Effects of a support group leader education program jointly developed by health professionals and patients on peer leader self-efficacy among leaders of scleroderma support groups: a two-arm parallel partially nested randomised controlled trial.

ABSTRACT:

Background

More people with rare diseases likely receive disease education and emotional and practical support from peer-led support groups than any other way. Most rare-disease support groups are delivered outside of the health care system by untrained leaders. Potential benefits may not be achieved and harms, such as dissemination of inaccurate information, may occur. Our primary objective was to evaluate the effects of a rare-disease support group leader education program, which was developed collaboratively by researchers, peer support group leaders, and patient organization leaders, compared to waitlist control, on peer leader self-efficacy among scleroderma support group leaders.

Methods

The trial was a pragmatic, two-arm partially nested randomised controlled trial wi

SUBMITTER: Thombs BD 

PROVIDER: S-EPMC9616616 | biostudies-literature | 2022 Oct

REPOSITORIES: biostudies-literature