Tag Archives: disability studies

[AMA JOE From the Editor] “Nothing About Us Without Us”: Toward Patient- and Family-Centered Care

This article, excerpted here, is available in its entirety at the AMA Journal of Ethics

Around dinnertime on the second Tuesday of every month, a group of people gather in the Family Center at C.S. Mott Children’s Hospital in Ann Arbor, Michigan. Some are former patients, some are staff, and most are parents of pediatric patients, some of whom are deceased. They have been invited to share their perspectives and to help improve administrative decision making and care delivery.

I was first introduced to the concept patient- and family-centered care (PFCC) by this patient- and family advisory council (PFAC), an advisory body that promotes the inclusion of patient and family member perspectives in making organizational and practice decisions. As a student member over the past year, I’ve observed the dedication of these council members to improving health care culture by promoting PFCC values.

PFCC is built upon four fundamental principles: treating patients and families with respect and dignity, sharing information, encouraging their participation in care and decision making, and fostering collaboration in care delivery and program design, implementation, and evaluation [1]. At its core, PFCC is about including patients and families in all aspects of health care.

As part of a broader movement towards participatory medicine that advocates for collaborative partnerships in health care [2], PFCC means developing partnerships with patients and their families; recognizing their expertise by involving them as members of clinical care teams, advisory committees, and regulatory research boards; and promoting inclusion of patients and their loved ones in bedside and systems-level health care dialogues. Physicians can learn from patients and their families, and it is our responsibility to do so.

I first became interested in better understanding patients’ perspectives as an English major exploring disability studies and narrative medicine; I sought to understand persons’ health care experiences through their narratives. PFCC models of thinking encouraged me to broaden my scope and to appreciate the interconnectedness of patients’ and family members’ experiences. Although PFCC originated in pediatrics, the importance of families extends to all medical practice [3].

As I learned more about the tenets of PFCC and the many forms that PFCC takes in practice, I began to wonder about when and how striving to deliver inclusive care can be ethically complex. How should medicine accommodate families alongside patients, and what ethical challenges arise when trying to do so? Accordingly, this theme issue of the AMA Journal of Ethics considers some of the ethical challenges of implementing PFCC. In an attempt to make this issue as “patient- and family-centered” as possible, I invited feedback from the Mott PFAC and included patients and family members as authors…

 

Read the rest of this article at the AMA Journal of Ethics.

 

Leave a comment

Filed under Miscellaneous Musings, Narrative Medicine Research

Discussing Illness Narratives in Pre-Health Education at The Examined Life 2015

Round two in Iowa City has already been a blast!

I enjoyed stepping outside of the medical school world and back into my literature/medicine enthusiast role at The Examined Life conference, where I led a discussion forum about “Introducing Illness Narratives in Pre-Health Education.” I shared some background about the undergraduate class that I taught, Grand Rounds: Exploring the Literary Symptoms through Narrative, and led a discussion about the broader implications of such a course in pre-health education.

It was exciting and less anxiety-provoking than I anticipated to lead the session. The room was less than ideal, for it was more of a lecture setting that a discussion room, but we made the most of it by moving towards the center of the room and engaging in both small and large group discussions.

One comment in my session particularly stood out to me when someone challenged the very label “illness narratives”; instead, he suggested that if health really is a spectrum, they should be called “health narratives.” I found this to be an especially powerful point that questions how our own terminology may impact and “other” our perception of these narratives and people. If only changing such labels were as simple.

As always, I was struck by the diverse range of people that this conference attracts and the many personal experiences that have led people here. Special thanks to all who participated in my discussion, and I’m looking forward to taking a step back and enjoying the rest of the conference!

Grand Rounds: Course Overview

TEL-Grand Rounds overview final

Leave a comment

Filed under Grand Rounds, Narrative Medicine Research

1 Week till The Examined Life: Writing, Humanities, and the Art of Medicine

“There is art to medicine as well as science.” -Hippocratic Oath

I find myself thinking about this quote a lot throughout medical school. It reminds me of what initially fascinated me about medicine. While following the pre-medical track lends itself to a scientific foundation for medicine, my non-traditional experiences illuminated the art of medicine to me.

Last year, I found my place at The Examined Life: Writing, Humanities, and the Art of Medicine conference. I was excited to be surrounded by so many other people interested and actively working at the intersections of literature and medicine. These are people who are passionate about all things related to healing and medicine, reading and writing, learning and educating. And I am thrilled to have the opportunity to attend this conference once again, one week from today.

Last year, around this time, I was teaching a mini-course called Grand Rounds: Exploring the Literary Symptoms of Illness through Narrative. This year, I will be leading a discussion forum about this course and about what implications it may have for the use of illness narratives in pre-health education. As I’ve been preparing for our session and sifting through course materials and relevant scholarship, I’m reminded of how much I miss teaching. It won’t be quite the same as leading one of my discussion classes, but I’m really looking forward to the conversations to come.

As a flashback to last year’s presentation: I will also have hard copies of Chronicling Childhood Cancer: A Collection of Personal Stories by Children and Teens with Cancer available for sale this year!
Screen Shot 2015-04-04 at 1.12.22 AM

Leave a comment

Filed under Chronicling Childhood Cancer: Illuminating the Illness Experience through Narrative, Grand Rounds, Narrative Medicine Research

Untold Stories, Unheard Lives: A Study of How Adolescents with Cancer Create Selfhood through Narrative

Since the upcoming release of my book Chronicling Childhood Cancer: A Collection of Personal Stories by Children and Teens with Cancer is just around the corner (8 days!)– my thesis is available at http://deepblue.lib.umich.edu/handle/2027.42/107767. It was truly an honor for me to be nominated and chosen as a recipient of the Virginia L. Voss Memorial Award for academic writing for this research.

My thesis provides more information about my research methodology as well as the scholarly relevance of these narratives. I wanted to make it available here to all those who may be interested in learning more about how these narratives were collected, what we can learn from these adolescents, and what we can do with these narratives moving forward.

Below is the abstract for my thesis:

Illness narratives, especially those about cancer, have become increasingly prevalent in recent years in an attempt to communicate experiences with illness. Yet amongst cancer narratives, experiences of childhood and adolescent cancer have largely been left untold. Stories shared about youth with cancer have mostly been written from other perspectives such as by parents, health professionals, or public relations personnel, but rarely from an adolescent’s own view. While some memoirs confront cancer retroactively, such as Lucy Grealy’s Autobiography of a Face, few or none are written by adolescents as they are currently experiencing cancer.

This thesis aims to fill the void of narratives by adolescents with cancer. Since cancer is a living reality for so many adolescents, it is troublesome that these youth have not had the opportunity to give voice to these experiences. It is problematic, I argue, not to listen to these often unspoken voices, for they can provide insight into marginal experiences as told by the ill. These narratives can reveal the subjective illness experiences of a diverse population.

My thesis explores how adolescents with cancer at the University of Michigan C.S. Mott Children’s Hospital express their experiences through writing, drawing, and speaking about cancer. I sat down with adolescent patients and asked guiding questions that they responded to through any or all of these mediums. These narratives illuminate how adolescents make sense of their cancer and treatment as well as how these understandings affect their developing sense of self.

My introduction begins by tracing the history of illness narratives and autobiographies about childhood to understand the current void, and thereby the urgency, of life writing by adolescents with cancer. In the first chapter, I delve into my research methods and the ethical concerns that arise with adolescent involvement and researcher intervention. I acknowledge how my methodological approach has in effect influenced the creation of these narratives.

Chapter two explores how adolescents define cancer and chemotherapy. While many defined cancer as a disease, elaborations often deviated to include but also challenge perceptions of cancer as an uncontrollable excess, an impairment or disability, and an evil. Many perceived chemotherapy similarly and sometimes struggled to distinguish between the two. I navigate through these blurred understandings, ultimately to recognize their implications on adolescents with cancer.

Building off these perspectives, the third chapter investigates how experiences of cancer and chemotherapy affect an adolescent’s sense of self. Narrative exposes conceptualizations of the self, specifically pertaining to the period of adolescence, the body with cancer, the self as a patient, the desire for normalcy, and the self as a social being.

In the fourth and final chapter, I expand the implications of my interactive research methodology and of these adolescent cancer narratives. I consider the broader impact my research may have on narrative studies, medicine, and the interdisciplinary fields of medical humanities and narrative medicine. Most importantly, this thesis enables adolescent agency and allows these individuals, with personal and intimate experiences of their own, to enter into the discourse that surrounds their lives.

Leave a comment

Filed under Chronicling Childhood Cancer: Illuminating the Illness Experience through Narrative

Week 5: Embracing Illness- (Dis)Ability in the Blogosphere

Learning about autism in an English class was one of my early experiences with the intersection of literature and medicine. This week, it was especially challenging to condense a semester’s worth of studying autism and disability studies into a 1.5 hour class period. Nevertheless, I do think that it was one of the most enlightening class discussions thus far.

There seemed to be something different about our discussion this week. Autism seemed much more relatable, and more students evoked personal experiences with autistic relatives and friends. A number of students expressed feeling that there was much more to explore about autism, and they have decided to delve deeper into autism for their final projects (which I will discuss more in a future post).

This week, I was also observed by an advisor from the Honors College. I told my students that my goal was to get her to participate in our discussion, and I’m happy to say  that we were successful! The class was very engaged; there were a number of moments where multiple students had their hands up, eager to participate.

When class was over, I left the room with a refreshed appreciation for this teaching opportunity. Each of the students (and my advisor) left with a new perspective on autism. In a world where everyone is touched by disability and/or illness in some way, I continue to believe that this kind of awareness is absolutely essential.

Lesson Plan Week 5

Leave a comment

Filed under Grand Rounds

New Models for Embodying Disability

Yesterday was International Day of Persons with Disability. In Zurich, the disability organization Pro Infirmis celebrated with mannequins sculpted after people with disability. “Because who is perfect?”

A simple, compelling work of art. This film and the project it reenacts both encourage us to remember disability. To pause. To reconsider societal ideas about the normal and abnormal body. To respect the vast array of differences that make us human.

What most fascinated me were the responses of passersby. Most halted in their tracks and did a double take. Some seemed confused and uncertain about whether what they were seeing was real. Perhaps these reactions exemplify how much farther we have to go in raising awareness and appreciation for disability.

Integrating disability into how we represent and mold our bodies is one more step forward.

Leave a comment

Filed under Film, Miscellaneous Musings, Theatre, Visualizing Illness