Wednesday, June 1
Oncology Social Work: Its’ Contribution to People Living With Cancer
History of Cancer
Cancer, as a disease, carries with it so many associations, both for the persons diagnosed with cancer, their family and friends, and healthcare professionals. It is a dreaded disease, much like tuberculosis in previous centuries. Although heart disease is the major cause of death in the United States, the public’s perception of cancer includes death, fear, stigma, lingering suffering, pain, loss of control, helplessness, and economic ruin. These images of cancer affect the lay public and people living with cancer. Indeed, these powerfully aversive impressions of cancer contribute to the late detection of many cancers. In addition, so many people in the United States have no or limited health insurance or access to healthcare. This further compounds the problem of early detection and treatment of cancer.
Breakthroughs in the Past Two Decades
The past two decades have witnessed dramatic breakthroughs in the detection and treatment of cancer. Technological advances—coupled with early detection—have led to remarkable improvements in survival and cure rates. Innovative methods of managing the side effects of cancer treatments have made it possible for more persons with cancer to maintain the momentum of their lives while receiving cancer treatments. The advent of targeted treatments and personalized medicine enable health care teams to select treatments that are tailored to the patient’s type of cancer and quality-of-life. Finally, the trend of delivering cancer treatments in the outpatient setting or home as opposed to the inpatient setting has reduced time away from family, friends, work, and a sense of normalcy. Some cancer patients are now taking pills to treat their cancer and see their oncologist for follow-up appointments and monitoring of their status.
The Cancer Patient Population
People living with cancer are not immune to the dread which society associates with cancer. A diagnosis of cancer has a profound impact on most people and is a traumatic life event which threatens one’s physical, emotional, and social existence (Holland & Lewis, 2000). It upsets one’s core existence, equilibrium, and sense of normalcy. The diagnosis of cancer is a life crisis to the patient and family members. Powerful feelings of fear, sadness, anger, uncertainty, and isolation are not uncommon responses to cancer. Some patients may experience a collapse of their social network, with friends and family not knowing what to say or do. A cancer diagnosis has the potential to affect all aspects of social functioning. The hallmarks of the cancer experience for many patients are feelings of vulnerability and uncertainty coupled with fear of recurrent disease. Many patients and family members report the sense of being on a rollercoaster while living with cancer. On the other hand, numerous anecdotal case examples exist in which people living with cancer and their families report that the cancer experience provided an opportunity or catalyst for personal growth or career change.
People living with cancer may have visible, as well as invisible scars. The site or location of the cancer compounds the individual’s response. Although the public believe that they are going to live “a long time into the future,” cancer patients are forced “to confront their own mortality” (Mullan, 1985). From the point of diagnosis, cancer patients and their families are beset with a variety of treatment choices. The need to get credible information in a short period of time is a major psychosocial issue for patients to handle. Patients confront a myriad of issues that require psychosocial adaptation. As cancer intersects with patients’ daily living, there are opportunities for psychosocial intervention and programs to assist patients and families to continue the momentum of their lives in spite of their cancer diagnosis. There are a host of psychosocial interventions which exist to provide patients and their families with support as they encounter the vicissitudes of cancer. Some of these interventions include: practical help, counseling, support and guidance, resource information, someone to talk to, support groups, and informational materials. Often social workers are called upon to provide support as they are so skillful in helping to normalize the cancer experience.
Oncology Social Work
The recognition that social workers could contribute to the care of the medically ill occurred in the early twentieth century. These medical social workers usually practiced in hospital settings with the goal of helping patients and families make social and emotional adjustments to illness; assisting with practical issues, including financial problems, transportation, and planning for post hospital care; and working with policy makers to advocate for the specific needs of the medically ill (Lauria, Clark, Hermann & Stearns, 2001).
In the mid-1970s, with the proliferation of cancer hospitals and oncology centers within medical settings to exclusively focus on the treatment, care, and cure of cancer, oncology social work emerged as a sub-specialty of medical social work. Its goals are very much in keeping with medical social workers, except the focus and arena of practice is dedicated exclusively to the provision of professional social work services to cancer patients. In 1983, the National Association of Oncology Social Work was established offering an annual national conference, guidelines for standards of practice, and networking opportunities for this relatively new field of social work practice (Stearns, Lauria, Hermann & Fogelberg, 1983). In the late 1990s, the organization became international in scope and was renamed the Association of Oncology Social Work (AOSW). The AOSW is a nonprofit, international organization dedicated to the enhancement of psychosocial services to people with cancer and their families.
Founded in 1983 by social workers interested in oncology and by existing national cancer organizations, AOSW is an expanding force of psychosocial oncology professionals. Its mission is to advance excellence in the psychosocial care of persons with cancer, their families, and caregivers through networking, education, advocacy, research, and resource development. AOSW envisions a global society in which oncology care meets the physical, emotional, social, and spiritual needs of all people affected by cancer. Its goals are to: increase awareness of the psychosocial effects of cancer; advance the practice of psychosocial interventions that enhance quality of life and recovery of persons with cancer and their families; foster communication and support among psychosocial oncology caregivers; further the study of psychological and social effects of cancer through research and continuing education; advocate for programs and policies to meet the psychosocial needs of oncology patients and their families; promote liaison activities with other psychosocial oncology groups and professional oncology organizations; and promote the highest professional standards and ethics in the practice of oncology social work (Association of Oncology Social Work website (2011); www.aosw.org )
CancerCare: Oncology Social Work Practice Organization
CancerCare is a national nonprofit, 501c (3) organization that provides free, professional support services to anyone affected by cancer: people with cancer, caregivers, children, loved ones, and the bereaved. CancerCare services—including counseling and support groups, education, publications and fact sheets, financial assistance, and practical help—are provided by professionally trained oncology social workers and are completely free of charge. Last year, CancerCare provided direct services to 110,863 people and over $4,000,000 in financial assistance. CancerCare was founded in 1944, and its vision is to provide help and hope to cancer patients, their loved ones, and the bereaved. Its 50 master’s–level trained oncology social workers provide both practical assistance as well as complex counseling services on the telephone and online. They offer innovative services including online support groups, telephone support groups, and many services to assist older patients as well as children and teens impacted by cancer in their families. Their services are also available in Spanish. For the past twenty-three years, CancerCare offers free, innovative, one-hour Connect Education Workshops. These are a way for people to learn about cancer-related issues from the convenience of their home or office. Leading experts in oncology provide the most up-to-date information on the telephone or via live streaming through the internet. Participation is free. These workshops are archived as podcasts on the CancerCare website at: www.cancercare.org/podcasts. To register for upcoming Workshops go to: www.cancercare.org/connect, or call 1.800.813.HOPE (8473) to learn more about and access CancerCare’s free services, as well as register for upcoming workshops.
Most importantly, CancerCare and the many cancer organizations that exist throughout the United States fill a much needed gap in service to people living with cancer and offer the cancer population a variety of free psychosocial services to support them through their cancer journey.
- Holland, J. & Lewis, S. (2000). The Human Side of Cancer. New York: Harper Collins Publishers.
- Lauria, Clark, Hermann & Stearns (2001).Social Work in Oncology. Atlanta: The American Cancer Society.
- Mullan, F. (1983). Vital Signs. New York: Dell Publishing Company, Inc.
Carolyn Messner, DSW, MSW, ACSW, DCSW, BCD, LCSW-R, is director of education and training at CancerCare, and is past-president of the Association of Oncology Social Work (AOSW).