SINFONIA is a research study that aims to see if taking part in an online, singing for lung health program is beneficial for people with chronic lung disease. We spoke with Anne, a 72-year-old woman living with idiopathic pulmonary fibrosis (IPF). Anne tells us about her experiences of taking part in the SINFONIA clinical trial.
Can you tell us a little bit about your respiratory condition, how it impacts your day-to-day life and living with idiopathic pulmonary fibrosis?
“I first discovered the problem because of the stairs. Before I could go up and down without any problems. And then all of a sudden, I got to the top and I was puffing. My condition makes me very breathless when I’m active, especially when I’m trying to do things around the house. Everything just feels too difficult.
The fibrosis also makes me cough a lot. I’m on medication to try to reduce the coughing. I go to church and the coughing can become very embarrassing. Even when you’re out and about, you know, after the COVID pandemic, people kind of look at you very strangely when you cough. I just can’t do parties and things.”
What motivated you to become involved in the singing for lung health SINFONIA clinical trial?
“The singing for lung health SINFONIA research clinical trial sounded fun and I like singing so it appealed to me immediately. And there’s no cure for my condition, so you just do the best that you can for yourself and try new things while living with idiopathic pulmonary fibrosis. Things won’t always work for you. But if you’re going on trials, it might help someone else in the future.”
What did you hope to achieve through your participation in the study Anne and what was your experience?
“SINFONIA is a wonderful program, which makes everybody feel included. A lot of people don’t breathe properly and I was one of them. The music therapist taught me to breathe in a kind of different way and that really helped. The breathing exercises have been absolutely super for living with pulmonary fibrosis. And at the end of the sessions, we all feel better than when we started. During the singing for lung health SINFONIA sessions, the other participants and I also felt really hopeful and happy.”
What would you say to other people with a similar lung condition who are considering being involved in this research study, singing for lung health or other clinical trials?
“Do it! Just get, just get involved in a clinical trial, be part of something that you can enjoy that is fun and just find out what’s out there. Just have fun! Since being involved, I’m back singing in a choir and I’m really happy. It has made a big difference.”
More information
SINFONIA is a 12 week clinical trial in which people with a chronic lung disease and living with idiopathic pulmonary fibrosis can take part in a group singing for lung health program. The sessions are conducted online through Zoom and run for 90 minutes once a week. Participants either start the singing program straightaway or are invited to join after 12 weeks. Carers of people participating in SINFONIA may also choose to join.
If you are interested in participating or if you are a clinician who wants to refer a patient to the trial, please contact The SINFONIA team’s research assistant Catherine Buchan: c.buchan@alfred.org.au.
