Education to ease stigma of depression vital for treatment and recovery
Many depressed people see problem as weakness, not illness
A formal community "needs assessment" provided the administrators at Johnson Memorial Hospital with some startling facts. The top admitting diagnosis for certain age groups was psychosis, which included depression. "The data showed us that not only were people reporting symptoms of depression, it was often severe enough for them to be hospitalized," says Janette Helm, MA, RN, director of education and training at the hospital in Franklin, IN.
The 165-bed hospital, as part of a partnership of private business and health care agencies, helped finance the assessment to determine if the group had addressed all the needs of the residents of Johnson County. In a random sampling, they discovered they were not meeting all of the community’s mental health needs. "The research showed that mental health issues were a major concern for our community. It was something we had not considered when we were putting our committees together. As a result of the research, we added mental health issues to the already existing substance abuse committee," says Helm.
Johnson County is not an isolated case. Each year, 17.6 million Americans experience a depressive illness. They can be triggered by genetic factors, a biochemical disturbance, or environmental factors such as change, serious loss, or stress. Of those who suffer from a major depression, 15% commit suicide. Only one-third of those suffering from the disease seek treatment, although therapy and medication are effective in 80% of the cases, according to the National Mental Health Association based in Alexandria, VA.
Like Johnson County, many communities probably are not aware of the prevalence of depression, says Helm. Although the patient education department received many requests for stress management classes, they didn’t get requests for classes on depression. "I don’t think people make the connection between stress that is an everyday part of life and stress to the point that it leads to depression," she says.
Following the survey, the partnership in Johnson County began to explore options to address the problem of depression. They are considering a workshop to educate the public on depression, and they are creating a list of community resources that provide information on where people can go for assistance. Also, they are exploring the idea of creating stress management programs. At health fairs, mental health professionals distribute a questionnaire so people can self-screen for depression in the privacy of their home. "There’s no privacy for them to do the screening at the fair," Helm says.
At MD Anderson Cancer Center in Houston, there is a multidisciplinary psychosocial team available for patient referral. However, the institution has not offered an educational program to teach patients about depression, says Louise Villejo, MPH, CHES, director of patient education. "We do have a number of print resources about depression in our learning centers and on bulletin boards throughout the hospital," she says. (For the expert’s advice on outreach efforts patient education managers can initiate, see story, above.)
In spite of the prevalence of depression, few Americans understand it. A national survey, sponsored by the Mental Health Association in 1996, revealed that people miss the warning signs of clinical depression, mistake the devastating illness for a normal life event, and are confused about the kind of treatment they need and where to get it. More than half of those surveyed believe that depression is a sign of weakness, not an illness.
Education is needed, and it must begin by eradicating the stigma of depression, says Rob Woodman, PhD, a practicing psychologist and a clinical professor in the Sutter Family Practice Residency program in Sacramento, CA. "Unless we do that, people are not going to be willing to hear the message or learn the simple things they need to do to screen themselves. It is not that depression is such a terrifying illness, it is the stigma that comes with it," he says.
As an example, Woodman points out that people who have been diagnosed with depression cannot get a pilot’s license.
There are many prominent people who have been depressed and successfully treated, yet if the general public found out, they would view them in a different light, says Richard Friedman, PhD, director of research at the Mind/Body Medical Institute at Harvard Medical School in Boston. "When people overcome cancer or cardiovascular disease, everyone is happy. Yet when people overcome depression, there is this lingering suspicion that there is still something wrong with them," he says.
Treatment can be difficult when family and friends don’t understand depression, says Woodman. A person may feel sad and tired all the time, but instead of being compassionate, his or her spouse wants them to stop moping around the house all day. "That same spouse would not say that if it were gall bladder disease," he says.
Identifying depression
While many people don’t want to admit to depression because of its current stigma, others simply do not realize they are depressed. Symptoms include decreased energy, loss of interest in usual activities, sleep disturbances, appetite and weight changes, feelings of hopelessness, worthlessness, and helplessness, and thoughts of death or suicide. Those who experience five or more of the symptoms for more than two weeks are encouraged to get help. Yet many think the feelings will eventually go away. Also, they have difficulty distinguishing between being unhappy and being clinically depressed. "People don’t have a lot of experience with depression, and frankly the difference between being unhappy and being depressed is hard to figure out," says Friedman.
Symptoms can be confusing and cause people to delay treatment. A person who is depressed might be able to go to work but then become totally fatigued as soon as he or she gets home, says Woodman. Because that person functions at work, he or she assumes the feelings of sadness or lack of interest in life are not a sign of depression.
When people do seek medical help, frequently they are not correctly diagnosed. Their first avenue for medical assistance is their primary care physician or other non-psychiatric clinicians. "There is a tremendous amount of depression, but it is usually masquerading as physical symptoms. It could be more effectively treated if clinicians were more sensitive to its occurrence and also had a few more strategies about how to refer people to places where they could get help," says Friedman. These patients not only do not get better, but they also cost the system a lot of money on tests, procedures, and interventions they don’t need, he says.
Another obstruction to proper diagnosis and treatment are restrictions placed upon care for people with psychological disorders by managed care organizations and insurance companies. In February 1997, leaders of nine organizations representing more than 600,000 health and mental health professionals issued a "Bill of Rights" for treatment of mental illnesses, psychological disorders, and substance use. The document includes a patient’s right to insurance equal to that available for other illnesses, a role in determining treatment, plan accountability, choice of mental health professional, and confidentiality. About 27% of all employees have inpatient coverage for mental health equivalent to their general medical benefits. Only 3% have equivalent outpatient coverage, according to the National Institute of Mental Health’s Depression Awareness, Recognition and Treatment Program.
"Every day in our offices we see the harm caused to our patients who frequently are denied the care they need by managed care or insurance plan representatives who have never seen them, patients whose confidential medical records are not treated with respect and who often are not told of all the treatment options available to them. This is done in the name of controlling costs, which regularly turns out to be making profits at the expense of patients. We hope that people will use the principles embodied in this Bill of Rights to demand and receive the care they need," says Harold I. Eist, MD, president of the American Psychiatric Association.
Patient empowerment
Patients who are educated about the signs and symptoms of depression and who understand that it is an illness, just as diabetes or heart disease is an illness, will be able to discuss the possibility of a psychological disorder with their primary care physician, says Friedman. Currently, people are reluctant to admit they have a psychiatric difficulty rather then a physical difficulty, he says. Much education is needed so that patients will be informed consumers and advocates. ( For information on community outreach screenings for depression, see story, p. 51.)
When patients cannot be advocates for proper medical care, family members must be prepared to assume the role. It’s important for adults to learn to recognize the signs and symptoms of depression in children, teens, and older adults. A child might become aggressive or begin having temper tantrums when separated from Mom. An astute parent would take the child to a qualified medical professional who could diagnose the depression. Questions concerning how much fun they have or their ability to concentrate would reveal that the child is depressed, says Gabrielle Carlson, MD, professor of psychiatry and pediatrics and director of Child and Adolescent Psychiatry at State University of New York at Stony Brook.
Older Americans are more likely than any other group to handle depression themselves. The 1996 survey on American attitudes about clinical depression found that only 42% of seniors would seek help from a health professional. They may be reluctant to seek help because 58% believe that depression is a normal part of aging. "Frequently, family members have to encourage a loved one to go to the doctor. We not only have to be sensitive to the symptoms of depression in ourselves but in the people we live with," says Friedman.
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