This article by Emily K. Outtarac, Administrative Assistant, Medical Services, first appeared in Issue 1 2018 of Pathlight magazine. Become a member of PHA to receive this quarterly publication full of patient profiles, medical information and tips for living with pulmonary hypertension.
The PHA Support Group program offers in-person meetings to exchange tips, learn from experts and provide support and empowerment to all those affected by PH. While many of PHA’s Support Groups are led by patients, there are a number that are led by health care professionals. I spoke with the leaders of three different support groups led by health care professionals at PHAaccredited PH Care Centers (PHCC). The PHCCs initiative established a program for accreditation of clinics and centers with special expertise in treating pulmonary hypertension (PH) to raise the overall quality of care for people with PH. Since its inception, the PHCC program has accredited 56 centers: 45 adult Centers of Comprehensive Care (CCC), eight Pediatric CCCs and three Regional Clinical Programs (RCP) across the United States.
During the day, Marty Rice, Tina Stiyer and Laura Camponeschi work as hospital staff, and at night they volunteer their time to their patients. They are part of a group of hospital staff who also lead support groups. These three women detailed their journey from health care professional to support group leader and how instrumental the PH Care Centers (PHCC) initiative has been for their PH program.
How did you first become involved with the Pulmonary Hypertension Association (PHA) Support Group program?
LC: I have been the administrative coordinator for the PH program at Johns Hopkins Hospital for the past eight years. Through my conversations with patients, I noticed what an isolating and frustrating disease PH can be. Our patients and their caregivers needed an opportunity to connect with one another in a more relaxed environment other than in the waiting room of the doctor’s office. With the encouragement [and help] of my mentor, Traci Housten, R.N., M.S., and Michael Knaapen, PHA’s director of patient and caregiver programs, I was able to establish our support group in September 2016.
MR: I took this position with the University of New Mexico Hospital (UNMH) PAH Clinic in November 2015. In my first staff meeting with the clinic team, our medical director, Dr. Lana Melendres-Grove, simply said, “Marty, our patients need a group. Can you do that?” As it happens, I am a clinical social worker with two decades of experience. In dialogue with the clinic staff, we crafted a vision for our group which included education, resources, nurturing and connectedness. Everyone was clear that “support” would arise simply as a part of connectedness and engagement with peers and with presenters and clinic staff involved in the group.
TS: I first became involved when our nurse practitioner, Amy Kimber, R.N., APNP, and I set up a support group for our facility, [Froedtert & the Medical College of Wisconsin], about seven years ago. We both were involved as members of PHA, but wanted to do more for the population that we care for on a daily basis.
As a support group leader, what are the goals you have for members of your group?
LC: As a support group leader, my most important goal has been to make sure the group meets the needs of all our members.
I also strive to ensure that everyone in the group feels valued by taking the time to speak with everyone to let them know that I appreciate their attendance and to solicit feedback. I always want members to know that this is their group and that it has been created [for] helping them. I want them to feel comfortable coming to me if they have any suggestions on how to improve the group.
MR: It is a vital part of our group process to identify patient interests and needs. This is a place and a time for, and about, them.
Another major goal for the group is to show our patients the depth of our caring for them, their families and caregivers. Dr. Melendres-Grove was clear in her vision that we would provide lunch during each group [to] demonstrate a different way of “caring” for our patients. [The] PHA Support Group Central Fund has been an amazing resource for those months when we have speakers from inside our own system. Our RN care managers attend groups with me, helping to serve our patients and “catering” to them in any way we can!
TS: Goals I have [are] to make our patients more aware of their disease, resources that are available to them [and to help them] realize they are not alone. Another goal is education. Whether it is learning about their disease, how to travel with specialty medications, oxygen or a sleep apnea machine or insurance tips, I want to provide patients [with] different topics to keep them interested.
How has becoming a PH Care Center (PHCC) accredited site supported these goals?
LC: Going through the PHCC application and accreditation process allowed us to examine our program as a whole. We were able to spend time thinking about and documenting areas of patient care that we managed extremely well and also identify areas that we could improve. While we had been connecting patients in less formal ways and had organized several day-long PH educations programs for patients, it became clear to our team that providing a structured support group program for our patients was important. The PHCC process helped us operationalize how to do this and, most importantly, which team members were best suited to staff it.
MR: Our patients who come to group verbalize great pride in this designation! Many of them were misdiagnosed or under-treated for years. They have a sense of loyalty to our clinic and seem to feel that the designation of PHCC validates this loyalty. They also verbalize appreciation for the expansion of the accreditation program. Hopeful that as the program grows, more people will get to treatment sooner. We all are hopeful that an expansion of the accreditation process will support increased research and treatment development for PAH.
TS: [Being] a PHCC has further helped by recognizing that we provide advanced care for PH patients through experience — and through our ability to treat all types of PH — and provide specialty medications if deemed appropriate.
What is your favorite part of leading your support group?
LC: My favorite part of leading our support group is getting to spend time with patients and caregivers in person and in a less formal setting. Before starting the group, I mainly interacted with patients over the phone all day and our conversations were always about medical matters. Leading our support group has given me the opportunity to step away from the desk and get to know patients and caregivers on a more personal level.
MR: I love our patients! I love seeing them come to group for the first time, begin to make connections with peers, and to hear them say “It helps so much to know that I am not alone.” It also is gratifying to have them say to presenters, “That was a great presentation – I learned so much!”
TS: My favorite part has and continues to be getting to know the patients personally, as well as networking with other support group leaders. Also, as a member of the Support Group Leader Advisory Board, I feel more useful and knowledgeable in a role of the support group leader
Regardless of location or center size, the compassion and commitment of these leaders is evident and reflects the goals of the PHCC initiative as well as support groups across the country.