Bob's Proposal-Celiac Diagnosis Narratives

Research Proposal
Bob Becker

Research Topic: Diagnosis narratives of people with Celiac Disease.

Barker-Collo, S., Cartwright, C., & Read, J. (2006, December). Into the unknown: the experiences of individuals living with multiple sclerosis. The Journal Of Neuroscience Nursing: Journal Of The American Association Of Neuroscience Nurses, 38, 435. Retrieved September 6, 2008, from MEDLINE database.

This study examined individuals living with multiple sclerosis, interviewing individuals to discover their pre-diagnostic experiences and post-diagnostic experiences in addition to living with the disease. I like this study because researchers focused on both pre-diagnosis and post-diagnosis.

Brown, J., & Addington-Hall, J. (2008, April 15). How people with motor neurone disease talk about living with their illness: a narrative study. Journal of Advanced Nursing, 62, 200-208. Retrieved September 6, 2008, from Academic Search Premier.

This study interviewed 13 adults over an 18 month period. Four themes were discovered: Sustaining, enduring, fracturing, and survival.

Ellingson, L., & Buzzanell, P. (1999, April). Listening to women's narratives of breast cancer treatment: A Feminist approach to patient satisfaction with patient-physician communication. Health Communication, 11, 153-183. Retrieved September 6, 2008, from Communication & Mass Media Complete database.

This study examined women’s breast cancer treatment. The women viewed satisfaction as a negotiated process with physicians and the themes of respect, caring, and reassurance of expertise were found. Another example of the use of narratives.

Frank, A. (2004, Summer 2004). Finding the fitting story: Commentary on Candib (2004). Families, Systems, & Health, 22, 158-161. Retrieved September 6, 2008, from PsycArticles database.

This article examines the diagnosis narrative of Lucy Candib and her experience as a physician-as-patient. Just an example of patient narratives.

Lilja, L., & Hellzén, O. (2008, August). Former patients' experience of psychiatric care: A qualitative investigation. International Journal of Mental Health Nursing, 17, 279-286. Retrieved September 6, 2008, from EBSCO Academic Search Premier.

This study examined 10 former psychiatric patients in order to gain an understanding of inpatients’ experiences. They discovered five themes: 1) Being seen as a disease, 2) Striving for a sense of control in an alienating and frightening context, 3) Succumbing to repressive care, 4) Meeting an omniscient master and, 4) Care as a light in the darkness. The struggle for dignity these patients experienced might also be present in Celiacs’ diagnosis narratives.

Nettleton, S., Watt, I., O’Malley, L., & Duffey, P. (2005, February). Understanding the narratives of people who live with medically unexplained illness. Patient Education & Counseling, 56, 205-210. Retrieved September 6, 2008 from Sciencedirect.com database.

This article is a qualitative study of people who have unexplained symptoms and are undiagnosed. The authors found three themes: 1) The chaos of the patients’ illness narrative; 2) Concern that the symptoms could be “all in the patients’ mind; and 3) The patients’ status as medical orphans.

Ott Anderson, J., & Geist Martin, P. (2003). Narratives and Healing: Exploring One Family's Stories of Cancer Survivorship. Health Communication, 15, 133-143. Retrieved September 6, 2008, from Academic Search Premier database.

This study examines the stories of a cancer survivor and her husband. The focus is on communication difficulties in a family, one of whom has been diagnosed with cancer. I’m using it because it examines the way we talk about an illness.

Rich, M. (2001, April). Painful stories from Camp Anuenue: enactment and reenactment. Text and Performance Quarterly, 21, 128-143. Retrieved September 6, 2008, from EJS E-Journals database.

This study examines examines two cancer stories by teen sufferers. It focuses on the importance of the patient narratives in the enactment and re-enactment of pain. The stories by the campers help them to give them control of the situation.

Vanderford, M. L., Jenks, E. B., & Sharf, B. F. (1997). Exploring Patients' Experiences as a Primary Source of Meaning. Health Communication 9, 13-26. Retrieved September 6, 2008, from EJS E-Journals database.

This article examines the importance of patient identity and the use of patient narratives in the study of health communication. Helps justify the use of narratives, and is focused on the goal of patient-centered care.

Research Question: How do people with non-threatening diagnoses negotiate their identity, their disease, and their relationships?

Proposed sites of research: Local and regional Gluten Intolerance support groups offer the opportunity to talk with many individuals. I can attend meetings and then ask for people to volunteer to participate. Sometimes individuals will share their diagnosis stories at meetings.
Additionally, some support groups use snail-mail or email newsletters. I might be able to ask for participants through that venue as well.

Methods: I will use in-depth interviews.

Summary: By interviewing participants I will be able to record their entire narrative. This will allow me to examine how the individuals use the stories to negotiate or create meaning in their lives. I expect participants’ experiences will be similar to a grieving process, or similar to the children with cancer. The stories help the people take control of their situation.