Data analysis identified two overarching themes contributing to poor glycaemic control: ‘biopsychosocial barriers’ and ‘disease awareness and information delivery’.
Participants indicated that having T2DM, and the resulting continued need to control their glycaemic levels had a significant impact on various other areas of their lives (financial, social, physical and cognitive). Such affects tended to occur in a negative feedback loop: while the disease affected these various aspects of patients’ lives, the financial, social, physical and cognitive factors also then acted as barriers to achieving and maintaining optimal glycaemic control.
Participants highlighted significant financial costs associated with living with T2DM. For instance, many participants pointed out that the mounting costs of medication (particularly Insulin), mandatory health care provider (HCP) visits, alongside the need to take time off work and transport costs were a day-to-day reality of living with T2DM. Such accumulating costs then made it difficult to continue maintaining/achieving optimal glycaemic control:
“It starts hitting your pocket …that’s how bad it got, I was spending about 65-100 bucks just on medication every three weeks.” (Simon, male, 42, urban)
“It kind of added up, and I didn’t have enough money to pay for it and I remember standing there thinking should I ask the girl to put it on sort of an account for me, but you know my pride got the better of me and I just said can you just put it to the side and I’ll return. I returned like two weeks later because I was being paid fortnightly and so I had to suffer ‘cause I wasn’t getting any medication at that time.” (Sean, male, 37, urban)
Many participants also reported that social judgements received from others in public, or from family members when taking their medication, became a barrier to self-management of T2DM. Insulin injections were particularly disliked, primarily because of the impact that this had on other family members. Debbie reported how her daughter had made negative comments about her injecting insulin:
“I would be getting the [insulin] pen out, and my daughter walks in ‘ewww don’t mum, not in my bloody kitchen you don’t’” (Debbie, female, 58, , urban).
Consequently, participants tended to avoid taking their medication in order to shield their family members from the entire seemingly gruesome process. For instance, Simon reported that he didn’t think it was socially acceptable to be injecting himself with insulin in front of his young son in case his son copied him and hurt himself with the needles:
“I don’t want to do injections, and that’s one of the reasons I stopped for quite a while -because of my son being so young. [I] didn’t want him to see me doing that and think [that] it was normal…..so I stopped taking it for like six months.”(Simon, male, 42, urban)
Many participants also indicated that the side effects of T2DM medication served as a barrier to glycaemic control. As a result, many participants refused to take their medication, actively changed their medication, or found alternate remedies that fit with their individual lifestyle. Phil admitted that he stopped his medication because it affected his work:
“The medication [metformin] yes, I did change it, I think it’s effecting me now…. I get diarrhoea, so I try not to take it while I'm working cause I’m on mobile patrol so it’s not ideal” (Phil, male, 42, rural)
Sean, on the other hand convinced his HCP to change his medication due to its adverse side effects:
“I didn’t like the Metformin because I just felt like it was honestly wrecking my insides and the doctor understood … and so I pressured the doctor to push me onto the insulin”.(Sean, male, 37, urban)
Given the negative side-effects of the medication, participants actively sought out alternative methods for controlling their blood glucose levels, including experimenting with the effects on their body after prolonged periods of not taking their diabetic medication and using cinnamon, or a particular diet plan (e.g. Keto) to help control their diabetes. However, the side effects of these alternatives seemed to be worse that the medication itself, resulting in substantial increases in HbA1c levels and reduced quality of life. Therefore, both participants later returned to medication, upon advice from their general practitioner.
“I've looked at other methods of dealing with it [T2DM] like having cinnamon and stuff, because cinnamon is apparently meant to be really good for diabetes. So I was just trying to take it [cinnamon], instead of having all these pills” (Simon, male, 42, urban)
Cognitive and psychological
Additionally, participants reported concerns about their diabetes having a negative effect on their cognitive health, which impacted on their ability to effectively manage their disease. For instance, some participants thought that their diabetes influenced their mental health, indicating that the disease prevented them “from being able to think straight”(Laura, female, 49, urban). Importantly, this lack of mental clarity was observed to be worse during periods of poorer glycaemic control, which then further impacted on a number of factors that made patient management of T2DM difficult. For instance, participants commonly reported the inability to remember to take their medication:
“It’s not very nice when you can't think because your brain fog”. (Laura, female, 49, urban)
“Cause man, half the time I don’t remember to take my pills.” (Simon, male, 42, urban)
Consequently, several participants devised strategies to help them remember. However, even this was impacted by memory loss due to poor glycaemic control:
“Sometimes I have forgotten, like today. Normally I am in a habit of putting the [insulin] pen on the table which I forgot to do this morning” (Debbie, female, 58, urban)
Some participants also recognised that they were not consciously aware of the ‘brain fog’ while their HbA1c levels were excessively high, though they often reported the ability to ‘think clearer’ when their HbA1c levels were lower. In contrast, others did recognise symptoms of poor mental health functioning during the time when their diabetes wasn’t being managed well. These participants all indicated that it wasn’t until they made significant lifestyle and medical changes which resulted in good glycaemic control that they understood the severity of their cognitive impairment.
Overall, participants reported that they perceived their diabetes as unfixable, feeling powerless in their management, and that they are being ‘punished’ and forced to live with the disease indefinitely. Commonly the disease was described as being a burden, overwhelming and a liability. Two participants also wished that the disease had been better explained to them by their HCP, or that they had received more appropriate resources about T2DM while they were in the earlier pre-diabetic state as this would have played a significant role in their health management. Accordingly, the ability to appropriately manage T2DM was also affected by a patient’s level of knowledge and understanding about the disease, alongside the information provided to them by their HCP and other publicly accessible resources.
Disease awareness and information delivery
An awareness and understanding of T2DM in terms of disease biology, its implications for ongoing health and how to manage the disease are vital for understanding the need to maintain good glycaemic control. However, based on the participant accounts from this study, it is clear that many people with diabetes do not have a clear understanding on what T2DM is and how it should be effectively managed. Additionally, barriers to gaining a better understanding of the disease also exist, due to inadequate information being delivered by both HCPs and other publicly available resources.
Many participants reported not having a full understanding of their T2DM and this was identified as a significant barrier to glycaemic control. Weight management is considered to be an important factor that affects T2DM control, though many participants reported being unequipped to know how to lose weight with diabetes. Laura, for example, alluded to feeling trapped with her diabetes because when she tried to do something to reduce her weight she would often experience a hypoglycaemic episode:
“Every time I would go on a weight loss programme my sugars would crash and I’d end up in hospital because they were at 1.0 [mol/mol]. Then they'd shove sugar down my throat”. (Laura, female, 49, urban)
Participants also reported experiencing hypo- and hyperglycaemic episodes which influenced their diabetes control behaviour of trying to cut down on their sugar in order to lower their blood glucose levels:
“I have had one slip up where I had took my insulin and stuff, went for a walk and I collapsed on the side of the road” (Simon, male, 42, urban)
As a result, Simon lost his trust in his dietary plan and was reluctant to cut down on his sugar intake and alluded to his body being different to others and needing sugar to feel normal. Two other participants reported similar stories where there was a lack of knowledge about how to manipulate their insulin dose when working longer shift hours and not being able to consume food at normal times.
The majority of people with diabetes also had a very limited understanding of HbA1c (despite all having a recent measurement of >100mmol), how T2DM affects the body, and how their diabetic medication works. One participant acknowledged this misunderstanding, yet simultaneously indicates that she still does not have clear knowledge about her medication:
“I always thought that metformin was supposed to bring my sugar level down. I only just found out that it’s not…they're to keep your valves or your arteries open or something like that” (Laura, female, 49, urban)
Other participants reported that their diabetes was poorly controlled because they did not understand the extent of severity of their disease and several preferred to ignore the direct impact that T2DM was having on their body. Penny for instance, only accepted years later that she had sustained physical damage to both her feet and eyes that was caused by diabetes:
““The bottom of my leg is discoloured and [it] has been for a number of years. It was kind of like the first warning that I had diabetes, it was the first sign and I knew that, and I just chose to ignore it... I went to have my eyes checked this year for the first time, and they showed me the damage that was done to my eyes that won't be healed again” (Penny, female, 64, urban)
The importance of consuming food with medication, and Insulin levels needing to be adjusted in response to the quantity of carbohydrate eaten were both factors that several participants reported that they were unaware of and did not understand. Accordingly, this lack understanding had negative impacts on these participants’ ability to effectively manage their diabetes and therefore acted as a key barrier.
Healthcare Professional Factors
Participants reported negative experiences with HCPs when dealing with their T2DM and this was also identified as a barrier to glycaemic control. Many reported issues that included a lack of cultural awareness, lack of appropriate communication, mistrust in the HCP and perceived insufficient information being provided by the HCP. Many found that their HCP was not overly helpful:
“There wasn’t much help from the health professionals [nurses]…… their answers when I did talk to them were……. yes they were kind of, quite snarky.” (Phil, male, 42, NZE, rural)
“I've learnt to favour the GPs that will support you now and ignore the ones who don’t” (Simon, male, 42, urban)
Some people with diabetes did receive support in the form of pamphlets or were directed to online resources on diabetes from some GPs and other practice staff such as nurses. Others sought these resources themselves. However, all found that the resources available for people with diabetes in New Zealand were not directly relevant and thus were unhelpful to them.
A lack of availability and access to relevant resources was a major theme that participants reported as impacting on their diabetes management experience. Participants reported that the information they received from their HCPs was out dated and not culturally appropriate:
“They gave me a diet book ... [there’s] a non-cultural perspective, but I think they were also outdated which makes them not that relevant.” (Penny, female, 64, urban)
Some participants attempted to seek out their own health education through online educational tools. However, these were also not relevant to the New Zealand context, given they were mostly tailored to the American market:
“There is a YouTube channel, I’ve been watching then for a while, but she’s American so it’s hard to follow, they’ve got different stuff over there” (Rose, female, 25, urban)
Others resorted to seeking out secondary specialists in an effort to gain more advice. However, this option was not available for those living in rural localities:
“I went, tried to suss out a nutritionist or something like that, to get ideas and things, but there's no one around here” (Phil, male, 42, rural)
Finally, participants expressed an interested in having access to ideas and resources on how they could make diabetic dietary changes through cooking and food that suited their lifestyle in the New Zealand context. Such resources could serve as another tool to boosting patient confidence and motivation to actively control and maintain their glycaemic levels.