Chronic Illn. 2024 Mar;20(1):105-116. doi: 10.1177/17423953231164794. Epub 2023 Mar 22.

Jacob A Rohde ¹, Adam J Saffer ², Xinyan Zhao ³

Author information

¹Cancer Prevention Fellowship Program, Division of Cancer Prevention, National Cancer Institute, Bethesda, MD, USA.

²Hubbard School of Journalism and Mass Communication, University of Minnesota Twin Cities, Minneapolis, MN, USA.

³Hussman School of Journalism and Media, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA.

Abstract

Objectives: This study examined the health discussion networks (HDNs) of people with inflammatory bowel disease (IBD). We sought to test if HDN characteristics were associated with IBD management self-efficacy outcomes.

Methods: We recruited a sample of adults with IBD (N = 112) in December 2020 to take an online survey. Participants listed up to five people (alters) who they discussed their health with, and we used those data to construct individual HDNs. Participants provided demographic information about alters, and characterized alter by relationship, closeness, and support provided. We used multivariable regression to examine associations of HDN characteristics with IBD symptoms, remission, and emotions management self-efficacy outcomes.

Results: Participants reported data for 412 alters (mean HDN size: 3.68). Alters were mostly friends (40%) or family members (36%); few were healthcare workers (6%). In multivariable analyses, HDN size was associated with remission and emotions management self-efficacy (ps < .05), and the amount of support offered by alters was associated with emotions management self-efficacy (p < .05).

Discussion: HDN size and alter support variables were associated with some IBD management self-efficacy outcomes among our study sample. These findings provide empirical evidence about HDNs among people with IBD and support the notion that disease management is a collective effort.