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

• Published in: Supportive care in cancer 2022-07, Vol.30 (7), p.6187-6193
• Main 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, Krouse, Robert S.
• Format: Article
• Language: English
• Subjects: Colorectal cancer; Disease management; Evidence-based medicine; Health education; Medical research; Medicine; Medicine & Public Health; Medicine, Experimental; Nurses; Nursing; Nursing Research; Oncology; Original Article; Ostomy; Pain Medicine; Rehabilitation Medicine; Stakeholders; Telemedicine; Well being
• ISSN: 0941-4355; 1433-7339
• DOI: 10.1007/s00520-022-06878-x

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.