Development of the Disease Identity Questionnaire
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. Considering the profound effects of chronic illness, I want to know how people think and feel about themselves in terms of their illness. 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 a part of them? The goal of my research is to learn if and how people with diabetes integrate it into their personal identities. I use the term "disease identity" to describe people's concepts of their disease in relation to their self-identities. In order to explore disease identity, I will adapt existing measures and create new surveys to learn from individuals with chronic illness.
Janel Segal, a graduate student in social psychology at the University of Texas, has developed and validated the Social Identity Profile (SIP) to examine stigmatized identities. In her work, she has focused on identities based on race, gender, ethnicity, religion, and sexual orientation. However, I believe that for individuals living with a chronic illness such as diabetes, that illness might be a salient part of their identities as well.
The SIP is composed of four subscales: centrality (how important the identity is to a person), internal regard (how people view themselves and others in their group), external regard (how people think outsiders view their group), and sense of belonging (how much a person feels like part of a community of people with the same identity). The SIP consists of twenty items that address these four subscales. Participants respond to statements by indicating their level of agreement on a scale from one to seven.
I will combine
the SIP with other measures related to disease identity. These
measures will include questions about support group participation, experiences
with medical professionals and seeking treatment, willingness to reveal the
illness to others, and the impact on family and friends. Another component
will ask participants to what degree they identify with different labels
including: a person who used to have an illness, a victim, a person living
with an illness, a survivor, or a healthy person.
All of these components will come together to make a Disease Identity
Once the DIQ has been created, I will administer it to a broad range of individuals who have diabetes. I hope to have some incentive to repay participants for their time so that my sample is not biased toward volunteers. All information will be kept confidential and anonymous.
Last spring I conducted a pilot study for this experiment. I used the SIP and some additional questions to find out whether people with diabetes who participate in support groups have different disease identity measurements when compared to those who do not participate. In that study, I found significantly different results for illness centrality and sense of belonging, with support group participants more highly identified than non-participants.
It is difficult to make hypotheses about what the DIQ may reveal about people with diabetes. I expect to see differences within the responses based on gender, age, type of diabetes, and support group participation. There may be correlations between some of the different scales within the DIQ. I believe that people who are more identified with diabetes will adhere to their treatment programs better than those who are less identified, and better adherence typically translates to better health. Gathering this data will yield pertinent information about the differences from the patients' perspective.
One of the potential benefits of this research is creating a better understanding of patientsí experiences. Often, therapists and health care professionals do not treat their patients as individuals, so having tools like a Disease Identification Questionnaire could take a step toward more personalized care. The results could also yield suggestions for ways to enhance positive identities and a sense of community among people with chronic illnesses. Perhaps acknowledging disease identities will lead to greater awareness and understanding of the experience of chronic illness.