Establishing an Ostomy Peer Support Group

Some of the common characteristics of support groups include:

• They are made up of peers – people who are all directly affected by a particular issue, illness, or circumstance,
• They usually have a discussion leader or facilitator (voluntary or professional),
• They tend to be fairly small in size to better allow everyone a chance to talk,
• Attendance is voluntary.

There are many benefits to peer support groups:

• Peer support groups help people with a problem or illness feel less alone and more understood,
• Support groups don’t cost much to run,
• Support groups empower people to work to solve their own problems,
• Members can share information, keeping one another up to date on news of interest to them,
• Among people who are experiencing similar problems, there is a unique emotional identification that is different from the type of support that can be gotten from professionals,
• Members act as role models for each other. Seeing others who are contending with the same adversity and making progress in their lives is inspiring and encouraging,
• A support group is a safe place for someone who needs to talk about intensely personal issues, experiences, struggles, and thoughts,
• In a support group, members are equals; this can make people feel much more comfortable opening up about their concerns,
• Talking to others in support groups reduces anxiety, improves self-esteem, and helps members’ sense of well-being overall.

The aim of a peer support group is to offer support by providing regular meetings where people can talk together in a supportive way. Having clear aims and objectives will give the group credibility, which can help relationships with nursing professionals and other organisations.

There is lots of things to think about when starting a support group! Factors your may like to consider could include:

• What do you want to accomplish? – What is the purpose of the group and who do you want to reach? You may find it useful to develop a vision and/or mission statement for your group.
• What type of support group do you want? – Decide whether you want your group to be informal e.g. a “tea and chat” group or a more structured group with visits from guest speakers. Perhaps you want to invite manufacturers and suppliers along to exhibit their stoma products?
• What will the name of your group be? – Your name should be self-explanatory. For example: XYZ Young Ostomates Support Group, XYZ Urostomy Support Group
• When is a good time for your group to meet? – make sure that you choose a time which is likely to be appropriate for your target demographic. For example: if you are targeting youth between the ages of 14 and 21- choose a weekend meeting time rather than a weekday meeting time to avoid school/tafe/university commitments
• Where do you want to meet? – How many people are likely to attend? Is the location convenient and welcoming for members? Is your meeting place safe and easy to reach? Are there tea and coffee making facilities? Investigate the possibility of your local hospital or community centre offering a room free of charge.
• Can your local association/s help? – Local associations will be able to help you to establish an initial connection with other ostomates in your target demographic by including an invitation to attend the inaugural support group meeting in a newsletter or monthly order, or via direct mail out. Your association may also have meeting space available for you to use.
• Can your local Stomal Therapy Nurses (STN’s) help? – Inform your local STN’s of your intention to establish a support group. STN’s can be an amazing source of information and can also help to communicate your group’s existence to new ostomates. Discuss with them the idea of your group and what you hope to achieve. They may be able to suggest the way forward and how they feel new and experienced ostomates would benefit.

Once you have decided where, when, who and how, you will be ready to have your very first meeting!

Setting the “culture” of your group from the outset is always wise. Groups seem to work better when all participants know what is expected of them!

Things you may like to establish at your meeting could include:

Select a leader or facilitator

Picking the right person to lead your support group is very important. The group leader or facilitator opens and closes the meetings, sets the tone for the discussion, helps members learn how to listen and offer support to each other, and deals with any problems that come up during the meeting. The ideal facilitator will possess the following qualities:

• Flexible schedule: He/she should have enough time to perform the required tasks and commit to be there for every meeting.
• Lots of energy: He/she should have a positive attitude, be in generally good health, and be able to work after hours if necessary.
• Ability: Ideally, he/she should have experience in facilitating such groups. He should also be responsible, articulate, fair, organized, and able to work well with others.
• Support: Your facilitator needs to have access to needed resources to run the group (a phone, a car, etc.), and people he/she can rely on for assistance, if necessary.
• The desire to do the job: He/she should have an interest in the topic or at least a commitment to helping others.

Decide the details of your future meetings 

• How often should you meet? (Most ostomy support groups meet once per month).
• How long should meetings last? (Most support groups meet for about two hours)
• Should you serve refreshments? Refreshments help to make everyone feel at home and encourage socializing among members. If you do choose to serve refreshments, decide on how these will be provided: will people take turns providing cheap refreshments or will it be a “bring a plate” arrangement? If you are meeting in an associations rooms, can the association provide access to refreshments at no charge?

Decide the standing rules for your support group

Rules help group members to understand what is expected of them during the course of the meeting. While rules will differ from group to group, as a general guide, the following principles should be observed as a minimum:

• Confidentiality: group members should respect the confidentiality of other group members. What is discussed during the meeting should stay in the meeting.
• Non-discrimination: All group members should be treated equally regardless of their ethnic origin, sexuality, gender, age, political or religious affiliation, economic status or disability.
• Respect: All group members should be treated with dignity, care and respect. All have the right to speak and share without interruption and to be listened to without judgement. Offence language should not be used.
• Responsibility: All group members are responsible for the success of the group.
• Neutrality: Support should be of a non-clinical nature only. Group members should feel free to share feelings and experiences but should never seek to offer healthcare or product advice and should never criticise the stoma management protocol of a medical professional or Stomal Therapy Nurse.

Members are the most important ingredient for a successful peer support group! Consider using some of the following strategies to help attract members to your support group meetings:

• Local associations: Local associations are a great way of connecting with your target demographic. Talk to them about helping you to attract members to your support group by:
  • Advertising your support group in their regular newsletter
  • Popping a flyer for your group into monthly orders,
  • Including a flyer in new member packs,
  • Sending invitations to members in your target group via a direct mail out,
  • Advertising the support group on the associations website.

• Local Stomal Therapy Nurses (STN’s): Send some flyers to your local STN’s to hand out to new ostomates.

• The Australian Council of Stoma Associations (ACSA) : Ask for your support group information to be included in the support group directory:
  • on the ACSA website
  • in Ostomy Australia journal
  • in the ACSA publication “A Beginning Not an End”

Don’t forget to advise all of the above if your support group details change!

• Other:
• Start a Facebook group
• Advertise in the community pages of your local paper