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OUTCOMES OF LOW AND HIGH TECHNOLOGY AAC INTERVENTION STRATEGIES FOR ALS PATIENTS

Presenter
Oliver Wendt
AAC Program
1446 BRNG
Purdue University, IN 47907-1446

Purpose of Study

AAC is still a young field of clinical practice, especially in the area of neurologic rehabilitation for adults with acquired neurological disorders. There is a lack of research that would document the outcomes of AAC interventions for patients with neurodegenerative conditions such as Amyotrophic Lateral Sclerosis, Multiple Sclerosis, Parkinson's disease, etc.

The aim of this study is to synthesize the outcomes of case studies reporting AAC interventions with ALS patients in order to identify AAC strategies that have been used successfully with these patients.

Methods

A qualitative meta-analysis (Paterson et al., 2001) was conducted to synthesize the outcomes of qualitative case studies. Meta-synthesis of qualitative research basically follows the same, replicable procedure of a quantitative meta-analysis. However, unlike quantitative research synthesis, a qualitative meta-analysis is interpretative rather than aggregative. Instead of a statistical data analysis, the researcher analyzes textual reports, creating new interpretations in the analysis process (Paterson, Thorne, and Dewis, 1998).

Trustworthiness of findings is achieved by using multiple researchers for peer examination (Creswell, 1994). According to Paterson, Thorne, and Dewis (1998) as well as Cooper & Lindsay (1998), the stages of research synthesis are as follows:

  1. Problem formulation
  2. Data collection
  3. Data evaluation
  4. Analysis and interpretation
  5. Presentation of results

Problem Formulation

The following research questions were asked:

Data Collection

The search strategy used to collect relevant studies consisted of computerized searches of abstract databases, hand searches, and ancestral searches of references from primary studies. Computerized searches of abstract databases were conducted by selecting appropriate keywords (e.g., "augmentative and alternative communication", "amoytrophic lateral sclerosis", "AAC", and "ALS"). Databases used included the Educational Resources Information Center, PsycInfo, MEDLINE, and Dissertation Abstracts International.

Data Evaluation

The search process revealed seven qualitative case studies of different quality:

Unpublished work was not included into the research synthesis.

Analysis and Interpretation

A coding system was developed to analyze the qualitative data obtained from the case studies. Information from textual reports was synthesized by creating new categories for meta-analytical review. These categories were derived from the initial research questions and focus on the following aspects.

Presentation of Results

Case Study #1: Beukelman & Yorkston, 1980.
Patient Characteristics: 58 y. old female; speech intelligibility at 20% for family members; using natural speech results in communication breakdown.
AAC Intervention: Zygo 10x10 square scanning system, operated with a microswitch interface, activated through chin movements; two week period of intervention.
AAC Intervention Outcome: Developed positive attitude towards AAC; enthusiastic about the alternative communication option but has difficulties in resolving communication breakdowns.

Case Study #2: Beukelman et al., 1981.
Patient Characteristics: 64 y. old male; anarthric; bulbar ALS; can still write, but only intelligible for family and friends; no option to communicate in different social contexts outside home.
AAC Intervention: Canon Communicator; patient used this device for 14 months, then became too weak to operate it and subsequently died.
AAC Intervention Outcome: Used Canon Communicator as primary means of communication; never reported problems; device was the preferred communication option for unfamiliar partners.

Case Study #3: Beukelman, Yorkston, & Dowden, 1985.
Patient Characteristics:

  1. 38 y. old male; spinal ALS; severe dysarthria; speech intelligibility at 20% for unfamiliar listeners.
  2. 55 y. old male; spinal ALS; severe dysarthria; only intelligible for closest family; handwriting too strenuous and unreadable for unfamiliar communication partners.
  3. AAC Intervention:
  1. Living Center System on TRS-80 computer (Words+) including printer, software, and speech synthesizer; operated through scanning with eyebrow-switch.
  2. Alphabet supplementation board; portable Sharp memowriter with print option.
  3. AAC Intervention Outcome:
  1. Enhanced communication options prevent social isolation, allow to maintain social relationships, keep patient motivated; however, scanning is difficult.
  2. Sharp Memowriter was used more than alphabet board; patient continued to go to work.

Case Study #4: Woltosz, 1988.
Patient Characteristics: 46 y. old male; anarthric; uncommon type of ALS with unusually slow progression, spinal symptoms dominating.
AAC Intervention: Portable and stationary computer system: Words+ Equalizer in addition to Words+ Scanning Keyboard Emulator; standard software, synthetic speech output; activation through microswitch and slight movement of two center fingers.
AAC Intervention Outcome: Professional activities could be maintained, AAC system allows patient to give lectures almost at the same speaking rate as oral speech.

Case Study #5: Yorkston, 1989.
Patient Characteristics: 72 y. old female; bulbar ALS, speech intelligibility initially at 87% when diagnosis was made, decreased to 10% during course of disease, 5% at final stage.
AAC Intervention: Patient used portable speech amplifier first, then alphabet supplementation technique, pen and paper as a backup system.
AAC Intervention Outcome: Paper and pen became primary means of communication, alphabet supplementation secondary; both solutions better than portable high tech device.

Case Study #6: Dikeman & Kazandjian, 1995.
Patient Characteristics: 27 y. old male, spinal ALS; severe dysarthria; intelligible for family members only.
AAC Intervention: Multi-modal strategy: Eye-Link, communication board, stationary computer system at bed activated through Morse code, portable AAC device for outside of home.
AAC Intervention Outcome: Employment could be continued for some time; AAC allowed for more flexibility in communication with different partners in different contexts; more independence.

Case Study #7: Fosler, 1998.
Patient Characteristics: 47 y. old male; severe dysarthria.
AAC Intervention: Tried Dynavox first, then laptop with EZ Keys software, operated through scanning and eyebrow movements, infrared-switch; laptop provides e-mail access.
AAC Intervention Outcome: Maintained contacts to social environment; AAC enabled more personal discussions, mostly because of e-mail implementation in AAC system.

Discussion

Most ALS patients preferred a high technology AAC device. Low technology solutions play an important role as back-up strategies. Most common form of alternative access was scanning; however, difficulties with this selection technique are reported. Using AAC leads, in all cases, to an improvement of the overall communication status. The enhanced opportunities to communicate provide patients with more independence and allow patients to maintain close interactions with the social environment.

Through the use of AAC, individuals with ALS can continue to be active vocationally and participate in their communities. The new ways to communicate prevent social isolation and keep patients motivated by providing new perspectives. Finally, the implementation of AAC in the neurologic rehabilitation program facilitates the psycho-social status of patients and leads to an important increase in the quality of life.

Studies included in the research synthesis

Beukelman, D.R., & Yorkston, K.M. (1980). Nonvocal Communication. Performance Evaluation. Archives of Physical Medicine and Rehabilitation, 61, 272-275.

Beukelman, D.R., et al. (1981). Canon Communicator Use by Adults. A Retrospective Study. Journal of Speech and Hearing Disorders, 46, 374-378.

Beukelman, D.R., Yorkston, K.M., & Dowden, P.A. (1985). Augmentative Communication. A Casebook of Clinical Management. San Diego, CA: College Hill Press.

Dikeman, K.J., & Kazandjian, M.S. (1995). Communication and Swallowing Management of Tracheostomized and Ventilator-Dependent Adults. San Diego, CA: Singular.

Fosler, R. H. (1998). Looking for the Right Communication Device. Communication Outlook, 18 (2/3), 6-8.

Woltosz, W. (1988). Stephen Hawking's Communication System. Communication Outlook, 10 (1), 8-13.

Yorkston, K. M. (1989). Early Intervention in Amyotrophic Lateral Sclerosis. A Case Presentation. Augmentative and Alternative Communication, 5 (1), 67-70.

References

Beukelman, D. R., & Mirenda, P. (1998). Augmentative and Alternative Communication. Management of Severe Communication Disorders in Children and Adults. Baltimore, MD: Paul H. Brookes.

Beukelman, D. R., & Lasker, J. (1998). Augmentative and Alternative Communication Options for Persons with Neurologic Impairment. In R. B. Lazar (Ed.), Principles of Neurologic Rehabilitation (pp. 483-489). New York, NY: McGraw-Hill.

Cooper, H. M., & Lindsay, J. J. (1998). Research Synthesis and Meta-Analysis. In L. Bickman & D. J. Rog (Eds), Handbook of applied social research methods (pp. 315-337). Thousand Oakes, CA: Sage.

Creswell, J. W. (1994). Research Design: Qualitative and Quantitative Approaches. Thousand Oakes, CA: Sage.

Lloyd, L. L., Fuller, D. R., & Arvidson, H. H. (1997). Augmentative and alternative communication: A handbook of principles and practices. Needham Heights, MA: Allyn and Bacon.

Paterson, B. L., Thorne, S., & Dewis, M. (1998). Adapting to Managing Diabetes. Image: Journal of Nursing Scholarship, 30 (1), 57-62.

Paterson, B. L., Thorne, S. E., Canam, C., Jillings, C. (2001). Meta-Study of Qualitative Health Research. Thousand Oakes, CA: Sage.


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