Is Oral History Good for You?

Taking Oral History beyond Documentation and into a Clinical Setting: First Steps

Abstract: What happens when medical science invites the humanities into its world? How do we, can we, measure and evaluate the qualitative process and product of oral history to quantitative researchers? Can we incorporate a quantitative tool into the oral history process to persuasively argue that some patient populations would benefit from the inclusion of a patient-centered, oral narrative intervention? This is the story of one effort to test the effectiveness of oral history interviewing in a clinical setting by its inclusion in a treatment program for veterans with prostate cancer. Prostate cancer is the most prevalent cancer in males, but currently there are no definitive treatment guidelines. This lack of medical consensus on treatment causes significant psychological distress for many patients, and, increasingly, medical professionals are interested in finding alternative ways to address their patients’ concerns. This paper concludes that exploring the efficacy of an oral history intervention is a worthy endeavor, particularly when there is no clear path toward healing. If it is determined that an oral history intervention benefits veterans with prostate cancer, might it not also help other patient populations with chronic or terminal illness?

Keywords: prostate cancer, qualitative intervention, QOL assessment, therapeutic intervention, treatment plan

Discussions among oral history practitioners about the potential therapeutic effect of oral history interviewing continue to be ticklish affairs. Many readily attest to their personal knowledge of the positive impact the interview experience can have on a narrator, while others strongly discourage any claim to a cause and effect relationship between the oral history interview process and personal benefit to the interviewee.1 The argument that oral history is good for you is not new. In the second edition of his seminal book The Voice of the Past, Paul Thompson refers to the “repeated discovery” of the “therapeutic dimension of life-story work”2 and asserts that oral historians “will learn — often through a third person — how being interviewed gave an old person a new sense of importance and purpose, something to look forward to, even the strength to fight off an illness and win a new lease of life.”3 Oral historian Mark Klempner extends this concept as he perceptively observes: “Our interview subjects may never visit a psychiatrist yet they will talk to us, and, in some cases, disclose things they have never shared with another human being.”4 Why the hesitation to recognize the therapeutic value of oral history? Perhaps, it is because the field has yet to agree on a reliable means, beyond anecdote, to demonstrate the therapeutic efficacy of the oral history interview.
This is an account of one effort to test the effectiveness of oral history interviewing in a clinical setting by its inclusion in a treatment program for veterans with prostate cancer. Dr. Charles Bennett, an oncologist at Northwestern University who specializes in the study and treatment of prostate cancer, had been involved in several initiatives to improve prostate cancer care at the Jesse Brown Veterans Administration Medical Center in Chicago.5
Prostate cancer is the most prevalent cancer in males and is often identified by a test that measures the amount of prostate-specific antigen (PSA), a protein generated by the prostate gland, in the blood. According to the American Cancer Society, “The chance of having prostate cancer goes up as the PSA level goes up.”6 Although a highly manageable disease for most patients, critical decisions have to be made about primary treatment, which may include surgery or radiation therapy. Following primary treatment, the patient's PSA levels are routinely checked. During this PSA monitoring, a number of patients experience a rise in their PSA, which is also known as PSA failure. PSA failure can cause significant psychological distress because there is no medical consensus on how to treat PSA failure, treatment options can range from “watchful waiting” to medical or surgical castration. Currently, there are no definitive treatment guidelines for men who experience PSA failure, and the National Comprehensive Cancer Network advises prescribing therapy on an individual basis.7
Confusion surrounding treatment choices and their effect on men diagnosed with prostate cancer has received a great deal of attention in the popular press in recent years. Titles of numerous New York Times articles over a period of eighteen months reflect the uncertainty faced by prostate cancer patients, for example: “In Prostate Cancer, Pick a Number, Any Number”; “A Review of Prostate Cancer Leaves Men in a Muddle”; “On Sex After Prostate Surgery, Confusing Data”; “Detection comes Earlier, and So Do Tough Questions”; “Deciphering the Results of a Prostate Test”; and “Profit and Questions as Doctors Offer Prostate Cancer Therapy.”8 As a result of this uncertainty, patients with PSA failure have reported substantial anxiety and have expressed interest in receiving psychological intervention to address their anxiety as well as other psychosocial issues.9
Bennett was familiar with work that had been done with written interventions in a medical setting and was intrigued by the findings.10 One study looked at the application of a written “self-disclosure” for older adults in a primary care setting.11 Another examined the effect of a narrative intervention on patients with asthma and rheumatoid arthritis and found measurable changes in physical and pulmonary function in those doing a written exercise in which they described their stress.12 As promising as these initial results have been, Bennett knew this method would be inappropriate for his specific patient population, one with significantly higher rates of economic distress, low functional literacy, and lower education levels than the general population.
Bennett had also learned of the Library of Congress' Veterans History Project (VHP)13 and was particularly interested in the oral history documentation component. His own experience at the Veterans Administration (VA) hospital taught him that patients were anxious to talk about their wartime experience but all too often died without ever having the opportunity to tell their story. Recognizing the limits of a written narrative intervention among patients with below functional literacy, Bennett believed that an oral narrative intervention rooted in the methodology of oral history was more appropriate to his patients.
In her illuminating book, Narrative Medicine: Honoring the Stories of Illness, Rita Charon argues for a new health care model that redefines the relationship between health care providers and patients and the role of the patient in his or her treatment.14 Oral historians may find the current scrutiny of the doctor patient dynamic from within the medical field curiously familiar as it echoes an earlier call from within their own discipline to “share authority.”15 Charon distinguishes narrative knowledge from scientific knowledge by “its ability to capture the singular, irreplaceable, or incommensurable.”16 Oral historians know this — collaboration is the essence of the oral history interview — the uniqueness of each story is the rationale for the discipline.
Since the 1930s, oral history has been seen primarily as a method of documentation and historical inquiry. As the field has grown, so has its role as an instrument of research and advocacy for underserved or ignored groups and causes. Although the published material on the therapeutic effects of oral narrative is limited,17 a few recent studies have incorporated oral history as a part of their patient treatment plan. Cautiously, some of these studies see a possible link between recounting one's life history and reduced depression.18
One study of World War II (WWII) veterans examined how oral history interviews could be used to meet mental health needs as “part of an ongoing effort to identify interventions that enhance the quality of life (QOL) of older adults in nursing home settings.”19 The study concluded that oral history was an effective way to establish a reciprocal and validating “therapeutic milieu” for residents.20 More recently, a few scholars and practitioners have been documenting the therapeutic potential of oral history for victims of trauma.21 Charon addresses this in Narrative Medicine: “The healing process begins when patients tell of symptoms or even fears of illness.... That illness and suffering must be told is becoming clear, not only in treating trauma survivors but in ordinary general medicine.”22
More common is the use of oral history to identify patient concerns that had been overlooked or ignored. Investigators have begun to explore the application of oral history as part of an overall treatment plan that enhances the traditional QOL assessment that focuses on the impact of the illness and its treatment on the patient's well-being. In a small oral history project involving lung transplant recipients, results from QOL research were compared to the information received through thirty interviews of lung transplant candidates and recipients.23 Although the oral histories fundamentally reinforced the conclusions of the QOL research, researchers also found that the interviews revealed new issues for study that the QOL surveys did not address. Among the issues were feelings of gratitude and guilt, the importance of “community” among lung transplant recipients, and the tendency of transplant recipients to minimize problems due to feelings of indebtedness.24 More recently, in a four-year study, the UCLA Interdisciplinary Pain Study Group used oral histories conducted with thirty-two patients at the Pediatric Pain Clinic to better understand the relationship between the treatment and the experience of children suffering from chronic pain. Not surprisingly, perhaps, their content analysis demonstrated that children experience and doctors treat pain from “two separate orientations... and employ two separate vocabularies to describe pain that are inescapably linked to these orientations.”25 These examples show that by allowing patients to speak for themselves, the oral history method permits a deeper understanding of how patients define and measure their own QOL.
Initially, Bennett's prostate cancer team proposed a study that would randomize patients with PSA failure into either a narrative intervention or a control interview prior to starting treatment at oncology clinics at the Jesse Brown VA center. The control interview would include a short feedback session about the patient's experience at the clinic. The narrative intervention would consist of a sixty minute session with an interviewer trained in oral history methodology and practice. The interview would focus on the patient's life, military service, and illness. All participants would be screened for post-traumatic stress disorder and have access to a psychologist. Finally, patients participating in the narrative intervention would also be asked if they would like to have their interview included in the VHP. The team hypothesized that participating in an oral history interview would be psychologically beneficial for veterans with PSA failure.
In response to the study proposal, grant reviewers at the American Cancer Society and the Department of Defense were wary of the hypothesis that participating in an oral history interview would be psychologically beneficial to veterans with PSA failure. One reviewer was concerned about the reliability of a dynamic intervention where consistency among interview subjects could not be controlled.26 Putting aside the evidence that other forms of narrative interventions have been shown to relieve stress, another reviewer believed that prostate cancer was too sensitive a subject and it would be “cruel to query” veterans about it. Additionally, the reviewer questioned how the interviewer would determine if the veteran needed the assistance of a psychologist and concluded that a “[b]road biographical narrative is too stressful at this time for this patient group.”27
Clearly, a means to demonstrate that an oral history interview would probably generate feelings of satisfaction and contentment rather than stress and anxiety was needed. The most accessible evidence, while persuasive, was primarily anecdotal. For example, Peter Bartis, Director of the VHP for the Library of Congress, said he was not aware of a single case in which participation in the project caused a painful response; he characterized the experience as “cathartic,” with “tears but no trauma.”28
What happens when medical science invites the humanities into its world? How do we, can we, measure and evaluate the qualitative process and product of oral history to quantitative researchers? Can we incorporate a quantitative tool into the oral history process to persuasively argue that some patient populations would benefit from the inclusion of a patient-centered, oral narrative intervention?
In response to the reviewers ' concerns, the team recommended the development of an anonymous survey in order to quantitatively measure how an interviewee felt about telling their story (Supplementary Appendix 1). Quantitative survey design poses particular philosophical challenges to the oral historian as it goes against the recommended rules of question formulation. Confirming or denying is for an interrogation, oral historians want to get at the complexities — the nuances, the exceptions — not the rules. It is not enough to discover if someone did or did not do something; oral historians want to know why or how it was done and how the interviewee felt about doing it. Asking an anonymous someone to agree or disagree with a list of statements goes against the most basic training principles of oral history.
The first draft of the survey was sent to veterans who had been interviewed by oral history students at Columbia College Chicago for the Library of Congress' VHP. The survey contained 20 statements where the respondent was directed to indicate his level of agreement or disagreement using a five-point scale. The first section included a number of statements about the conduct of the interviewer; the second section dealt with how the respondent felt about the interview experience. A third section contained a list of terms that the respondent could check off to describe the experience (or they could add their own terms). Finally, there was space for written comments.
In December 2006, twenty-two surveys were sent to veterans interviewed during the summer and fall semesters of 2006: sixteen6 were returned (73%). Thirty more were sent in June of 2007: sixteen were returned (53%), for a combined 60% response rate.29 Twenty surveys were completed by WWII veterans (65%), three by Korean War veterans (9%), and seven by Vietnam veterans (23%).30

Survey Response Summary (Supplementary Appendix 2)

Section Two (interview experience):

A. 83% agreed with: I looked forward to the interview.
B. 48% agreed with: The interview was the first time I had ever been asked to talk about my war experience.
C. 68% agreed with: The interview reminded me of things I had not thought about in a long time.
D. 35% agreed with: The interview brought up difficult memories.32
E. 97% agreed with: I am glad I participated in this project.
F. 97% agreed with: I would recommend the project to others.
G. 77% agreed with: Preserving the interview so others have access to it was important.
H. 84% agreed with: Participation in this project makes me feel better.33

Section Three (terms to describe the experience):34

I. 77% checked proud
J. 64% checked satisfied
K. 48% checked content

The sixty percent survey response rate is striking. It shows that the veterans were eager to extend their participation in the process. This is an important reminder to all who do research with the living: our “subjects” are also our collaborators and should be included in as much of the process as possible. The eighty three percent (A.) who reported that they looked forward to the interview directly contradicts the popular myth that veterans do not want to talk about their wartime experience. Perhaps they do not talk about it because they are never asked (B.). That eighty four percent agreed with the statement “participation makes me feel better” (H.) is particularly relevant to the development of an oral narrative for veterans with prostate cancer. Coupled with the 60% response rate, a strong argument can be made that the potential therapeutic effect of participating in a formal oral history interview on an individual's health needs to be researched further. Based on these preliminary results, one cannot go so far as to claim that participating in an oral history interview is psychologically beneficial to veterans, but it can be persuasively argued that veterans view the experience positively and have no feelings of regret, even when the interview brings up difficult memories and reminds them of things they had not thought of in a long time.
Building on the survey results, the prostate cancer team received funding to conduct a pilot study with a small group of patients with PSA failure at the Jesse Brown VA center. Between July of 2007 and January of 2008, seven veterans were interviewed. Of the seven, five were African American, one was white, and one was Latino. Three served in the Army, three in the Air Force, and one was a Marine. Five served during the Korean War, one in WWII, and one in Vietnam. The interviews focused on the patient's life, military service, and illness. Raw transcripts were prepared and content analysis completed. Scholars and popular historians have identified many of the salient themes of war memories. In his 1984 book, The Good War, Studs Terkel summarized the reoccurring topics from his WWII interviews: “exotic places and people — some from your own country — comradeship, smoking and food; as well as fear, confusion, chaos, and trauma.”35 Promoting his recent Public Broadcasting Service (PBS) documentary series, The War, Ken Burns refers to the repeated themes as the “universals of war: I was scared, I was bored, I was cold, I was hot, I did bad things, I saw bad things, I lost good friends, they didn't give me the right equipment, my officers didn't know what they were doing.”36 Thanks to this type of work and projects like VHP, we have wonderful resources that document the war experience from the perspective of the soldier. What we have very little of is the story of illness from the patients' point of view.
The preliminary analysis of the seven pilot study interviews identified several overlooked areas of concern to the patients with PSA failure, including the desire to avoid surgery as a treatment choice and feeling pressure to choose surgery. Veterans also talked about their willingness to discuss prostate cancer with others. While several were enthusiastic about talking about their cancer and the importance of education, one veteran spoke of the effect of prostate cancer on his ideas of masculinity. Another talked about having suicidal thoughts when told of his cancer and his recurring feelings of depression. 37 This early content analysis supports the argument that the oral history interview allows for a more thorough understanding of how patients define and measure their own QOL. The prostate cancer team was impressed with the ease with which the patients spoke in the interviews and the emergence of common threads on a range of issues related to prostate cancer treatment. Additionally, the team concluded that the patient-centered nature of the oral history process added a human quality to the sterile environment at the VA medical center. By sharing life experiences, patients felt more at ease in the VA oncology clinics, facilitating better patient-physician communication.
Hoping to mirror the Columbia College survey results, the team worked with a psychometrician at Northwestern University to adapt the original survey for the veterans with PSA failure. Several questions were eliminated or rephrased and a series of questions about the veterans' experience talking about their disease were added (Supplementary Appendix 3).38
At this point in the process, hard questions remain. Even if the PSA failure survey results echo those of the first survey, supporting the existing evidence that the telling of one's life story is a beneficial experience and that participation makes one feel better, the question of whether oral history is an effective intervention for a condition for which there is no medical consensus on treatment, like PSA failure, will not be definitively answered. It is quite possible that simply having the opportunity to tell one's life story to someone who is actively listening would make anyone “feel better.” Furthermore, if it is possible to verify that an oral history interview is a beneficial intervention for veterans with PSA failure, incorporating a narrative intervention into a care plan would be challenging. Personnel and equipment costs could easily prove prohibitive.
Nevertheless, exploring the efficacy of an oral history intervention seems a worthy endeavor when there is no clear path toward healing, and if an oral history intervention is determined to be of measurable benefit to veterans with PSA failure, might it not also help other patient populations with chronic or terminal illness? In the quest to transform patients from subjects to partners in the medical decision-making process, we need to find ways to make patients valued participants in their own care. Making a space for patients to tell their stories of illness in their own words is one way to achieve this goal. Patients are ready to talk — are we ready to listen? At the very least, oral historians and the Oral History Association should consider recommending the use of follow-up surveys as part of their principles and best practices.

Supplementary material

Supplementary material is available at The Oral History Review online.

Erin McCarthy is an associate professor of history in the Department of Humanities, History, and Social Sciences at Columbia College, Chicago, IL. She holds a master's degree in public history and a doctorate in U. S. history from Loyola University, Chicago, IL.

NOTES
1 Post-panel discussion, “Exploring the Therapeutic Benefits of Oral History,” Oral History Association Annual Meeting, 2007.
2 Paul Thompson, The Voice of the Past (New York: Oxford University Press, 2000), 183.
3 Ibid., 180 – 1.
4 Mark Klempner, “Navigating Life Reviews: Interviews with Survivors of Trauma,” in The Oral History Reader, ed. Robert Perks and Alistair Thomson (New York: Routledge, 2006), 201.
5 As of spring 2010, Charles L. Bennett, M.D., Ph.D., M.P.P., is the endowed chair of the Center for Economic Excellence in Medication Safety and Efficacy and the Josie M. Fletcher Professor of Pharmacy at the University of South Carolina campus of the South Carolina College of Pharmacy.
6 http://ww2.cancer.org/docroot/CRI/content/CRI_2_2_3X_How_is_prostate_cancer_found_36.asp? rnav= cri (accessed July 5, 2010).
7 Clinical Practice Guidelines in Oncology, Prostate Cancer, National Comprehensive Cancer Network, 1 (2008): MS-16, http://www.nccn.org/professionals/physician_gls/PDF/prostate.pdf (accessed July 5, 2010).
8 Burt Solomon, “In Prostate Cancer, Pick a Number, Any Number,” New York Times, August 26, 2008; Tara Parker-Pope, “A Review of Prostate Cancer Leaves Men in a Muddle,” New York Times, February 28, 2008; Tara Parker-Pope, “ On Sex After Prosate Surgery, Confusing Data,” New York Times, January 15, 2008; Gerald Secor Couzens, “Detection Comes Earlier, and So Do Tough Questions,” New York Times, August 29, 2007; Jane E. Brody, “Deciphering the Results of a Prostate Test,” New York Times, May 8, 2008; Stephanie Saul, “Profit and Questions as Doctors Offer Prostate Cancer Therapy,” New York Times, December 1, 2006.
9 S. Ames et al. “Auality of Life of Men with Biochemical Recurrence of Prostate Cancer. ” Paper presented at: American Society of Clinical Oncology Prostate Cancer Symposium; February 24–26, 2006; San Francisco, CA.
10 James Pennebaker, Opening Up: The Healing Power of Confiding in Others (New York: William Monroe, 1990).
11 Joshua C. Klapow, et al. “Symptom Management in Older Primary Care Patients: Feasibility of an Experimental, Written Self-disclosure Protocol,” Annals of Internal Medicine 134 (May 1, 2001): 905 – 11.
12 J. M. Smyth, A. A. Stone, A. Hurewitz, and A. Kaell, “Effects of Writing about Stressful Experiences on Symptom Reduction in Patients with Asthma or Rheumatoid Arthritis: A Randomized Trial,” Journal of the American Medical Association 281 (April 1999): 1304 – 9.
13 http://www.loc.gov/vets/ (accessed July 5, 2010).
14 Rita Charon, Narrative Medicine: Honoring the Stories of Illness (Oxford: Oxford University Press, 2006).
15 Michael Frisch, A Shared Authority: Essays on the Craft and Meaning of Oral and Public History (Albany: State University of New York, 1990).
16 Charon, Narrative Medicine, 45.
17 Mark Klempner, “Navigating Life Review Interviews with Survivors of Trauma,” The Oral History Review 27, no. 2 (2000): 67 – 83; Naomi Rosh White, “Marking Absences: Holocaust Testimony and History,” in The Oral History Reader, ed., Robert Perks and Alistair Thomson, 172 – 88 (New York: Routledge, 2004); Joanna Bornat, “Oral History as a Social Movement: Reminiscence and Older People,” in The Oral History Reade r, ed., Robert Perks and Alistair Thomson, 189 – 205 (New York: Routledge, 2004).
18 J. Wang and H. Hsieh, “Effect of Reminiscence Therapy on Depression in Older Adults: A Systematic Review,” International Journal of Nursing Studies 40 (2003):
335 – 45; L. Watt and P Cappeliez, “Integrative and Instrumental Reminiscence Therapies for Depression in Older Adults: Intervention Strategies and Treatment Effectiveness,” A ging Mental Health 4 (2000): 166 – 77.
19 L. B. Taft, et al., “ Oral History: Validating Contributions of Elders,” Geriatric Nursing 25 (January to February 2004): 38 – 43.
20 Ibid.
21 Erin McCarthy, Columbia College Chicago, Veterans' T.A.L.E.s (Talking about Life Experiences): Oral History as Intervention; Carolyn L. Mears, University of Denver, Oral History Research into the Aftermath of the Columbine Shootings; Anne Grenn Saldinger, Bay Area Holocaust Oral History Project, The Therapeutic Value of Testimony: Oral History as Intervention (papers for panel entitled: Exploring the Therapeutic Benefits of Oral History, Oral History Association, Oakland, October 2007).
22 Charon, Narrative Medicine, 65.
23 Mary Jo Festle, “Qualifying and Quantifying: Assessing the Quality of Life of Lung Transplant Recipients,” Oral History Review 29 (2002): 59 – 86.
24 Ibid.
25 Michael Nutkiewicz, “Diagnosis versus Dialogue: Oral Testimony and the Study of Pediatric Pain, ” Oral History Review 35 (2008): 15.
26 Peer Review Panel Summary Statement, Proposal Number: PC061378 — Department of Defense, 2006 Prostate Cancer Research Program.
27 Reviewers' comments, PSB06-07, American Cancer Society.
28 Phone interview, Peter Bartis, Coordinator, VHP, January 11, 2006.
29 One survey could not be used because the respondent did not remember being interviewed and was unable to complete the survey.
30 One respondent did not indicate which war he served in (3%).
31 See Appendix 2 for complete survey results, sections II – IV.
32 Interestingly, the breakdown by war shows that while 70% of Vietnam vets agreed with the statement, only 30% of WWII vets agreed and 0% of Korean War vets agreed.
33 Sixteen percent were neutral; no one disagreed with the statement.
34 No one checked regretful or uncomfortable. One person not only chose “sad” but also checked “proud” and “relieved”; one person added “amazed... at scope and depth of interview.”
35 Studs Terkel, “The Good War”: An Oral History of World War II (New York: The New Press, 1997), 6 – 7.
36 Elizabeth Jensen, “Another War, Another Epic From Ken Burns,” New York Times, September 16, 2007, 21.
37 Edwin J. Young (collection identification number yet to be assigned), VHP Collection, American Folklife Center, Library of Congress; Cesar Lee Martin (collection identification number yet to be assigned), VHP Collection, American Folklife Center, Library of Congress; Floyd G. Brown (collection identification number yet to be assigned), VHP Collection, American Folklife Center, Library of Congress; Alan D. Bryant (collection identification number yet to be assigned), VHP Collection, American Folklife Center, Library of Congress; Melvin Jackson (collection identification number yet to be assigned), VHP Collection, American Folklife Center, Library of Congress; Willie Frazier (collection identification number yet to be assigned), VHP Collection, American Folklife Center, Library of Congress; Richard Williams (collection identification number yet to be assigned), VHP Collection, American Folklife Center, Library of Congress.
38 As of late 2009, Institutional Review Board approval is pending.

Erin McCarthy
Correspondence to be sent to: E-mail: emccarthy@colum.edu