“Everyone has a Beautiful Story, and Everyone Needs to Hear Everyone’s Story”

What Motivates People to Participate in Qualitative Interviews About Their Health Experiences

Datos Bibliográficos

ID24145264
AutoresJane Evered (0000-0003-0098-1171, University of Wisconsin–Madison, autor de correspondencia), Yara AL-Rayyan (University of Wisconsin–Madison), Yara AL‐Rayyan (University of Wisconsin–Madison), Madison Wynn (University of Wisconsin–Madison), Brittany Rodriguez (University of Wisconsin–Madison), Erika Cottrell (Oregon Health & Science University), Njeri Grevious (Research Experiences for Undergraduates), Nancy Pandhi (0000-0002-0059-801X, University of New Mexico), Jill Owczarzak (Johns Hopkins University), Karen C Smith (0000-0003-2140-1690, Johns Hopkins University), Katherine Clegg Smith (Johns Hopkins Bloomberg School of Public Health), Cindy Whitney (0000-0003-2219-8911, Stony Brook University), Rachel Grob (University of Wisconsin–Madison)
Año2026
Volumen25
Fecha de publicación2026-01-19
Peer ReviewedSí
Open AccessSí
TipoARTICLE
RevistaInternational Journal of Qualitative Methods (JOURNAL)
Identificadores de la revistaISSN: 1609-4069 • E-ISSN: 1609-4069
EditorialSAGE Publications (PUBLISHER • US)
DOI10.1177/16094069261490329
OpenAlexW7212356808
IdiomaEN
Referencias citadas59

The complex, interrelated factors that motivate people to participate in qualitative research studies whose findings will be disseminated through a public-facing website are not fully understood. Members of the Health Experiences Research Network completed a secondary analysis of data from eight qualitative health experiences research studies conducted using Health Experience International (formerly known as DIPEx) Methodology to examine motivations of 182 participants in the United States. In an inductive descriptive analysis informed by interpretive description, we identified motivations for participation ranging from the deeply personal to the broadly societal. Participants described how they seek to be seen, heard, and represented as complex people as they share their stories to help others, contribute to the scientific enterprise, and ground system improvements in holistic experiences. They expressed personal, and sometimes therapeutic, benefits of being seen as whole people, along with motivations to share stories publicly and support representative science more broadly. This research offers valuable insights into people’s complex motivations for involvement, as well as people’s trust and engagement in the scientific enterprise. To conclude, we highlight the boundaries of this secondary analysis’s focus on those who decided to participate, along with implications for future research and research practice.

Data collection · Focus (optics) · Focus group · Public health · Qualitative analysis · Qualitative research · Research design · Data Analysis and Archiving · Focus Groups and Qualitative Methods · Qualitative Research Methods and Ethics