Stakeholder engagement and participation in the design, delivery, and dissemination of the ostomy self-management telehealth (OSMT) program

Christopher S Wendel, Virginia Sun, Nancy Tallman, Christie Simons, Peter Yonsetto, Frank Passero, Deborah Donahue, Dan Fry, Roger Iverson, Pamela Pitcher, Jonathan Friedlaender, Lyn MacDougall, Joshua Henson, Ruth C. McCorkle, Elizabeth Ercolano, Zuleyha Cidav, Michael J. Holcomb, Ronald S. Weinstein, Mark C. Hornbrook, Marcia GrantRobert S Krouse

Research output: Contribution to journalArticlepeer-review

1 Scopus citations


Purpose: 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. Methods: 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. Results: 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%). Conclusions: Our strategy of stakeholder inclusion led to high engagement, input, satisfaction, and belief in success of program, which could be mirrored in other trials.

Original languageEnglish (US)
Pages (from-to)6187-6193
Number of pages7
JournalSupportive Care in Cancer
Issue number7
StatePublished - Jul 2022


  • Ostomy
  • Self-management
  • Stakeholders
  • Telehealth

ASJC Scopus subject areas

  • Oncology


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