The Development of the Disease Identity Questionnaire and its Application to Diabetes


Diabetes changes people’s lives in countless ways.  Whether it is deciding what to eat for dinner, choosing the best course for treatment, or grappling with serious complications, the individual’s life is permanently altered.  Disruption of self-concept, self-esteem, and world-view are only a few of the challenges people with chronic illnesses face (White, Richter, & Fry, 1992).  Considering the profound effects of chronic illness, it is important to learn how people think and feel about themselves in terms of their illness. 

The body of research on diabetes from a psychological perspective is quite broad, with contributions from many different schools of thought.  For this reason, the literature review has been broken down into the categories based on personality issues, identity issues and health issues.  However, this discussion will begin with a brief explanation of diabetes itself.


The Nature of Diabetes

Diabetes is a disorder of the endocrine system in which blood glucose levels, normally controlled by the hormone insulin, become out of control (Reed, 1998).  Insulin is necessary for glucose from sugars and starches in food to leave the bloodstream and enter the body’s cells where it is burned to produce energy.  Thus, blood glucose levels rise and cells are deprived of glucose and energy without insulin. 

In Type I diabetes, also know as insulin-dependent or juvenile-onset, an autoimmune response has destroyed the cells that normally produce insulin.  Insulin must be injected (through a syringe or an internal pump) at least daily and blood glucose levels must be measured regularly (by drawing blood and applying it to a glucose meter).  Patients must also maintain a careful diet and exercise regimen to promote good control of blood glucose and prevent complications. 

Type II diabetes is much more common and is often referred to as non-insulin dependent or adult-onset diabetes.  In this form, insulin is produced, but the body’s cells are resisting it and not responding properly.  This lack of response may cause the pancreas to stop producing sufficient insulin.  Treatment usually involves a diet and exercise regimen, and often tablets are prescribed.  Type II diabetes may also require insulin treatment if the initial attempts are not sufficient.  Table 1 highlights the differences between Type I and Type II diabetes.

Table 1

Primary differences between Type I and Type II diabetes



Type I Diabetes

Type II Diabetes


"Juvenile-onset" or "Insulin-dependent"

"Adult-onset" or "Non-insulin-dependent"


Rapid onset

Develops slowly


Usually younger than 20 years old

Usually older than 40 years old



Often overweight


Autoimmune response

Insulin resistance


Insulin injections and a diet regimen

Diet and exercise regimen



Tablets are often required



In some cases, insulin is also needed


With either form, if blood glucose becomes too low, hypoglycemia results.  In this situation, cells are starved of glucose and need energy.  Dizziness, sweating, and shaking are early signs, but if the condition is not treated immediately, convulsions and a state of unconsciousness can result.  If blood glucose becomes too high, hyperglycemia can occur.  Excess glucose draws out extra water and the person becomes dehydrated.  Without insulin, cells burn fats for energy, and this produces ketones.  Ketones can build up in the bloodstream and become toxic, causing vomiting, drowsiness, or even coma.

The American Diabetes Association estimates that 15.7 million people or 6% of the population in the United States have a type of diabetes (ADA, 2000).  However, only 10.3 million of these cases have been diagnosed.  Of the total number of cases, only 5 to 10% are made up of Type I diabetes, while the vast majority of patients have Type II.  Type II diabetes has reached epidemic proportions worldwide and rates continue to rise.  The African American and Latino communities are at a greater risk of developing Type II, while Type I remains more prevalent among whites.  Diabetes is the seventh leading cause of death in the United States, and its costs include billions of dollars annually for health care treatments and lost productivity.

Most individuals with diabetes are eventually affected by long-term complications to some degree.  Diabetes can damage the eyes, kidneys, and heart.  Most of the complications are caused by damaged blood vessels.  Blindness, neuropathy, impotence, amputation of the feet, kidney failure, and atherosclerosis are all potential complications.  While good control of blood glucose levels can help delay or prevent many of these problems, it is very difficult to achieve this goal.  Though health care professionals are instrumental in creating a treatment plan, ultimately it is the individual who bears the burden of treatment in order to avoid serious complications.  These physiological issues can result in emotional distress for patients as they struggle to accept the radical changes that a diagnosis of diabetes requires, and then maintain these changes conceivably for the rest of their lives (Beeney, Bakry, & Dunn, 1996). 

Much of the current psychological research on diabetes focuses on determining factors that can predict better adherence to treatment regimens, better metabolic control, and overall positive outcomes.  One of the goals of the current study is to discover whether disease identity and other related factors have a positive impact on both objective and subjective measures of diabetic well being.


The Personality Perspective

            Many personality factors have been proposed to affect diabetic adherence to the treatment regimen and metabolic control.  Several studies have established a link between anxiety (Turkat, 1982), impatience and anger (Peyrot & McMurray, 1985), characteristic type A behavior (Suls & Sanders, 1989) and poor diabetic control.

            Another factor related to adherence is internal locus of control, or the belief that one has control over successes and failures.  Past research has found an internal locus of control to be predictive of other health behaviors, such as smoking cessation, and work like that of Jacobson et al. (1987) has established the connection for diabetic treatment compliance. 

            Perceived self-efficacy is a measure somewhat related to locus of control.  Self-efficacy is a person’s belief that he or she can do what is needed to successfully influence his or her situation.  This construct has been linked to better diabetic control in a number of studies, such as that of Kavanagh, Gooley, and Wilson (1993).

            Edwards (1998) recently used the Five-Factor Model to determine possible connections to diabetic control.  The dimensions in this model are neuroticism, extraversion, openness to experience, conscientiousness, and agreeableness.  However, only conscientiousness was found to be predictive of adherence.

The Health Perspective

            Several studies have drawn a connection between coping strategies and better adherence to diabetes treatment.  Delamater, Kurtz, Bubb, White, and Santiago (1987) compared level of control to adolescents’ coping strategies and found that the patients who had poor metabolic control were more likely to use passive and avoidant coping mechanisms such as wishful thinking.  In another study, the more participants used problem-solving, active, approach coping strategies, the better their adherence to diet regimens (Reid et al., 1994).

            The theory of illness representations asserts that people socially construct common sense models that express their thoughts, beliefs, and feelings about diseases that they may or may not have experienced.  The basic attributes of illness representations are symptoms, labels, causes, timelines, consequences and controllability (Levanthal & Diefenbach, 1991).  These representations have serious implications for people’s mental and behavioral responses to illness.  Sarah E. Hampton (1997) has articulated the significance and pitfalls of illness representations for people with diabetes.  Specifically, symptom experience is not typically related to physiological needs, beliefs about initial cause are not related to daily treatment, the timeline and consequences are understood to be grim and indefinite because there is no cure, and treatment is therefore focused on management rather than on a cure.  Diabetes highlights the limitations of illness representations.  It is an extremely difficult disease to conceptualize, which poses a problem for patients trying to understand and cope with their illness.

Social support has been shown to help mediate the emotional stress, confusion, and overall negative experiences with diabetes.  Social support involves intimacy, nurturance, reassurance, and informational aid (White et al., 1992).  La Greca, et al. (1995) compared social support provided by family and friends of adolescents with diabetes and found that these support systems operated in different domains.  While family members were helpful in supporting daily maintenance behaviors, friends provided more emotional support.  These researchers have suggested including families and peers in the education process in order to enhance this network of support.  Other studies advocate forming groups to provide consistent education as well as emotional support for patients and their families (McKelvey & Borgersen, 1990).  Thus, social support can also come in the form of support groups of similar peers.

In recent years, support groups in which people with the same disease discuss their common experiences have become much more prevalent (Jacobs & Goodman, 1989).  Recent work by Davison and Pennebaker (1997) has indicated that people are increasingly joining online support groups through the Internet.  Both types of support groups allow individuals to seek and give advice and support to others who are more familiar with their situation.  Studies have shown that participation in support groups is most helpful when used in conjunction with, and not as a substitute for medical treatment (Gilden, et al., 1992).  However, investigations of the effects of support groups have been inconclusive in determining their potential benefits.  Boey (1999) demonstrated that a general social network was more beneficial than diabetic-specific support in mediating symptoms of depression.  Other research found that a structured support group helped elderly people with diabetes maintain better physiological measures initially, but after 48 weeks, the participants were no different from the control group (Robison, 1993).  Obviously, more research is needed to help elucidate the effects of participation in illness support groups.


The Identity Perspective

            Society as a whole has trouble understanding chronic illnesses.  Individuals with diabetes face the challenge of stigmatization and social rejection.  Physical illness can be viewed as a difference from the norm, and this leads to the negative conceptualization of illness as deviance.  Research has shown that factors including the severity of the illness and perceived behavioral causality led to greater social distance and rejection (Crandall & Moriarty, 1995).  Depending on one’s concept of diabetes, the illness can fulfill either or both of these factors.  Both forms can be life-threatening and Type II diabetes is often caused by a sedentary lifestyle, which is under the individual’s control. 

            One of the more insidious effects of society’s fear of severe illness is an increasing alienation of the patient from his or her own body (Scheper-Hughes & Lock, 1991).  Patients may feel disconnected from their bodies as they react to the public perceptions of illness as deviance.  This is particularly harmful for people with diabetes who must pay strict attention to their physical responses.

            One line of research that has had a large impact on the current study is on stigmatized social identity.  Seagal has focused on stigmatized identities and found that knowledge of group membership is not sufficient to understand any individual’s particular experience (Seagal, 2000).  To demonstrate this point, Seagal created and validated the Social Identity Profile (SIP) to look at the way people think and feel about being members of a socially stigmatized group.  Being highly identified correlates with the positive outcomes of fewer symptoms and better college adjustment.  Though Seagal’s research has used race, gender, religion, and sexual orientation, one of the goals of the present study is to determine whether her findings extend to identities based on chronic illness.  The SIP will be described in greater detail later on in this discussion.

            A line of investigation involving identity and physical health by Cole and his colleagues showed that people who are more open about their identities may have better physical health.  They illustrated this theory by comparing the health of homosexual men who are “out” to those who are “closeted.”  This research showed better health among the men who were more open about their sexual orientation (Cole et al., 1996). 

            Thaigarajan (1998) showed that acceptance of diabetes as a fact of life had a positive effect on quality of life but did not affect metabolic control.  Other researchers predict health improvements if patients are able to acknowledge and show understanding of their illness (Davison & Pennebaker, 1996).  These ideas suggest that people who can incorporate their illness into their self-concept will be better off mentally and physically.  In addition, studies by Turnbull, Miller, and McFarland (1990) support the notion that distinctive attributes compared to the population often become central components of self-image.  They also reported that the perception of a shared identity creates bonds between people, and this can result in a greater sense of community within the group.  Whether individuals with diabetes agree with these theories remains to be seen. 


The Development of the Disease Identity Questionnaire

            The present investigation combines the influences of personality, health, and identity studies to determine what impact, if any, diabetes has on the individual’s identity.  Does the disease become incorporated into the sense of self, or do people consider it to be something that affects their lives, but is not really part of them?  The primary goal of this research was to learn if and how people with diabetes integrate the illness into their personal identities.  A secondary goal was to determine whether higher disease identification correlated with positive mental and physiological outcomes including higher self-esteem, better treatment adherence, and better metabolic control.

            The term “disease identity” has been used to describe people’s concept of their disease in relation to their self-identity.  In order to explore disease identity, the Social Identity Profile and Disease Identity Questionnaire were used to compare and differentiate the thoughts and feelings of participants based on the type of diabetes they have and whether or not they have participated in an illness support group.  A description of both the DIQ and the SIP follows.

            The DIQ focuses on items that reflect the level of integration of diabetes into the person’s self-identity and the overall function of diabetes in the person’s life.  The measure also asks questions on previously ignored topics like disclosure and support group participation.  Participants give scores of one to seven to signify the intensity of their responses to questions such as: “To what degree do you think of yourself as a person with diabetes?,” “How important is it that your friends know about your diabetes?,”  “How important is it for you to get on with life and forget about your diabetes?,” and “How much impact do you think participating in a support group for people with diabetes would have on your life?” 

            The next component of the DIQ asks participants to rate their identification with certain labels describing their personal feelings about diabetes.  These labels include: “a person who used to have diabetes,” “a diabetes victim,” “a person living with diabetes,” “a diabetes survivor,” and “a healthy person – diabetes is not relevant.”  The results may be different if participants interpret the labels within different spans of time.   For example, within a decade or a year, a person may identify with all of the labels, whereas if people were judging their feelings at the moment, their identification might be different.  Two different time frames, “right now” and “over the entire course of your illness” will be specified on the survey to prevent confusion.  The entire DIQ is provided in Appendix A.

            The purpose of the Social Identity Profile is to measure four factors involved in social identity. These factors include centrality (the importance the person places on the identity), internal regard (how the person feels about the identity), external regard (how the person thinks the group is treated by society), and sense of belonging (how involved the person is in the community with others who have the same identity) (Seagal, 2000).  Sample statements to illustrating these four factors, respectively, include “I often think about being a person with diabetes,” “I wish I were not a person with diabetes,” “Others tend to treat people with diabetes fairly,” and “I fit in well with other people with diabetes.”  Participants signify their agreement or disagreement with each statement on a scale of one to seven.  Mean scores can be calculated for each subscale making this an efficient and informative measure.  The SIP is provided in Appendix B.

            In this study, the DIQ and SIP were used to highlight the differences in participants’ illness experiences depending on the type of diabetes they have and whether or not they participated in an illness support group.  It was expected that because of the earlier age of diagnosis, the more invasive treatment, and the more serious consequences, participants with Type I diabetes would rate disease identity and the four subscales of the Social Identity Profile higher than participants with Type II diabetes.  We also predicted that talking about problems and being around other people with diabetes in a support group would intensify disease identity, so higher ratings were anticipated from those who had participated in support groups compared to those who had not.  The secondary hypotheses focused on the correlations between higher disease identification and mental and physical outcomes.  We expected higher identification to correlate with higher self-esteem, better treatment adherence, and better metabolic control.