When a patient is diagnosed with pancreas disease, it can be very isolating as most people have never heard of pancreatitis or if they have, they might not fully understand the condition. "Find a support group," said Haley Grammer, whose son,
, has pediatric pancreatitis. "There are other parents going through the same thing. I know it feels like you are alone, but I promise you aren’t."
The National Pancreas Foundation has Chapters throughout the nation. Each Chapter has a Chair or Support Group Chair that organizes a support group. We asked Indiana Chapter Chair, June Strayer; Michigan Chapter Chair, Robin Winke; and North Carolina Support Group Chair, Kathleen Perry about their experiences with creating a support group.
How did you start the support group?
JS: Once I had a medical director, where we discussed the format and set up a date at the NPF center in our state. We advertised on Facebook, and out flyers around the hospital.
KP: I met with our psychosocial faculty (at WFBMC) to get their input, and also met with an internal Oncology Nurse Navigator who runs a successful multiple myeloma support group.
RW: I determined there was a need.
How did you pick the location?
JS: It was free! We also started originally with a doctor speaking at each group, then wanted it to blend into a q and a session after. We did three or four like this, then found people were leaving after the doctor spoke, so we changed the format.
KP: The Comprehensive Cancer Center at Wake Forest Baptist is a high volume center for complex hepatopancreatobiliary diseases. I had anticipated more internal patients and caregiver interest for that reason, and hoped that perhaps they’d be available to come to the support group if it were on campus. It’s also a safe environment with handicapped and valet parking, and wheelchair accessible bathrooms.
RW: I looked for a location near Michigan Medicine since this was our market. (The support group meets every month at the Ann Arbor Library)
What do you think participants gain from being with others and talking about pancreas disease?
I think it’s tremendously liberating and a huge relief for patients to meet others who truly understand where they are coming from. This disease can be very isolating, and while it isn’t a real “visual” disease that you can see when looking at someone, people sometimes don’t grasp the depth of what you are going through. Or think you are even ill.
KP: People want and need to connect with others who are experiencing similar symptoms or facing a similar disease. Pancreatic diseases can be isolating for patients, and caregivers often experience anxiety and depression as well. It’s so important for that person’s mental health to meet someone who’s come out on the other side.
RW: Participants have said the experience is helpful to talk with others going through similar. In addition, resources and education are valuable.
Do you have speakers come and talk? Is there structure to the group?
We have had, and it doesn’t seem to fit our area at this time. Most people did not want to go to a hospital setting as they can be triggered by simply setting foot in the door. We had decided to have speakers quarterly, but the turnout didn’t justify asking a doctor to give up one of their evenings.
KP: We had three guest speakers over the course of the year who came to discuss mental health, navigating the health system and nutrition. Mostly the in-person sessions were unstructured and informal.
RW: Yes! We Discuss about changes or concerns, which leads to finding speakers. ALWAYS include time for positive and support discussions.
What advice would you give to participants who might be hesitant to join an NPF Chapter Support Group?
JS: If you are feeling isolated or alone with your illness, we can help offer you the emotional support and understanding that’s hard to find elsewhere. Whether we can point you towards an NPF center, share ideas of how we coped or just be the shoulder to cry on. I have seen people leave more hopeful than when we first met. To see other people living with the same disease, hearing they felt a lot of what you do, and to be “heard” is truly life changing.
KP: It can be scary to try something new. However, the support group may turn out to be something you never realized you needed! Support Groups offer the chance to meet someone like you, to have a background of friends in your corner cheering you on or comforting you on a bad day. You also have the opportunity to learn about different pancreatic diseases or experiences, local treatment options and supportive care offerings (like nutrition) or community events.
RW: Come once and see if it is for you, no pressure to talk.
What are the rewards of running the Chapter Support Group?
The friendships you form, the satisfaction that comes from knowing someone left that night with a lighter step or a smile on their face, perhaps an idea of how to move forward in their treatment, means more than can be out into words.
KP: I loved meeting other patients and their caregivers. It’s truly an honor to listen to their stories, and have their happy and sad moments shared. One participant commented that after attending the support group “solidarity” was felt, and I would agree.
Come once and see if it is for you, no pressure to talk.
What would you say the biggest challenge would be?
JS: Getting a time and place that works for everyone! Coffee shops seems to be more informal and less threatening than a hospital. Setting up a meeting and being the only one there.
KP: I received more requests for virtual support than I did in-person. Part of this was due to the wide reach of the NPF. I think barriers to the in-person meeting varied, and depended upon the reason why the patient/caregiver was reaching out to begin with. For example, North Carolina is a large state so driving an hour or more to a one hr meeting isn’t feasible for most. Especially when recovering from surgery or undergoing chemotherapy. Same goes for benign disease patients/caregivers – it’s difficult to travel for extended periods of time.
RW: Getting the information out to people who are looking for this support.