Narrative Medicine
Conditions
Keywords
Patients, Caregivers
Brief summary
The MyPaTH Story Booth will use an (audio) "document" approach to elicit in depth experiential knowledge or perspectives from patients and caregivers by recording their personal stories.
Detailed description
Modeled after the Storycorps project and healthtalk.org, MyPaTH Story Booth will use an (audio) "document" approach to elicit in depth experiential knowledge or perspectives from patients and caregivers by recording their personal stories. Narratives provide a powerful framework for understanding patient problems and the larger process of illness, coping, and seeking health care. Narratives can provide meaning, context, and perspective for patients' situations and insight into failures in health care delivery, particularly for marginalized patients. MyPaTH Story Booth will provide simple instructions for how participants can work with an interview partner (e.g., a family member or friend) to record their story. MyPath Story Booth may be launched sequentially at each PaTH site to establish an initial archive of patient and caregiver narratives. Individuals who record narratives will be asked to provide limited "tags" to populate a searchable database (e.g., their age, sex, interview topic). The audio booth and procedures will also be made available to PaTH affiliated researchers who wish to augment the narrative database with narratives of patient partners from specific study populations.
Interventions
None listed
Sponsors
University of Pittsburgh
Study design
Observational model
OTHER
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
ALL
Age
18 Years to 99 Years
Inclusion criteria
* Over the age of 18
Exclusion criteria
* Researchers will exclude individuals who are not 18 years of age or older and/or do not provide informed consent
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Number of stories collected | September 2018 | The goal of the project is to generate a searchable archive of patient and caregiver narratives |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Comparison of approaches to categorize story contents | Cross-sectional analysis of the first 100 stories, September 2018 | Researchers will compare how story contents are categorized using (a) qualitative research coding with survey data collected from (b) participants and (c) study staff |
| Number of researchers who access the online story archive | Annually at 2 and 3 years of follow-up the number of researchers who accessed stories will be reviewed. | To support health researchers' use of patient and caregiver narratives in formulating research questions |
| Number of research teams who engage stakeholders through the project | Annually at 2 and 3 years of follow-up | The project aims to facilitate connections between individuals who have real-world insights and experience with health care or health care delivery and health researchers. |
Countries
United States
Contacts
CONTACTEmily L Klawsson, MS
CONTACTKathleen M McTigue, MD
PRINCIPAL_INVESTIGATORKathleen M McTigue, MD
University of Pittsburgh
Outcome results
None listed