By Jacqueline HInckley, Ph.D.
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
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
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
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
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
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
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
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
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: firstname.lastname@example.org
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
Wahrborg, P. (1991). Assessment and Management of Emotional
and Psychosocial Reactions to Brain Damage and Aphasia.
San Diego: Singular Press.