In-Person Support Returns as Online Meetings Take Root

Patient and caregiver support has been a Pulmonary Hypertension Association priority since our inception. We started offering patient support in 1991, the year PHA began, and thousands of people with pulmonary hypertension have found support and connections ever since.

In the early months of 2022, PHA offered only virtual support group meetings. The online meetings allowed people from anywhere in the U.S. to find support and comfort amid ongoing isolation from the COVID-19 pandemic.

In March, PHA conducted a large, national meeting led by social workers. The social workers provided strategies to cope with isolation, caregiver burden, risks and stressors related to returning to in-person medical care.

From there, PHA gradually transitioned to in-person support activities. Beginning in March 2022, PHA began offering inperson, virtual and hybrid support options to meet the needs of those who wanted to meet in person and those who weren’t ready.

In a unique pilot project to connect people who have PH and associated conditions, PHA worked with Cure HHT to start a community Facebook group for those with PH and HHT.

VOLUNTEER TRAINING

PHA provided “support the supporter” training and networking opportunities for our 300-plus peer support volunteers.

In September, PHA conducted a regional in-person support group leader training in Louisville, Kentucky. Nine leaders attended, representing six support groups from Ohio, Kentucky, Michigan and Indiana. This day of educational and networking activities covered planning, advertising and running support group meetings. Leaders discussed crucial aspects of support group meetings, such as respecting confidentiality, making attendees feel welcome and supported, giving everyone a chance to share, handling difficult situations and providing education or new information.

In addition, the PHA 2022 International PH Conference and Scientific Sessions offered a networking event just for volunteers. The volunteers met and mingled with each other and with PHA staff. By bringing together hundreds of patients and loved ones from around the country, PHA 2022 also hosted support group meetings for long-term thrivers and family caregivers.

Joining a support group and now being a support group leader has helped me find my best new normal. What I have learned from the speakers and from the group members has helped me be successful in my endeavor to be as healthy as possible.

LES FREEMAN | Bend, Oregon