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

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.

Automated summary

This study utilized mixed methods analysis to explore stakeholders' perceptions of engagement and participation in a telehealth-delivered curriculum for cancer survivors with ostomies. Results demonstrated high agreement among stakeholders regarding adherence to engagement principles and high levels of engagement throughout the study process. Stakeholders reported high satisfaction with their roles and believed that their involvement benefited both the participants and their own well-being.