Why Join a CKD Support Group?
Living with a chronic condition like kidney disease can leave you feeling isolated and alienated among family members, friends, and colleagues who don’t experience the challenges you wrestle with day to day and moment to moment.
Fortunately, there are both peer- and facilitator-led support groups available where you can:
- safely share your emotions
- hear first-hand experiences of living with the disease and its treatments
- trade coping strategies;
- receive encouragement
- feel connected, understood, and empowered
So, where are those support groups, and how do you find them?
7 Easy Ways to Find CKD Support Groups
Here is a sampling of in-person and online support groups and locators for people living with CKD nationwide.
Has a locator feature for independent support groups in 34 states, along with information about how to start your own support group.
Offers a program called NKF Peers. You can call, or fill out a form online and be matched with a peer mentor who will call you to provide moral support, and share experiences and tips about the disease management and treatments.
That’s us! We connect a supportive patient community via our digital platform where patients can find access to reliable information about CKD, share stories, experiences, and advice.
Holds in-person support meetings at its own ‘Studio Hope’ in Glendale, California, and also offers a support group locator for all 50 states and Puerto Rico.
DaVita Kidney Care’s online locator can help you find a dialysis center near you. Even if you’re not on dialysis, a social worker or other staff member at the center may be able to direct you to a local support group.
6. Educational and support sessions may also be hosted by your local hospital, health clinic, religious communities, and/or humanitarian organizations.
7. Online support groups, whether public or private, come in various forms:
- Facebook groups include The Renal Patient Support Group, Kidney Patient Support Group, Dialysis and Kidney Disease Support Page, Home Dialysis Central Discussion Group, Peritoneal Dialysis Support Group, and People of Color Renal, Kidney, Dialysis, and Transplant Support Group .
- PatientsLikeMe isn’t so much a support group as a forum in which people living with various conditions share their health data and experiences for the purposes of not only educating and supporting other patients, but also contributing to quantitative and qualitative healthcare research.
- In addition to its 1:1 peer phone support, the National Kidney Foundation also has specific online CKD peer support communities for kidney disease, dialysis, transplantation, kidney donation, and parents of children with kidney disease.
Questions to ask–and answer–before joining a CKD support group
While studies confirm that patients who participate in support groups enjoy a variety of benefits, not every support group is appropriate for every patient. Before joining a particular support group, ask the following:
- Is the group designed for people in a certain stage of the disease?
- Is it designed for a particular age group?
- Is there mandatory participation, or can you observe until you’re comfortable sharing?
- When, where, and how often does the group meet?
- Is it peer-led or facilitator-led?
- If there’s a facilitator, what is their training?
- Are meetings free? If not, what is the fee and what is it paying for?
Tips for Joining a CKD Support Group
Joining a support group doesn’t have to be a long-term commitment. Even if it is, you don’t have to stick with the first one you try.
- Some support groups meet once a month, others once a week. After choosing a group, attend for a few sessions or weeks to see if it’s a good fit. If you try several at the same time, you might want to jot down your impressions in a journal in order to keep them separate. You may find that a particular group or format helps you more than another.
- Pay close attention to the group’s protocols concerning sharing and confidentiality, and respect participants’ privacy.
- Watch to see how effectively the facilitator, whether peer, lay, or professional, guides the sessions forward and handles disruptive group members, negativity, and conflict.
- Beware of groups, whether in-person or online that:
- charge high fees (most support groups are free, though some may ask for donations of a few dollars per attendee for snacks and operation costs)
- require you to buy products or services from members, facilitators, or the host organization
- promise any particular outcomes from group participation, whether medical or otherwise
Remember that a support group is neither therapy nor a substitute for medical care. If you decide to participate in a support group, let your doctor know.
If you decide not to participate in a support group but could use help adjusting to your situation, ask your doctor about finding an appropriate counselor or exploring other types of therapy.