Support Group Toolkit

Toolkit Checklist

IPF Education and Support Group Toolkit

Welcome

Idiopathic Pulmonary Fibrosis (IPF) support and education groups play an important role in helping individuals living with IPF, their families and friends better understand the disease and their options to deal with its mental and physical impact. This toolkit has been developed with the Canadian Pulmonary Fibrosis Foundation (CPFF) with support from a medical steering committee and a grant through InterMune Canada, Inc., to support individuals, strengthen the IPF community, and build new groups throughout Canada. This toolkit will assist you in planning, sharing and executing an IPF patient support group in your community, either in person or online.

About Education and Support Groups

A support group is a gathering of people affected by IPF, brought together because of common experiences or challenges living with IPF. Typically, anyone affected by IPF can become a member of this type of group.

There are many different types of support and education groups, some casual while other include various activities and guest speakers. Although each group operates in a unique way, all groups meet regularly to share experiences and information. You will need to decide where, when and how frequently your group will meet.

Group Formats

This toolkit can be used in many different ways and can be tailored to your needs. This leader guide outlines a few suggestions about how you can use these resources. You may also use them in other ways as you see fit.

There are two (2) basic patient meeting formats. Which meeting format you would like to implement is up to you.

  • Re-­occurring Support Group
  • A support group is a smaller group of patients and caregivers meeting together to discuss their disease and share
  • Patient Forums
  • A forum is a larger meeting where experts present information to the group about their disease, with time left at the end for questions

Education and Support Group in Seven Simple Steps:

       I have set a re-­occurring time and date to meet

      I have permission to use a location

      I have promoted the event

       I have confirmed participants

       I have chosen a presentation or completed the presentation template

       I have arranged a light snack and/or refreshments

       I have a registration form ready

In this Toolkit

You will find the following resources to help you in the organization, promotion and operation of your own education and support program:

   Welcome Letter

   One (1) Group Leader Presentation

  • A complete guide of how to set up your own IPF education and support If you have additional questions or would like to review the presentation with a certified trainer, please contact: info@prizsm.ca or call 1.877.782.2361

   Meeting Modules

  • Six (6) topic specific meeting presentations
  • To guide you through your first six meetings, these presentations include information on different topics related to IPF as well as speaking notes and group discussion questions
  • One (1) presentation template
  • Once you have completed presentations one (1) to six (6) this template will help you create group presentations on the topics of your When creating your presentations, make sure you use information from trusted source

   One (1) Recruitment Poster

  • You can post these in a respirologist’s office, pulmonary rehabilitation centre or local community centre to help you recruit others affected by The poster leaves space to include the group time, date, location and your contact information

   One (1) Public Service Announcement (PSA) Guide

  • If you want to start a larger support group or a patient forum, you can ask your local radio station to run a public service announcement (PSA) on the This guide includes sample text you can use to help you

   One (1) Participant Registration Form

  • This will help members get involved with the IPF community and learn more about upcoming events, IPF news and advocacy This network will also help the CPFF refer newly diagnosed patients to existing support groups and connect group leaders

   One (1) Toolkit CD

  • Includes a welcome video from the CPFF and digital copies of all of the materials listed above, giving you the ability to create your own modules on a limitless number of group topics

If you have any questions about the toolkit please contact 1.877.782.2361 or info@prizsm.ca