More than 34 million Americans live with chronic obstructive pulmonary disease (COPD), asthma, pulmonary fibrosis, lung cancer and other lung diseases. Many of these patients, especially those who are newly diagnosed, are inundated with information and lifestyle changes that can become overwhelming. “It is a lot to deal with and people just want to feel like more than their diagnosis, they don’t want it to define them. So, the Wellness Hub is there to offer an expanded perspective about the disease,” said Jenna, a long-time wellness coach and the Patient & Caregiver Network’s signature expert.
In 2023, the American Lung Association launched the Patient & Caregiver Network (PCN) to provide people living with lung disease and their families with critical support, education and access to emerging research, like clinical trials. Seeking to do more than just dispense information, the PCN created a new benefit, the Wellness Hub, which provides wellness practices and exercises that are specifically designed to support people living with lung disease and help them improve their quality of life.
Not Just a Trend
Jenna has made it her mission to address underserved clients, specifically those living with a chronic illness. “Unfortunately, the dialogue around wellness rarely includes those who are navigating disease. I have made it my mission to research what is important for this population when it comes to habit building, behavioral change, motivation and relevance,” Jenna explained.
Jenna is the first to agree that no one wants to be on a special diet or exercise program. It can feel overwhelming and restrictive. But if you are doing these things because you believe there is something bigger in this life for you, that is a powerful motivating factor. “I recently worked with a woman who is undergoing immunotherapy for lung cancer, and we had to find her source motivation and how to address well-being on a spectrum. Often, we think wellness looks only one way; a lot of energy output or a super healthy diet, something that is ‘Instagramable,’ a huge change. But really it is about small steps every day. So, I worked with her to establish the overall goal, which for her was to there for her grandkids, not just seeing them but being present in their life. Once we connected to that bigger want, she started recognizing some little things she could do outside of our sessions. Each step is relating back to her bigger motivation which makes it seem more manageable and even enjoyable.”
Visiting the Wellness Hub
It is insights like this that helped shape the Wellness Hub offerings. Feedback and perspective from our Patient and Caregiver Advisory Groups (PAGs), in conjunction with feedback and guidance from our medical, scientific and public health advisors, help us create materials that would better serve the 34 million people in the U.S. living with lung disease.
In the Wellness Hub, patients and caregivers will have access to six featured libraries that each address a pivotal health topic. They include:
- Movement: Practices that are gentle in nature and supportive for people living with lung disease.
- Mindfulness: Simple practices designed to cultivate more resilience and stress management.
- Shared Strength: Classes intended for a patient and their caregiver to help expand their relationship. This includes brain fitness classes, partner stretches, and other interactive activities to help with communication and foster a healthy patient and caregiver relationship.
- Nutrition: Guidance on healthy eating, including innovative and delicious recipes, specifically designed for people with lung disease.
- Learning Lounge: A safe space where patients’ stories can be showcased, and doctors can share insightful information.
- Self-Inquiry: A place for members to take time for themselves. These practices focus on navigating through hard times, cherishing the wins and connecting to a bigger purpose.
These libraries aim to support both the patients and the caregivers by offering them an outlet to learn what they need in a place they trust. When accessing the Wellness Hub, you are getting free comprehensive practices that look at wellness from a variety of different angles. “My hope is that people will feel like these practices were really made for them and help them get through whatever they need in the moment,” said Jenna. “I want them to feel like they’re building toward something, whether that’s more physical strength or improving their mindset or increasing their breathwork.”
To learn more or to join the Patient & Caregiver Network, visit Lung.org/PCN.
Blog last updated: June 20, 2024
