A useful and easy to administer scale that helps to identify stigma is the "Perceived Criticism Scale" (J. Abnorm. Psychol. 1989;98:225-35). By asking four questions, the clinician can get a good sense of family dynamics and can monitor the progress and change over time. The questions rate perception on a scale of 1-10, where "X" is the other person involved in treatment, either patient or caregiver. Here are the questions:
1. How critical do you think you are of X?
2. How critical do you think X is of you?
3. When X criticizes you, how upset do you get?
4. When you criticize X, how upset does he/she get?
For families with high scores, follow-up is needed. The Internalized Stigma of Mental Illness (ISMI) scale (Psychiatry Res. 2003;121:31-49) can be used. The ISMI scale makes statements about stigma for which participants rate their agreement on a Likert scale, such as:
• I don’t talk about myself much because I don’t want to burden others with my mental illness.
• Being around people who don’t have a mental illness makes me feel out of place or inadequate.
• People can tell that I have a mental illness by the way I look.
• Mentally ill people tend to be violent.
• I feel out of place in the world because I have a mental illness.
The ISMI scale contains 29 short, simple statements like the ones above and can be completed in less than 10 minutes. The statements are designed to avoid hypothetical situations, stay focused in the present, and address the participant’s own identity and experience.
Using the tools in practice
Naomi entered family treatment with her husband and daughters. Using the ISMI to measure the stigma of mental illness that each family member was experiencing, Naomi was shocked to see that her daughters felt far less stigma about having a mother with mental illness than she had assumed. In turn, her daughters were shocked at how much stigma Naomi was experiencing. Naomi’s husband scored between them. This data paved the way for an open family conversation about how Naomi’s illness had affected their lives, and especially how Naomi’s husband and his perceptions of her illness had affected her treatment course.
Caregivers play a very important role in bipolar disorder. After all, the illness can lead to difficulty functioning and can threaten the family’s stability. Sometimes caregivers can serve as a source of strength and a beacon of stability in the occasional storm. It is hard for the family between the storms, when the same flashing beacon can be a constant reminder to the patient of their illness. Often, well intentioned concerns become constant checking up, making the patient feel stigmatized and expected to fail.
"Good" caregivers will be aware of the stigma and the impact it has on their loved one and on themselves, without becoming a source of stigma.
Dr. Mednick is an attending psychiatrist at the Family Center for Bipolar at Mount Sinai Beth Israel in New York City. Dr. Bassirnia is a second-year psychiatry resident at Mount Sinai Beth Israel. Scan the QR code to read more Families in Psychiatry columns at clinicalpsychiatrynews.com.