In this study, we examined people’s experiences of living with T2D to understand how to improve the uptake of initiatives targeting the prevention of CVD. We found that the experiences of living with T2D fell along two continuums from an emotional to a cognitive expression and from reactive to proactive disease management. Where the vertical and the horizontal continuums intersected, we identified four archetypal characteristics: (I) powerlessness, (II) empowerment, (III) health literacy, and (IV) self-efficacy. Taking these into account seemed important for facilitating participation in CVD preventive initiatives.
We found that the participants expressed one of four dominant archetypal characteristics and their experiences of living with T2D varied enormously both psychologically and in terms of their behaviour. Participants whose dominant archetypal characteristic was powerlessness tended to express quite negative emotions and attitudes as well as the feeling of having lost the vast majority of the control that they used to have of their lives. Overall, they experienced T2D as a threat to their existence and self-esteem. A feeling that influenced their ability to undertake disease self-care and thereby affected their behaviour. In contrast, participants whose dominant archetypal characteristic was self-efficacy expressed positive emotions and attitudes as well as the feeling of being in control of their lives despite their diabetes diagnosis. They believed in their own capacity and skills to live life with T2D, while they needed support and encouragement to manage their disease. As such, we found that the psychological aspects were central to their experience of living with T2D. By contrast, participants whose dominant archetypal characteristic was either empowerment or health literacy expressed a more cognitive attitude towards diabetes self-care. While participants whose dominant archetypal characteristic was health literacy demonstrated health-promoting disease management interpreted in terms of all parameters of living with T2D, the participants for whom empowerment was the dominant characteristic demonstrated that knowledge per see does not prevent individuals from taking a reactive approach to disease management in some parameters. The common denominator for these two types of participants was that they took a cognitive approach to living with T2D, they felt in control of their lives regardless of having diabetes and believed in their own capacity to live life with T2D. Our findings of these diverse experiences of living with diabetes are supported by a recent review by Stuckey and Peyrot [
24].
Powerlessness
For the group of participants expressing powerlessness, we found personal encouragement to be important for them to accept an invitation to a preventive initiative. Thus, to achieve an acceptable uptake, it is important to collaborate with HPs within diabetes care. Broholm-Joergensen et al. [
25] found that GPs’ strategies for retaining individuals in preventive health check programmes constituted a balancing act between trust and power in terms of respect for the individual’s autonomy. Similarly, we found that being seen by HPs for individualised recommendations was important for the participants in the emotional part of the model to facilitate self-care and accepting preventive initiatives.
We think that experiencing feelings of powerlessness could lead to non-participation in preventive initiatives. Similarly, Kibbey et al. [
26] found that disempowerment was related to non-participation among people with type 1 diabetes aged 18–30. To facilitate participation in preventive initiatives among people expressing powerlessness, awareness of diabetes-related distress seems crucial. In a systematic review and meta-analysis, Perrin et al. [
27] found that diabetes-specific emotional distress (DSD) was prevalent in 36% of people with T2D. DSD refers to psychological distress specific to living with diabetes encompassing a variety of emotions, such as feeling overwhelmed by the demands of self-management, worrying and ruminating about complications, and/or harbouring feelings of guilt or shame, particularly in relation to lifestyle [
28,
29]. We found that these feelings were present when our participants expressed powerlessness. This may explain why we found that these participants seemed stuck feeling powerless. Moreover, DSD negatively affects diabetes through reduced self-care [
30,
31]. Furthermore, a review by Schram et al. [
32] showed that persons with depressive symptoms had a much lower quality of life due to diabetes, and conclusively the authors suggested to screen individuals for depression in diabetes care settings. This is supported by Perrin et al. [
33] who found that DSD can be reduced significantly. By reducing DSD and thereby fostering self-care among persons expressing powerlessness, participation in preventive initiatives may also increase, particularly if this group of individuals are invited in accordance with our model, namely by personal encouragement and offering pre-booked appointments.
Empowerment
Participants with this archetypal characteristic expressed empowerment by taking a cognitive approach, and found motivation and capacity to take control of their disease. Regardless of our interpretation that they are reactive in managing their disease, we found that they were motivated for self-care; they relied on doing what they were capable of in relation to diabetes self-care. Through empowerment, they re-established their autonomy. In interviews with persons with T2D, Boyle et al. [
34] found that regardless of being made aware of preventive recommendations, some people decided not to follow them all. Similarly, our findings indicated that knowledge per se does not necessarily promote disease management, even though the participants understood the possible consequences of their decisions. In this way, they acted in accordance with their archetypal characteristic of empowerment [
35].
The basis of empowerment is the capacity to think critically and make informed decisions [
35]. However, it is questionable whether an invitation would capture the invitees’ attention. Boyle et al. [
34] found that persons with T2D reported that they received too much written materials that they did not necessarily read. Therefore, efforts to design an eye-catching invitation would be a prerequisite for ensuring an informed decision and increasing the uptake of preventive initiatives. Additionally, pre-booked appointments may encourage this group of individuals to participate due to their reactive approach to diabetes self-care.
Health literacy
Individuals who are characterised by being health literate take a cognitive and proactive approach to their diabetes self-care. We found that it was imperative for this type of individual to be in control of their lives and involved in treatment decisions, thus maintaining their autonomy. Similarly, Broholm-Joergensen et al. [
25] found that GPs showed respect for their patients’ autonomy and the mutual exchange of views was used as a strategy for keeping them in preventive health check programmes. This could be achieved by sharing in the decision-making process which supports the individual’s decision-making based on informed preferences in collaboration with their HPs. Shared decision-making allows the individual and HPs to be experts and to select treatments that take into consideration the individual’s preferences, values and personal contexts, such as job situations and previous unpleasant experiences of hypoglycaemia [
36].
Based on our model, this type of individual seemed the most likely to participate in preventive initiatives. Fisher et al. [
37] found that higher education and shorter duration of T2D predicted better recruitment in the non-interventional arm in a randomised trial for facilitating recruitment and retention in clinical trials. We found a similar tendency but with variation in both durations of T2D and education as the job itself also played an important role.
Self-efficacy
For participants whose dominant archetypal characteristic was self-efficacy, their diabetes self-care gave rise to emotions, regardless of whether they displayed proactive behaviour. Despite their emotions, these individuals believed in their own capability to control diabetes. However, we also found that being seen as an individual by HPs was of importance for their diabetes self-care. Nicolucci et al. [
38] found in a multi-country survey among 8596 persons with diabetes (84% had T2D; aged 48–65) that 85.5% reported that their HPs were supportive. However, the survey also indicated insufficient attention to the psychological aspects of living with diabetes, as only 23.7% of the respondents reported that the HPs had asked how diabetes impacted their lives. In addition, Kibbey et al. [
26] found that lack of recognition as an individual engaging with diabetes care could cause non-participation in diabetes check-ups. Furthermore, studies have found that individuals with low self-efficacy were less likely to participate in general health checks offered by GPs [
39,
40]. By contrast, in a cross-sectional analysis of participation in a study aimed to prevent T2D, CVD and chronic obstructive pulmonary disease, Larsen et al. [
41] found that lower self-efficacy was associated with a higher likelihood of getting health checks. We found that self-efficacy per se did not necessarily facilitate participation according to our model, as personal encouragement is also needed.
According to the social cognitive theory, self-efficacy includes confidence in employing the skills necessary to resist temptations, cope with stress and mobilise the resources required to meet situational demands [
42]. In terms of having general self-efficacy [
42], this type of individual would be capable of making an informed decision as to whether or not to participate when invited for preventive initiatives. However, we found that this type of individual valued personal relations in their diabetes self-care. Therefore, in accordance with our model, we suggest that personalised encouragement would facilitate participation in future preventive initiatives.
Improving the basis for increasing participation in preventive initiatives
In the DIACAVAS pilot study, the invitation strategy was to send the invitation to a digital mailbox provided by the Danish public authorities without a pre-booked appointment [
2]. This digital invitation was chosen as it is an easy and well-known strategy to reach the majority of the Danish population in a safe, secure and inexpensive way [
43]. However, 8.2% of the Danish population does not receive digital post due to, for example, language difficulties and disabilities [
43]. Hence, invitees without digital mailboxes received the invitation by standard physical post. However, this invitation strategy might have been a contributing factor to the low uptake in DIACAVAS. Larsen et al. [
44] found that among those treated for diabetes, CVD or chronic obstructive pulmonary disease, recruitment by digital invitations was lower (Incidence rate ratio: 1.02; 95% CI 1.00–1.04). Norman et al. [
45] found that among those offered a pre-booked appointment for a health check within general practice, the uptake doubled compared to those offered an open invitation (59.2 vs. 26.5%).
A theory-based communication strategy (the AASAP – Anticipate, Acknowledge, Standardise, Accept, Plan) proved to be effective in increasing recruitment and retention of individuals with T2D in a clinical trial [
37]. The AASAP approach involves verbalising and normalising individuals’ concerns in a non-judgmental way, enabling them to come to their own realistic decisions about what is best for them and their diabetes [
37]. This confirms our finding that it is important to involve HPs in future preventive initiatives in order to facilitate participation. Similarly, a review suggested that involving GPs might facilitate screening efficiency and uptake [
46]. The AASAP approach may also reduce the likelihood that individuals with T2D experience diabetes-related stigma when HPs discuss the potential relevance of participating in preventive initiatives. Browne et al. [
47] found in an interview study among individuals with T2D that experiencing stigma had psychological and behavioural consequences on self-efficacy and self-care. Moreover, experiencing judgmental attitudes from HPs also resulted in subsequently refraining from seeking advice from HPs [
47]. Therefore, involving HPs in recruiting people with T2D in CVD preventive initiatives might not necessarily facilitate participation.
Besides facilitating participation when sending out invitations to preventive initiatives in accordance with our model, this invitation approach may also help invitees making an informed decision on whether or not to participate. Dahl et al. [
48] found it doubtful that women’s decision not to participate in cardiovascular screening was based on an informed decision. In addition, these non-participating women did not discuss their invitation with their HPs. This underlines the fact that HPs may need to take the initiative to discuss invitations to preventive initiatives.
We found that different invitation approaches are appropriate to facilitate participation in future preventive initiatives. Interventions to improve the uptake in screening and health checks generally have received considerable attention over the last few decades. In a review from 2000, it was concluded that pre-booked appointments and invitations by telephone were likely to be effective in increasing the uptake in screening for mainly cancer, but some studies show the same applies to screening for hypertension and dyslipidaemia and one study concluded it also applied to diabetes [
49]. A recent systematic review from 2020 by Bunten and co-workers reviewing invitation methods and the impact of interventions used in NHS health checks supports this notion. They found that written invitations were less effective than telephone or opportunistic face-to-face invitations [
50]. The authors concluded that further research would be needed to examine how to enhance existing invitation methods to facilitate the uptake by taking into account especially ethnicity and gender. However, these reviews did not provide any effective strategies to improve the uptake in relation to people with diabetes. Similarly, a recent systematic review of recruitment strategies in diabetes prevention programmes concluded that it was difficult to distinguish any trends in relation to recruitment methods and uptake [
51]. Our study contributes with new understanding as to the reasons why tailored invitation strategies are required and suggests ways of tailoring invitations. Likewise, in a recent review on barriers and facilitators to participation in health checks for cardiometabolic diseases offered by GPs, the authors emphasised that it is impossible to develop a one-fits-all invitation strategy [
52]. Patient and public involvement (PPI) is a recommended approach to design attractive healthcare services [
53] and may also be useful in identifying outcomes of preventive initiatives which are relevant to the invitees. In a recent review incorporating both qualitative and quantitative studies, Gorst et al. [
54] found a discrepancy between patient-derived outcomes and those identified in a systematic review of clinical trials. This emphasises the importance of incorporating PPI in designing preventive initiatives to ensure that the initiatives are meaningful to the invitees in order to maximise the uptake. Alongside this interview study, we included PPI with the aim to design an attractive future initiative targeting the prevention of CVD. The findings will be presented in an upcoming article.
A tailored invitation in line with our recommendations necessitates information about the individual’s socio-economic status and experience of living with T2D. But it is not entirely straightforward for researchers or healthcare services to collect the information required for making a tailored invitation strategy. In Denmark, information on education and employment is not included in medical records, but it is readily available from the Integrated Database for Labour Market Research (IDA) [
55]. The challenge is to collect the required information on individuals’ experiences of living with T2D. Reviews have suggested to collect such information in diabetes care settings in connection with screening for DSD and depression [
27,
32,
56]. A useful tool could be the 17-item Diabetes Distress Scale, which is available in many languages [
57]. However, both emotional and cognitive dimensions are important in accordance with our model, and for evaluating these dimensions, the brief nine-item Illness Perception Questionnaire is very useful [
58]. Such information could also contribute to tailoring invitations to already implemented preventive initiatives and generally promote diabetes care.
In Denmark, psychometric instruments could be integrated in the national platform for people with diabetes and their GPs. In this way, general practices could help collecting the information required to make tailored invitations. This digital platform was developed as a collaborative project with representatives from the Danish Ministry of Health and Elderly Care and the Danish Organisation of General Practitioners. However, in order to email tailored invitations automatically, the information must be exported to a system that can customise invitations in accordance with national laws on handling personal and sensitive data, such as the web-based software platform Research Electronic Data Capture, REDCap® [
59].
Limitations and strengths
The strength of qualitative research is reaching a new understanding of a phenomenon, including suggestions for practice rather than achieving generalisability [
20], which requires testing the results in a randomised setup. Interestingly, the uptake in the DIACAVAS pilot study (41%) [
2] corresponds to the number of interviewees who would be likely to respond to the invitation strategy used in DIACAVAS (a written invitation with self-booking) in accordance with our model (35%). This supports our findings of the benefits of using a differentiated invitation strategy. However, our model of facilitating participation needs to be validated in randomised trials, before it may be used in future preventive screening services targeting the prevention of CVD. Additionally, the psychometric instrument for obtaining the required information for implementing a tailored invitation strategy in accordance with our model also needs to be validated.
We did not use validated psychometric instruments to measure the participants’ degrees of powerlessness, empowerment, health literacy and self-efficacy; this could have strengthened our interpretations of the empirical data. Whether it would have strengthened the applicability of our developed model needs further clarification.
This study provides an in-depth understanding of the motives behind disease management and of the importance of tailoring interventions to invitees’ needs and preferences. However, needs and preferences among people with T2D may be more nuanced and individual than conceptualised in the identified archetypal characteristics. Moreover, the suggestions for making tailored invitations to increase the uptake in preventive initiatives are based on our interpretations. Therefore, our findings should be considered preliminary and examined in further studies.
The study population consisted of twelve men and five women. This study explored experiences of living with T2D generally, rather than gender-specific differences. However, it would be interesting to explore possible gender differences, a potential area for future research.