An Interview with Aphasia House Founder Dr. Janet Whiteside, PhD, CCC-SLP

A mantle clock. A roll-top desk. A garden. A rocking chair. UCF Sports memorabilia.

No, these are not word-finding tasks. These are the elements that adorn and embody the unique comforts of Aphasia House, an innovative home-inspired outpatient aphasia therapy center at the University of Central Florida created by Dr. Janet Whiteside. “It’s the antithesis of a hospital,” Dr. Whiteside says; “no rooms with blank or beige walls and two chairs.”

Janet Whiteside, founder of Aphasia House

Janet Whiteside, PhD, CCC-SLP

Instead, the facility includes a kitchen, patio, attic, garage, game room, music room, and living room; it invokes natural conversation within calming spaces. Aphasia House hosts intensive therapy programs run by speech-language pathologists and students to help people with aphasia recover their communication and confidence. Although it opened relatively recently in 2010, Aphasia House has been a lifelong dream for Dr. Whiteside, who talked to Tactus Therapy about her vision for this unique model of aphasia therapy:

How did Aphasia House start?

“It started with a vision in 1975 when I was a graduate student at Vanderbilt University. One semester I had externship at the Mama Lere Home, a house where parents could bring their hearing-impaired children. There they would bang pots together, turn on faucets, and engage in everyday life to teach young children to hear and recognize environmental noises. It was both ecologically valid and fun. The next semester I was placed at a VA hospital where I fell in love with aphasia.”

It was then that Dr. Whiteside had an “epiphany” about how aphasia patients should be treated. Combining the two experiences, she said to herself, “someday we’ll have an aphasia house.” That someday would come at the University of Central Florida when Dr. Whiteside was given an opportunity to make her dream a reality. After writing business plans, collecting pilot data, soliciting seed money, filling out Medicare provider applications, and conducting research, Dr. Whiteside finally opened her clinic doors.

Welcome to the Aphasia House

Why has the home-like setting worked so well?

“I strongly believe that environment facilitates one’s comfort to talk and to socialize. Conversation is relational, and where do we learn about relationships but in the home? Simulating the home environment lends itself to stimulating natural conversation. And you know, everyone always congregates in the kitchen!”

Aphasia House Kitchen

The large kitchen at Aphasia House

How does Aphasia House reflect the Life-Participation Approach to Aphasia (LPAA)?

“Even though impairment-based outcomes measured by standardized tests are of value, what speaks volumes is when you have met your personal goals and your family feels that treatment was successful. We measure success those two ways: have you met your goals and how does it make you feel, and how has the family adapted to and feel about your progress? We’re also really looking at the psychosocial impact of aphasia on the person and the family.”

Aphasia House speech therapy room looks like home

A therapy room here is comfortable and homey

What is the therapy experience like at Aphasia House, and how is it unique?

“What makes us unique from other intensive programs is twofold. First, all of the face-to-face treatment is done by students. We are part of the university clinic, so I have 16 eager students working with me. Secondly, we can individualize every hour of treatment to maximize their therapy goals. Once accepted I ask the clients, ‘what are YOUR goals?’ They select four areas they want to work on, like conversation, understanding, writing, and word finding. Then, the students do a literature review to find the best evidence-based treatments for the client in those skill areas. At any one time we have four very different treatments going on. This makes us very unique – we’re not constrained to making everyone do the same thing.”

Aphasia House group therapy room looks like a home office

Group treatment doesn’t have to be in a classroom setting

Thematically, clients get to choose the topics too. Each client is encouraged to pick six things they want to talk about – from China to exercise to gardening. Client-centered topics teach both the participants and the speech therapy students. “One client was a geophysicist. And we’ve had a lawyer who liked reviewing his cases,” Dr. Whiteside laughs. “The students had to learn law!”

The close-knit community Dr. Whiteside and her students foster is another invaluable element of Aphasia House. She says one of her favorite memories over the years has been watching groups of clients bond beyond the clinic. One group in particular “developed such connectedness that they’d go out together on the weekends. They even initiated parties at the Aphasia House!” As people, Dr. Whiteside says, “the groups have taught me a lot.”

Aphasia House attic has conversational stimuli

The attic room sparks conversation and memories

Who is a good candidate for therapy at Aphasia House?

“I prefer patients be at least six-months post-stroke or brain injury. We’re getting referrals earlier and earlier, but the client has to have been seen by a neurologist and be medically stable. The biggest factor is to have the stamina to endure four hours of therapy. You have to work from 9 am to 1 pm on the thing that causes the greatest frustration in your life – it’s something to consider. Clients also need to be independent with their activities of daily living (toileting, eating, etc.).”

How has technology been incorporated into the work at Aphasia House?

“It’s very interesting! Seven years ago in 2010, when I started to ask, ‘do you have any electronic devices you’re using?’ it was 50/50 for those who were using technology versus those who weren’t. Now, I don’t have a single person who doesn’t have a tablet, smartphone, or AAC device. Technology is now an integral part of our lives. Patients want to get back to using their technology, whether it’s learning how to use text-to-speech, or voice-to-text, or a full communication app.

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“Everyone, including the professionals and students, has different levels of comfort with technology, but we realize it’s our friend because it’s so useful. I’ve also dabbled in augmented reality and on its effect on people who are communicatively impaired. We know that virtual reality works for PTSD and is effective for learning, but people are not looking at it as a venue for rebuilding or reconnecting conversation and communication. So that’s a groundbreaking area to pursue.”

What’s next for you and the future direction of Aphasia House?

“We’ve been able to branch out in the last year to provide inter-professional experiences. We pair our students with physical therapy faculty and their doctoral students while they do evaluations. Doctoral students from neuropsychology provide group counselling for persons with aphasia once a week, which allows our students opportunities to interface with them. A mental health counselor comes to work with the families. So that’s an area I want to continue to grow: inter-professional education and support for families.”

Aphasia House wall of inspiration

The “Wall of Inspiration” at Aphasia House

When she’s not supervising graduate students, researching, teaching, or building inter-professional networks at Aphasia House, Dr. Whiteside also keeps busy consulting on a replication of Aphasia House. The University of São Paulo in Brazil recently bought two mobile homes to use to create a similar therapeutic setting. A number of universities are now piloting comparable programs.

Though clients and families have called the Aphasia House experience “renewed hope,” the unexpected challenge and triumph of engaging with students has perhaps been one of Dr. Whiteside’s proudest accomplishments. “The experience of teaching the next generation of SLPs,” she says, “is truly powerful.”

 


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