Cognitive: illness beliefs

There is a vast literature on the beliefs that people with diabetes hold about their diabetes and treatment, and how these impact on their psychological health, self-care behavior and metabolic status. Similarly, there are numerous theoretical models that incorporate these beliefs, along with other concepts, in attempts to understand and predict the emotional and behavioral life of people with diabetes. This section focuses on two specific interrelated beliefs, beliefs about diabetes and beliefs about diabetes treatment. There some other broad belief domains that are possibly equally as important in influencing the physical and psycho-social health of people with diabetes, such as self-referent beliefs (e.g. self-esteem), capacity beliefs (self-efficacy), or control beliefs (e.g. locus of control) to highlight three main areas. These areas will not be covered here, either because they warrant a section of their own, (e.g. self-efficacy) and or the literature is too vast and divergent to provide a succinct and useful summary here.

Diabetes Beliefs

Two divergent lines of research have largely coalesced into a model that helps us think about how we structure our beliefs or thoughts about illnesses. From a Psychological background, Leventhal and colleagues developed the concept of ‘personal illness models’ [1], which has morphed into ‘illness representations’ in the modern psychology literature [2]. At the same time Kleiman, from a medical anthropology perspective developed the concept of ‘explanatory illness models’ [3]. Despite their different perspectives, they both came to see that illness beliefs are seen by people along four broad dimensions: its cause (what caused it ?); its identity (what is wrong with me ?, what signs and symptoms do I have ?); its timeline (how long will I have this for ?); and its consequences (how will this affect me?). Leventhal added treatment beliefs into his personal illness model framework , but we will deal with these separately.

In terms of an individual’s psychological well-being, there is little research on which to make robust statements, as the vast majority of the research has focused on trying to predict metabolic status, via self-care (medication taking, dietary choices, physical activity) behavior. However, given this, generally we see that the more consequences a person believes they will experience as a result of having diabetes, the more psychological distress they report. Although it should be noted that where it has been looked at, it is the more immediate perceived impact of diabetes on day to day life that impacts most on to well-being [4]. Beliefs about complications in the future are important, and are indeed a common worry for people with diabetes [5][6], but this concern does not seem to have as a strong an influence on well-being, as the perception of diabetes affects living life today.

Of course, once you have the complications, and they are interfering with daily life, then their impact on psychological health is obvious. But it is the belief about the impact they have, not necessary their presences that is important. This would seem to be the case for type 1 and type 2 diabetes, and regardless of the age group being considered. This impact of diabetes on day to day life is also where the identity related questions items are associated with psychological health. The more symptoms someone reports, and more health complaints they have, the poorer their psychological well-being. However, it should be noted that not everything symptom a person attributes to their diabetes is in fact related to their diabetes.

There would appear to be little data linking perceptions of the cause of diabetes to psychological outcomes, although this may be a function of a lack of focused work in this area to date. There is some anecdotal data, suggesting the type of attribution we make for our illness may effect who we go to see for care, and what types of self-care behavior we will engage in, but little of this work has been done in diabetes. When thinking about timeline perceptions, it is interesting to note ( and possibly surprising to clinicians) that people with diagnosed diabetes do not all agree that they will have the disease for the rest of their life. In a series of studies with adolescents with type 1 diabetes, between 10-15% did not agree with this statement, with a similar number of parents of kids with type 1 diabetes also not agreeing [7]. It is unclear whether this is related to the constant message that there is a cure round the corner, or whether it reflects some other underlying issue. Nearly a third of individuals recently diagnosed with type 2 diabetes also did not agree that they would have diabetes for the rest of their life [8].

In relation to self-care and metabolic outcomes, the consequence of diabetes is probably the area most investigated. Some researchers have focused on the perceptions of the severity of diabetes or the susceptibility to complications, with little consistent results. Others have assessed the perceived seriousness of diabetes with similarly inconsistency. This may reflect the fact that it is the interaction between seriousness and treatment beliefs that is important in predicting behavior. That is you need to belief something is serious and that the treatment will work for someone to invest time and energy in self-care. Few researchers have conducted this interaction analysis, but where it has been done it supports the synergistic nature of these two constructs to predict self-care [9].

Treatment Beliefs

We can extract several sets of treatment beliefs from the literature. More general beliefs, in that they are used in studies across disease conditions, are beliefs the difficulty, barriers to and costs of self-care. Unsurprisingly these show robust relationships with treatment behaviours, such that the more barriers, costs, burden etc. people report to following treatment recommendations, the less likely they are to do them. There is then the flip side of these, the perceived benefits of self-care behaviours, again these show consistent relationships with self-care, such that the more benefits, the more efficacious and action is seen to be, the more likely is that an individual will do the behaviour [10].

More recently Horne initiated specific research into medication beliefs, and identified two new dimensions to medication beliefs, one focused on how much the individuals beliefs that are dependent on their medications and another dimension that considers to what extent individuals consider medications to be harmful [11]. This work involved the development of the Beliefs about Medication Questionnaire, which assesses the respondents’ beliefs about the Necessity of a specific treatment and the second their Concerns about its potential adverse consequences [12]. At present, it is not possible to give a clear indication into how beliefs about the need for medications effect self-care as the qualitative work indicates that they may have complex relationships that evolve with time. Thus someone who feels dependent on medications for their health frequently reports being more likely to take their medications, but also may deliberately choose to not take their medications for periods, as they do not wish to be “addicted” or too dependent on them. However, those who are concerned about the harmful effects of prescribed medications, and their overuse by the medical profession are less likely to follow medication prescriptions.

There is also diabetes specific medication belief that has recently been highlighted as important in diabetes. This has been termed “psychological insulin resistance”. Researchers working internationally have identified a number of concerns people with type 2 diabetes have about insulin [13]. These include the perception that being on insulin means you have failed (to adhere to the diet), that with insulin your diabetes is worse, people are anxious about injections, it will make life more difficult and will make them more dependent on the health system, are some of the key beliefs in this construct. There is some indication from qualitative work that these anxieties may actually at least partly generated by health care professionals, who often use the threat of putting someone onto insulin to motivate them into following treatment recommendations. Using insulin as a threat can only justify and reaffirm patients fears. There are currently two tools in the published literature that have been used to assess, the more widely used Insulin Treatment Appraisal Scale (ITAS) [14]and the Barriers to Insulin Treatment Questionnaire (BITQ) [15].

This literature also shows that the more psychological insulin resistance a person reports, the more reluctant they are to start insulin, and might argue to delay initiating treatment, and suffer poor metabolic outcomes for sustained periods as a result. These tools have been shown to be effective in identifying peoples concerns about diabetes, and could help guide clinicians and educators discussions with clients, to facilitate the trial of insulin.


Thus over the past 30 years or so, the literature has identified a set of beliefs that people hold about their diabetes and its management, which seem to be reliable and robust predictors of self-care, well-being and diabetes outcomes. Patients ‘mental models’ of the disease and its treatment are relevant to include in clinical encounters and may explain patients’ coping behaviour. More recent work has focused on how we might constructively support clients testing the validity of their beliefs, and facilitate more accurate perceptions that may enable them to be more pro-active and positive in their diabetes management. There has been some limited success in this area [15, 16] and further research is clearly warranted.


  1. ^ Leventhal H, Meyer D, and Nerenz D (1980) The common sense representation of illness dangers. In S. Rachman (Ed). Contributions to Medical Psychology (Vol II, pp 7-30) New York: Pergamon Press.

  2. ^ Weinman, J., Petrie, K.J., Moss-Morris, R. and Horne, R. (1996). The Illness Perception Questionnaire: A new method for assessing the cognitive representations of illness. Psychology and Health, 11, 431–445.

  3. ^ Kleinman A (1978) Concepts and a model for the comparison of medical systems as cultrural systems. Social Science and Medicine 12,85-93.

  4. ^ Edgar K, Skinner TC. Illness Representations and Coping as Predictors of Emotional Well-Being in Adolescents with Type 1 Diabetes. Journal of Pediatric Psychology 2003; 28: 485-493.

  5. ^ Pouwer F, Skinner TC, Pibernik-Okanovic M, Beekman ATF, Cradock S, Szabo S, Metelko Z, Snoek FJ. Serious diabetes-specific emotional problems and depression in a Croatian-Dutch-English Survey from the European Depression in Diabetes [EDID] Research Consortium. Diabetes Research and Clinical Practice 2005; 70:166–173

  6. ^ F.J. Snoek, F. Pouwer, G.W. Welch, W.H. Polonsky, Diabetesrelated emotional distress in Dutch and U.S. diabetic patients: cross-cultural validity of the problem areas in diabetes scale, Diab. Care 23 (2000) 1305–1309.

  7. ^ Skinner TC, Howells L, Greene S, Edgar K, McEvilly A, Johansson A. Development, Reliability and Validity of the Diabetes Illness Representations Questionnaire: Four studies with Adolescents. Diabetic Medicine 2003; 20(4):283-289

  8. ^ Khunti K, Skinner TC, Heller S, Carey ME, Dallosso HM, Davies MJ, On behalf of the DESMOND Collaborative. Biomedical, lifestyle and psychosocial characteristics of the DESMOND collaborative: Baseline data from the DESMOND randomised controlled trial. Diabetic Medicine 2008; 25(12):1454-61.

  9. ^ Skinner TC, Carey ME, Cradock S, Daly H, Davies MJ, Doherty Y, Heller S, Khunti K, Oliver L, on behalf of the DESMOND Collaborative. Diabetes Education and Self-Management for Ongoing and Newly Diagnosed (DESMOND): Process Modelling of Pilot Study. Patient Education Counselling 2006; 64:369–377.

  10. ^ Brownlee-Duffeck M, Peterson L, Simonds JF, Goldstein D, Kilo C, Hoette S. The role of health beliefs in the regimen adherence and metabolic control of adolescents with diabetes mellitus. Journal of Consulting and Clinical Psychology 1987;55(2):139-44

  11. ^ Horne, R., & Weinman, J. (1999). Patients’ beliefs about prescribed medicines and their role in adherence to treatment in chronic physical illness. Journal of Psychosomatic Research, 47, 555–567.

  12. ^ Mann DM, Ponieman D, Leventhal H, Halm EA (2009) Predictors of adherence to diabetes medications: the role of disease and medication beliefs. Journal of Behavioural Medicine (2009) 32:278–284

  13. ^ Polonsky WH: Psychological insulin resistance in patients with type 2 diabetes. The scope of the problem. Diabetes Care 2005, 28:2543-2545

  14. ^ Snoek F, Skovlund SE and Frans Pouwer F. (2007) Development and validation of the insulin treatment appraisal scale (ITAS) in patients with type 2. Health and Quality of Life Outcomes, 5:69-76

  15. ^ Petrak F, Stridde E, Leverkus F, Crispin AA, Forst T, Pftzner A. (2007) Development and Validation of a New Measure to Evaluate Psychological Resistance to Insulin Treatment Diabetes Care 30:2199–2204.


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