Seeing Patients with a Family Multimedia Video
Seeing patients also textures the multimedia video Terri made for her family. Since her early twenties, Terri has served as the collection point for her family’s photos and memorabilia. Pictures and other documents and artifacts would find their way to Terri, and she would compile and arrange them in the family album, sometimes labeling them and annotating them by listing the names of the people in the picture and indicating the event and the date. She would also copy them and distribute them to other family members.
Seeing patients as a nurse also textures this activity of documenting her family’s history. Created during a period when she was taking nursing courses in pursuit of her RN (Registered Nurse) degree at a rural community college, Terri’s 30-minute video titled Jeanne, Genes, and Jeans: A Breast Cancer Legacy is an engaging assemblage of old and recent family photos, interviews with her mother and her mother’s three sisters, and slides with information about cancer. Terri began creating the video for her family, but while making it she also decided that she would show it at an upcoming breast cancer awareness event at the community college she was attending at the time. Describing her video, Terri stated,
It’s a video where I took photographs of my mother and her family because of their genetic disposition to breast cancer, and I took photographs and then I just made "pagers" with data, you know, like PowerPoint slides with, like, these are the risk factors. So it’s kind of that with the science that I know blended in using the PowerPoint slides, like, you know these are the risk factors. Like when aunt [name omitted] says, “well I found this knot,” then there is a slide after that that says, you know, “Most lumps are discovered by women during a self-exam.” You know, just kind of a blending of the science that I know and their story. The soundtrack is them talking. … It’s, you know, these are their stories, these are the risk factors. This is personal, these are people that this has happened to. This is what they would say to you, and here’s where it connects to the science.
The photographs Terri featured in the video came from the family albums she had been compiling. The interview excerpts were garnered from a videotaped conversation between her mother and her mother’s three sisters gathered around her mother’s dining room table. For the “scientific” and technical information about cancer, Terri consulted a number of sources for the information she included in the video. As she stated,
I had this horrible fear of telling somebody something wrong, so I didn’t put anything in here that I didn’t look up. Some of it I just know, but I had to go back and look at what was being disseminated. So I went to the [websites of] the American Cancer Society and the National Institutes of Health and the CDC [Centers for Disease Control and Prevention] and the Breast Cancer Society to look at statistics, to look at treatment options, to look at recommendations for self exams and professional exams and mammograms and all that stuff.
We offer two brief clips assembled from scenes from Terri’s video to provide readers with a sense of Terri’s interweaving of science and representations of her family. The first silent clip (left) is assembled from scenes from the opening three minutes of Terri’s video, which consists of a title and introductory information followed by a series of old and more recent family photos interspersed with slides outlining cancer’s symptoms, risk factors, and statistical information about the occurrence of cancer among women. The clip features some excerpts from the video's introductory content followed by a sampling of Terri’s interweaving of family photos with statistical and other clinical information about cancer.
The second video clip (at the right) offers three brief excerpts from the remaining 27 minutes of Terri’s video. Throughout this portion of the video, Terri uses sections of a videotaped interview with her mother and her three aunts seated around the dining room table of her mother’s home. Two of these four women have at some point been diagnosed with cancer. Interspersed throughout the women’s conversations and comments about their experiences with cancer, finding out that they had cancer, telling other people about their diagnoses, receiving treatment for their cancer, and navigating their treatment are a series of PowerPoint slides (what Terri refers to as “pagers”) offering “medical” and “technical” information about cancer and its treatment. In the first excerpt, one of Terri’s aunts narrates her experience of discovering that she had an aggressive form of breast cancer, which is followed by three slides with information about self exams, clinical exams, and mammograms and how often they are needed. In the second excerpt, the same aunt discusses the importance of getting a regular mammogram, which is followed by a slide about treatments for Stage III cancer. In the final excerpt, two of Terri’s aunts explain the misconceptions they once had about detecting cancer, which is followed by a slide encouraging viewers not to become complacent in their efforts to detect cancer.
After showing the video at her community college’s breast cancer awareness event, Terri burned copies of the video on DVDs and gave them to members of her family for Christmas presents. At the time of our interviews, Terri indicated that she was planning to revise the video as a resource to educate patients about cancer. As she stated,
I am in the process of revising it [the video] to use it for patient teaching. The changes that I am making right now are geared toward patient teaching. You know, telling patients why does it matter that you do a self exam? Why does it matter that you have a mammogram? Because, you know, you can go into any OB-GYN’s office and you can find the pamphlets. But how many people read them? This [the video] is a little more personal.
And yet, Terri also indicated that she was happy just having made sure that later generations of her family had seen the video. As she stated, “[Name of one of her aunts featured in the video] is not going to be around much longer, and, if nothing else, I would like for what she said to be heard, and if it can help somebody else, then, you know, if I find a place for it, okay. If not, at least I know I’ve done it, and she can see it, and her kids can see it, and her granddaughter can see it.”
Seeing patients as a nurse is woven into the literate activity of documenting her family’s history. In particular, it informs the family video Terri created. Incorporating the “science” she knows about cancer into the activity of documenting her family history transforms her family members into persons with a history of cancer in their family and transforms the act of documenting her family history to tracing the history of cancer in their family. Traces of healthcare’s charter texts are interspersed among family photos and other representations. In turn, the video Terri created for her family laminates Terri’s seeing of patients as a nurse. It invites her to view the persons under her care as persons in need of medical information offered in an accessible form, the way one family member might talk with another about warning signs and what they mean, about treatment options, about what it feels like to find a lump, or about their experiences dealing with cancer, seeking treatment, and interacting with physicians. Through her blending of her family members’ images and stories and the science she knows, Terri’s video offers a perspective of those with cancer not merely as “patients” with a clinical diagnosis or as statistics, but as members of families that can provide support, understanding, and advice. It also makes a compelling argument for valuing family members’ experiences, insights, and advice about cancer, its warning signs, and its available treatments.