The Healing Power of Support Groups

Support groups are more than just feel-good gatherings of likeminded individuals. They can positively impact how patients decide on, deal with — and respond to — treatment.

To navigate challenges throughout life, many people turn to support groups. These groups run the gamut from weight loss to addiction recovery to wrestling with grief. For patients reeling from a medical diagnosis, facing surgery or other treatments, or coping with a chronic condition, a support group can provide a much-needed lifeline. Such groups also offer moral support for caregivers, whose emotional and physical needs often take a back seat to those of the patients they are assisting.

According to the Mayo Clinic, a support group can give members the opportunity to:

• Share personal stories
• Talk about feelings and concerns
• Offer coping strategies
• Provide information relevant to the specific disease or condition

Support groups are more than just feel-good gatherings of likeminded individuals. They can positively impact how patients decide on, deal with — and respond to — treatment.

One survey of peer support group participants brought to light both benefits and challenges associated with such groups. The study found that peer support programs offer informational and psychosocial support, reduce social isolation, and help with navigating the health system. Challenges uncovered include peer-to-peer matching, peer relationship boundaries, and skepticism from healthcare providers. 

Another study makes a strong case for support groups, suggesting that they help patients manage and prevent chronic ill-health conditions such as noncommunicable diseases and injury. Other studies show that community-based support groups also improve patients’ adherence to therapeutic regimens.

Such support groups offer more than just bonding and venting opportunities. They provide  access to information and educational resources relevant to a particular condition or disease.

Helene Fisher, a breast cancer survivor, is passionate about educating and advocating for other women with HER+ breast cancer. She devotes hours daily as volunteer moderator of a  Facebook support group for women on hormone therapy. Since its creation 10 years ago, the group’s ranks have grown to more than 18,000 members.

After Fisher completed breast cancer treatments, she was prescribed hormone blockers to prevent a recurrence. “I joined a group that was so negative,” she recalls, “that I was terrified to even start the drug. After doing well on the drug for a few months, I realized there was no longer an administrator of the group.” The rest, as the saying goes, is history.

First, Fisher removed members who were touting conspiracy theories. With an allied health background, Fisher began posting and quoting articles from medical journals.

“Many members private-message me,” Fisher says, “thanking me for keeping the group professional and providing facts, not opinions, about treatments. We always recommend second opinions and to discuss everything with your doctor. … Also, everyone should know how to get a second opinion, and we help them figure that out.”

Even parents who are healthcare professionals need support. Having extensive medical knowledge can be both a blessing and a curse. Unlike parents lacking a medical background, these parents cannot remain blissfully unaware of all the potential negative impacts of their child’s disease.

Ellen Audet, a retired nurse educator, knows how valuable a support group can be for caregivers. Her daughter, Ashley, lives with cystic fibrosis (CF). Now 41, Ashley received a lung transplant 15 years ago and today is a proud mother of four adopted children and one grandchild.

Audet wasn’t always a nurse, however. “One reason I became a nurse was because I didn’t think I knew enough to take care of Ashley,” she says. The family still attends a free camp for those impacted by CF. The camp offers support group “powwows,” friendly competitions, themed dinners, and more. Audet notes that healthy siblings such as her son Justin also benefit from support groups; they must deal with feelings of neglect as all attention is focused on the child battling illness.

Audet says that ongoing support groups such as Parent to Parent “teach you those little things that nobody knows about, those little things that we take for granted,” such as pharmacy discounts and setting up medications (her daughter takes 25 pills a day).

Advocacy groups for diseases like CF offer more organized support groups. They also are a reliable source for up-to-date information on a specific disease or condition.

When it comes to clinical trials, however, both patients and their physicians are often unaware of relevant opportunities. Sponsors that actively publicize ongoing trials and maintain communication with disease-centered patient communities are ultimately more successful in recruiting participants.

For sponsors seeking to inform patients and caregivers about upcoming opportunities for participation in clinical trials — and to promote retention among participants — a Citeline Community Portal is a turnkey solution that builds both awareness and trust among patients, and builds a database of interested patients for sponsors. Learn what to look for in patient engagement and recruitment solutions, and how Citeline checks all the boxes, in our comprehensive guide.