Volume 3 Issue 2 is Now Available on Project MUSE

Please see the table of contents for Narrative Inquiry in Bioethics 

This issue contains a narrative symposium: The Many Faces of Moral Distress Among Clinicians, edited by Cynda Hylton Rushton and Renee Boss. This symposium highlights stories from Clinicians about moral distress faced in their work and work environments and how they handled it.These stories are the focus of four comentary articles by 

The issue also contains two research articles. The Content of Hope in Ambulatory Patients with Colon Cancer by Emily S. Beckman, Paul R. Helft, Alexia M. Torke.

Analyzing Reflective Narratives to Assess the Ethical Reasoning of Pediatric Residents by Margaret Moon, Holly A. Taylor, Erin L. McDonald, Mark T. Hughes, Mary Catherine Beach, Joseph A. Carrese

There is also a Case Study called, A Case of Deceptive Mastectomy, by Rebecca Volpe, Maria Baker, George F. Blackall, Gordon Kauffman, Michael J. Green

Don't forget:

Narrative Inquiry in Bioethics has a new website.

http://www.nibjournal.org/index.html

 

50% off all new journal subscriptions!

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End of the Tunnel

A story about living with the label of "disability". The symposium on that topic (in NIB 3.3) will be out in December of 2013. 

By M. Sophia Newman

Sleeping during a Norwegian summer can be nearly impossible. The country lies on the far northern edge of our titled, rotating planet. In summer, nightfall is meaningless: pink twilight can fade to pale gray night and reverse to peachy dawn within tow hours. Inside the Arctic Circle, even that brief twilight is absent--the sun is out continuously for nearly three months. Without sunset, the brain, which normally reacts to darkness like a bird with a blanket over its cage, cannot figure out when to sleep. It become easy to lie awake on the sofa, gazing at the sky.

Back home, on a dark night months before. I had been on another sofa with a handsome friend. Three days before, he'd asked me out. I'd been flattered. He was an advanced student in the martial arts school where we'd met, and I liked his bold generous laugh.

Three days later, I had started training in martial arts after surviving a violent attack, which had given me post-traumatic stress disorder (PTSD). I had shared my story to explain how victim-blaming can be as harmful as abuse, convincing the school to improve information on stigma in its self-defense curriculum. But I'd noticed my friend had been unsettled by my personal disclosures. Here on his sofa, I realized his fears weren't fully resolved. 

 To answer them felt easy. The traumatic violence was eight years in the past. My friend was a doctor, so there was no need to explain the symptoms: irritability, expectations of harm, inability to focus, sleeplessness. I merely said they were all past tense. I had gone from victim to survivor to quiet advocate, trading personal pain for social insights. 

"It's not that I've seen the light at the end of the tunnel," I told him. "It's that I've reached the end of the tunnel and set of running through fields of flowers in the sunshine."

"Hmm," he said, perhaps critiquing the metaphor's schamltzy quality. He paused, and then-as if working to believe me--said, "You are more jovial than most people with this problem."

"I've turned back into the person I was supposed to have been all along," I said.

"Hmm," he murmured, disbelieving. I could feel our date crash-landing.

I considered this my main disability: not my illness, but his disbelief. I felt my statements about my own well-being were as credible as anyone's. But my friend seemed to regard my trauma as a permanent fragility, despite my statements to the contrary. Perhaps he mislabeled my hard-won happiness as misguided, willful naivete. It didn't matter much--rather than the condition itself, it was his stigma that bound me. 

I worried over him until I went to Norway months later. The vacation, though, wasn't about fleeing him. I had come to see friends, and to run a half-marathon in the Midnight Sun Marathon festival. 

The race was in a beautiful town called Tromso.   The town sits on a small island surrounded a winding freshwater estuary, sheltered from the Arctic sea by a peninsula of lichen-covered mountains. The town is the largest this far north, but it is tiny. The island has room for stands of birch and open fields of thistle and Queen Anne's lace. Overhead, the polar summer sun flitted through a tight circular path, rather than its usual arc between horizons. 

On race day, we ran under a sunny late-night sky. Long-distance running demands almost nothing but persistence. Runners, no matter how nimble, can feel overwhelmed by raw exertion. A few miles into the first race of my life, I felt deep fatigue.

But it lifted when I remembered that this race proved how well I was. Earlier in my life, physical exertion had been a reliable way to elicit flashbacks, the ultra-vivid memories that characterize PTSD. This was a quirk of how my damaged brain reacted to biochemicals released during exercise. No clinician had ever been able to advise me, but I had used the fluke to heal--running until memories overwhelmed me, and then soothing myself, rewriting my perceptions of the past. It had worked. Now I could run until I was fatigued, not until I was frightened. My brain had heeled. 

Eight miles into the 13.1 mile race, I ran through a low underpass. Then, what I had said to my friend on his sofa suddenly became literal: I was running out the end of the tunnel and through a field of flowers in the clear sunshine. It wasn't a schmaltzy metaphor, but a reality so clear and profound-and silly-I began to laugh out loud. I smiled until I crossed the finish line just after midnight.

Later, I reconsidered my friend. The midnight sun is a phenomenon hard to believe. The idea that the sky could be consistently dark and then relentlessly light was rationally true but strange-feeling. To my friend, I was the same way. I had been all dark in illness, but all bright and sunny now. To him, it was unbelievable. 

He was a doctor, and I found his incapacity strange. But he had just passed through a terrible relationship with someone for whom mental illness was deeply disabling. Perhaps, he, too, was in his own endless darkness, where steady sunlight was a bewildering thought. 

Irrespective of my friend's errors, it was wrong to impose stigma on disabled people. It's even more wrong to insist a person remain stigmatized when the disability has already been resolved. The problem, in the end, was his inability to see my human qualities beyond my PTSD, me as I really was. 

Running in Tromso, I realized the misbelief was his problem, not mine. In my head, I wished him well. And far and away, across fields of wildflowers under that astonishing sun, I ran off towards my own life.

 

 

New Call for Stories

Narrative Symposium: Religion in Medical and Nursing Practice

 

Narrative Inquiry in Bioethics will publish an issue focused on stories about how healthcare providers integrate their faith into their practice. We are interested in the perspective of healthcare providers from diverse religious backgrounds. We want a broad range of stories that extend beyond traditional settings for integrating religion and clinical healthcare.

In writing your story, you may want to consider these questions:

• Have you ever prayed with or offered spiritual support to a patient? Why? How did it go?
• How have your religious convictions affected your practice of medicine or nursing?
• How has your clinical practice affected your religious development?
• Have you faced any problems involving peers, the law, chaplains, patients, or others, based on your integration of religion into clinical care?
• How does your institutional setting affect your integration of religion and medicine?
• How would you recommend that healthcare providers integrate their religious conviction into their practices?

You do not need to address each of these questions--write on the issues you think are most important to share with others. If you are not a writer, tell your story in your own words and our editorial staff will help you.

If you are interested in submitting a story we ask you first to submit a 300-word proposal-a short description of the story you want to tell. Inquiries or proposals should be sent to the editorial office via email: narrativebioethics@gmail.com.  We will give preference to story proposals received by September 16th of 2013.

We plan to publish 12 stories (4-10 double spaced pages or 800-2,000 words) on this topic. Some additional stories may be published as online-only supplemental material. We also publish 2-4 commentary articles that discuss the stories that are published in the journal. To see a finished symposium you may access Narrative Inquiry in Bioethics, volume 2, issue 1, on living organ donation for free on Project MUSE.

Volume 3 Issue 1 of Narrative Inquiry in Bioethics is now available

Please see the table of contents for Narrative Inquiry in Bioethics 

This issue contains a narrative symposium: Taking Bioethics Personally, edited by Tod Chambers. This symposium highlights stories from bioethicists about their own illnesses or the illnesses of family or friends.

The issue also contains two research articles;  The Protectors and the Protected: What Regulators and Researchers Can Learn from IRB Members and Subjects by Ann Freeman Cook, Helena Hoas, and Jane Clare Joyner and Reason for Hospital Admission: A Pilot Study Caomparing Patient Statements with Chart Reports by Zackary Berger, Anne Dembitzer, and Mary Catherine Beach.

There is also a case study by Erica K. Salter called, Should We Tell Annie? Preparing for Death at the Intersection of Parental Authority and Adolescent Autonomy.

Don't forget:

Narrative Inquiry in Bioethics has a new website.

 http://www.nibjournal.org/index.html

50% off all new journal subscriptions!

http://www.nibjournal.org/subscribe/index.html

My Son is Not a "Write-off"

Barbara MacArthur shares her story about parenting her ASD child in the 1970's. 

 

When he was a child, Howard, was diagnosed as profoundly autistic and asthmatic: "Just one of those things," the doctors said. One told me he was "a write-off" and "Stop sacrificing yourself put him in an institution and forget him" 

Howard was a noisy, awkward child. Everything was slow--and fractions. I had to chop up a wooden playpen and nail the bars against the bedroom window because he would climb on the sil and push hard against the glass. Once when I picked him up quickly to save him from danger he head butted me and chipped my two front teeth. At 3 a.m. one morning Howard hit me in the eye with a metal bus to wake me up. I had to go to work with a black eye and a cracked nose. 

I always had to work. My husband never supported us and I did not know where he was. He left unexpectedly when I was five months pregnant. In 1973 we received an official letter to say he had died in Manchester. He had never remarried, but nothing was left except just enough to pay the burial expenses. I had managed to buy an old house with a dodgy roof, no bathroom and an outside toilet. It was all I could afford and it took me ages to get rid of the cockroaches, beetles and mice. I managed to carry out repairs myself until I saved enough to pay for proper repairs.

The stigma of being a divorcee with a child with learning difficulties was very strong, and we were regarded as less than second-class citizens. Because of his hyperactivity, screams and tantrums, people thought he was a naughty child with a bad mother. In supermarkets he would go behind the counters and switch any switches on or off, or pull trays of good to the floor. Could you blame the staff for threatening to ban us? If the bus home ever deviated from the usual route he would try to jump off while the conductor and passengers would remark: "Why don't you control that effing boy! Women like you shouldn't be allowed to have children. You should be sterilized." Even doctors did not seem to understand autism and no support was available. I came to believe that what people said must be true; sometimes I used to feel that people were stepping all over me with heavy boots, and that I was beaten down into the pavement. 

I am proud of my son for what he has achieved. He will always be autistic and considered by many as being 'eccentric' or a 'bit odd', but he is popular and has a tremendous sense of humor. Some years ago we signed on for computer courses. My son became so proficient that the tutors nicknamed him 'cyber-junkie.' We both lost education in our youth--me at 14 because my school was gutted by explosive incendiaries during WW2--my son because he was refused admission to any school until he was 10 because he could not speak until then. The Education Department wrote "the medical officer and the educational psychologist have decided that Howard has such a disability of mind as to make him incapable of receiving education."

For 17 years I was full-time career for three people--my elderly parents and my son. My parents gave up their Council flat and lived with us. They died within a month of each other--both in their 90's, in our home, leaving just enough money to cover cremation expenses.

My son and I gained Computer Science qualifications. Howard graduated from University in 2003--Computer Science. Now I am nearly 87 and still Howard's only career. I enjoy time on my own. Go to bed late and watch a late-night film. Tonight as I write, he is in bed and I have just put out the rubbish. He helped earlier by emptying waste-paper baskets around the house, so it is teamwork. But he is often in his own world in his mind. I worry what will happen to Howard when I die. We have our own home and Howard would want to remain here. Howard loves his home and is happy here; it would break his heart to be moved. 

We survived despite the system--not because of it.  

New Website and 50% off subscriptions to NIB!

Narrative Inquiry in Bioethics has a new website.

 http://www.nibjournal.org/index.html

50% off all new journal subscriptions!

http://www.nibjournal.org/subscribe/index.html

We are so excited about our new website and all the great information and resources it makes available. We are also very pleased to be able to offer the journal at an extraordinary low price. Our goal is to make Narrative Inquiry in Bioethics accessible to everyone.

Please share this offer with anyone you think might be interested.

Narrative Inquiry in Bioethics News

We would like to welcome John T. Chibnall, PhD, Department of Neurology & Psychiatry, and Health Disparities Research at Saint Louis University to our Foundation's Board of Directors.

We would also like to welcome Arthur W. Frank, PhD, Department of Sociology, University of Calgary and Eric Racine, PhD, Neuroethics Research Unit, Institut de recherches cliniques de Montréal, Université de Montréal, and McGill University to our Editorial Board. 

We are very fortunate to work with some wonderful people on both our Foundation's board of directors and the journals editorial board. Many thanks to all of you for your support and encouragement! 

In Other Words: Narrative Inquiry in Bioethics

Johns Hopkins University Press just finished a video highlighting Narrative Inquiry in Bioethics. Thanks to Janet Gilbert and her team - great work! http://www.youtube.com/watch?v=E9jK_m6a5wk&feature=youtu.be

This is a great way to share with people just what NIB is trying to do!

Confronting Pediatric Brain Tumors: Parent Stories

Confronting Pediatric Brain Tumors: Parent Stories

Edited by Christy A. Rentmeester and Gigi McMillan

Narrative Inquiry in Bioethics will publish an issue devoted to personal stories about the experiences of parents caring for children with brain tumors. Please include diagnosis and treatment; other important phases of the journey, which track the child’s acute and long term recovery from treatment, long term quality of life issues, possible recurrences of tumors, and possible end-of-life issues. We would like stories from mothers, fathers, and other guardian caregivers. We are looking for true, personal stories in a form that is interesting and easy to read.

In writing your story, you might want to think about:

• Sharing a description, the circumstances, your feeling and skills you had (or wished you had) as you faced the following situations: A) Diagnosis B) Treatment C) Acute Recovery D) Long-Term Quality of Life E) Recurrence F) End-of-Life
• If you were enrolled in a research study, what was that like for you and your child?
• How did you communicate the diagnosis, treatment and outcome scenarios to your child and family?
•   What support systems did you find that met your needs?
• Looking back on your experiences, what do you wish had been different? How might these aspects be addressed?
• What advice would you offer to other families who might face similar circumstances?
• What suggestions would you offer to medical caregivers or researchers?
• How has this experience influenced you, your child and your family?

You do not need to address each of these questions—write on the issues that you think are most important to share with others. If you are not a writer, just tell your story in your own words and our editorial staff will help you.

We plan to publish 12 brief stories (800 – 2000 words) on this topic in the print edition of the journal. An additional 6 stories will be published as online-only supplemental material and other stories may be posted on our online Forum. We also publish 2-4 commentary articles that discuss the stories in the journal. To see a finished symposium you may access Narrative Inquiry in Bioethics Vol. 2 issue 1 for free on Project MUSE.

If you are interested in submitting a story, we ask you first to submit a 300-word proposal—a short description of the story you want to tell. Inquiries or proposals should be sent to the editorial office via email: narrativebioethics@gmail.com. We will give preference to story proposals received by April 30, 2013.

For more information about the journal Narrative Inquiry in Bioethics, the guidelines for authors, and
privacy policies, visit our webpage with Johns Hopkins University Press at: http://www.press.jhu.edu/journals/narrative_inquiry_in_bioethics/guidelines.html

Award Winning Journal

Exciting News!

 

Narrative Inquiry in Bioethics: A Journal of Qualitative Research received the Honorable Mention (2nd place) for Best New Journal of 2012 in Science, Technology, and Medicine from the PROSE Awards. 

The journal is edited by James M DuBois and Ana Iltis and published by Johns Hopkins University Press. 

We are very grateful to all the people who have helped us make this journal a reality. Our editors, board of directors, board of advisors, JHUP, The Bander Family Foundation, symposium editors, and all our wonderful authors, Thanks! 

Please let everyone know that all six issues (Volumes 1 and 2) are now available on Project MUSE. Vol 2, issue 1 (with stories from living organ donors) is now free. 

News for a New Year!

We have finished another volume of Narrative Inquiry in Bioethics.

The issue edited by Paul Farmer and Sadath Sayeed on Delivering Health Care to Resource Constrained Areas (NIB 2.1) and the issue edited by Kelly Dineen and Margaret Bultas on Parenting ASD Children Through the Transition to Adulthood (NIB 2.3) are now in print and have been posted on Project MUSE http://muse.jhu.edu/journals/narrative_inquiry_in_bioethics/

The first issue of Volume 2 on Living Organ Donors is now free on Project MUSE http://muse.jhu.edu/journals/narrative_inquiry_in_bioethics/toc/nib.2.1.html Please share this link with anyone who might be interested in this topic.

Please watch for more news. We have some very exciting projects in the works.