Table 1.

Content of programme modules

Module title	Module description
1. The Support Group Leader’s Role	This module discusses the benefits of being a support group leader, the expectations of what the role of leader involves (eg, facilitation of meetings and interactions but not giving medical advice) and tips for being an effective and supportive leader.
2. Starting a Support Group	This module discusses the purpose of a support group, what people with scleroderma hope to gain from support group, why some do not attend, establishing leadership (eg, one leader, co-leader), membership (eg, patients only, open to family and friends), logistics of starting a group (eg, time, place and meeting duration).
3. Structuring Support Group Meetings	This module discusses formatting group meeting and how to successfully integrate both educational activities with emotional and practical support for members, setting up a meeting agenda.
4. Scleroderma 101	This module shows a filmed conference by a physician specialised in scleroderma who explains the different types of scleroderma, symptoms, causes, treatments and alternative approaches. The module also includes tips to evaluate credibility of information sources on the Internet.
5. Successful Support Group Culture	This module discusses the importance of establishing expectations and guidelines for the support group with members, the importance of confidentiality, how to create and maintain positive and productive support group culture using (1) encouraging statements, (2) open-ended questions, (3) body language, (4) linking similar experiences between members and (5) summarising discussions. This module uses video vignettes to illustrate these techniques.
6. Managing Group Dynamics Part I	This module discusses managing difficult support group dynamics such as members who are ‘quick fixers’, overly talkative, how to maintain a positive group environment, conflict management and resolution for minor and larger issues. This module uses video vignettes to illustrate these techniques.
7. Managing Group Dynamics Part II	This module discussed how to identify and respond to members who are overly shy or who are chronically negative, and what to do when members bring unsubstantiated, inaccurate or potentially misleading medical information to the group. This module uses video vignettes to illustrate these techniques.
8. Grief and Crisis in Scleroderma	The module discusses different situations that may bring grief to members, stages of grief, supporting group members in grief, dealing with medical crises or death of group members.
9. Advertising and Recruiting for the Support Group	This module discusses how to advertise and promote a support group, how to recruit new members for support groups on ongoing basis, advertising through patient organisations and strategies to retain members.
10. The Continuity of the Group	This module discusses the importance of understanding and overcoming reluctance in seeking feedback, the importance of feedback in the support group experience, how to obtain and respond to feedback, how to identify reasons why members may stop attending meetings and strategies to help maintain membership, how to keep members engaged and move your support group forward by making changes.
11. Supporting Yourself as a Leader	This module discuses understanding what leader burnout is, understanding why it can happen and what the warning signs are, understanding the best way to address burnout including identifying methods of coping, understanding at what point it may be best for a leader to step down from his or her role, strategies to prevent experiencing leader burnout.
12. Remote support groups	This module discusses the benefits of an online support group, finding the right technology, scheduling and programming, advertising and reaching your target audience, tips for successful online meetings.
13. Resources	This module discusses strategies on how to obtain information and resources, how to communicate information effectively to members, the responsibilities of the national organisation, meeting the resource needs of the group, access to the SPIN-SSLED Online Resource Centre to download scleroderma talks, educational videos and research articles for leaders and members of support groups.