Are Support Groups Available for People Diagnosed With a Terminal Illness?

There are various types of support groups available to people diagnosed with a terminal illness. Support groups can be social-media oriented, online forums, zoom meetups, telephone chat lines, or conducted in person. Groups may be open to all or only to those who meet certain criteria (for example, a specific diagnosis). Meeting intervals can vary from weekly to monthly or as needed. Regardless of the format, support groups can be a valuable outlet for those who feel uncertain or anxious about what comes next.

Choosing which group is best suited to your needs will depend upon the type of support you are seeking. Do you need emotional support? Would you feel comfortable sharing and learning from others with similar experiences? Perhaps you prefer to receive guidance from a professional facilitator? Or, maybe you just want some education or tips about how to cope with your disease and decline. Identifying what you are looking for will help you find a group that works for you. 

You should also be aware that some support groups may be designed for those with a specific disease, such as breast cancer or heart disease. There may also be age-specific groups or those that are open to caregivers as well as patients. 

Support group formats can also vary. Some of the most common include:

• Peer-led or self-help group — members lead and facilitate discussion among themselves
• Professional-led groups — a trained professional (counselor, social worker, psychologist, therapist) leads the dialogue among members
• Informational – a professional facilitator or guest speaker offers expert advice to educate participants.
• Online forums – many groups offer full autonomy if you wish to remain anonymous when posting

Benefits of Support Groups for Terminally Ill Patients

Although no formal studies have been conducted on the impact of support groups for people living with a terminal illness, Ariel Young of Portland State University in Oregon offers a literature review in her thesis: The Impact of Support Groups for People with Terminal Cancer on Preparatory Grief.

Her review of currently available research indicates that support groups can help terminal cancer patients develop more effective coping strategies when they have been aided in expressing their grief over losses which occur early on in the illness. These coping strategies include constructive emotional expression, managing physical symptoms, and maintaining realistic optimism about what remains of life. The author concludes that better coping habits may contribute to a longer survival time. 

Other benefits of participating in a support group may include:

• Fostering a sense of community; feeling less lonely or isolated
•  Reducing feelings of distress, depression, or anxiety
•  Positively affecting others (which can positively impact yourself)
• Improving an understanding or your disease experience
• Getting practical feedback about palliative care options
• Learning about valuable health or community resources

Where to Find a Support Group

There are many ways to find a support group to help you cope with a terminal or life-limiting diagnosis. As a first step, you may wish to:

•  Call your local hospital system or cancer center to ask about their support programs.
• Ask your physician, social worker, or nurse to suggest groups.
• Talk to other patients; ask if they have recommendations.
•  Do an online search for groups related to your diagnosis in your local area.

You can also check with an organization that offers resources and support for people living with your diagnosis. See our Additional Resources to learn more. 

Sources
“Life Near Death: The Impact of Support Groups for People with Terminal Cancer on Preparatory Grief” . Portland State University. https://pdxscholar.library.pdx.edu/cgi/viewcontent.cgi?article=1063&context=honorstheses