In total, 17 respondents participated in the study. Selected results from the structured interviews and notes are listed in Table 1.
In the analysis, we found that the participants’ experiences of living with T2D fell along two continuums from an emotional to a cognitive expression and from reactive to proactive behaviour which reflected how they managed T2D in their daily lives. This led to identification of four archetypal characteristics: (I) powerlessness, (II) empowerment, (III) health literacy, and (IV) self-efficacy. We conceptualised these archetypal characteristics in the model below (Figure 1).
Furthermore, the archetypal characteristics and statements made by our participants indicated the importance of using different invitation approaches to promote participation in preventive initiatives in accordance with their positions in the model (Figure 2). In Figure 2, the 17 individuals represent the study participants and the numbers refer to their study numbers listed in Table 1. The participants’ positions in the model are based upon our interpretation of the findings.
Participants who displayed the archetypal characteristic of powerlessness expressed how overwhelmed they felt living with T2D. Their statements indicate the predominance of their emotions and a limited ability to undertake diabetes self-care tasks, particularly with respect to following dietary recommendations.
Conflict between daily life and T2D
Participants in this group dealt with diet management by adopting a few self-selected recommendations and then relapsing to old habits. This happened even though they were aware of the importance of diet in order to prevent or delay diabetes complications, or that their work might be at stake:
‘You must be careful, you might lose your job; if I push it up to that level, I can stop myself from eating very much for a period of time. It’s a kind of conflict: do you want to live longer or do you not care? … when I’m starting to get it under control, I have a tendency to think that now I deserve a treat’ (Participant 12, male, age group 50–54).
In this way, finding living with diabetes challenging led to a feeling of having lost control of their lives, to personal conflicts and thus, a sense of incapacity.
Suboptimal glycaemic control leads to a range of negative emotions:
‘When you’ve not improved over a period of time, I wonder what they [HPs] might be thinking: can you not control it? It’s your life and we’re helping you’ (Participant 12, male, age group 50–54).
Thus, suboptimal glycaemic control gives the HPs (and the person with diabetes) the impression that the person with diabetes is “non-adherent”, “not working hard enough”, and this notion of insufficient adherence leads to feelings of embarrassment and consequently loss of self-respect:
‘I'm embarrassed and worried. I do know that the nurses just say: “Well, we must improve on that”… but as a grown-up man, it really can’t be true that I’m not in control of my own life. After all, one should be a role model to the children. That’s how I feel – you lose your pride’ (Participant 12, male, age group 50–54).
In this way, facing HPs was experienced as humiliating, resulting in thoughts of cancelling appointments:
‘Even though I turn up, it’s sometimes difficult to give an answer as to why the figures [blood glucose] are high, because when you’re writing your diary, but I may not write that down in any great detail: it’s almost like making a confession – like a young child at school with the teachers’ (Participant 12, male, age group 50–54).
Such feelings caused an imbalance between persons with diabetes and HPs that reinforced the feeling of powerlessness.
Give me back my life
Following the diet was difficult regardless of symptoms due to high blood glucose. One participant said:
‘Then we’re going out for soft ice and the children have a large one and I’m having a small one. Well, it’s true of course that it tastes just as nice; after all, it’s not the size that determines whether you think it’s tasty or not ... but I feel it afterwards, as I get such a headache – my blood sugar is too high and I find that really irritating; it hampers me.’ (Participant 7, female, age group 45-49)
Eating like they used to before the diabetes diagnosis was central to their experience of enjoyment and their sense of control of their own lives. Consequently, the diagnosis influenced the participants’ quality of life.
Another characteristic of participants in this group was that relatives were crucial to diet management. As one expressed:
‘During Easter, we were having liquorice Easter eggs and when I had had four, my youngest said ‟Mum, you’re not having any more” and then he moved the bowl … because he knows that I find it difficult to stop. I find that bloody annoying, because I might have liked to have number five ... but my blood sugar had probably already risen dramatically after I’d eaten the third one.’ (Participant 7, female, age group 45–49)
When interference from family was not appreciated, it exacerbated the feeling of losing control and loss of autonomy. In general, the families were co-responsible for managing diabetes in either a negative or positive way for the participants.
Overall, we found that diabetes had a pervasive influence on the participants’ daily lives and caused inner conflicts due to disharmony between desire and diet recommendations that were considered to be restrictions. For this group of participants, the management of diabetes was characterised by powerlessness resulting in lack of control over their living conditions, reflecting that their autonomy was threatened due to their diagnosis of diabetes.
Facilitating participation for people expressing powerlessness
For participants whose dominant archetypal characteristic is powerlessness, we found that the approach to facilitate participation in preventive initiatives required personal encouragement:
‘My GP will probably tell me, if I should participate’ (Participant 4, male, age group 45–49).
In accordance with the findings illustrated in our model, we suggest that taking action for this group – for instance by automated systematic electronic pre-booking in terms of providing a scheduled time for the screening examination in the screening invitation or if their GPs recommended participation and booked on their behalf – would increase the likelihood of participation due to their reactive approach to diabetes self-care.
The findings showed that this group of participants expressed a sense of empowerment in how they handled living with T2D. Their experiences were predominately cognitively controlled but they took a reactive approach to self-care, particularly in relation to diet and exercise recommendations.
The participants were quite lenient on themselves, if their tests showed high blood glucose levels:
‘It’s bloody annoying...but there’ll be ups and downs when you have diabetes. At one appointment, the figures look fine and then at the next, it’s just been Christmas and then the figures are too high; I think you just have to accept it’ (Participant 6, male, age group 40–44).
With this management approach, the participants re-established control over their lives and they managed to maintain this attitude even if they were aware of potential complications due to diabetes:
‘I sell diabetes lottery tickets and on these, I provide information on the complications of diabetes. Cancer may well be a cruel disease, but diabetes can be just as vicious, and while cancer is one disease, diabetes is six or seven diseases, affecting the eyes, ears, nose, lungs, stomach, intestines and stents for one thing and another’ (Participant 9, male, age group 55–60).
Thus, knowledge per se does not necessarily promote disease management.
Learning to live with T2D
This lax attitude was also reflected in their perceptions of diabetes and disease management. One participant said:
‘You don’t have to be more ill than other people just because you have diabetes … you probably shouldn’t be thinking too much about it, because then it becomes an even greater problem than it is. Obviously, you have to think about what you eat, how much and things like that, but still you must concentrate on living every day’ (Participant 6, male, age group 40–44).
Participants expressing such attitudes followed diet recommendations as and when they could without getting a guilty conscience, a strategy they used to prevent diabetes from controlling their lives.
Overall, for these participants, management of diabetes was characterised by empowerment in terms of cognitive reflections, based on insights and understanding of the disease that did not necessarily result in following all recommendations. This approach to diabetes management was acceptable to them, relying on
‘I try to follow it the best I can’ (Participant 9, male, age group 55–60).
In this way, they re-established control over their lives and their autonomy after having the diabetes diagnosis. Moreover, this approach prevented the potential distress of not following the recommendations fully.
Facilitating participation for people expressing empowerment
We suggest that a written invitation will encourage participation in preventive initiatives for this type of individual. A pre-booked time might further increase the likelihood of participation due to their reactive behaviour.
This group of participants demonstrated health literacy by their personal and cognitive competences in relation to motivation and actions that were health-promoting in terms of all parameters of living with T2D.
They faced realities and acted on the basis of these realities:
‘I thought, you’ll need to make your own treatment plan .... food, exercise, music and massage. I simply created a programme where I walked more and more every day and I weighed one kilo of vegetables which I ate as the day progressed’ (Participant 8, female, age group 55–60).
Similarly, participant 10 said:
‘I quickly realised that it was all about getting control of it [diabetes] ... it’s up to you to take charge, that’s all there is to it.’ (Participant 10, male, age group 55–60)
In this way, they experienced being in control, which also occurred by their re-established self-perceptions:
‘When I started walking at the fjord, then I thought that I’d recovered’ (Participant 8, female, age group 55–60).
Thereby, they maintained their identity.
Several strategies were used to facilitate diabetes self-care, e.g. knowledge and involvement:
‘I think that we work it out together – it’s a partnership’ (Participant 8, female, age group 55–60).
In this way, shared decision-making produced the sense of maintaining autonomy. Moreover, they were aware whose advice to seek on managing diabetes:
‘I know people with diabetes and some of them I wouldn’t dream of copying, because I don’t think that they’re looking after themselves very well … but I know one person I need to have a chat with’ (Participant 10, male, age group 55–60).
Diabetes check-ups were also significant for maintaining optimal self-care:
‘It’s a wake-up call for me. If the figures are high – oops – you’ve been lazy and will have to pull your socks up’ (Participant 11, male, age group 55–60).
However, at festive occasions, some preferred getting the same food as the other guests instead of sticking to the recommended diet:
‘I want the same food as the others. They’ve got that now, so they treat me as if I didn’t have it. That suits me best’ (Participant 11, male, age group 55–60).
In this way, not being perceived as a disease in social contexts was favoured over optimal diabetes self-care behaviours, but that decision came without a guilty conscience.
Overall, this group of participants managed their diabetes with critical reflection and by being proactive. Thereby, their autonomy remained intact, and being perceived as a person and not an illness was important.
Facilitating attendance for people expressing health literacy
We suggest that participants displaying the archetypal characteristic of health literacy would be likely to respond to written invitations that offer self-booking in accordance with our model.
We found that this group of participants was determined to manage their T2D. However, to experience management worthwhile, they needed acknowledgement for their efforts from family members and HPs:
‘I’ve got the same feeling every time, I want to achieve a good result [blood sugar values]; I feel it’s like sitting an exam’ (Participant 16, male, age group 45–49).
In this way, presenting acceptable glucose levels confirmed having been sufficiently “adherent” and thereby “good”. Moreover, being seen by the HPs was considered valuable:
‘She [GP] tailors her advice to me ... she knows me and is aware of the issues that I have with the various things’ (Participant 17, female, age group 40–44).
Diabetes affected the entire family, and the family members reacted in a supportive way:
‘My son’s looking after his mother; he’s taken it onboard ... if he’s shopping, he won’t buy white rice or ordinary pasta ... and he’s also the one who’s saying ‟oh, you know we shouldn’t get that” if I feel like buying something unhealthy’ (Participant 17, female, age group 40–44).
In this way, family members accepted being co-responsible for the diabetes management.
Being diagnosed with diabetes threatened their identity, but they were able to overcome it by seeing themselves as a person rather than a disease. However, diabetes continued to have a strong presence in their daily lives in different ways:
‘It’s diabetes that’s setting the rules and then you’ll have to get everything else to fit in around living with diabetes ... it’s diabetes deciding the agenda when I’m shopping in the refrigerated section and at the fruit and veg … If I didn’t have diabetes, I’m also not sure that I’d be using my bike quite as much’ (Participant 16, male, age group 45–49).
The same goes for thoughts about complications. Although, facing diabetes complications was stressful, it could also be a motivating factor for self-care:
‘If you look around the waiting area, you almost feel like leaving straight away, because there are some people where it’s very obvious that they’ve not been in control of things, and it’s food for thought: I really don't want to end up like that … you really have to take it seriously, because otherwise it’ll come back to bite you. The complications of diabetes are like dark clouds hanging over you, if you’re not careful’ (Participant 16, male, age group 45–49).
By accepting the diagnosis and relying upon managing diabetes properly to prevent complications, they re-established control over their lives after having the diagnosis.
Overall, this group of participants demonstrated self-efficacy, reflecting their belief in own resources and ability to manage life with diabetes.
Facilitating participation for people expressing self-efficacy
As these participants belong to the emotional part of the model, we suggest that personal encouragement by HPs may increase the likelihood of participation.
Selecting invitation strategy according to archetypal characteristic
We performed an additional analysis and found that by comparing the positions of the participants in the model and socioeconomic variables like education and being outside the labour market, it seemed possible to identify the majority of individuals who needed attention prior to being invited to participate in preventive initiatives (Figure 3). In Figure 3, the numbers correspond to the participants’ numbers in Table 1, whereas compulsory education and being outside the labour market are indicated by the colours of the “individuals” in the model.