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Shaping understandings through reflexive practice: Learnings from participatory research on aging with multiple
Sofie Olsgaard Bergien1,2, Lasse Skovgaard3, Josephine Lyngh Steenberg3
1The Danish Multiple Sclerosis Society, Poul Bundgaards Vej 1, Valby, 2500, Denmark. sofiebergien@gmail.com.
Research Involvement and Engagement
|July 31, 2024
Summary
Participatory research involving older adults with multiple sclerosis (MS) and patient association employees revealed diverse initial understandings of aging with MS. Reflexivity allowed these varied perspectives to merge into a dynamic, co-existing understanding of later life with MS.
Area of Science:
- Qualitative research
- Participatory research methods
- Health sciences
Background:
- Participatory research engages diverse perspectives in scientific knowledge creation and societal change.
- Few studies explore how understandings evolve among research partners or how different viewpoints merge.
- This qualitative study, part of a larger participatory mixed methods project, investigates the shaping of understandings about aging with multiple sclerosis (MS) among university researchers, older adults with MS, and patient association employees.
Purpose of the Study:
- To explore how understandings of aging with multiple sclerosis (MS) are shaped through interactions between diverse research partners.
- To examine the process by which different perspectives on aging with MS are combined within a participatory research setting.
Main Methods:
- A qualitative study conducted collaboratively in Denmark over three years.
- Research partners included older adults with MS, patient association employees, and university researchers.
- Data collection involved field notes, meeting minutes, focus groups, and individual interviews, analyzed using thematic network analysis.
Main Results:
- Diverse understandings of aging with MS were evident among partners at the study's outset, shaped by lived experiences, professional backgrounds, and societal narratives.
- A reflexive process among research partners led to the reshaping and merging of these understandings.
- A more dynamic understanding of later life with MS emerged, where multiple perspectives could coexist.
Conclusions:
- Research partners brought varied understandings of aging with MS, influenced by their unique backgrounds.
- Reflexive practices were crucial for enabling diverse perspectives to coexist, fostering engagement and transparency.
- The study underscores the value of reflexivity in developing complex, evolving understandings within participatory research on aging with MS.
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