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Guide to Starting a Support Group

There is a sense of community that exists in a well-run support group: It can mean finding others who know how you feel, or being seen as someone with a disorder rather than as the disorder itself. If you are reading this, you have likely been affected by OCD or a related disorder in some way, either as an individual with OCD or a related disorder (well-managed or still struggling), or as a family member or supporter watching someone’s struggle with a disorder.

While support groups are not meant to be a substitute for individual therapy, they can serve as a great step in that direction, an important addition to therapy, or part of a relapse prevention plan. Peers can offer something different than a therapist, and this should not be underestimated.  Meeting other people going through similar situations can be very healing and beneficial — it can make people feel less lonely and isolated, as well as more connected to and understood by others.

While there are many support groups already active across the country and world, there are still many areas that do not have a regular group. Or, perhaps there may be a need for multiple or specialized groups (such as groups for teens, groups for parents, etc.) in your area. To find out what groups are already active in your surrounding areas, check the Support Group listings in our Resource Directory here.

If there is a need for a support group in your area, we encourage you to start one! Though the thought of running your own support group might sound overwhelming, it is definitely doable, and can be extremely rewarding. This article highlights issues to consider and options for how you can build a successful support group.  There is a Support Group Planning Sheet at the end of this article which you can download to help you begin thinking about your group.

Audience

First determine who you want your support group members to be. One issue to consider is whether you want to focus on a particular disorder or a group of disorders. For example, this could be a support group for individuals with OCD, Hoarding Disorder, or BDD (or another related disorder), or this could be a combination (e.g., support group for individuals with OCD and related disorders, or OCD and anxiety disorders).

Other audience considerations include whether you want to run the group for individuals with the disorder, those connected to them (e.g., parent support group, sibling support group), or a combination (e.g., individuals with OCD and their families). Sometimes, additional narrowing of the group (e.g., parents of young kids or parents of teens) can be helpful — however, sometimes being too specific can negatively affect group attendance.

Finally, determine the age range. One option is to identify the age range by grouping: adults (ages 18+), kids (6-12, etc.) teens (ages 13–18), young adults (ages 18–30), or older adults (ages 50+), for example.

Leadership

Options for group leadership include professionally-led (by a treatment provider), peer-led (by someone with the disorder or someone affected by the disorder, such as a parent or caregiver), or a combination of the two. Leadership can also rotate if need be.

Having a mental health professional as the support group leader can be very helpful, as he or she is likely to already have some specific training on running a group. A professional would be good for keeping members on track and redirecting those members who might be monopolizing the group discussion. Additionally, if a member becomes overwhelmed during a meeting, a professional might feel comfortable taking them aside and helping them get back into the group more productively. Finally, a professional might be able to answer more difficult questions about OCD and related disorders and treatment. On the down side, some groups have found that having a professional in the room makes it less likely that group members want to participate as openly and honestly.  Additionally, it can be difficult to find professionals willing to donate their time to running the group. Some professionals may also want to charge a small fee for running the group so they can be reimbursed for their time.

A peer-led group has the advantage of being led by someone who “walks in the shoes” of the other group members and can lead by example. This individual should be in a good place in their recovery, and be able to empathize with both the challenges and benefits of getting effective help for one’s OCD and/or related disorders. However, it can be challenging for a non-mental health professional to run a group. A room full of individuals all struggling in various degrees may feel overwhelming to someone without training. That said, many non-mental health professionals can be just as effective at running groups, keeping members on task, and managing difficult interactions if they arise. And because they are also affected by the disorder personally, they are more likely to be willing to volunteer time.

In some cases, having both a professional and peer to co-lead the group is the ideal — the two leaders can complement each other and bring a broad range of skills to the group. 

Type or Structure of the Group

In addition to thinking about the who, when, and where of your group, you will also need to think about the structure of your group. There are several options for how you will run your group. A possible starting place is to run your group as (or similar to) a G.O.A.L. group, which stands for “Giving Obsessive-Compulsives Another Lifestyle.” Created by Drs. Gayle Frankel, Jonathan Grayson, and Edna Foa, the G.O.A.L. group format was originally developed for relapse prevention, but has since grown and broadened to support a wide range of individuals with OCD at many points in their treatment. Dr. Grayson wrote a manual about how to run this type of group, which is available to download for free here.

The advantage of the G.O.A.L. support group format is that it has a lot of flexibility, but also a very clear structure that has already been created for you. However, this approach may not suit your needs. Maybe you find this approach too structured or the emphasis of the group not quite what you were envisioning.

If you are looking for something more flexible or you want your group to have a different focus, you can use the Support Group Planning Sheet (PDF) to help build your group and put together all of the information you’ll need to start advertising your group.

OTHER ISSUES TO CONSIDER DURING PLANNING

  • Will you have an attendance policy?
  • Will you have a group confidentiality policy?
  • Will you have an expectation that members should also be involved in treatment?
  • Will you have an expectation that members have to be active in the group?
  • Should there be a “check-in”/introduction component to the group where all group members have an opportunity to briefly:
    • Share how they are working on their OCD symptoms.
    • Talk about non-OCD related updates.
    • Talk about a certain theme.
    • A combination of the above.
  • Will there be an educational component to the group meetings? For example:
    • Having a guest speaker or someone in the group designated to educate the rest of the group on an agreed-upon topic before or after the group.
    • Discussion of a book related to treatment or a personal memoir about OCD.
  • Will there be an open-ended conversation or Q&A component to the group?
  • Will there be a pre-determined topic chosen by the group or leaders to discuss during the meeting (for example: obstacles to treatment)?
  • Will there be time for informal socializing?
  • Will you make announcements during the group (for example: “Due to the holiday next week the group won’t be meeting”)?  What strategies will you use to advertise your group and find members?

Getting Group Members

Figuring out how to get members to come to your new group will be the final step of your planning process. A good number to aim for, is somewhere between 8-12 attendees for each group, though group minimum and maximum sizes depend on your personal comfort level as a facilitator.  In your planning process, think about how few attendees will be too few (if at all), and at what point your group may become too large for you to facilitate comfortably.  Bear in mind that it may take as long as 3–6 months to get a core group of regular attendees after you first start your group, and even small groups can still be of value.

Also keep in mind that you should be asking for regular feedback from existing members about how the group is going. Modifying the group based on this feedback will increase the likelihood of group members returning! You don’t want to have to spend a lot of time and resources generating new members frequently.

Here are some options for “marketing” your new support group to help people know about the group:

  • Post a free listing in the new IOCDF Resource Directory by filling out the form here.
  • Call local therapists in the region and ask them to spread the word.
  • Contact your local IOCDF affiliate to see if they can help.
  • Attend a local mental health conference or lecture series and let them know about your support group (Note: If you find a regular lecture series on OCD or anxiety disorders, see if you can “piggy-back” on their lecture series by holding your support group right before or right after the lecture).
  • Consider organizing a local conference or lecture and use this event to advertise the support group.
  • See if local newspapers will do a free advertisement.
  • Post a free listing on www.meetup.com.
  • Post a free listing on Craigslist.

Resources

Consider using the Support Group Planning Sheet as you begin to plan your support group. Additional suggestions for group structure and possible topics for group discussion can also be found in Dr. Grayson’s G.O.A.L. Group Handbook.