By Jacqueline HInckley, Ph.D.

Speech-language pathologists are key members of the team for patients with acquired communication disorders. There is no doubt that the education of family members about the nature of an acquired communication disorder and effective communication strategies has a significant positive effect on social relationships. It also may positively affect perceived quality of life and ultimate functional abilities.

Family support is a key factor in good recovery from such conditions as stroke (Glass & Maddox, 1992). The support network of the person with an acquired communication disorder will do much to determine his or her ultimate community reintegration.

When it comes to family education, speech-language pathologists--because of their expertise in the functional consequences of the disorder--are the most important rehabilitation professionals on the treatment team for patients with acquired communication disorders. Providing family members and important others with the information needed to understand and cope effectively with the communication disorder is part of professional responsibility.

How can we best accomplish this important task? As in any intervention, if we want to teach or train a skill and increase knowledge, we must concern ourselves with the frequency, duration and format of the material presented so we can accommodate the learners and achieve the desired outcome. How many times does the material need to be repeated? Over what length of time? What is the best form in which to provide material?

Through clinical experience, most of us have found ways that fit our caseloads, clinical time constraints and personal styles. There are some basic guidelines, however, that we can rely on in planning the basic structure of our family education efforts.

The frequency of family education efforts has been suggested by P. Wahrborg (1991). He recommended that information about the nature of the acquired communication disorder and the appropriate communication strategies be provided to the family member at onset, two months later, and a few months after that during long-term rehabilitation. This repetition of information is consistent with normal human learning. Three repetitions of any kind of information usually ensures learning and recall.

Such a recommendation also implies the long-term need for information. Multiple family education events or sessions and ongoing access to information during the first year and beyond are needed. Indeed, people with aphasia and other acquired communication disorders have indicated a need for information years after onset. The National Aphasia Association, for example, has worked to serve this need through its written resource materials, website and biennial conference.

Therefore, family and patient information should be repeated and provided over several months, with ongoing access to further information. What form of family education will make the needed impact? There are three forms of information to choose from: oral, written and experiential.

Orally presented information is relied on most heavily, with face-to-face encounters providing the feedback with which the clinician can judge the needs and outcomes of the family education session. Written information, in the form of brochures, pamphlets or clinician-designed hand-outs, are best used as supplementary material. Family members and important others can refer back to the written information on an ongoing basis.

J.G. Lyon's book Coping with Aphasia (San Diego: Singular Publishing, 1998) was written with the goal of providing information to family members and important others. It addresses their needs from the time of onset through the chronic adaptation stages.

Finally, the Internet provides another means for people to access written information from a variety of sources. Many types of websites offer relevant information for families: medical, federal government, national organization and university.

The most likely outcome of either oral or written forms of family education is a change in the knowledge base of the family member. It also may change their knowledge about effective communication strategies and affect their behavior toward the person with the communication disorder.

Oral and written information, as it typically is provided by clinicians, may have some effect on family members' emotional responses to the communication situation. Certainly, the feeling that family members have about the situation will color their ability to develop effective coping strategies.

Experiential forms of family education are the most likely to impact the emotional responses of family members. Activities such as role-playing, participating in simulations, attending support groups, and going to educational conferences and meetings appear to provide an even greater depth of meaning to family members because of the many levels on which information is provided. At such events people with acquired communication disorders and their support persons receive information in oral and written form and benefit from the connection between actual events and the information being targeted. This affords them the opportunity to integrate information at all levels: intellectual, behavioral and emotional. Such experiential forms of education also provide actual practice in certain communication strategies, and practice is the foundation of behavior change.

Many clinicians use role-playing as an effective means of family education in the intervention process. Clinicians often ask family members to practice specific communication strategies with the clinician first or with the clinician as coach.

Simulation activities of language challenges can be used with family members or others. They also serve as a way to educate the public and increase sensitivity to the challenges of a communication disorder.

Group activities of all kinds are important ways for people with acquired communication disorders and their significant others to share with others and learn from their experiences.

Finally, educational conferences, such as the Speaking Out! conference offered by the National Aphasia Association, provide oral and written information, the experience of hands-on demonstrations, and the sharing of those facing similar challenges.

People with acquired communication disorders and their families can live happy, productive lives; but information and resources are a key component in this process. Speech-language pathologists must ensure that they are providing as many opportunities--over a long enough time and in effective formats--as are necessary for clients and their families to acquire the information they desperately need.

Tips for Effective Family Education

Repeat targeted information at least three times
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Provide information during first year post onset.

Make coping information accessible over the long-term.

Add an experiential component to facilitate coping strategies.

Jacqueline J. Hinckley, PhD, is an assistant professor in the Department of Communication Sciences and Disorders at the University of South Florida, 4202 E. Fowler Ave., PCD 1017, Tampa, FL 33620; (813) 974-7468; e-mail: jhinckle@cas.usf.edu
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REFERENCES

Glass, T.A., & Maddox, G.L. (1992). The quality and quantity of social support: Stroke recovery as psycho-social transition. Social Science and Medicine, 34: 1249-1261.

Hinckley, J.J. (2000). What Is It Like to Have Trouble Communicating? A Series of Simulation Activities to Educate Family, Friends, and Caregivers. Stow, OH: Interactive Therapeutics Inc.

Wahrborg, P. (1991). Assessment and Management of Emotional and Psychosocial Reactions to Brain Damage and Aphasia. San Diego: Singular Press.