{"id":7815,"date":"2019-02-12T17:49:10","date_gmt":"2019-02-12T22:49:10","guid":{"rendered":"http:\/\/www.servsig.org\/wordpress\/?p=7815"},"modified":"2019-02-12T17:49:10","modified_gmt":"2019-02-12T22:49:10","slug":"people-diagnosed-with-cancer-often-dont-embrace-the-term-survivor","status":"publish","type":"post","link":"https:\/\/www.servsig.org\/wordpress\/2019\/02\/people-diagnosed-with-cancer-often-dont-embrace-the-term-survivor\/","title":{"rendered":"People diagnosed with cancer often don\u2019t embrace the term \u2018survivor\u2019"},"content":{"rendered":"

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By\u00a0Leonard L. Berry, Andrea Flynn, and\u00a0Scott Davis<\/em><\/p>\n

\u201cCancer survivor\u201d has become a catch-all phrase to refer to living individuals diagnosed with cancer at some point in their lives. Cancer clinics and clinicians, patient advocacy organizations and media reports commonly use the term.<\/p>\n

Using cancer survivor as a descriptor is certainly an act with good intentions. After all, people diagnosed with cancer have a diverse array of physical, emotional, social and spiritual needs \u2013 and the language of survival can be empowering to many of them. For this reason, institutions that focus on cancer have framed the term broadly. For example, the National Coalition for Cancer Survivorship has defined cancer survivor as \u201cany person diagnosed with cancer from the time of initial diagnosis until his or her death.\u201d<\/p>\n

Nevertheless, as marketing professors who study how to better serve patients, we were struck by the notion of applying the term \u201ccancer survivor\u201d so broadly that it would even include people who ultimately die of cancer.<\/p>\n

Should the same term be used for the entire spectrum of living people who have experienced cancer, which represents more than 100 distinct diseases affecting approximately 14 million people in the United States?<\/p>\n

A complex issue<\/strong><\/p>\n

\"\"A woman receiving radiation therapy for cancer. Treatment for the disease is often so harsh and traumatic that some patients do not want to recall their experiences. Mark_Kostich\/Shutterstock.com
\nIndeed, the published research on this question reflects its complexity. An analysis of 23 studies of how people diagnosed with cancer view the term \u201ccancer survivor\u201d shows that although many embrace it, others see it as inappropriate. Some of them fear not surviving if cancer recurs; others think the term itself is disrespectful to people who die of cancer or believe the term better fits people with cancers more serious than their own.<\/p>\n

Still others simply don\u2019t want to live with the \u201csurvivor label\u201d or don\u2019t think the term reflects who they are. In studies that ask patients to make a discrete yes\u2013no choice about whether they identify as a cancer survivor, the percentage who say \u201cyes\u201d ranges from about 31 percent to 78 percent, depending on the type of cancer and other individual factors, with breast cancer patients generally showing greater affinity for the term than patients with other types of cancer.<\/p>\n

Recognizing that forcing a yes\u2013no choice on this delicate question is not ideal, we partnered with Dr. Katie Deming, a radiation oncologist at Kaiser Permanente, and Dr. Jeffrey Landercasper, clinical adjunct professor of surgery at the University of Wisconsin School of Medicine and Public Health, to conduct our own study of how current and former patients perceive the term \u201ccancer survivor.\u201d We measured reactions to the term in three ways: a seven-point scale from strongly disagree to strongly agree, a 100-point allocation exercise from 0 (negative) to 100 (positive) on a continuous scale, and an open-ended question, \u201cWhat is your personal opinion about the phrase \u2018cancer survivor\u2019 and why do you feel as you do?\u201d We analyzed more than 1,400 surveys completed by patients, primarily with breast cancer, who belong to the Dr. Susan Love Research Foundation\u2019s Army of Women, an organization that connects researchers with people who want to participate in breast cancer research. About three-quarters of our respondents were currently undergoing cancer treatment.<\/p>\n

Our findings reinforce the concern that motivated our study. Respondents\u2019 average scores for the two quantitative questions were slightly above the scale midpoints, indicating many people are negatively disposed to the term. The open-ended question was especially revealing in documenting not only how respondents regarded the term but also why. Overall, about 60 percent of comments were negative, 29 percent positive, and 11 percent neutral.<\/p>\n

Among the negative responses to the term \u201ccancer survivor,\u201d the most common theme had to do with its disregarding the patient\u2019s fear of recurrence. One woman\u2019s response captures the essence of this concern: \u201cI feel like I\u2019m tempting fate when I say I\u2019ve survived it.\u201d<\/p>\n

Other women who felt negatively about the phrase made statements such as \u201cI don\u2019t deserve to carry the title proudly because I didn\u2019t \u2018suffer\u2019 enough to earn [it]\u201d; \u201cI prefer not to define myself by my cancer diagnosis or status\u201d; and \u201cit erases the experience of those who [still] have or will die of the disease.\u201d<\/p>\n

Patients who felt positively about being called a cancer survivor often said they took pride in the accomplishment of surviving cancer \u2013 as one woman put it, \u201cof winning the battle against this life-threatening disease.\u201d Another said the term made her feel \u201cempowered, instead of victimized.\u201d Others cited the sense of community conferred by the phrase, specifically a \u201cpersonal connection to other cancer patients.\u201d<\/p>\n

Our statistical analysis comparing respondents with negative perceptions versus positive perceptions of the term indicates that undergoing active cancer treatment, advanced cancer stage, and older age at diagnosis or study participation are associated with less positive perceptions.<\/p>\n

\"\"<\/a>Health care language should do no harm<\/strong><\/p>\n

Health care providers should take care to listen to their patients and their needs, especially when it comes to those who have been treated for cancer. Monkey Business Images\/Shutterstock.com
\nThe key takeaway from our study, and from other published research on the topic, is that using a single label to describe a diverse population of cancer patients in blanket fashion inevitably leaves a substantial percentage of them feeling unrepresented, perhaps even alienated, by the term \u2013 even though many others derive positive benefits from using and hearing it. In short, because the group of people typically described by the term is far from a monolith, a single phrase that is subjective rather than factual is unlikely to be up to the task. The label \u201ccancer survivor\u201d is not based on any specific fact related to a person\u2019s particular treatment or diagnosis; it is plainly subjective.<\/p>\n

Language used with and about patients is important and can cause needless distress when used without care. Why not let patients choose the language of their cancer-related identity so that it best reflects their own individual experiences and preferences? Existing research, including our own, suggests that the question is worth considering.<\/p>\n

\"\"\u00a0\"\" \"\"<\/p>\n

Leonard L. Berry<\/strong><\/em>
\nUniversity Distinguished Professor of Marketing, Mays Business School; Senior Fellow, Institute for Healthcare Improvement, Texas A&M University<\/em><\/p>\n

Andrea Flynn<\/strong><\/em>
\nAssociate professor of Marketing, University of San Diego<\/em><\/p>\n

Scott Davis<\/strong><\/em>
\nAssistant professor of Marketing, University of Houston-Downtown<\/em><\/p>\n

Note: This is an\u00a0authorized <\/em>repost of an article<\/a> in the conversationist\u00a0<\/em><\/p>\n

Photos by\u00a0Drew Hays<\/a>\u00a0on\u00a0Unsplash<\/a><\/em><\/p>\n