impact of early implementation of narrative medicine techniques on patient centered attitudes of medical students

Conditions: Narrative Medicine; Chronic Disease; Terminal Illness; Cancer; Diabetes Mellitus; Cystic Fibrosis; Rheumatologic Disorder; Oncologic Disorders; Hematologic Diseases

Summary: a qualitative study assessing the impact of early narrative medicine practice on medical honors program (mhp) students' attitudes regarding patient-centered interactions, through interviewing patients with chronic or life-limiting illnesses to obtain their illness stories. mhp students will develop a patient narrative for the patients interviewed. these narratives will be edited by the patient, and, with the permission of the patients, may be published as a collection of stories.

teach mhp students about obtaining the illness story and narrative medicine. this will be done during the curriculum of the medical humanities class in the fall of 2016. recruit patients on units and floors in shands university of florida (uf) health that may potentially have patients that will be good candidates for enrollment in the patient narratives. these may include pediatric hematology and oncology patients, adult hematology and oncology patients, patients with diabetes, organ transplant patients, cystic fibrosis patients, and rheumatologic disorder patients. investigators will communicate with child life/social workers, as well as faculty medical providers on these inpatient services to help identify appropriate patients for referral and recruitment. these faculty members will obtain authorization from the patient for the investigators to approach the patient regarding recruitment. once a patient has been identified, a co-investigator will introduce the project to the patient, review examples of the types of questions to be asked by the mhp student, provide opportunity for questions, obtain informed consent, and provide them with the patient-practitioner orientation scale (ppos) for completion. a mhp student will meet with the co-investigator, fill out the ppos, and then interview the patient. the co-investigator will be present for the interview, but the investigator would like the mhp student to conduct the interview. the interview will be voice recorded with encryption for later transcription. following the interview, a co-investigator will lead a discussion to determine patient and student observations/opinions about such conversations. the co-investigator will address differences in ppos responses from patient vs student, without specifically revealing the personal answers of each, and allow for discussion of how scales can be aligned to better the patient-physician relationship. this discussion will be voice recorded for transcription and qualitative analysis by the investigators following the interview, the mhp students will transcribe the patient narrative. during the interview, the student and patient will agree on whether the narrative is written from the first or third person point of view. the initial informed consent will have a specific series of check boxes to address whether the patient approves of dissemination of their story. this initial consent will specifically state that this narrative will not be published prior to their approval of the final product. the patient will also have the opportunity to declare which patient identifiers, if any, will be changed for the publication. the narrative will be presented to the patient, who will then have the opportunity to make changes and edits. if extensive edits are necessary, a subsequent narrative will be presented to the patient for final approval prior to publication. the investigators will make every effort to get the patient approval in person, however because of the possibility of the patient being discharged before the narrative has been composed, investigators will identify an acceptable method of communication with the patient outside of the hospital (email, phone call) for this purpose. in the case of the patient being discharged and needing to obtain approval, verbal approval over the phone will be obtained by a co-investigator and a witness, and will keep this documentation in a binder locked in the pi's office. following the completion of the interviews, the mhp students will meet for a focus group to discuss as a group their observations from their patient encounters. this focus group will be audio recorded and transcribed by the co-investigators for qualitative analysis after all patient narratives have been completed, narratives may be published in an online or book format, following the consent that the patient provided.

Eligibility criteria:
inclusion criteria: * patient inclusion criteria: * patient of shands uf health or shands children's hospital * children must be at least 8 years old * patients diagnosed with chronic or potentially life-limiting illnesses * patients must be english speaking * student inclusion criteria * uf students enrolled in the medical honors program * medical honors students must be up to date on hipaa training and confidentiality statement agreement * students must take the medical humanities course * uf college of medicine students exclusion criteria: * patient exclusion criteria: * anyone that the medical social worker or child life specialist feels would be unwilling or unable to participate in the study * patients who at the time of interview are unfit to communicate (ex. ventilated, comatose) * patients less than eight years old * patients that do not speak english * student exclusion criteria: * students not enrolled in the uf college of medicine * students not enrolled in the medical humanities course