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Communication disorders affect not only the individual, but also their communication partners. From working with infants to elderly individuals, audiologists and speech-language pathologists need to keep caregivers and families in focus. Communication partners—teachers, parents, and spouses—are the "other patients" who are equally in need of our services in offering information and support. From maintaining assistive listening devices to facilitating interactions, they play a large role in the success of our interventions. As you broaden your focus to serving the supporting individuals in your patients' lives, you'll find ideas that transcend generations and practice settings.
Educational Audiologists Make Changes in the Schools
by Merrill Alterman
Years ago I was introduced to a simple concept that profoundly changed my perspective on working with children who are challenging, with parents who seem to be noncompliant, and with teachers who appear resistant: I needed to stop using negative descriptors and focus on understanding why I wasn't getting a more positive response.
Although we know that most parents do not wish to be unresponsive to their child's medical or hearing health care, often we label them as "difficult." As audiologists, we instead need to identify the factors that might be keeping the family from being more responsive. Do the parents fully understand the importance of good hearing? Do the parents have money for bus fare? Will the parent lose wages if he takes time off from work for appointments and meetings? These are issues we face daily in the Baltimore City Public School System, which reflects the city's problems of poverty, crime, drugs, poor health care, and a dwindling tax base—all of which cause stress for families, children, and schools.
Some teachers adamantly refuse to adjust their teaching styles to accommodate a student with a hearing loss, but they do not mean to intentionally obstruct a student's learning. As audiologists, we need to identify the real issues. Did the teacher have a negative classroom experience previously with a child who had a disability? Is the teacher concerned the student will make their job more difficult? Do they feel that the student should be in a self-contained, special education class? Is the teacher intimidated by the responsibility for an FM system?
In the Baltimore City Public School System, nine audiologists (7.5 full-time employees) cover each of the 174 schools, as well as Head Start centers and programs for infants and toddlers. This coverage allows clinicians to be active in the schools by attending IEP team meetings; collaborating with school staff, parents, and caregivers; providing aural habilitation treatment; monitoring or determining the need for individual or group amplification; and advocating for children with hearing loss.
By being part of the schools, the principal and staff no longer perceive the audiologists as "outsiders" coming to give teachers more work. As an example, because of an audiologist's positive presence in the school, a third-grade teacher was looking forward to having a student who uses an FM system in her general education classroom. At the beginning of the year, the audiologist met with the teacher at a time convenient for the teacher and brought a snack to share. During the meeting, the audiologist demonstrated the effects of hearing loss, gave the teacher the opportunity to listen through the FM system, and assured her that she would be there to help. The audiologist responded to any problems that arose and kept the IEP team, administrators, and teachers informed of her activities.
As educational audiologists, we can't solve the societal problems families and teachers face, but we can change our point of view and eliminate the negative language we use to describe children, parents, and teachers who do not meet our expectations. As audiologists become "insiders" in their school, they are seen as a positive presence in the school and a valued part of the educational planning. For audiologists, the "real work" is in the classroom, the teacher's lunchroom, and the hallway.
Merrill Alterman is coordinator for related services for the Baltimore City Public School System in Maryland and administers related educational services citywide. She can be reached at malterman@bcps.k12.md.us.
Resources
ASHA Desk Reference. (2002). Guidelines for audiology service provision in and for schools. www.asha.org/members/deskref-journals/deskref/DRVol2.htm
Boys Town National Research Hospital. My Baby's Hearing. www.babyhearing.org
Candidacy and Habilitation of Children With Cochlear Implants. (2003). Two-hour videotape and manual. Earn 0.2 ASHA CEUs through July 2005. Item # 0112454. $125 member; $155 nonmember.
Family-Centered Early Intervention for Children Who Are Deaf and Hard-of-Hearing: Strategies and Outcomes. (1999). Two-hour audiotape and manual. Earn 0.2 ASHA CEUs through July 2005. Item #0112256. $74 member; $99 nonmember.
Pediatric Audiology: Enhancing Service Delivery to Families. (2002). Reprinted from AJA, JSLHR, and LSHSS. Earn 0.4 ASHA CEUs through January 2005. Item #0112419. $65 member, $80 nonmember.
Working With Family Caregivers of Dementia Patients
by Rosemary Lubinski
"I don't remember exactly the day when I realized that my husband, Bob, was having major difficulties carrying on a meaningful conversation with me. As I think back, he must have been having problems for some time, but we coped and I covered up for him—at first unconsciously, then deliberately. I was increasingly frustrated and angry with him for not being able to understand the simplest things. Half the time I didn't know what he was talking about. Most of all, I felt really alone as Bob and I stopped having thoughtful conversations and our intimacy slipped away."
As dementia begins to alter communication patterns, spouses, adult children, friends, and other caregivers become the "other" patients who are equally in need of intervention as the dementia patient. Early and continued counseling with family caregivers by the speech-language pathologist can help caregivers understand the nature of communication changes with the progression of dementia, how to facilitate communication as long as possible, and how to cope with the emotional toll of having reduced communication opportunities.
Effective intervention focuses on helping caregivers become active problem-solvers. The SLP also should remember that although caregivers want information about dementia, they also want an opportunity to discuss their feelings about the communication changes that are occurring and the increased burden they have for facilitating communication. But before any of this can occur, the SLP needs to gain access to the family caregivers.
Access to Caregivers
Most family caregivers do not automatically think of contacting an SLP for a communication evaluation of the patient with dementia or for information about communication difficulties. Other front-line professionals need to become aware of the expertise of the SLP so that referrals can be made. SLPs need to become more accessible to caregivers through referrals from family physicians and geriatricians, and also through programs offered by local Alzheimer's associations, support groups, daycare programs, senior centers, and nursing homes.
Once access is achieved, the SLP can use a multi-pronged approach to provide information to caregivers about communication changes as dementia progresses and strategies for facilitating comprehension and expression, and to offer emotional support to help caregivers in the community cope with the communication changes that will occur with the progression of the disease.
Information Giving
Never underestimate the need family caregivers have for information about what is happening to their loved one or communication strategies. All too often, caregivers are given little specific information about the nature and progression of dementia and how it will affect communication and activities of daily living. Although caregivers want information, they do not want a didactic lecture that is more suitable for professionals. Instead, the SLP needs to balance the depth of information presented with opportunities for questions, comments, role-playing, and participant interaction.
Caregivers can be excellent sources of communication facilitation strategies and often provide sensitive peer support. Informative sessions allow time for repetition of information, live and video demonstration, and feedback from the caregivers. Giving oral or printed lists of "dos and don'ts" is far less important than helping the caregivers problem-solve the situations they encounter with the assistance of peers and the SLP.
Emotional Support
Family caregivers become better communication problem-solvers when they have the emotional strength to try new strategies. The SLP cannot avoid discussing the emotional impact of communication changes associated with dementia. Caregivers want to talk about the irritation, frustration, and helplessness they feel during communication with their family member. Caregivers need to realize that learning how to acknowledge and cope with their feelings is essential to communicating more effectively. Counseling and peer support may be a long-term process as the disease progresses.
In working with patients with dementia, the SLP should not forget about the "other" patients—the family caregivers. SLPs have unique and valuable expertise to offer the caregivers of those with dementia. Counseling should take a two-pronged approach of teaching communication strategies for facilitating interaction and supplying a venue where family members can express their feelings about the changes that are occurring.
Rosemary Lubinski is professor in the department of communicative disorders and sciences at the University at Buffalo in New York. She specializes in the area of communication disorders of elders and working with family and professional caregivers in home and institutional settings. Contact her by e-mail at cdsrosie@acsu.buffalo.edu.
Resources
ASHA Policies and Readings on Aging and Management of Dementia. Visit ASHA's Web site at www.asha.org/members/slp/clinical/dementia/default for a compilation of ASHA's policy documents, journal articles, special interest division newsletter articles, and Web resources.
Communicating With Alzheimer's Patients: A Program for Caregivers. (1999). Two-hour audiotape and manual. Earn 0.2 ASHA CEUs through August 2005. Item #0112324. $74 member; $99 nonmember.
Ripich, D. (1996). Trainer's Manual. Communicating with Persons with Alzheimer's Disease: The FOCUSED Program for Caregivers. Austin, TX: Psychological Corporation.
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