NAA- Aphasia Book Clubs: The Book ConnectionTM

[dorothy]

Showing this information for others from the NAA newsletter

It is long, but sending it to you, anyway ~dorothy

 

 

" Editor?s note: Reading difficulties often accompany aphasia, and can compound the isolation of living with aphasia. The idea of book clubs for people with aphasia has generated a great deal of interest recently. Roberta J. Elman, Founder of the Aphasia Center of California, and her colleague Ellen Bernstein-Ellis, authors of this month?s feature article, have done pioneering work in this area and share the development of their program below. Some of the techniques they describe can be adapted for your own group; the Aphasia Center of California also has Book ConnectionTM materials available for purchase. Dr. Elman will be giving a presentation on The Book ConnectionTM at the Speaking Out! 2006 conference in Boston.

 

Aphasia Book Clubs: The Book ConnectionTM

Roberta J. Elman, Ph.D., CCC-SLP, BC-ANCDS

Ellen Bernstein-Ellis, M.A., CCC-SLP

 

Aphasia, an acquired language disorder, often affects the ability to read. Many participants at the Aphasia Center of California (ACC) tell us that their inability to ?read a good book? is one of their greatest losses. Our Book ConnectionTM program began when ACC members told us they wanted to read again. Not sentences or short paragraphs, but actual books!

 

We wondered how we could adapt a book club to make it both accessible and enjoyable to people living with aphasia. This was about the time that Oprah Winfrey had started her book club, and we knew that ACC members would want to be doing similar activities as their friends and family members. It became our challenge to figure out a way to create a book club for people with all types and severities of aphasia, so that they could join the rest of the country in reading for fun.

 

Seven years, 15 popular books, and thousands of hours of hard work later, we have learned an enormous amount about creating book clubs for people with aphasia. Our ACC members taught us what worked and what needed adapting. We learned from participants that it wasn?t critical that they be able to read and understand every word, but rather that they could enjoy whatever they read or listened to on audiotapes.

 

In 2004, we received funding from the Langeloth Foundation to replicate our program at four sites: the Aphasia Institute (Toronto), Montclair University (New Jersey), MossRehab (Philadelphia), and the Rehabilitation Institute of Chicago. Speech-language pathologists and people with aphasia at these sites used our materials and provided us with invaluable feedback to help enhance our program.

 

The materials we develop include ?reading ramps? that make information accessible to people with acquired reading impairments such as aphasia. For example, we create chapter highlights and summaries. These reading ramps support the book?s content by emphasizing key parts of the storyline while also simplifying the vocabulary and grammar. Weekly worksheets are another example of a reading ramp that we have developed. These worksheets provide participants with the opportunity to make a personal connection to the story as well as provide reading and writing practice. Along with the summaries and the worksheets, we develop other reading ramps depending on the unique needs of each book. For some books, it is important to develop vocabulary and character guides so that participants can follow the plot line more easily.

 

We also incorporate unabridged audiotapes in order to assist people with more severe reading disorders to read the book. We choose books that have a relatively straight plot line. And we look for large print books because many of our members have told us that they are easier to read.

 

Our weekly discussion sessions are the most important part of the Book ConnectionTM program. These discussions promote an exchange of ideas and thoughts that many individuals with aphasia tell us they don?t get the opportunity to have in their daily life. The Book ConnectionTM discussion sessions work best when they are not a strict review of the book content or worksheets. It can be a challenge for a facilitator to ensure equal participation in conversationally based groups. We strongly encourage discussion group facilitators to become familiar with the theory and techniques associated with group dynamics and group process, as well as the specific skills needed to facilitate aphasia conversation groups.

 

If you are interested in starting a book club in your community, you may want to contact a local speech-language pathologist who has experience with aphasia. The Aphasia Community Groups and State Representatives listings located on the National Aphasia Association website www.aphasia.org provide one way to find professionals who are interested and experienced in the area of aphasia.

 

We have recently achieved our goal of assisting others in starting aphasia book clubs?our Book ConnectionTM manual and materials can now be downloaded from the ACC website (www.aphasiacenter.org). We will be using proceeds to develop materials for additional books.

 

As speech-language pathologists, developing the Book Connection? program has been a thoroughly rewarding experience. Our Book Connection? experience has taught us that, regardless of the severity level of the aphasia, Holbrook Jackson was correct when he wrote, ?the end of reading is not more books, but more life.? " (NAA newsleter, March 2006)

 

(Portions of this article are from a story in the upcoming May/June 2006 issue of Stroke Connection Magazine.)