Psychosocial Support and Wellness Programs for the Cystic Fibrosis Community
Today, Siri Vaeth, MSW, works as executive director of the Cystic Fibrosis Research Institute (CFRI), a charitable organization that serves as a global resource for the cystic fibrosis (CF) community. But back in 1995, Vaeth had never even heard of CFRI. She had a daughter who was newly diagnosed with the disease, and she found a flyer for CFRI’s annual conference at her daughter’s CF clinic – a serendipitous event that would change everything.
Real World Health Care recently spoke with Vaeth about how CFRI supports the CF community through multi-faceted programs focusing on the psychosocial and wellness needs of CF patients and their caregivers.
Connections and Community
Real World Health Care: What drew you to get involved with CFRI?
Siri Vaeth: I was in shock when first learning about my daughter’s CF diagnosis – she’s now 26 years old. I saw a flyer for CFRI’s annual conference in my daughter’s clinic and decided to go. It was like walking through a magic door – I found my tribe!
The event was a perfect blend of incredible information from experts around the globe and a strong focus on community. It was a wonderful opportunity to connect with other parents who had children with CF as well as adults with CF. Most importantly, it gave me hope.
I came to learn that CFRI was founded in 1975 by a group of parents whose children weren’t expected to survive to adulthood. CFRI was formed specifically to fund research, but it quickly evolved and grew beyond research to include advocacy, educational programs and very strong psychosocial support and wellness programs. I am incredibly honored to serve as the executive director for an organization that has not only changed the lives of my daughter and me, but so many individuals and families impacted by CF.
Psychosocial Support for a Demanding Disease
RWHC: Why is psychosocial support so important for people living with cystic fibrosis?
SV: CF is demanding. Many people associate it with lung disease, and respiratory failure is the main cause of death. But it’s actually a systemic disease that involves every organ system in the body. The burden of care is quite high, and most people with CF put in hours of respiratory and medication therapies every day, which can be quite exhausting.
CF is an incredibly complex and capricious disease, and it can be incredibly depressing to live with – as a patient or a caregiver. Studies have shown that the rates of depression and anxiety among those living with CF are two to three times higher than that of the general population. And the highest rates are among mothers of kids with CF – a situation I know all too well.
Depression among CF patients has been correlated with poorer respiratory outcomes and other negative outcomes, including a low body mass index (BMI), which is particularly troublesome for CF patients who can’t properly absorb enough nutrients to maintain a healthy weight.
RWHC: How does CFRI help to support the psychosocial health of those living with CF?
SV: CFRI understands the mind-body connection. We know we need to address every part of patients’ and caregivers’ physical and emotional well-being.
We offer a range of psychosocial support programs and classes that address the impact of chronic illness on emotional health. We have monthly support groups for adults with CF, parents of children with CF, and caregivers of adults with CF, all of which are available online. We also offer an online bereavement support group for those who have lost a loved one to CF. We will soon launch a new post-transplant support group as well.
Our semi-annual community retreats – which have moved from an in-person to a virtual platform – are another great resource that provides social support to people living with CF and helps them develop positive coping skills. These retreats are significant, meaningful weekends for everyone involved and they reach capacity every year. When the COVID pandemic hit, we were initially concerned that our inability to host an in-person retreat would impact the ability of attendees to feel a sense of community, but I’m pleased to say that we had full capacity for our last two virtual retreats for mothers, with participants from across the country.
We also offer nationwide counseling support. Children and adults with CF, as well as their family members, are eligible to receive financial support for six individual therapy sessions per year with a licensed provider of their choice. CFRI covers the cost of insurance copays for six sessions, or pays up to $120 per session for six sessions if you have no insurance, or your provider does not accept insurance or is outside your network. More information about this support program can be found on our website, or by emailing Sabine Brants.
Work Out: CF Wellness Programs
RWHC: Why is physical movement and exercise so important for people living with CF?
SV: We know that exercise is good for everyone’s physical and mental health. It provides a therapeutic benefit for people with CF by improving quality of life, muscular strength and cardiovascular endurance. But sticking to an exercise program can be challenging for people with CF who have respiratory issues including impaired lung function, shortness of breath, and incessant coughing, as well as GI issues, osteopenia, gastric reflux, and joint pain.
RWHC: How does CFRI help people with CF start and stick with an exercise program?
SV: Our wellness programs aren’t generic exercise routines you may see at your local gym. They’re specifically tailored to the needs of the CF community and in most cases are delivered by people who have CF, have a loved one with CF or work in a CF clinic. They are therefore attuned to offering modifications for every movement and tailoring routines to those with special needs. For example, one of our physical therapists offers exercises to strengthen the pelvic floor for women with stress urinary incontinence, which is common in CF. Another teaches a series of breathing exercises for post-transplant patients to help them relearn how to isolate parts of their lungs in order to take a full breath.
All of our exercise programs – from yoga to strength training to physical therapy – are offered virtually, and at no cost, so they can be accessed from anywhere.
Speaking the Language of CF
RWHC: In addition to many of your ongoing programs throughout the year, your annual conference switched to a virtual platform this year. How has that event changed since you went to your first CFRI conference all those years ago?
SV: Can I talk about one important way it hasn’t changed instead? It continues to be a place where everyone speaks a common language, where even if you don’t know someone else personally, you deeply understand each other based on your common life with cystic fibrosis.
This year, our virtual platform gave us the opportunity to extend those community connections beyond people who might typically attend in person. We had 650 registered attendees from every state in the U.S. and 20 countries around the globe. We had a rock-star list of presenters on a variety of topics, and Francis Collins, director of the National Institutes of Health, inspired us with his welcoming remarks.
For those who couldn’t attend the live conference this past summer, we uploaded all the presentations to our YouTube channel. I encourage everyone living with CF to avail themselves of these online presentations and to “find their tribe” here at CFRI by connecting with others who understand. Because for many, it can be a very lonely journey.