Allied Health Professionals Share Support Group Experiences

In addition to their work in clinics and research labs, many allied health professionals participate in patient support groups. We spoke with a few of them to hear why they choose to be involved in support groups and what they get from these experiences.

Sandra Lombardi, RN
Leader of the San Diego Support Group

When I joined the San Diego support group 13 years ago, PH was an isolating disease and patients felt very alone, not knowing how to live their lives with the disease. The support group was an important opportunity for patients to connect with each other and end the isolation. I wanted to be a part of the group to help in any way that I could to improve the quality of life for our patients.

When I am involved in the support group, I really feel like I am making a difference. It is so rewarding to help even just one patient. If I can talk to a patient at a support group and help that patient to get the resources he or she needs to improve his or her life, it makes me feel a real sense of accomplishment.

Fran Rogers, CRNPFran Rogers, CRNP Co-leader of the University of Pennsylvania Health System PH Support Group

I wanted to be able to help our patients and their caregivers outside of a strictly clinical setting. To be able to sit across the table from them and enjoy a light lunch provides a different setting for education as well as information sharing. Our support group attendees share coping mechanisms and cheer each other on. The group is an integral part of helping patients live with PH.

I feel recharged after leaving a meeting. It is moving to see the way patients and their family members comfort and encourage each other. Support groups remind me why we, as healthcare professionals, need to continue to help provide hope in any way we can. I think support groups are definitely one way to do that.

Amy Kimber, APNPAmy Kimber, APNP Leader of the Wisconsin-Southeast PH Support Group

When I began working in PH, I made it my priority to start a support group. I felt the group would be an integral part of each patient’s care plan. I believe it is important to provide patients and caregivers with a forum for sharing ideas and concerns about living with PH. My approach to patient care is to make sure my patients have the tools they need to understand and manage their own healthcare needs. I truly enjoy helping patients realize that they are not alone in their journey.

Chris Archer-Chicko, MSN, CRNPChris Archer-Chicko, MSN, CRNP
Co-leader of the University of Pennsylvania Health System PH Support Group

I started the UPHS Pulmonary Hypertension Support Group in 2008 because I wanted another setting to educate patients and their families about PH and how to live with this difficult disease. I felt it would be helpful to have PH patients meet other PH patients.

Very simply, my involvement in our PH support group brings me a sense of joy. My typical days are stressful with numerous phone calls and emails, coordinating procedures, completing tedious paperwork and trying to get multiple tasks done in a timely manner. I enjoy interacting with the patients in a more social and relaxed setting. In our meetings, we invite patients to share their experiences, offer comments and ask questions. I often learn from the patients themselves. My greatest satisfaction is watching one patient support another through a difficult situation, such as getting used to supplemental oxygen, coping with fatigue, facing fears, etc.

Antonia Heininger, BA
Contributor and Presenter for the Rochester, N.Y., Support Group

In our work lives as healthcare professionals, we see the patient as someone with a disease who needs healthcare. We churn out prior authorizations, schedule tests, etc. At the support group meetings, we see the person and how they interact with their family, how dedicated and hardworking their caregivers are and how the disease affects them beyond the clinical setting. We get to see their latest art project and pictures of their grandchildren and hear their stories. These things are a real motivating factor for me when I am swamped with work; it helps me remember why I choose to work with people with this disease.

I find inspiration from our support group. They remind me every day not to take life for granted, to live life to the fullest, and embrace challenges. If our patients can face each new day and each new set of challenges with a smile, then I can too.

 

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NORD

The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.