On August 25, 2011 the American Academy of Nursing announced their 2011 Living Legends. The Academy’s highest recognition honored five nurses this year for their notable accomplishments and contributions to nursing in practice, research, and education. The honorees are Patricia Benner, PhD, RN, FAAN; Suzanne Feetham, PhD, RN, FAAN; Ada Sue Hinshaw, PhD, RN, FAAN; Meridean L. Maas, PhD, RN, FAAN; and May L. Wykle, PhD, RN, FGSA, FAAN. All of the members are fellows of the Academy, one of the qualifications to be nominated for this honor. We noticed some of these honorees have also been a part of Minority Nursehistory!
Benner is Professor Emerita in the Department of Social and Behavioral Sciences at the University of California, San Francisco and former Senior Scholar at the Carnegie Foundation for the Advancement of Teaching. Her work and research has focused on clinical practice and clinical ethics. She’s written nine books, three of which received Book of the Year awards. “Benner’s Stages of Clinical Competence” from her book, From Novice to Expert, were profiled in a 2008 Minority Nurse article entitled “Achieving Expertise.” Benner received her bachelor’s degree in nursing from Pasadena College, her master’s degree in medical surgical nursing from the University of California, San Francisco, and a Ph.D. in Stress and Coping and Health from the University of California, Berkeley.
Feetham is the first non-physician chair of professional and policy organizations, including the Michigan Myelodysplasia Association, the Spina Bifida Association of the America-Medical Advisory groups, and the Michigan Governor’s Commission on Crippled Children. When Feetham was a senior fellow at Health Resources and Services Administration (HRSA), she was interviewed in the 2003 spring issue of Minority Nurse. The article, “Preparing for the Future,” discussed the opportunities for minority nurses to become more educated and involved in new genetics and genomics.
Hinshaw is current Dean and a Professor at the Graduate School of Nursing, Uniformed Services University of the Health Sciences. She was the former Dean/Professor Emerita at the University of Michigan School of Nursing, and was President of the American Academy of Nursing from 1999–2001. The focus of Hinshaw’s research in nursing has been on quality care, patient outcomes, positive work environments for nurses, and patient safety. She has written numerous articles and books, has served on many scientific committees, and has taught as a visiting professor. She earned her bachelor’s degree at the University of Kansas, her M.S.N from Yale University, and her master’s and a Ph.D. in sociology from the University of Arizona.
Maas is Professor Emerita at the College of Nursing at the University of Iowa, director of the inaugural John A. Hartford Center of Geriatric Excellence, and a member of the inaugural executive board of the Regent’s Center for Nursing Classification and Clinical Effectiveness. She has authored and edited several books, and is a reviewer of multiple journals. Maas has taught and advised many nursing students at the University of Iowa, where she earned her doctorate in sociology of organizations. Maas’s career and academic focuses have been in the areas of nursing administration and gerontological nursing.
Wykle is the first and former African American Dean of the Frances Payne Bolton School of Nursing at Case Western University, the 24th President of Sigma Theta Tau International, and a recipient of the National Black Nurses Association Lifetime Achievement Award. Her academic interests and research range from geriatric and mental health to nursing administration and minority health care. Her life and career were featured in 2007 in the Minority Nurse article, “From ‘Small-Town Girl’ to Pioneering Nurse Educator.” Wykle earned her B.S.N. in Nursing, M.S.N. in Psych and Mental Health Nursing, and her Ph.D. in Education from Case Western Reserve University.
Siblings of children with autism are at a higher risk of also having the disorder than previously thought. Researchers at the Mind Institute at the University of California, Davis have found that siblings of children with autism spectrum disorder have a 1 in 5 chance of also being autistic, when previous statistics said there was a 1 in 10 chance of the sibling having the disorder.
The latest research came from the largest study to date on the risk of autism among siblings. Published in the journal Pediatrics and supported by Autism Speaks and the National Institutes of Health, the research followed 664 eight month-old infants, who had siblings with ASD, until they reached 36 months. Nineteen percent of the siblings were diagnosed with the disorder, which puts siblings of children with autism at a 20 times greater risk of developing ASD than the general population.
Keeping families and patients informed and aware of emerging research like this is important. Researchers urge families who have children with autism and are considering having more children to prepare to watch younger siblings more closely as they develop. Potential signs of autism can display even in infancy. On their website, Autism Speaks has a list of signals for parents to look out for as early as three or four months. Some of the potential signs include a lack of smiling at six months or an absence of gestures like pointing, waving, or babbling, at 12 months. Early detection, diagnosis, and intervention have been shown to positively improve the effects of the disorder in a child’s behavior.
The end of the year was dreamlike. Not only was I accepted into an accelerated nursing program, the school also selected me as a recipient for a prestigious scholarship award. The honor of being among an elite group chosen to represent the ideal future “face” of nursing leadership was an incredible sensation. But those exciting days quickly spiraled into a nightmare.
Many of us belonging to ethnic and racial groups experience disturbingly disparate health, educational, and economic outcomes, and we have committed ourselves passionately to improving the well-being and quality of life of individuals from populations from which we ourselves are drawn.
My faculty advisor for the scholarship program was so impressed with my curriculum vitae and scholarship application essay that she strongly encouraged me to pursue scheduling a meeting with the director of the Ph.D. program to discuss a seamless progression from a B.S. to an M.S.N. to a Ph.D. One week later, I met with my faculty advisor again to discuss some initial temporary feelings of anxiety I had about the program. I sought to proactively inquire about accessing resources and strategies to succeed in the program, with my diagnosis of depression and anxiety disorder. The next day, in a meeting with my advisor and one of the school’s deans, I was urged to voluntarily withdraw my admission and cancel my acceptance.
The experience was unfathomable; literally within a week, I went from being encouraged to complete all levels of nursing education at the school to being told “this is a very intense program,” “we want you to be well,” “there are other seconddegree programs,” and “when one opportunity closes another opens.” A week after the scholarship orientation and on the fourth day of classes, they concluded that I lacked the emotional fortitude to handle the rigors of the intense, accelerated program. Additionally, when I called several weeks later to honor my end of the scholarship contract with the organization, I was informed that the school had already contacted the organization the day after my withdrawal and requested that the scholarship funds be given to another fi nalist. Along with the frustration inherent in the situation, I was very disappointed with the enduring stigma of mental illness, so pervasive that my health condition superseded the accomplishments that resulted in my selection as a prestigious scholar.
About a month after the experience, I traveled overseas for a service mission trip. An uncanny experience served to maintain my resolute desire to be a nurse, in spite of the indignant and vilifying event.
As the service team of approximately 60 volunteers waited to begin our five-day service mission, the warm community residents greeted us individually. One young girl caught my attention, as she was wearing a bright pink shirt, decorated with the word “princess” (printed in English) and a rhinestone-studded tiara. It reminded me of something I would have worn at her age. Speaking in Spanish, I said, “I really like your shirt.” She tilted her head, her eyes downcast. Her facial expression indicated that she heard me, but she didn’t respond to my compliment. I then proceeded to tell her how pretty it was and called her Princess. Again, I received no response and little eye contact. I finally asked her if she understood me, as I didn’t rule out the possibility that my Spanish was rustier than I realized, but she answered “yes.”
When I walked off I watched the young girl and noticed she was aloof from the other girls and women who were waiting to enter the clinic area. I had two initial thoughts: first, this young girl needs to see a provider and feels shame or embarrassment, or she is extremely shy. Several hours into the afternoon, I saw her again and asked her age. She clearly responded with her head lifted, making eye contact: “16.” Then she became reticent to speak again, and I watched her from a distance and noticed that she remained aloof.
I asked one of the missionaries of a partnering organization about the average age of parity and the familial structure. He said couples are usually partnered anywhere from 12 years to adulthood. I asked our pharmacy manager if we had pregnancy tests. We didn’t.
I saw the Princess again for the third time in the late afternoon but didn’t find an appropriate opportunity to speak with her in an inconspicuous manner. The next day, I spoke with the pediatrician about my assumption, and when I spotted the young lady, I discreetly pointed her out. My hope was that she could be examined and referred to the permanent clinic, about a 30–40 minute walk, to receive the care I believed she needed. A few minutes prior to leaving for my service project worksite, I greeted her with a wave and a smile and it was reciprocated with a partial wave and smile. The next day, I discovered that a teenage girl was seen by one of our providers and that she indeed thought she might be pregnant but was afraid her mother was unaware of her potential pregnancy.
I shared my experience with my student mentor assigned to me at the time of my admission offer to the scholarship program. She expressed her concern about the information I revealed and reasoned that as a black female ostensibly entering a predominately white women’s profession, disclosing my mental health condition might not have been the action of my better judgment. I respectfully, wholeheartedly disagree.
Not only does concealment fuel stigma, but carrying this unnecessary burden hinders one’s ability to achieve a complete and whole state of wellness. Additionally, I candidly shared with her that my father was a physician, trained in the ’70s, who labored under the stigma and shame of his depression for 30 years, unbeknownst to most of his colleagues. Out of fear of losing his medical license and the respect of his colleagues, he concealed his illness and failed to receive the appropriate level of treatment he needed during a crisis episode. As a result, his lifelong battle with depression ended in suicide. His family, friends, colleagues, fellow community members, and former patients were absolutely devastated and angry that he never reached out for adequate help.
My very considerate and compassionate student mentor addressed a relevant and poignant concern, one I also believe has been inadequately examined in society: in a country that professes a desire for diversity, but where racial prejudice still exists and opportunities to render a racial/ ethnic minority as incompetent can be exploited, how does one handle a having a mental illness?
While this question should by no means be ignored, I’ve debated my decision to disclose my mental health history and the physical manifestations that I experienced. My conclusion? I unequivocally have no regrets. One of the main roles of a nurse is to be a patient advocate. I believe that if I can effectively advocate for myself, I’m well qualifi ed to be a uniquely effective advocate for a patient.
Finally, to my father, I’m so very proud of you for dedicating your life, service, and passions to helping others, even as you did your best to address your own struggles and challenges. Thank you for giving me the resiliency and courage to pursue my passions and dreams amidst obstacles and adversity. I love you.
If you are struggling with depression and/or anxiety, we encourage you visit the National Alliance on Mental Illness website at www.nami.org or the National Institute of Mental Health at www.nimh.nih.gov.
A study conducted by the University of Michigan College of Pharmacy found that 28% of low-income pregnant women with HIV are depressed but do not receive adequate treatment. Previous studies have shown that African American women are not only less likely to seek help for their depression, but they very rarely report any symptoms of depression in the first place.
The study involved 431 African American women and 219 white women with depression. Of these women, about 20% reported depressive symptoms, but researchers believe the percentage of depression could be much higher for African American women when compared to whites since the research only found results from women already being treated for depression.
According to earlier studies, African American women are more likely than white women to report physician stereotyping and tend to mistrust the medical community. Studies have shown that African American women do not receive the same quality care as white women; if they were to report signs of depression, they may not be taken seriously. Rajesh Balkrishnan, a coauthor of the study, says physicians have reported feeling unprepared to communicate with minority women regarding depression.
In the future, Balkrishnan believes depression should be screened and treated in pregnant, HIV-positive, minority women. If depression goes untreated in this population, it can sometimes lead to suicide or substance abuse, harming both the mother and baby.
In any given year, about one in five Americans is affected by a diagnosable mental illness. Our nation is also seeing a dramatic increase in the number of students with disabilities on college campuses—and especially students with so-called hidden disabilities, such as learning disabilities, attention deficit hyperactivity disorder (ADHD) and psychiatric disabilities.1
In 2002, the American College Health Association reported that 76% of students surveyed felt “overwhelmed,” while 22% were sometimes so depressed they couldn’t function.2 In a 2005 study, the prevalence of depression in a medical college was reported at 15.2%; only 26.5% of the depressed students reported having treatment.3 The effects of depression and other psychiatric disabilities in nursing students have been studied to some extent as well. However, the exact numbers of nurses and nursing students with mental illness are unknown, due to lack of research data coupled with fear of discrimination, stigma or rejection from a nursing program, state licensing board or employer if they disclose their disability.
The cost of untreated mental illness in college students is enormous. In one recent study of undergraduate students, diagnosed depression was associated with nearly a half point decrease in grade point averages; conversely, receiving treatment for depression was associated with a protective effect of approximately 0.44 points.4 In another cohort, academic impairment—manifested as absenteeism from class, decreased academic productivity and significant interpersonal problems at school—was seen in 92% of depressed students.5 Still other reports suggest that stigma resulting from society’s negative perceptions about depression and its treatment may contribute to the 30,000 suicides committed annually in the United States.6
The Decision to Disclose
If you are a current or prospective nursing student living with mental illness, one of the most important decisions you will have to make is whether or not you should disclose your disability to admissions committees, nursing program administrators, faculty members, classmates, potential employers and others. As the following examples show, there are advantages and disadvantages to “going public” with your disability.
In her 1997 autobiography An Unquiet Mind: A Memoir of Moods and Madness, Kay Redfield Jamison, a professor of psychiatry at Johns Hopkins University School of Medicine who lives with bipolar illness, contemplates disclosing her disability. “I am tired of hiding, tired of misspent and knotted energies, tired of the hypocrisy and tired of acting as though I have something to hide,” she writes. “One is what one is.” Years later, Jamison admitted that while her decision to disclose her illness publicly has had consequences, she would choose to do it again.
Additional Online Resources Disability and Higher Education: Association on Higher Education and Disability (AHEAD) www.ahead.org “Students with Disabilities Preparing for Postsecondary Education: Know Your Rights and Responsibilities” www.ed.gov/about/offices/list/ocr/transition.html U.S. Department of Education, Office of Civil Rights – This site explains how to report educational discrimination, access civil rights regulatory and policy documents, and request information on civil rights compliance programs. www.ed.gov/about/offices/list/ocr/index.html U.S. Department of Labor Job Accommodation Network (JAN) www.jan.wvu.edu Mental Health Advocacy Organizations: National Alliance on Mental Illness (NAMI) www.nami.org Depression and Bipolar Support Alliance www.dbsalliance.org National Alliance for Research on Schizophrenia and Depression (NARSAD) www.narsad.org Boston University Center for Psychiatric Rehabilitation www.bu.edu/cpr/ Nurses in Recovery www.brucienne.com/nir
Now consider the example of Lynne, a pre-nursing student in California who also has bipolar disorder. Because of her disability, she was initially afraid to pursue her dream of choosing nursing as a second career. She had known three health care professionals who had suffered damage to their careers as a result of employers and co-workers knowing about their mental illness. They felt they had become defined by their illnesses. A simple argument at work became suspicious hostility; an error raised questions of poor judgment, faulty cognition or side effects from medication.
With the help of family, friends, her mentor and a discussion board at ExceptionalNurse.com, an online community for nurses and nursing students with disabilities, Lynne applied to and was accepted by several nursing schools. Once at school, she found a therapist and psychiatrist, visited the campus Office of Disability Services to have documentation of her illness placed on file, and designated her academic advisor as a source of confidential support, but kept her illness a secret to all others on campus.
Several months into the school year, Lynne became increasingly aware of the distance and disconnect she felt from her classmates. She also felt that she had to leave her “real self” at the door when she entered the classroom. While assisting with on-campus activities for Mental Illness Awareness Week, she shared her frustration with a trusted professor, who encouraged her to share more of herself with others, at her own pace. A year later, Lynne enjoys planning activities with her campus mental health advocacy organization, giving talks, and participating in panel discussions about mental illness. She has also founded an informal support group for nursing students with mental health issues.
Other than being known to some people on campus as “a person with bipolar disorder,” Lynne has experienced little stigma in her nursing program. The few instances of bias she has encountered have been subtle and came from people who meant well.
For example, while discussing her history with a supportive faculty member, Lynne was told, “Oh, we’ve had people with bipolar in this program before. I’m sure you’ll do fine.” Lynne had not indicated a need for reassurance and wondered why it had so suddenly and spontaneously been offered. Another instructor suggested that Lynne lead a life full of activities because her “high mood” enabled this. Lynne asserted that, for her, hypomania was uncomfortable, frustrating and not at all productive, and that she felt her other qualities and accomplishments were being overlooked.
Tools for Wellness Your mental illness may be with you for a long time, so consider not only accepting it but making friends with it. Think of a wellness plan not as “treatment” or simply medication and therapy (which are important!) but as part of a healthy way of life. Here are some strategies that other nursing students with psychiatric disabilities have found helpful:
Develop a strong, collaborative alliance with your health care providers.
Become educated about your illness, be a proactive health care consumer and take time to educate others.
Learn good coping skills, such as healthy eating, sleeping and exercise habits.
Make social time with friends and family a priority, as well as relaxation time.
Activities or hobbies that you enjoy will give your life balance.
At home and at school, consider asking a good friend, mentor or family member to help you monitor yourself. Even those of us with the best insight may be helped by a gentle nudge and some outside perspective from someone we trust.
For students who have to finance their education by working while they attend school, flexible scheduling is helpful. However, if you find that work stress is interfering with your studies and quality of life, look into alternative sources of funding. Contact your state Office of Vocational Rehabilitation to find out about options and solutions.
Finally, be especially honest with yourself about whether or not this is really the right time for you to be in school. Will you be able to get through a long clinical day without having symptoms that affect your ability to learn or to provide safe nursing care? If you have doubts, be kind to yourself and make wellness your first priority. Nursing school will still be there for you when you are feeling healthy enough to fully benefit from the experience and give your best.
Sources of Support
Having a strong support system in place can make a world of difference. Recall the story of Lynne, who credited much of her success to her support network of health care providers, academic advisors, professors, family and friends, as well as the online networking resources she found at ExceptionalNurse.com. This nonprofit virtual community is committed to the inclusion of more people with disabilities in the nursing profession. The Web site provides contact information for more than 80 mentors, along with a wide range of other disability-related resources and information.
In addition, the online discussion board at ExceptionalNurse.com gives you the opportunity to exchange support and advice with other students and nurses who are dealing with the same issues. Here are some excerpts from recent posts:
“I’m in a BSN program now and have not disclosed my history of major depression with psychotic features. The psychotic part is controlled with meds, and for the most part, so is my mood. I am getting straight A’s in school, but I don’t know if that will be enough to convince a licensing board that I’m stable.”
“I feel your pain. I am bipolar and when I went to nursing school I was terrified that if someone found out I would be tossed out of the program. I waited until I was halfway through nursing school to disclose.”
“I know of professionals who avoid treatment to keep a diagnosis off their records. I also worry a great deal that my illness will interfere with my employment or licensure.”
“I just started nursing school, took me like two years to get in. . .I also have a panic attack disorder that I take medication for. It’s essentially under control, I certainly don’t feel I’m a danger to patients in the least, but we start clinicals next week.”
Students like these share “invisible” disabilities and need the support of the people around them—family, friends, faculty and classmates—to be successful in a nursing program. Nursing educators in particular must serve as a bridge to help students gain acceptance from patients, clinical staff and peers.7
The challenges nursing students with mental illness face are complex and lack “one size fits all” solutions. The only way the stigma will go away is if there are successful, visible role models in the profession—practicing nurses with psychiatric disabilities who are stable, responsible, pulling their own weight and letting others see that it can be done. If you believe you have what it takes to succeed, stick to your guns and fight for your right to become a nurse. Your disability gives you a unique gift of understanding and compassion, and you have an important role to play in nursing.
References:
Wolf, L.E. (2001). “College Students with ADHD and Other Hidden Disabilities: Outcomes and Interventions.” Annals of the New York Academy of Sciences, Vol. 931, pp. 385-395.
Shea, R.H. (2002). “On the Edge on Campus. The State of College Students’ Mental Health Continues to Decline. What’s the Solution?” U.S. News & World Report, Vol. 132, No. 5, pp. 56-57.
Tija, J., Givens, J.L. and Shea, J.A. (2005). “Factors Associated with Undertreatment of Medical Student Depression.” Journal of the American College of Health, Vol. 53, No. 5, pp. 219-224.
Hysenbegasi, A., Hass, S.L. and Rowland, C.R. (2005). “The Impact of Depression on the Academic Productivity of University Students.” Journal of Mental Health Policyand Economics, Vol. 8, No. 3, pp. 145-151.
Heiligenstein, E., Guenther, G., Hsu, K. and Herman, K. (1996). “Depression and Academic Impairment in College Students.” Journal of the American College of Health, Vol. 45, No. 2, pp. 59-64.
U.S. Department of Health and Human Services (1999). Mental Health: A Report of the Surgeon General.
Maheady, D. (2003). Nursing Students with Disabilities: Change the Course. Exceptional Parent Press.
