Those with Fetal Alcohol Spectrum Disorder (FASD) can’t always access the services available to them, and Alberta Health Services (AHS) is looking to change that.
The FASD Patient Journey Project is a province-wide initiative that addresses issues people could face when trying to access services, such as navigating the healthcare system.
The project looks to interview those diagnosed with FASD, along with their caregivers in various communities throughout Alberta. It began earlier this year, with some interviews taking place over the summer.
“It’s really important that it’s happening,” noted Lisa Murphy, executive program manager for the Lakeland Centre for FASD. “We get a better understanding of how people with FASD can navigate the health care system, and it allows us to improve the system for better services.”
Randal Bell, senior advisor for Indigenous populations and lead for the project with AHS, said, “The challenges facing the people accessing services in urban areas are going to be completely different than the challenges of people accessing services in the rural parts.”
He added, the questions included in the interview mainly focus on the services people have accessed and ones they feel are missing.
“The feedback I’m getting on the interviews so far is very positive, and people leave the interviews feeling invigorated and heard,” he explained.
Murphy added, “We know the health care system... process is quite challenging, and for individuals with FASD, it can be quite difficult. We want to see if there’s an issue with the system, or if there’s more supports needed for individuals with FASD.”
So far, Bell and his team have visited 36 communities throughout Alberta and conducted over 85 interviews.
“It’s really about capturing those stories and really trying to understand the needs from the service users’ perspectives. Obviously, identifying opportunities we can help out,” Bell expressed, adding they’re still looking to include more perspectives from Indigenous communities to ensure the results are well rounded and address as many groups as possible.
They were hoping to have interviews wrapped up by the end of January, however, AHS has decided to extend the program until mid-February.
“There’s always room for a few more (participants). Basically, we’re wanting to hear narratives. We really want to hear from the service users and caregivers so we’re not going to shy away from another opportunity to hear those stories,” Bell described.
Primarily, Bell and his team visit communities to conduct the project in sessions at local health offices or community service offices. While they’ve made the trip to the area before, they will come back to ensure they hear from everyone interested in participating.
Those interested in participating can either reach out to the Lakeland Centre for FASD at 780-594-9905, or to Bell directly via email at [email protected] or by phone at 780-224-5802.
