by Claire Fedoruk | Dec 06, 2018

In today’s post, we would like to highlight the contributions of the SPIN-SSLED Patient Advisory Team, which consists of ten patients and patient advocates who generously volunteer their time to work on the Scleroderma Support group Leader EDucation (SSLED) Project.
SPIN-SSLED is a 3-month videoconference-based program that will provide training to scleroderma support group leaders and others who would like to become group leaders. Our long-term goals are to improve the effectiveness and sustainability of existing scleroderma support groups, reduce burden on support group leaders, and increase the availability of support groups.
Members of the Support Group Project Advisory Team have been involved in the SPIN-SSLED Program since its initial planning stages. As a first step, SPIN team members conducted one-on-one interviews with scleroderma support group leaders, support group attenders, and patients who do not attend support groups. Based on this data, the Advisory Team helped develop the Scleroderma Support Group Survey, which was completed by over 1,200 scleroderma patients around the world. The interviews and survey allowed us to compile a list of the most important reasons why people with scleroderma attend or do not attend support groups and the training and education needs of group leaders. Using this information, the Advisory Team members worked with SPIN researchers over several months to create the content of the SPIN-SSLED training program and the accompanying training manual.
In October 2017, members of the Advisory Team travelled to Montreal, Québec, to film a series of brief educational videos for the SPIN-SSLED Program. Over three days, they acted out situations that support group leaders often encounter when leading their groups. The overall goal of the videos was to teach effective leadership styles and depict a confidential, empathetic, and educational environment, in which group members would be encouraged to participate.

Team member Amy Gietzen described this experience: “Being able to go to Montreal and film with other scleroderma patients and use our illness to help other people was so inspiring to me. I felt such a sense of accomplishment and honor to be contributing to the SPIN-SSLED Program and to be a small piece of the puzzle that they are putting together to help maintain and encourage support groups.”
Over this summer, SPIN conducted a small feasibility trial for the SPIN-SSLED Program with two groups of 5 scleroderma support group leaders in each group. The training groups were led by Laura Dyas of the Michigan Chapter of the Scleroderma Foundation. Participants in the trial rated the program 9.4/10 on average for overall satisfaction, and all participants said that they would recommend the program to other support group leaders. A full-scale trial is planned for 2019.
Check out the Teams & Committees page of our website for more information about each team member!