by Audrey Demmitt, RN, VisionAware Peer Advisor

Starting a Support Group 

Have you ever thought of starting a support group for the visually impaired in your community? Whether you are a professional who works with people affected by vision loss, someone who has vision loss, or someone who has an affected loved one, starting and facilitating a group can be a very meaningful and rewarding experience. It takes some planning and a few steps to get started, but if you have a heart for it, you can do it!    

Preparing Yourself to Start a Support Group                       

Before you start a group, you may want to do some studying to prepare yourself to facilitate a support group.  I recommend reading and taking a few on-line courses to give you a broader understanding about eye conditions that result in vision loss and the adjustment to the low vision and blindness process. You may encounter people in all stages and phases of losing vision and adjusting to it, so you will benefit from having a broad knowledge base and going beyond your own experience with sight loss. Here are some suggestions: 

  • Read about eye conditions, support groups, low vision, the adjustment process, and many other topics here on VisionAware. It is a great place to start, and you will be able to refer others to helpful information as needed. 
  • Read “Self-Esteem and Adjusting to Blindness” by Dean Tuttle and Naomi Tuttle DB66055. This is a manual that offers an overview about blindness and its meaning for the individual. It describes the adjustment process and psychological implications of living with vision loss. 
  • Read “When You Can’t Believe Your Eyes: Vision Loss and Personal Recovery,” by Hannah Fairbairn DBC11619. (Book Review of “When You Can’t Believe Your Eyes” – VisionAware) This is an up-to-date practical guide on personal and social recovery for adults living with vision loss and includes many great resources. 
  • Visit the OIB-TAC Continuing Education offerings to discover many relevant courses available not only to professionals, but also consumers and the public. You will find information and resources that will help you be more informed as you work with others. 

You will want to explore what resources are available locally and learn how they can be accessed by the visually impaired community. Though there is not one universal experience of losing vision, there are commonalities that can bring people together in a support group. Don’t worry about becoming an expert in all things blindness related! You will learn what you need to help others as you go. 

 What Will This Group Look Like? 

Next, you will want to think about what kind of group and what type of structure it will have. Consider these questions: 

  • Do I want to partner with a local vision agency or eyecare specialist? Or 
  • Do I want this group to be a “peer-led” support group? 
  • What will be the focus of the group? Education, Social Activity, Emotional Support, or a combination? 
  • Will it be open to participants of all ages and eye conditions? Or 
  • Will it be for a special age group or perhaps for people with one particular eye disease? 
  • Will the group meet on a virtual format, free conference line or in-person? 
  • Will the group meet for a specific number of weeks or be ongoing? 

Getting the Word Out 

When I started my support group 8 years ago, there were no resources or services for people with vision loss in my area. I was struggling with my own vision loss, trying to learn things on my own and decided I wanted to start a support group.  I put some flyers around town at the library, eye doctor offices, senior centers, and community bulletin board at the grocery store and placed an announcement in our local newspaper and magazine. Now there are even local Facebook groups and the Nextdoor app where you could advertise a meeting.  I held a first meeting just to get a pulse on the interest for such a group and to my surprise, there were about six people who attended that meeting. So, you need to “shake the bushes” and see who is out there!  

We spent the first meeting voting on a name, defining our purpose as a group, and deciding together on the day, time, location, and frequency of our meetings. I surveyed the small, brave group about what they wanted and needed. We started a members’ directory and planned our next meeting. It was so wonderful to meet others who were living with visual impairment, like discovering a new planet where we all spoke the same language! 

The Nuts and Bolts of Facilitating a Support Group 

It is important to establish a few “ground rules” for participation in the group to create a safe and enjoyable environment. The group can set these rules together and agree on them. For example: 

  • Be respectful and courteous of all members. 
  • Speak without judgment or offensive language. 
  • Listen without interrupting the speaker. Don’t monopolize the conversation. 
  • Avoid hot topics like religion and politics and stay on topic. 
  • Members will maintain the confidentiality of others. What happens in the group stays in the group. 

It may be helpful to involve other group members in the meeting, which will encourage greater investment, ownership, and participation. You may even invite someone to be a co-facilitator with you. Volunteer roles can include: 

  • Call members to remind them of meetings and events. 
  • Greet new members and guests. Give them a “welcome packet.” 
  • Bring and serve refreshments.  
  • Maintain the members’ directory and a Resource Guide. 
  • Set up and clean up the meeting space.  
  • Plan special events and social outings. 
  • Social media, flyers, and other advertising tasks. 

Planning Meetings

You will want to plan your meetings and establish a routine of beginning and ending on time. Having an agenda helps people know what to expect and respects their time. Consider developing a calendar with each meeting planned for the year.  

Maybe you will start with an ice-breaker activity or a check-in time. Then there may be announcements or business to discuss. The main portion of the meeting may be a guest speaker, a discussion on a topic, or a demonstration of a product for low vision. Maybe you want to try using role-playing to help members practice new skills. Some people use audio lessons or videos in their meetings. Or perhaps ask a group member to share their personal story. Some groups may elect to read a relevant book together and then discuss it at the meeting. And some groups plan social outings (eating at a restaurant), work on special projects (hosting a table at a health fair) or do volunteer work together. From my experience, I suggest building in time for free conversation and relationship building before or after the meeting. The possibilities are endless, and your group will come up with their own ideas to fit their needs and style. The support group will take on its own personality and momentum toward becoming a helpful community. There is no “right” way to organize a group, as long as it is safe, supportive, and respectful of all participants. 

The Facilitator’s Role: Creating the Right Atmosphere 

The facilitator of a support group has the responsibility of ensuring there is a welcoming and non-judgmental atmosphere in the meeting and encouraging sharing and participation. They act as gatekeepers to start the meeting on time and maintain the flow of conversation so everyone can speak and be heard. (Some group members may choose to not speak and that is okay.)  A facilitator will remind members of the importance of confidentiality and other rules. It is best to deal with issues immediately. The group process can become difficult at times and problems will arise such as:

  • Disruptive group members 
  • Meetings become negative gripe sessions. 
  • Confidentiality is broken. 
  • Group tension or interpersonal conflicts 
  • Inappropriate or unsound medical advice is given. 

The “Ideal Support Group Facilitator

Keep in mind as a facilitator you do not have to be an expert or have all the answers. Nor do you have to act as a therapist or counselor. There will be times when it is appropriate to refer members to outside services and resources. Linda Pogue, MSWDisability Rights and Peer Support Training Advocate, has trained peer supporters for many years. She says an ideal Peer Support Group Facilitator will: 

  • Have a purpose and a goal. 
  • Assist others in building their own independent lives. 
  • Work as a collaborator rather than an overseer. 
  • Run on empathy, not sympathy. 
  • Build Circles of Support around consumers. 
  • Build bridges to people and resources within the community. 
  • Involve friends and family. 
  • Help people help themselves. 
  • Keep all information about their peer group members confidential. 

Additional Tips for Facilitators

  • Transportation to meetings may be a problem for some members. Explore local options with the group and suggest carpooling as well.  Contact a local Lions Club to request volunteer drivers. 
  • Give an orientation of the meeting space. Include where the nearest exits are and how to find the bathrooms. Set the room up for best lighting and acoustics if possible. Chairs placed in a circle promotes a positive group dynamic. 
  • Be mindful of each member’s ability to walk, hear, and other physical limitations you will want to accommodate.  

Support for the Support Group Leader 

You will find great resources on the Second Sense website for starting and leading a support group including a leader’s manual, tip sheets, and topic ideas. There is another helpful Support Group Manual on the OIB-TAC website. With some preparation and planning, you can organize a vision loss support group that will help others to cope with vision loss, find the resources they need, and build friendships and connections in the community. And I dare say, you will enjoy many benefits yourself!