Tag: online collection

Campaign for Dignity in Dying

The Campaign for Dignity in Dying website features personal health narratives that share individuals’ experiences with terminal illnesses and their perspectives on end-of-life choices, including assisted dying. These narratives highlight the emotional, ethical, and legislative dimensions of facing death and advocate for the importance of patient autonomy in healthcare decision-making. See, for example, the stories by Sandy Briden (a scientist with a rare and incurable form of cancer), Lesley Close (sister to John Close, who was diagnosed with Motor Neurone Disease), and Heather McQueen (whose mother, Sheena, died from an incurable cancer).

The website can be a classroom resource for exploring topics related to end-of-life care, assisted dying, and the impact of legislative choices on patients and families. Students can discuss the limited accessibility to assisted death and the implications for patients with and without access to dignified death. The website and overall campaign are also a fruitful example of how personal narratives can play a role in advocacy for policy change.

Caregiver Stories

The Family Caregiver Alliance’s Caregiver Stories web page is a collection of personal narratives that shed light on the diverse experiences of individuals providing care to their loved ones. These stories capture the challenges, triumphs, and emotional journeys of caregiving across different situations and relationships. From spouses caring for partners with chronic illnesses to adult children looking after aging parents, each story offers a glimpse into the unique and often complex dynamics of being a caregiver. The narratives serve not only as a source of inspiration and empathy for those who might not be caregivers but also as a valuable resource for individuals seeking connection and understanding in their own caregiving journeys. This webpage addresses all different types of illnesses and caregiving dynamics, including Alzheimer’s, diabetes, cancer, autism, and so much more.

While there is no link to submit stories on the website, the stories seem to be provided by community members who are engaged with the family caregiver alliance. While they are urating the stories, there is quite a variety of types of stories, ranging from casual and blog-like to more formal articles. The communal aspect of this page allows the reader to search for what they’re looking for with keywords and categories.

One story provided is from a mother describing how she and her husband have cared for their daughter with complicated type one diabetes. Britani was a once-healthy young woman who, at 22, developed type 1 diabetes. Over the years since then, her health deteriorated, leading to unexplained and debilitating symptoms. Despite numerous visits to various medical institutions, their family was left without a clear diagnosis, and Britani’s condition continues to worsen. This narrative portrays the immense challenges faced by Britani’s caregivers, her parents, who juggle the responsibilities of caring for her while trying to maintain a life outside her health concerns. The toll on both Britani and her caregivers is evident, with hospitalizations, experimental treatments, and the constant struggle against physical and emotional pain. The story also touches on the financial strain, as the caregivers cannot afford to stay home full time and must continue working. Despite the hardships, their new granddaughter brings joy to their lives, too. Throughout peritoneal dialysis insulin shots, bathing, trouble sleeping, and more, Britani remains remarkably strong, facing each day with minimal complaints despite the unimaginable pain she endures. The caregivers express a deep love and willingness to sacrifice for Britani, highlighting the profound impact of chronic illness on both the patient and those who care for them.

Another story example is that of Lisa and her husband Richard. Their life, initially filled with love, family, and what Lisa describes as “vibrant Italian passion,” took a drastic turn in 1998 when Richard’s behavior and health began to change. Despite numerous attempts to find a diagnosis and solution, it wasn’t until a CT scan revealed the extent of Richard’s condition—his brain was shrinking, and a large mass was present. The couple faced the harsh reality of Early-Onset Alzheimer’s, and began attending classes and finding support from the Family Caregiver Alliance. The challenges escalated when their home caught fire, leading to the heartbreaking decision to place Richard in a facility dedicated to Alzheimer’s care. Lisa’s account is a raw and emotional portrayal of the toll this devastating disease took on their relationship and family. Richard’s passing eight months later left a profound void, and Lisa, in coping with overwhelming grief, turned to cooking as a form of self-care. Her book, “Good Grief Cooking,” is a resource she provides for those facing similar loss. Through her story, Lisa emphasizes the importance of seeking support, sharing experiences with other caregivers, and finding ways to navigate the complexities of grief.

The stories provided in the Caregiver Stories are a great resource for those who are currently caregivers to their loved ones, either looking to share their stories or hear stories from others. This website could be used in a classroom setting for students in healthcare looking to understand how to support and understand not just their patients, but the other people taking care of them.

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.

Please See Me

Online literary journal that features health-related stories in the form of fiction, creative nonfiction, poetry, and art, as well as the occasional film and interview. Issues include multiple works around a specific theme (e.g., Pain, Hope, Mental Health, Women’s Health). Work features voices of patients, providers and “healthcare consumers” from their own experiences and perspectives. Written submissions are 4000 word maximum.

Examples of featured works include: A mixed media art piece on pain, grief, and hopelessness from an artist dealing with loss and addiction (lil peep in Issue #2: Pain), a poem about medical debt (“Johns Hopkins Sues Patients, Many Low-Income, for Medical Debt” in Issue #9: Open Call), and a mother’s experience raising a son with intellectual disabilities and grappling with an Alzheimer’s diagnosis (Forgetting Aiden in Issue #1: Conversation).

Reflective MedEd

The “About” section of this blog explains its purpose as follows: “Reflective MedEd is dedicated to reflective practice in medical education and care of the person. We publish contributions that offer insight and illumination into the experience of educating the next generation of physicians. We welcome the thoughts of educators, patients, and all who foster awareness of the human dimension of doctoring and develop advocates for the just and equitable treatment of all patients.” Especially welcome are submissions that address “social justice and a concern for marginalized and vulnerable populations, the role of faith in medical practice, and ethical standards of decision making.” Reflective MedEd is supported by the Ralph P. Leischner, Jr., MD, Department of Medical Education at Loyola University Chicago Stritch School of Medicine.

Blog posts include both personal narratives and reflective essays from a variety of experiences and perspectives. For example: “How COVID Impacted my First Patient and Patient Death Experience,” “What I have Learned About Trust from Black Women,” and “The Wolf: How skeptical should we be of our patients?”

The Nocturnists

Podcast series created by physician Emily Silverman that focuses on humanizing medical practice through healthcare workers’ storytelling. Some topics: interview with author of a book on forced sterilization, “Black Voices in Healthcare” and “Post-Roe America”. Episodes run 35-55 minutes.

Front Lines: Poets & Physicians Document COVID-19

This project paired poets with NYC-area physicians to write poems as a way to provide space within and beyond the creative process for catharsis, shared understanding, and healing. The project started in spring of 2020 as a collaboration between two sisters–poet Elizabeth Fernandez and physician Nicole Fernandez. At the time I accessed this (8/11/22) there were 13 poems by 8 poets, written “for” 8 physicians. The poems (from June and July 2020 and October 2021) capture the experiences and emotions of these front-line health care providers during the early part of the COVID-19 pandemic.

Patients as Teachers Project

The Patients as Teachers program pairs two first year medical students with a patient to learn more about how illness affects a patient’s whole life. Students visit patients in their homes or other locations and learn about the impact of illness, patient coping and resilience, and positive and negative interactions with the health care system. The website has an archive of videos students have created about patient experience. For example, a video from 2020 interviews Jason Barup about his experience with clear cell renal carcinoma and also includes an interview with psychologist Michael Hayes, who worked with Barup through his diagnosis and treatment. The storyline puts Barup’s illness experience in the broader context of his identify as a runner. The videos could be used to provide examples of patient narratives (they cover a range of medical conditions). They can also prompt reflection on patient-provider communication and interactions with health care systems.

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.

Poems from Life with Juniper Village

Poems from Life with Juniper Village is a project developed in partnership between the Pennsylvania Center for the Book and Juniper Village Senior Living at Brookline. The goal is to share and celebrate the lives of Juniper residents with original, individualized poems presented by local poets. The website for the Senior Living community can be found here: https://junipercommunities.com/community/brookline-senior-living/ This 2022 site is the third year of the project, which is described here: https://crdpala.org/2019/03/20/poems-from-life-with-juniper-village-literature-links-communities/

The project illustrates the power of poetry as a form of narrative for honoring life experience and promoting well-being. It is also an illustration of a community-based project that utilizes narrative arts to celebrate community and seniors.