As a research assistant for PHA Canada and a graduate student of public health, I firmly believe that we need to engage the impacted communities to improve their overall health and well-being. The goal of the PH community survey was to provide an opportunity for everyone affected by PH to share their thoughts, their struggles, and their concerns. Working together, we can spark change for a better future so that those with PH can have better lives.
When I started my practicum with PHA Canada, I had no idea what PH was. It wasn’t until I attended the National PH Conference, this year, and listened to the heartfelt conversations, that I started understanding this disease. Following the Conference, I realized that more public education was needed. Caregivers (98%) and patients (95%) who filled out our survey agreed that public awareness about PH is low.
Thank you to all 307 patients and 77 caregivers that responded to our survey. As a researcher, I can tell you that the more data you have, the better the results. It was very interesting to see that the results came from across Canada. Although most of our respondents are from Ontario (36%), British Colombia (25%), and Quebec (22%), we have representation from all other provinces. This demonstrates that we can live far apart but share similar experiences. Results from our survey highlights generational diversity among our respondents. Patient respondents ranged from the ages of 16 to 89 and caregiver respondents ranged from the ages of 31 to 77.
Another interesting highlight from the PH survey: 36% of patients reported not having a caregiver. As a research assistant, I am also reviewing the availability of bereavement, grief support, and peer support services. I hope you all know; you aren’t alone.
To end on a positive note, it was very exciting to notice that most patients (56%) and caregivers (44%) reported that it took approximately six months to receive a PH diagnosis. I am convinced that the delay to receive a PH diagnosis will shorten the more people advocate for better resources, support, and treatment options.
I know you are excited to learn more about the results; I will to continue to review them, share the successes, and identify potential obstacles we need to overcome. We need you to spark change!