Dysphagia Support Groups: Personal lessons learned

I have had the pleasure of working with individuals with dysphagia for almost 17 years. This experience has provided a plethora of learning opportunities that have transcended well beyond the clinical realm.

We as clinicians often focus all of our energies managing the physiologic effects of the disorder on our patients. We frequently lose sight of the emotional toll that is also involved. This is what prompted my interest in starting a dysphagia support group. The decision was sparked by an overt influx of patients with severe-profound dysphagia. Each of these patients relayed a story that reflected similar themes. Specifically, they spoke of the impact of dysphagia including altered quality of life, social isolation and depression. It became clear that as a clinician, I had a responsibility to provide a safe forum to share these thoughts and emotions with one another.

In preparation for my group, I developed a rigorous agenda that included multiple educational topics. I created nametags and fliers and started to pass them out to all of my patients. Unfortunately, I have limited space for the meeting, so I had to limit our initial session to 5 people including patients’ caregivers. I enthusiastically presented my plan to the group that included a long list of learning objectives. Upon completion of my spiel, I took note of the uncertainty of the group. This sparked learning opportunity #1: “Ask your group about their personal objectives”. Once I asked that basic question, the proverbial floodgates opened and I received extraordinary information. Learning opportunity #2: “Give the group time to develop a strong and safe relationship with one another”. Developing this intimacy is what allows the group to flourish. Patients need to speak honestly and candidly with each other. This is when you will see the true benefits of the forum as patients/caregivers graciously share their thoughts and emotions. Learning opportunity #3: “Keep the group small and choose the group wisely”. Initially, I had a vision of filling a small auditorium with a diverse grouping of patients with dysphagia: WRONG. In my opinion, the ideal group should include approx 5 patients with their family/caregiver. The small forum will allow for maximum participation and comfort. Similarly, patients should be somewhat homogenous regarding the severity of their disorder. Placing patients with mild dysphagia with others who are feeding tube dependent may inspire negative feelings for participants. Learning opportunity #4: “Our job is to facilitate and allow for honest, albeit uncomfortable discussion”. It’s easy to assume that support groups should resemble a “Kum Bah Yah,” that they should be soft and light and make everyone feel great. Unfortunately, the nature of dysphagia creates sad, uncomfortable and sometimes confrontational dialogue between participants. The role of the facilitator is to allow for respectful interplay with some redirection if the discussion becomes hurtful. I have seen wonderful results emerge from difficult interactions. Last but not least, learning opportunity #5: “If your boss says ‘no’ to your idea to host a group, keep fighting until he/she says ‘yes’”. I have found that there are creative ways to fund these groups. Our organization allows for billing hours into a community benefit cost center. This gives me a small amount of time to prepare for and host our meetings.

My sincere hope is that more and more clinicians will embark on this journey. Hosting groups is gut wrenching, however, it complements everything and we stand for. I pride myself on spending countless hours on advancing my education and clinical experience through courses and self-study. Ironically, I feel as if I have learned more about dysphagia and the patients’ I treat through this amazing group venue.

Best regards and Good Luck!
Liza Blumenfeld