What do people with aphasia and their families get out of attending our 2-day workshop, “I have aphasia – now what?” That’s just the question that Executive Director Jackie Hinckley, Ph.D., CCC-SLP, and Board member Debbie Yones, M.S., CCC-SLP, set out to answer with follow-up interviews.
Jackie and Debbie made follow-up phone calls to all the families who had attended the two-day workshop in the last two years. They were overjoyed to hear what people remembered about the workshop, and what helped them the most.
Three main messages came through from the interviews. The most mentioned them was that the workshop gave attendees a feeling of hope. People mentioned how understanding the long-term view, and long-term progress, along with resources and support made them feel hopeful about the future.
Attendees also frequently mentioned how much they benefited from getting to know others, and realizing that they are not alone. “Unfortunately, most families who are dealing with aphasia never knew about aphasia before it happened to them. So social support is critical,” said Debbie.
A third message that most attendees carried with them after the workshop was specific suggestions on how to communicate. Attendees mentioned learning how to wait longer, write down key words, and ask questions in a way that enables the person with aphasia to express themselves. “We teach the components of Supported Conversation for Aphasia, and that makes a big difference to families,” said Jackie.
The results of their follow-up is being presented at the AphasiaAccess conference in Orlando this week. The AphasiaAccess Leadership Summit is focused solely on life participation approaches to aphasia, and representatives from aphasia programs and centers from around the country will be there. You can view or download a copy of Jackie and Debbie’s poster presentation here: AphasiaAccess poster 2017
What questions do you have about aphasia? What information has helped you most?