Speech-Language-Hearing Clinic: Social Participation Approach to Aphasia
Imagine that you are in a foreign country with a language not native to your own. You are not easily able to communicate with other people or understand what they are saying to you. Reading traffic signs and menus is difficult. Communicating your thoughts by writing is nearly impossible. You feel frustrated, helpless, angry or depressed and try to book the next plane out of town. What if you could never leave, and the constraints on your communication were permanent?
The National Aphasia Association (NAA) states that the use of speech to communicate is unique to humans. When speech is impaired or absent, the psychosocial impact on the person and his family is both profound and permanent. One of the most isolating and devastating communication disabilities is aphasia.
According to the NAA Web site, aphasia is an impairment of language, affecting the production or comprehension of speech and the ability to read or write. Aphasia is always due to injury to the brain – most commonly from a stroke, particularly in older individuals. Brain injuries resulting in aphasia may also arise from head trauma, brain tumors, or infection and inflammation. The
NAA further explains that aphasia can range in severity. It can be so severe as to make communication with the patient almost impossible, or it can be very mild. It may affect a single aspect of language use, such as the ability to retrieve the names of objects, or the ability to put words together into sentences, or the ability to read. More commonly, however, multiple aspects of communication are impaired such that some channels remain accessible for a limited exchange of information. It is the job of the professional to determine the amount of function available in listening, speaking, reading and writing in order to assess the possibility that treatment might enhance the use of the channels that are spared.
Aphasia is a language-processing disorder that impairs a person’s ability to speak or understand speech. It manifests itself differently in different people, but generally the individual’s intelligence is intact. Nevertheless, a person with aphasia may not be able to read a utility shut-off notice, ask a waiter for a cup of coffee, or follow a news story on TV. More than one million Americans have acquired aphasia – a greater number of people than have cerebral palsy, multiple sclerosis, Parkinson’s disease, or muscular dystrophy. Approximately 20 percent of the 600,000 Americans who suffer a stroke each year will acquire aphasia.
The onset of aphasia is sudden – in an instant, one’s life is irrevocably altered. The effects are generally long-term. “One does not recover from aphasia, one recovers with aphasia,” noted National Aphasia Association (NAA) President Dr. Martha Taylor Sarno. Because of the disconnect between their ability to think and their inability to communicate, people with aphasia often become extremely frustrated, depressed, and isolated.
Everyone in the person’s life is affected by the disability, and caregivers require support to adjust to the challenges of living with aphasia. In a study published in the July 2001 issue of Stroke: Journal of the American Heart Association, researchers examined the short-term psychological effects of stroke on a group of patients’ spouses. Researchers found that spouses experience a sharp decline in their sense of well-being and a sharp rise in psychological stress within days of their mate’s stroke. Previous studies have traced the psychological impact of stroke on families over time and found that 20 to 50 percent of caregivers experience emotional disturbances, especially depression. Other studies comment that the emotional and practical support of the caregiver is known to affect the functional and psychological outcome of the stroke patient. Spouses demonstrated lower psychological well-being compared with a normal population, and the extent of disability of the stroke patient was correlated with the spouse’s outlook on the future.
Chapey (2001) and her colleagues describe many different approaches to the treatment of communication disorders associated with aphasia. Recently, treatment of aphasia has utilized a social participation model. This approach evolved for a variety of reasons. Medical insurance has reduced funding for speech-language therapy services, causing a significant reduction in services available to people with aphasia. Frattali (1996) describes that restructuring in health care has forced clinical service providers to balance quality outcome with cost of care. Pressure from consumers, desire to improve outcomes and changes in the health care industry suggest an urgent need for creative approaches that increase the quality of communicative life for those affected by aphasia. Chapey (2001) states that treatment that produces meaningful real-life outcomes, with the potential that these changes can enhance an individual’s quality of life, is essential. Social models provide a philosophical framework for developing interventions that fulfill this requirement.
Psychosocial/functional approaches to clinical intervention have been discussed in the clinical literature. The focus of these approaches is on improving the person’s ability to participate in communication in daily living activities. The Life Participation Approach to Aphasia (LPAA) is a consumer-driven service delivery approach that supports individuals with aphasia and others affected by it in achieving their immediate and longerterm life goals (Chapey, 2001). LPAA places the life concerns of those affected by aphasia at the center of all decision making. It empowers the consumer to select and participate in the recovery process and to collaborate on the design of interventions that aim for a more rapid return to active life.
Simmons-Mackie (2000) discusses how individuals with aphasia report social isolation, loneliness, loss of autonomy, restricted activities, role changes, and stigmatization. The social approach acknowledges that aphasia is a chronic disorder with long-term consequences beyond the acute disruption of communication. The goal of a social approach is to promote membership in a communicating society and participation in personally relevant activities for those affected by aphasia. In spite of linguistic gains, many people with aphasia experience residual communication problems that significantly impact their daily lives and remain as barriers to full participation in social settings. Untreated or unrecognized psychological and social problems can increase disability, diminish community reintegration, and reduce response to rehabilitation.
Elman (1999) talks about how managed care and the decrease of funding for services for persons with aphasia have increased the need for group therapy for persons with aphasia. With less time and resources to treat patients, group therapy approaches are playing an increasingly significant role in clinical management. Presently there is increased emphasis on treating individuals at the level of handicap or well-being, rather than treating their impairments per se. Multipurpose groups that attempt to address the needs of the “whole” patient are rapidly becoming the norm rather than the exception. Clinical researchers have recently developed novel group treatment methods. Treatment efficacy is being put to scientific tests, and data by researchers is accumulating to support the use of group therapy for aphasia (Elman, 1999). Group therapy is considered an essential component, rather than a supplement, to a treatment protocol.
Assessment tools within a social communication model go beyond traditional linguistic models to include measures of outcome that are functional. These tools may include perspectives of those affected by aphasia, professional judgments of communication and participation, or actual life accomplishments. These accomplishments may include sharing a joke, returning to work, sharing a meal with friends or reading a story to a grandchild.
Perspectives of those affected by aphasia can be measured in a number of ways. Ethnographic interviews have been recommended to determine the personal viewpoints of those affected by aphasia (Simmons-Mackie and Damico, 1996a, 1999a). Interviews analyzed before, during, and after intervention and general themes are analyzed for treatment goals. Communication profiling systems use interviews, personal journals and observation to identify communication behaviors of the clients and significant communication partners. Quality-oflife tools assess life satisfaction from the perspective of the person with aphasia at different times across the treatment program. Consumer satisfaction assessment measures rate clients’ and family members’ perceived satisfaction with communicative comfort, confidence, connectedness and pleasure.
Professional judgments by speechlanguage pathologists are another way to measure outcomes. Functional assessment measures rate performance across a variety of tasks that are typical of the daily activities of the client. Activities can include talking on the phone or reading the newspaper. Communicative effectiveness ratings analyze communication interactions and may include success of the transmission of the message, communication efficiency, naturalness or pragmatic appropriateness. Observational assessment collected by clinicians in natural communication settings is another useful method for analyzing the communication needs of a client and planning for treatment.
Accomplishment measures may include participation measures that assess the number of social contacts per week or the variety of activities. Goal attainment scales measure improvement over time for a particular defined life participation goal, such as participating in a successful grocery store purchase.
Typically at the beginning of a treatment period, a functional assessment is administered, such as the Quality of Communication Life Scale (ASHA, 2004). This scale is used to determine the impact of a communication disorder on an adult’s relationships and interactions with communication partners and on participation in daily life activities. Upon analysis of the scale, communication strengths and weaknesses can be identified and treatment goals established related to improving the quality of communication life. Specifically, a group member may withdraw from answering the telephone at home. A phone call received three times a week from a friendly and supportive group member may be introduced as an initial communication goal. Strategies are developed for communication success, and progress is discussed within the group.
The social participation approach to aphasia therapy includes goals of improving overall quality of communication and participation in life activities of choice (Simmons-Mackie, 2000). The treatment is client centered and includes a social network of caregivers as well. Treatment goals often include expanding particular social interaction skills and facilitating confidence in conversation. Conversational therapy is planned and designed to improve participants’ skills to exchange information and fulfill social needs. Skills such as debating, joke telling, and storytelling may be addressed, as well as improving linguistic form and content within a functional context.
Enhanced compensatory strategy training is important for improving the naturalness of communication interactions. Strategies such as gestures, writing, drawing, asking for repeats and using augmentative aids are common. Conversational coaching provides practice of communication scripts to be developed jointly by the clinician and clients. In this method, the clinician serves as a coach in an equalized role with the client. The client makes active decisions regarding types of scripts that can be practiced and used in socially relevant situations. Group therapy provides a natural context for improving communication by facilitating participation and improving confidence and psychosocial well-being. Group therapy may also provide an opportunity for an individual with aphasia to practice a strategy, script or technique they learned in individual treatment. Partner training is another method of enhancing communication. By training communication partners in cueing and listening strategies, they become knowledgeable communication partners. Training speaking partners – family members, colleagues at work, friends and the community at large – improves the communication of the person with aphasia. Communication increases when partners are knowledgeable about the nature of aphasia and skilled in providing inclusive opportunities for sharing communication with the individual with aphasia.
Saltzman Center Speech-Language- Hearing Clinic Social Model
The Speech-Language-Hearing Clinic in the Joan and Arnold Saltzman Community Services Center at Hofstra University has utilized a social participation approach in group therapy for people with aphasia for a number of years. Group therapy services are designed to facilitate clients’ compensatory language strategies during social conversation. It also serves to improve natural communication and psychosocial functioning. The sessions encourage social interaction and peer-modeling among the members of the group, which improves overall pragmatic language skills (Elman & Bernstein- Ellis, 1999).
On a psychosocial level, group therapy serves as a support group environment for these individuals with aphasia, where successful adjustment to living with aphasia is encouraged and modeled by the clinicians and other group members with aphasia (Elman & Bernstein-Ellis, 1999). One group included nine men with aphasia. Each participant had sustained stroke or neurological injury. Length of onset of disability ranged from one year to 10 years or more. One clinical supervisor and two graduate students facilitated the group for a period of 15 weeks. All the goals, established together with the clients and group facilitators, were mutually agreed upon. Initial goals for the group included discussion of psychosocial issues related to living with aphasia, distribution and discussion of educational materials related to aphasia, and, lastly, development of strategies to reduce maladaptive coping styles. Guest lecturers were invited by clients and students. Special topics were presented by eldercare lawyers, psychologists, personal trainers and professors. Outings to campus eateries also provided a natural setting for the development of conversation.
A number of functional communication outcomes naturally occurred as a result of the group participation. Over a 15-week period, the group worked together diligently to write an online article for the National Aphasia Association’s Group of the Month. The process began with the group deciding on the attributes of a successful aphasia group. The clients explained the philosophy for the group as a psychosocial, client-driven model. Next, clients wrote their biographies with assistance from student clinicians. The activities created communication opportunities that challenged the members’ listening, speaking, reading and writing abilities. The group process instilled interpersonal confidence in the members, as they were required to make contributions that were commensurate with their communication abilities. Photos were taken, and drafts of the article were reviewed and edited for submission. The article appeared online in fall 2009, and the clients felt a sense of pride and accomplishment.
The University itself provided many opportunities for the group’s communication and psychoeducational needs. Faculty from Hofstra University School of Law, and the Departments of Psychology, Speech-Language-Hearing Sciences, and School of Education, Health and Human Services volunteered time and expertise to provide in-services about pertinent topics that stimulated questions and conversation among the group members. Topics included current Medicare laws, seasonal affective disorder and depression, neurology of the brain, importance of exercise/ nutrition for recovery, and methods of advocating for the rights for individuals with disabilities. Trips to campus eateries provided locations where clients could use their communication skills functionally. A trip to the Hofstra University Museum was inspiring and promoted discussions regarding art history, artistic style and personal art preferences. A few of the group members discussed meeting for a museum trip in New York City.
Group members commented that satisfaction from attending the group was strong because of the fellowship and support achieved among members both during and outside of group sessions. Members shared that they could relate to each others’ unique difficulties and could offer honest advice born out of personal experience. All members were equally eager to learn from each other. Members shared requirements for an ideal group: be small enough in membership to facilitate conversation, be flexible in terms of goals, include discussions about both past and current life events, be clinician structured enough so that the conversation flows productively and natural communication rules are practiced and learned.
Using a social participation approach to treat communication disorders associated with aphasia requires a shift from traditional approaches.
Approaches based on the medical model serve patients in the acute stages of recovery. However, this stage of recovery is limited in time and does not adequately address the needs of the individual who will be living with a chronic disorder of communication. It has become evident that there is a need to view the treatment of aphasia as a continuum of services adapted to meet the needs of persons with aphasia across the life span (Elman, 1998). In a social approach, the long-term personal consequences of aphasia are the focus of intervention (Chapey, 2001). Speech-language pathologists play a critical role in teaching strategies and providing social opportunities for people with aphasia that are finely tuned to develop competence in communication and enhance the quality of life across the lifespan.
Chapey, R. (2001). Language Intervention Strategies in Aphasia and Related Neurogenic Communication Disorders. Baltimore: Lippincott Williams & Wilkins
Elman, R. (1998). Memories of the ”plateau”: Health-care changes provide an opportunity to redefine aphasia treatment and discharge. Aphasiology, 12, 227-231.
Elman, R., & Bernstein-Ellis, E. (1999a). The efficacy of group communication treatment in adults with chronic aphasia. Journal of Speech, Language, and Hearing Research, 42, 411-419.
Elman, R. & Bernstein-Ellis, E. (1999b). Psychosocial aspects of group communication treatment: Preliminary findings. Seminars in Speech & Language, 20(1), 65-72.
Frattali, C. (1996) Measuring disability. ASHA Special Interest Division 2 Newsletter-Neurophysiology and Neurogenic Speech and Language Disorders, 6, 6-10.
The National Aphasia Association. http://www.aphasia.org/
Simmons-Mackie, N. (2000). Social approaches to the management of aphasia. In Worrall, L., & C. Frattali (eds.), Neurogenic communication disorders: A functional approach (pp. 162-187). New York: Thieme.
Simmons-Mackie, N., Damico, J., & Damico, H. (1999). A qualitative study of feedback in aphasia therapy. American Journal of Speech- Language Pathology, 8, 218-230.
Simmons-Mackie, N., & Damico, J. (1996a). Accounting for handicaps in aphasia: Communicative assessment from an authentic social perspective. Disability and Rehabilitation, 18, 540-549.
Speech-language pathology services include:
- Comprehensive evaluations of communication, including speech, language and literacy
- Language therapy
- Articulation therapy
- Voice therapy
- Treatment of stuttering
- Treatment of myofunctional disorders, swallowing and related functions
- Treatment of cognitivecommunication disorders
- Consultation regarding augmentative/ alternate communication
In addition, communication enhancement services are offered to:
- Improve English-language proficiency
- Modify accent
- Audiological evaluations and screenings
- Hearing aid evaluations, including fitting and dispensing
- Central auditory processing evaluations
- Aural rehabilitation services
Specialty programs within the Speech-Language-Hearing Clinic include:
- “Speaking of Toddlers”– a language stimulation group for preschoolers. Through developmentally appropriate play, sensory-based activities, and snack/craft/story time, children develop vocabulary and social communication skills. Language facilitation strategies, peer-to-peer interactions in small group settings, and parent training are used to achieve each child’s individual language/ communication goals.
- Aphasia Program – designed to assist in the recovery of speech, language, reading, writing and functional communication. Group therapy supports individual treatment, and provides opportunities for social participation. The program also includes a group for caregivers of people with aphasia.
Community-based projects include:
- Language stimulation groups at the Saltzman Community Services Center’s Diane Lindner-Goldberg Child Care Institute (CCI). Through this program, infants, toddlers and preschoolers enrolled at CCI participate in communication and literacy enrichment activities that include story telling, music, crafts and creative play. The goals of the program are to increase social communication skills, promote academic readiness and reduce risks for language-learning difficulties. L
- Language-literacy support program at a local elementary school. This project provides language-literacy support for kindergarteners at high risk for developing language-literacy disorders. The instructional method uses an explicit, sequential approach to promote letter identification and phonological awareness. A responseto- intervention (RTI) approach is utilized to identify those individuals who may require further evaluation of language-literacy abilities.