I’ve worked with a lot of support groups working in disability rehabilitation since 1974. The population of people with disabilities is diverse from developmental intellectual disabilities, blindness, deafness, spinal cord injuries and chronic illnesses.
It wasn’t until I was diagnosed with chronic lymphocytic leukemia that I discovered that not everyone knows how to run and manage a support group.The first problem I noticed was too many people in the virtual room. I attended three different online CLL support groups. The first was a group of around 20 individuals at various stages of CLL.Some had experienced secondary cancers, and some had severe side effects while others in the room were in watch and wait status.
This support group was a round robin where each person took a turn telling what was happening with their CLL.It was hard for me to understand the various treatments that folks had endured.Also, for those who were impacted by secondary cancer it was difficult to provide support outside of saying how sorry you were that they were having these issues. At the same time, I had difficulty sharing my thoughts as I was only in watch and wait and did not have the experience of those already in treatment.
My second support group again had too many people in various stages of treatment and only one or two in watch and wait.What really made this support group difficult was that rather than a Zoom meeting it was a group texting effort. When a person entered the virtual room there would be many greetings and updates but because the texts were coming in from everyone it was hard to keep up. Those who had side effects from treatment tended to text the most about their difficulties and many didn’t have a chance to say anything.
Happily, the last support ground I attended was well managed and only for those in watch and wait status. The moderator explained what symptoms would require treatment.Here is a quick summary.
Fever over 100.5 degrees F (38.0 C) for more than 2 weeks without evidence of infection
Night sweats for more than a month with no evidence of infection
Unintentional weight loss of more than 10% in the last 6 months and
Extreme fatigue.
She also took the time to answer questions that had been provided earlier or were asked when someone raised their hand.
She didn’t allow anyone to dominate the conversation and reach out to those who hadn’t said anything.
I worked with individuals who experienced severe disabilities in the Independent Living movement. Here are some of the rules we followed for support groups.
You want to have people who gather to share common problems and experiences associated with a particular problem, condition, illness, or personal circumstance. It is helpful to have an experienced person who has lived with a spinal cord injury to talk to someone who has completed inpatient rehabilitation.
In a support group, it is important that people are able to talk with other folks who are like themselves – people who truly understand what they’re going through and can share the type of practical insights that can only come from firsthand experience.
Effective support groups should have these features:
- They are made up of peers – people who are all directly affected by a particular issue, illness, or circumstance.
- They usually have a professional or volunteer discussion leader or facilitator.
- They tend to be small, to better allow everyone a chance to talk.
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