Cancer. If it attacks your body, you will need great physicians. But if it leads to you or family members feeling anxious or depressed, if it forces you to leave your job and lose your insurance, if it drains your savings and threatens your home, if your treatments lead to long-term problems like fatigue or infertility, you will also want to have trusted social workers to support you and to work with your physicians as part of the team, to ensure the best possible outcomes for you and your family.
There will be a tremendous need for oncology social workers in the coming decades. People are living longer and are at greater risk for cancer. In particular, 70 million baby boomers are aging; one in two men and one in three women will get cancer at some point in their lives. Meanwhile, from a social work student point of view, cancer covers so much — psychosocially, spiritually and medically — that a student who has worked with cancer patients is prepared to work with almost anything else the profession hands them.
The Michigan Social Work PhD program has cultivated a number of national leaders in oncology social work research. Below, we profile three who graduated at different times, eventually met up and collaborated and continue their passion for oncology social work and research in different ways.
A Brief History of a Bridge
“The experience of cancer is biological, psychological, social and spiritual,” says Professor Bradley Zebrack, PhD ’99, who studies the integration of practice and research in medical social work. “Social workers’ training in assessment and intervention prepares us perfectly to respond to the psychosocial needs of cancer patients. It has been hard, though, to bridge medicine and social work. Health care is a business, so we have to make a business case for social work and social work research in oncology. I have more flexibility in my day-to-day life than a physician does, so I can take the initiative to reach out to physicians, and maybe we can cross that bridge.”
“The psychosocial was missing when I started working in health care,” is how Julianne S. (Julie) Oktay, MSW ‘66, PhD ‘74, puts it. At Michigan, Oktay studied community organizing (MSW) and got her PhD in social work and sociology. Early in her career, she taught in an experimental interprofessional health professional training program at Johns Hopkins School of Health Services in Baltimore in the 1970s. “That program tried to integrate the psychosocial into general medicine practice,” she recalled. “In hospitals at that time, the psychosocial aspect was often missing. Social work offices were sometimes in hospital basements. Medical teams did not include social workers as they discussed cases. The social workers I encountered in those days were often the only ones who saw the importance of the whole person and whole family receiving care. I was inspired to use my research skills to further their effectiveness.”
Oktay soon moved across town to the University of Maryland School of Social Work, and promptly started a health specialization for MSW students; she also taught a course that addressed the psychosocial aspects of health care. “Over time,” she said, “social work became more recognized in health care settings. For example, when new fields developed, hospitals began to include social workers as core staff. The social work office was right there in the unit and social workers began to attend rounds.”
In the late 1980s, Oktay met a colleague who had done a qualitative dissertation on women’s timing of motherhood. “I was blown away,” Oktay said. “You could do legitimate research on something close to real-life experience!” Oktay and her new colleague, Carolyn Walter, decided to look at cancer this way. They would do a study on women’s life course development and breast cancer. They interviewed women who had experienced breast cancer, and in 1991, Oktay and Walter published a landmark study, Breast Cancer in the Life Course: Women’s Experiences. “I began attending oncology social work conferences,” Oktay recalled, “and there I met social work practitioners who wanted to use our work in their practice with cancer patients. I was thrilled. I had been trained by Michigan’s joint doctoral program to bring research skills to bear on practice. I wanted my research to be used by those in the trenches to help patients and families cope with illness. In oncology social work, I found a place where that was going to happen!”
Oktay was building the bridge, as Brad Zebrack might say, between medicine and social work.
Coming Together in Kentucky
Karen Kayser, MSW ‘77, PhD ’88, earned her master’s and doctorate at Michigan Social Work after several years as a couples and family therapist. A member of her dissertation committee, Professor Oscar Barbarin III, invited her to do a postdoc to test a clinical intervention for families of children with cancer. “We came up with a theoretical model to understand parents coping with stress,” Kayser recalls, “and how a clinician might help them manage that stress, together, as a couple.” The postdoc experience solidified Kayser’s interest in oncology social work, as she could see a visible difference in the impact cancer had on families.
Kayser subsequently established herself at Boston College conducting intervention research in oncology social work until, in 2011, opportunity beckoned from a very different place: the University of Louisville, where she would assume the Professor and Dr. Renato LaRocca Endowed Chair of Oncology Social Work. (Kentucky has some of the highest cancer Bradley Zebrack incidence and death rates in the U.S.)
Kayser established a successful oncology social work program at Louisville, and her endowed chair financed meetings and other activities of a small, ad hoc group of oncology social work researchers, including Oktay and Zebrack. All three knew one another through the American Cancer Society, and of course they had immediately noted their Michigan connection.
Kayser, Zebrack and Oktay — and a few other hand-picked leaders in the field — began holding annual gatherings in Louisville, a kind of once-a-year oncology social work research think tank that ultimately carried out several joint research projects. Among these was a project to address distress management through the screening of cancer patients for psychological and social challenges (distress) at the time of their cancer diagnoses. The group spearheaded a special distress management issue of the Journal of Psychosocial Oncology, and they looked at how well cancer centers across the country were adhering to their own plans for distress screening and management. This study was, in Zebrack’s words, “an important bridge for bringing attention to the critical role oncology social workers play in cancer care.” Kayser currently is Professor Emerita at the University of Louisville and serves as editor of the Journal of Psychosocial Oncology.
“Julie’s lifelong experience observing and reporting on the health care system was tremendously valuable,” Zebrack said. “She is such a strong proponent of strengthening the role of social workers in health research.” Oktay had, for example, helped to develop oncology social work research as chair of research for the Association of Oncology Social Work. She had supported the American Cancer Society’s MSW training program for social workers. She and Zebrack developed a training program within the American Cancer Society to prepare emerging PhDs to be competitive in research, training and education.
On Campus Now
As this issue of Ongoing was headed to the press, Zebrack received notification of a fiveyear $4.6 million R01 award from the National Institutes of Health for a project entitled “Social genomic mechanisms of health disparities among adolescent and young adult (AYA) cancer survivors.”
Zebrack is surrounded by a number of colleagues at the School of Social Work who are studying oncology-related issues and carrying out collaborations with oncologists at Michigan Medicine. Among them: Assistant Professor Katrina Ellis, who studies the influence of co-occurring illnesses on the psychosocial and behavioral well-being of cancer survivors and their families; Associate Professor Jamie Mitchell, studying mechanisms of patient-centered communication between older African American men and their physicians in the course of cancer care; Clinical Associate Professor Daniella Wittmann, who develops and tests interventions that support couples’ sexual recovery after cancer; and Assistant Professor Anao Zhang, who specializes in psychosocial interventions to treat depression and anxiety among adolescent and young adult cancer patients.
Zebrack and Zhang co-direct the research arm for Michigan Medicine’s Adolescent and Young Adult Oncology Program. Zebrack points out that, “A big issue for this population of teens and young adults is the risks for infertility as a result of chemotherapy,” Zebrack says. He has helped to integrate Michigan Medicine’s Reproductive Endocrinology Clinic with oncology care at the Rogel Cancer Center.
Zebrack and Zhang, assisted by joint PhD candidate Nina Jackson Levin, conducted qualitative research, interviewing teens with cancer to learn about their experiences of being told about infertility risk. Were they offered reproductive preservation services before cancer therapy? How was this option communicated to them? Michigan Medicine’s reproductive health program has used results from this study to help improve treatments and referrals for young cancer patients for fertility services. It is hoped that dissemination of findings will help improve services at other cancer centers as well.