Tag: patient narrative

Listening to Patient Narratives Exercise: Anju’s Breast Cancer story

This is an outline for a class exercise utilizing a video from the Look Now Project. The short documentary tells Ajnu’s story of treatment for breast cancer.

The class exercise is part of a one-hour session entitled “Between the Lines,” part of a training by the Northwest Narrative Medicine Collaborative in collaboration with Lewis & Clark College, which brought together undergraduate students, medical students, and medical professionals for a one-day workshop. In the “Between the Lines” session, we examined how clinical interactions are framed by medical scripts and encourage changing these frames to make room for patient stories. Then we engage in practicing listening closely to patient stories for what is said, how it is said, what is not said, and how our own experiences and identities shape what we hear.

La historia de Bill

This CDC-based cautionary tale about the dangers of smoking involves a Michigan man who was diagnosed with diabetes as a child. It stresses how angry Bill is to have accepted the first cigarette as a teenager, given the complications for diabetes caused by smoking. At 37, he lost sight in his left eye and later had kidney failure. Two years later his leg was amputated due to poor circulation, which motivated him to quit smoking. He nonetheless died of cardiac disease at age 42. A 5-7 minute read for intermediate level Spanish speakers – written in simple past tenses – it leans heavily into the cautionary tale of not smoking. It also gives vivid details of how much worse smoking is for diabetics, giving a starting point for discussion of both smoking and diabetes. Usable in mid-level medical Spanish courses, composition or conversation; stylistically might not be very compelling as a health narrative.

The CDC website where this written narrative is posted also offers an English translation and biography of Bill.

Familia conoce a mujer que recibió corazón de hija con VIH

Shaffrey describes the life of a woman, Brittany Newton, who suffered from a heroin addiction and died when she was 30 years old. She was also HIV-positive–for many years, doctors have transplanted organs from one HIV-positive person to another. This happened in the case of Brittany’s donated heart, and Brittany’s family was able to hear her heart beating in Maria’s, the transplant recipient’s, chest. 5 minute read, appropriate for upper intermediate Spanish learners.

Pulse- Voices from the Heart of Medicine

Pulse- Voices from the Heart of Medicine is an online publication that features stories, poems, haikus, and visual works from various voices within the healthcare field. Stories come from health care providers in various roles and from patients and family members. For example, “Cultivation Also Starts With C” is a poem that uses the invasive, difficult to remove plant Japanese knotweed as a metaphor for cancer and “Another GSW” details a young doctor’s encounter with a patient who had extensive injuries from a single bullet wound, and how the experience made her consider the ramifications of gun violence in America.

Length of items ranges from 40 to 400 words for written works. Each month’s issue is on a theme (recent examples included Alone, Coming Undone, Unsung Heros) and the “New Voices” section features “stories by those whose faces and perspectives are underrepresented in media and in the health professions.”

The website offers several ways to search. For example, one can click through content by year, all the way from 2023 to 2016. When you click on a story, you can also see a lengthy list of “popular tags” that you can click on to search by subject matter. The “visual works” tab includes an option to see a slideshow of submissions, as does the “haikus” tab, which could be helpful for more efficient browsing. Other notable features are that the stories and poems tabs display a phrase from each submission as an attention-getting preview. Similarly, the “more voices” tab displays a themed photograph with each submission.

Film can help us look disability in the eye.

This editorial (2 pages plus 4 links to videos) argues that US Americans are uncomfortable with disabilities and that filmmaking can make it easier for them to do so. The author tells his story of being misunderstood and having awkward interactions many times because of his condition (medical name not given) that he calls “whale eyes:” misalignment of his eyes so people can’t tell where he’s looking. He started by making a film his senior year in college to show his family how the world looks to him and how he works around his condition to read, write, cook, and navigate the world. From there he started making more films with disabled people – one with face blindness, another going blind, a stutterer – so they could tell their stories in similar ways. Videos linked to the article are 8-12 minutes long and all focus on “experiencing” the disability: See what the face-blind person experiences (recognizable faces are shown upside down and sure enough, you can’t identify them). Listen to the stutterer actively filtering out their fluency issues with an imaginary machine called a “Listenometer.” Useful as insight into non-medically focused stories of disabilities, or as examples for a digital storytelling activity.

A Strange Relativity: Altered Time for Surgeon-Turned-Patient

This is an 8 minute video made by Stanford neurosurgen and author Paul Kalanithi before his death. He reflects on the experience of time–as a physician, seeing patients and monitoring time and now, as a person with cancer and the parent of a baby.

The video could be used in a course in which Kalanthi’s book is assigned, to give students an opportunity to hear his reflections in his own voice and to see images of him with his family. It is also an example of the larger issue of what physicians notice about medical practice when they become a patient themselves.

2020 was One of the Best Years of My Life

Inêz Mália Sarmento is disabled autistic author who describes how her experience during the pandemic included growth and development. “It helped me understand even more that the world was ready, it just wasn’t using its resources the right way, meaning, the world could be accessible for everyone if we wanted it to be. That made me feel a bit resentful. But it also gave me the fuel I needed to keep pushing against the grain.” As a result of this access, she finished high school, began college, and made friends. She questions “going back to normal” and reducing these services.

Look Now Project: Survivor Stories

This digital humanities project includes stories and images of breast cancer survivors. Project creator Tula Goenka (a breast cancer survivor) and her collaborators seek to “break down the barriers between a survivor’s public persona and their private struggles with the disease, and to put a face on breast cancer in our local community.” The first installation in 2018 included interactive text, graphics, mirrors, and an experimental silent film accompanying 25 participants’ clothed photographic portraits and images of bare chests, and 19 who chose to remain anonymous except for their bare chest close-ups. In 2019, Goenka and her collaborators created TitBits: Breast Cancer Stories, a documentary theater performance. The multi-media website includes media coverage of Look Now and TitBits, oral histories, images of bare chests after lumpectomy or mastectomy, and resources on breast cancer.

I have used Anju’s story (“Life Happens Keep Smiling”) from this website in a Narrative Scribe Training workshop for college students, medical students, and health care professionals. After viewing the video together, we discussed what may be left out of a transcript and the importance of listening closely not only to what is said, but also how it is said, what is not said, and how our own experiences and identities shape what we hear.

Dancing With Broken Bones: Portraits of Death and Dying Among Inner City Poor

Author David Moller makes the case that the dying poor are doubly invisible, shunned for being poor in an affluent society that denies death. “This book is about providing a face and offering a voice to speak on their behalf.” It includes stories about homeless and poor individuals and their experiences with end-of-life care (or lack of care). It portrays both their social isolation and suffering and their resilience and humanity. The author retells individuals’ stories and these could be excerpted.

Patient & Family Storytelling: Real People. Real Experiences. Real Impact.

This Alberta Health Services website lists 107 videos from patients and their families. There is a brief description of each video (e.g., the health condition, who tells the story, what larger issue or point the story illustrates). It is possible to search the collection (e.g., for stories related to “cancer”). Some examples of health narratives on this website include:

Rose’s Story: Joy and Grief, a look into how healthcare providers can help us navigate tragedy and foster healing. Rose explores the impact and experience of the stillbirth of her son and daughter. (The website includes a content warning.)

B’s Story: Learning to B myself, a story about the challenges of occupational stress, gender identity, mental health, and transgender advocacy from a rural context.

Jeraldine’s Story: There is Hope, a story of the experiences of an Indigenous woman who experiences the ramifications of intergenerational trauma. This story advocated for Canada to provide culturally appropriate healthcare to indigenous populations.

Although produced by a health care system, these videos give more voice to patients and family members than is often the case with these kinds of collections. They are well-produced and many address the experiences of historically under-served and marginalized populations.