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Perspective of Patients and Stakeholders as Members of a Research Team

Authors :
Janet L Poole PhD, OTR/L
Sharon L Newbill PhD
Source :
Journal of Patient Experience, Vol 10 (2023)
Publication Year :
2023
Publisher :
SAGE Publishing, 2023.

Abstract

Systemic sclerosis (SSc) is a rare orphan disease, characterized by skin thickening, vascular insufficiency, and fibrosis of internal organs. SSc affects about 100,000 people in the United States. This study explored perceived benefits and challenges of patient partners and stakeholders, who were team members on a project to revise and test a self-management program (Taking Charge of Systemic Sclerosis). Five patient partners, 1 stakeholder from the Scleroderma Foundation and 1 stakeholder from a state chapter of the Scleroderma Foundation were interviewed. Conversations were audio recorded and transcribed verbatim and analyzed. Four themes emerged from the analysis with corresponding subthemes: contributions to study, benefits of involvement, challenges, and project leadership. The themes and subthemes were generally similar to those expressed in other studies. However, additional benefits from engagement were identified: acceptance, increased knowledge of SSc, and helping others. Participants reported feeling supported and valued as members of the team and that their opinions mattered which is in contrast with findings from other studies.

Subjects

Subjects :
Medicine (General)
R5-920

Details

Language :
English
ISSN :
23743743 and 23743735
Volume :
10
Database :
Directory of Open Access Journals
Journal :
Journal of Patient Experience
Publication Type :
Academic Journal
Accession number :
edsdoj.b38468b1e7a945dea5208d77a3f1fa09
Document Type :
article
Full Text :
https://doi.org/10.1177/23743735231151768