honestly, I just can't be bothered." (FG2, P2) "The doctor advised me to increase my physical activity, but I struggle with that. I really should tell the doctor about my knee pain!" (FG1, P5) |
Personal resources | Expenses | The financial challenges of T2DM treatment, covering direct medical costs and indirect expenditures such as medications, monitoring, consultations or self-management supplies | "Four injections per month cost me around 2000 yuan. On a salary of just 3,000 to 4,000 yuan, that's a huge financial burden." (FG3, P5) "Money is tight. It's not just the medicine, but also all the checks and tests I have to pay for." (FG1, P5) (Some other participants questioned why he still found the burden heavy despite having retirement medical insurance covering 85% of costs.) "Sure, hospital stays get covered, but the outpatient clinic? Not a dime. After retirement, my only income gone." (FG2, P1) "The testing strips are the worst. The ones I use cost 315 yuan for 50. I need to test three times a day, so they don't last long." (FG1, P3) "My glucose levels have been inconsistent, but skipping expenses for children's education wasn't an option. It's becoming a financial strain." (FG4, P2) |
| Â | Time | The substantial time commitment necessary for treatment task, including daily medication or insulin administration, waiting for healthcare services, and routine monitoring | "It's a cumbersome process. Going through the pharmacy in clinic takes a lot of time, it's exhausting." (FG1, P2) "I've been advised to stick to my medication and keep track of my health metrics in clinic. But honestly, every trip for a check-up is a hassle, what with the long waiting." (FG4, P2) "As for getting registered, there's a sea of people waiting. The lines are just too long, eats up a lot of time." (FG3, P5) |
| Â | Travel | The logistical hurdles in accessing healthcare, such as the distance to medical facilities and the added complications brought about by external factors like the pandemic | " Sometimes, I have to go quite a distance just to pick up my medicine." (FG4, P4) "My friend's medical insurance is tied to his hometown (in another province). He has to travel back just to get his medicine. How tricky it can be, to manage diabetes when you're away from home." (FG4, P4) "(During pandemic) If I want to take public transport, I need a RATs (Rapid Antigen Tests) result from the last 24Â h." (FG1, P1) |
Associated factors | Antecedents | This category encompasses underlying determinants such as health literacy, health locus of control, comorbidities, and socioeconomic status, which influence the individual’s perception of T2DM treatment burden. It focuses on patient or disease characteristics that precede the experience | "Since I was a nurse, I grasp these medical instructions with ease. However, I realise that for someone without medical knowledge, deciphering complex instructions and ensuring correct medication intake could be quite challenging." (health literacy, FG1, P4) (Patient’s insight of why feeling stressful of the administrative task) "I feel like managing my diabetes is entirely in my hands. If my blood sugar spikes, it might because I didn't follow the diet or exercise plan properly." (health locus of control, FG 4, P3) (Patient with a hearing impairment): "It’s tough getting what the doctors said. I've got to use my phone or hearing aids just to get by in a simple chat." (comorbidities, FG1, P1) "After my thyroid cancer surgery in '04, I've been down to one vocal cord. Makes it hard to talk, especially with healthcare folks. And the pills! Three for the thyroid and six for my diabetes, every single day. It's just overwhelming." (comorbidities, FG1, P2) |
| Â | Consequences | This category outlines the downstream outcomes of T2DM treatment burden. It specifically addresses the resultant impacts on adherence to treatment, psychological well-being, social life, personal function and overall quality of life due to the treatment burden | "I worry about the future. A single child may bear the treatment responsibilities for four or six elders. When illness hits most of us, who will shoulder mine (the treatment)?" (psychological distress, FG3, P2) "Whenever I'm out with colleagues, I have to sneak off to manage my diabetes, typically to administer my insulin. This behaviour can make me seem peculiar, and frankly, it's not something I feel like having to explain." (challenges in social and interpersonal, FG4, P1) "Because of my dietary needs, the whole family has shifted towards eating coarse grains. Although they haven't complained, I know it has affected our quality of life." (quality of life and challenges in social and interpersonal, FG3, P6) |