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These days, the phrase "social networking" is inescapable thanks to the popularity of Facebook and Twitter. Did you know that if you take technology out of the equation, social networking doesn't go away? That's because its roots lie not in the glow of a computer screen but in friends, family, coworkers and acquaintances. It's the simple act of connecting with people in everyday interactions.
Social networks have been studied in such fields as gerontology, health psychology, rehabilitation psychology, social science and medicine. However, research on the social networks of people with aphasia isn't so easy to track down.
"As I began my doctoral work, I realized there was a huge body of literature that detailed the benefits of social networks for adults. It covered almost every segment of the adult population, but people with aphasia had been omitted from most of those studies because it's so difficult to communicate with them," said Candace Vickers, PhD, CCC-SLP, clinical faculty in Neurological Disorders at Chapman University in Orange, CA, and a member of the Outpatient Neurological Rehabilitation Team at St. Jude Centers for Rehabilitation and Wellness in Brea, CA.
Dr. Vickers has been assisting adults with aphasia for 30 years. In 1994, she created Communication Recovery, a conversation group for persons with aphasia for St. Jude Medical Center in Fullerton, CA.1
The program, which Dr. Vickers co-directs with colleague Darla Hagge, MA, CCC-SLP, uses trained conversation partner volunteers to reach an ever-growing group of adults with aphasia and their families.
In the field of speech-language pathology, attention to development of social networks is an integral part of an augmentative and alternative communication (AAC) approach to aphasia, she told ADVANCE.
Taking an AAC approach to aphasia is "probably the best thing any clinician can do. You're always considering how to enhance opportunities for both expression and comprehension," said Dr. Vickers. "You also need to consider social networks."
The push for a strong network of communication partners for people with communication disabilities is not new, as many leaders in the field of AAC have been calling on clinicians to assure that people with complex communication needs have a variety of communication opportunities as well as communication partners."
Having a healthy social network is essential for longevity, health and psychosocial well-being. This is true for persons of all ages whether they have a communication disorder or not," she said. "Speech-language pathologists know this intuitively, but we may need to be pro-active to measure the network and help people come together."
Successful social networking improves access to communication partners and opportunities, which typically is limited by aphasia. The most destructive force in the life of a person with aphasia is social isolation.
"If you don't pay attention to that, your patient may leave therapy and go into the great abyss of loneliness and isolation," said Dr. Vickers. Communication opportunities in the number and type of partners can dramatically decrease with any type of acquired disability, but especially those that affect easy access to communication. "Many times after aphasia, when you can't talk, your friends stop coming to see you," she said.
Shrinking access to rehabilitation, shorter therapy sessions and lengths of hospital stays, and higher productivity requirements for speech-language pathologists in medical settings can make it difficult for clinicians to assist individuals with aphasia to repair and maintain their social networks during the treatment process. "We need to find a way to at least measure the networks in a rudimentary way and begin addressing if the person with aphasia will be able to communicate within and outside their family," she said.
Dr. Vickers first measured social networks for a group of 40 people with aphasia using a social networks assessment tool developed by Sara Blackstone, PhD, CCC-SLP, president of Augmentative Communication, Inc., in Monterey, CA, and Mary Hunt Berg, PhD, CCC-SLP, director of Education and Research at the Bridge School in Hillsborough, CA.2
A statistical comparison of the data showed the networks were significantly smaller after aphasia for the whole group, she said.
Using The Friendship Scale, a six-item test that looks at how people feel within their respective social networks and measures their perceived social isolation, Dr. Vickers also found that "there was some isolation on average for the whole group, but it was significantly greater for those not attending an aphasia group. 3, 4
The tool was developed by Graeme Hawthorne, PhD, an associate professor of psychiatry at the Australian Centre for Posttraumatic Mental Health, University of Melbourne, in Australia.
Her finding points to how crucial it is to help individuals with aphasia gain access to new communication partners in a supportive environment. In the communication recovery groups at St. Jude, Dr. Vickers reports that people thrive because they look forward to seeing the people in their group. This also applies to family members, who make new friends as well.
"They are making new friends, and some of them socialize outside of group. You've got people getting together, going to the movies, e-mailing each other, and now increasingly texting each other," said Dr. Vickers. "We just try to bring people together. So much of what happens is just magic between people. You don't do this in a vacuum. Socialization is the heart and soul of communication."
The difficulty of communicating with people who have aphasia increases the potential for isolation. Individuals who communicate with them often need special training to ease the challenges. Family members must be open-minded and willing to learn new skills in order to interact successfully with their loved one.
On making communication in the home environment easier, Dr. Vickers said that "it takes awhile sometimes to get partners to understand that they also have a role to play." She praised the work of Larry Boles, PhD, professor in the Department of Speech Pathology and Audiology at California State University, Sacramento, in helping clinicians understand and encourage the role of communication partners in aphasia treatment.
"The work of Larry Boles is fantastic in helping speech-language pathologists realize that partners bring expertise and knowledge about their loved one with aphasia that is far beyond the clinician's [reach]. The therapist is more of a coach and a guide in helping promote effective communication between the person with aphasia and his or her partner, and that's where we should implement our expertise," said Dr. Vickers.
Clinicians should use the residual strengths and knowledge of people with aphasia to promote independent communication. "This is not somebody with a blank slate," she said. "They have a world of experiences."
In an augmentative approach to aphasia, clinicians and their partners encourage gestures, facial expressions, writing key words and choices, and drawings to help people with aphasia to follow conversations and understand the world around them. Speech-language pathologists must become good communication partners in the use of no-tech strategies, such as visual supports and quick construction of written choices, where needed. They also need to recognize when it is appropriate to use those techniques.
Becoming a skilled communication partner for an individual with aphasia is a fine art, according to Dr. Vickers.
"If you jump in too soon or guess what the person is trying to say, it can throw the individual off track. There is a right time to offer a word so the person with aphasia can keep speaking. It is also really important for the person with aphasia to have independent ways to bring up topics. That's a great challenge when you work with this population."
While Dr. Vickers prefers the AAC approach when working with the aphasia population, she is careful not to overuse it. "If there are people speaking without this type of assistance, we certainly don't push it," she said.
In terms of expanding social networks, the use of volunteers is a key element in group therapy at Communication Recovery. University students undergo training with Hagge and attend weekly training meetings with her and Dr. Vickers to improve their conversational support skills and gain valuable exposure to people with communication disorders before they enter graduate school. Older adults without aphasia also serve as volunteers, as do some stroke survivors.
According to Vickers, one of the most powerful contributions of volunteer communication partners is that they are there for individuals with aphasia "out of choice, not obligation," a quote she attributes to Jon Lyon, PhD, CCC-SLP, founder of Living with Aphasia, Inc., in Mazomanie, WI, who has written extensively about the use of communication partners.
"People are there because they want to be," said Dr. Vickers. "They want to give people focused attention, celebrate their uniqueness and their story, and learn more about them. That's a shot in the arm for anyone, whether you have aphasia or not."
Since 1999, Vickers has been speaking out about the need for including communication volunteers in aphasia groups.
"It's often possible to demonstrate that offering an aphasia group program embodies the values of a medical facility concerned with the health and well being of its community," she said. "People with aphasia are our sisters and brothers, husbands and wives, children and friends. The time to invite them back into the conversation is now."
Reference
- Vickers, C. (1998). Communication Recovery: Group Conversation Activities for Adults. San Antonio, TX: Communication Skillbuilders.
- Blackstone, S., Hunt-Berg, M. (2003). Social networks: A communication inventory for individuals with complex needs and their communication partners. Monterey, CA: Augmentative Communication, Inc.
- Hawthorne, G. (2006). Measuring social isolation in older adults: Development and initial validation of the Friendship Scale. Social Indicators Research, 77 (3): 521-548.
- Vickers, C. (2010). Social networks after the onset of aphasia: The impact of aphasia group attendance. Aphasiology, 24(6): 902-913.
For More Information
Jason Mosheim is a Senior Associate Editor at ADVANCE. He can be contacted at jmosheim@advanceweb.com.
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