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