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- Title
Stakeholder engagement and participation in the design, delivery, and dissemination of the ostomy self-management telehealth (OSMT) program.
- Authors
Wendel, Christopher; Sun, Virginia; Tallman, Nancy; Simons, Christie; Yonsetto, Peter; Passero, Frank; Donahue, Deborah; Fry, Dan; Iverson, Roger; Pitcher, Pamela; Friedlaender, Jonathan; MacDougall, Lyn; Henson, Joshua; McCorkle, Ruth C.; Ercolano, Elizabeth; Cidav, Zuleyha; Holcomb, Michael J.; Weinstein, Ronald S.; Hornbrook, Mark C.; Grant, Marcia
- Abstract
<bold>Purpose: </bold>Stakeholder engagement is increasingly integrated into clinical research processes. We conducted a mixed methods analysis to describe stakeholders' (peer ostomates, ostomy nurses, telehealth engineers) perceptions of their engagement and participation in a multisite, randomized trial of a telehealth-delivered curriculum for cancer survivors with ostomies.<bold>Methods: </bold>Stakeholder notes were analyzed using narrative analysis. We constructed a 15-item survey that assessed the following areas: adherence to stakeholder engagement principles, engagement/influence throughout the study process, impact on perceived well-being, and satisfaction. Stakeholders were invited to complete the survey anonymously. Quantitative survey data were tabulated through summary statistics.<bold>Results: </bold>Across intervention sessions, an average of 7.7 ± 1.4 stakeholders attended and 2.6 ± 1.4 submitted a note per session. The survey response rate was 73% (11/15). Stakeholders reported high agreement that the study adhered to engagement principles (91% reciprocal relationships, 100% co-learning, partnership, and transparency/honesty/trust). They felt highly engaged (18% moderate, 73% great deal) and that they had influence on study initiation (27% moderate, 55% great deal), intervention delivery (9% moderate, 82% great deal), fidelity assessment (18% moderate, 73% great deal), analysis and interpretation (55% moderate, 27% great deal), and dissemination (45% moderate, 45% great deal). They reported high overall satisfaction with roles (91% great deal), believed the program was helpful for participants (91%), and that serving on study team benefited their own well-being (100%).<bold>Conclusions: </bold>Our strategy of stakeholder inclusion led to high engagement, input, satisfaction, and belief in success of program, which could be mirrored in other trials.
- Subjects
OSTOMY; IMPACT of Event Scale; RESEARCH funding; TELEMEDICINE
- Publication
Supportive Care in Cancer, 2022, Vol 30, Issue 7, p6187
- ISSN
0941-4355
- Publication type
Article
- DOI
10.1007/s00520-022-06878-x