Assistive Technology Research Institute
College Misericordia - Dallas, PA 18612
 
Founded and Sponsored by the Sisters of Mercy of Dallas

 

The Effect of AAC on Functional Activities

 



The Effect of AAC on Functional Activities and Perceived Quality of Life: A Single Case Study

Carrie Hapeman, Tiffany Krzynefski, Danielle Randazzo, Leah Youells, Tom Reed, Denis Anson

Abstract

Objective. This single-case study was designed to examine the impact of augmentative and alternative communication (AAC) devices on participation in functional life activities and the perceived quality of life (QOL) of an individual with a long-standing communication disorder. Method. This is a single-case study of an individual with a long-standing communication disorder who has been a user of an AAC device for over six months. The instrument that was utilized for this study is OT Fact. A retrospective A-B method was applied to this study. Results. The results indicated that this individual, after receiving an AAC device, demonstrated an increase in the ability to participate in functional life activities and perceived an increase in QOL. Data was analyzed through the use of OT Fact which produced difference scores and graphs. Conclusion. The results of this study indicate that the use of an AAC device can increase function in areas addressed by occupational therapy (OT). Results also indicate that individuals with communication disorders, upon receiving and integrating AAC into their lives, can perceive an improved QOL as a result of an increased ability to participate in functional life activities.

Key Words: Quality of Life, Augmentative Communication, Life Skills

Introduction

Quality of life (QOL) is a central theme of occupational therapy (OT). While QOL consists of several components, the component of communication is the focus of this study. According to Gail Fidler, "The ability to communicate allows one to connect with others. This engagement with others gives one a sense of who he/she is, which is essential to a person's quality of life" (G. Fidler, personal communication, March 18, 1998 ). However, through an extensive review of the literature, it has been discovered that there is a limited amount of information addressing the relationship between QOL and the ability to communicate. While it is known that the utilization of AAC devices enables individuals to communicate within his/her environment and that the ability to perform in life activities may positively effect one's perceived QOL, it is not known if the use of AAC devices effects one's functional capabilities in daily life and in turn his/her perceived QOL. This is seen as a topic that OT's may be interested in, because a main goal of OT is to aide individuals in increasing their functional abilities within their environment. Therefore, knowing how the incorporation of AAC devices affects the function of those with a long-standing communication disorder will guide OT's in the treatment of this population.

In order to address this issue, research was conducted to assess the individual's reported ability to participate in functional life activities and perceived QOL. Since, in some cases, OT's may be responsible for incorporating AAC devices into the client's daily activities, it is important for them to know how these devices and the use of them effect the individual's ability to perform functional life activities and perceived QOL and how to bring about enhancement of the person's perceived QOL through the use of these devices.

Background of the Problem

Everyone has a unique perspective about what constitutes a QOL that is more satisfying than not. Nordenfelt (1994) claims that "a person's quality of life is identical with his/her own evaluation of his/her life" (p. 6). According to the National Association for Medical Equipment Services (1998), QOL is linked to "the ability to perform activities in a manner, or within the range, considered normal for a human being" (p. 2).

People engage in numerous functional activities everyday. Functional activities directly relate to everyday needs and interests. While there are many enabling skills that contribute to active performance within functional life activities and allow for dyadic and group interactions with others, oral communication is probably the most important of these skills. Oral communication is the primary means for interacting and functioning within one's environment (Weiss, Lillywhite, & Gordon, 1980) and is essential for the enhancement of an individual's ability to live independently and function in society (Roberts, 1999).

"Many, but by no means all, communication acts involve the use of language. Language may be spoken, written, pictured, printed, even felt (Braille)" (Galvin & Scherer, 1996, p. 97). As of 1999 (ASHA) there are an estimated fourteen million people in the United States that experience difficulties with voice, speech, or language disorders. These people, who often have congenital and/or acquired conditions that interfere with the production of speech, face a lifelong struggle with the communication process (Galvin & Scherer, 1996). The frustration associated with this struggle can effect a person's ability to interact during work, school, and/or recreation (Angelo, 1997). The impairment of these types of social interaction may have an effect on an individual's performance within functional life activities and in turn may impact what the individual perceives as his/her QOL.

Over the years, a "whole new field of augmentative and alternative communication has developed to support individuals with speech disabilities" (National Center for Access Unlimited, 1991, p. 16). For those individuals with communication impairments, communication may now be remediated via speech therapy or augmented via AAC devices. An AAC device is defined as, "an electronic or non-electronic aid, device, or system that assists a [person] to meet communication needs arising from the [persons] current and projected daily activities" (Golinker, 1995, p. 2). A wide array of AAC devices exist today and range from "simple communication boards on which a person points to letters, words, or pictures, to amplifiers, to sophisticated computer technology" (National Center for Access Unlimited, 1991, p. 17). Augmentation of speech via electronic devices, if incorporated into daily living, may help the individual participate in functional life activities and improve his/her perceived QOL.

OT practitioners assist AAC device users to incorporate the device into their daily life. By integrating an AAC device into daily living, the ability of an individual with a communication disorder to participate in daily activities is increased, therefore increasing the persons perceived QOL. The National Association for Medical Equipment Services (1998) states that, "Quality of life is improved by anything which maximizes the individual's ability to control any or all aspects of their life and perform tasks independently" (p. 2). Therefore the research question is: Does AAC device use increase the ability to participate in life activities in individual's with long-standing communication disorders and increase their perceived QOL?

Method

Subject

The subject, Tom Reed, is 33 year old white male with a diagnosis of cerebral palsy with athetosis. The subject was located, contacted, and familiarized with this study through the Augmentative Communication On-Line Users Group (ACOLUG) list serve (www.temple.edu/inst_disabilities/ACOLUG/tacolug.html). "A list serve is an electronic mailing list" (Cohen, 1997, p. 1) in which one must subscribe to the service and will then receive e-mail access to all of it's members. The subject volunteered to participate in the study by replying to a consent form which the researchers posted on the list serve. After becoming familiar with the goals of the research project, Tom agreed to participate as both a subject and an author. Tom's participation as an author in the study gave researchers personal insight into his life before acquiring an AAC device. In his words:

I was born in Litchfield , Minnesota in 1965. I was the first person at my school with cerebral palsy to be mainstreamed into the public system. I had a management aide with me each day. In the summer of 1978, I had a chance to go to a residential program for physically disabled children. It was here that I was first introduced to an Apple II computer and some communication devices. While there, the speech pathologist let me use the school's Handi-Voice for much of the summer so I could get a sense for what it did. Before receiving my own Handi-Voice, unfamiliar people would treat me like a person who didn't understand what they were saying due to my poor speech. For instance, my junior high school counselor would come up to me and automatically start talking slow like, "h-e-l-l-o T-o-m". He would then begin sign language, assuming that I knew it. My after school life wasn't "normal". I was often very lonesome and would cry in bed about not being able to talk. In the spring of 9 th grade, a speech pathologist recommended that the Handi-Voice would best suit my needs. Funded through my local school district, this was the first time I could talk without having an interpreter. In my junior year of high school, I took a computer programming class which was a challenge for me due to the teacher's attitude. He questioned my interest in learning about computers because he felt I was incapable due to my disability. My quality of life, before receiving an AAC device that maximized my communication abilities, was dissatisfying to me unless people were familiar with my speech pattern. In May of 1997, I received a Liberator and it has been a part of my daily life ever since.

As of May, 1997, the subject communicates primarily through a Liberator. A Liberator is a powerful and flexible communication device with many unique features. A Liberator can be described as an AAC device that (a) provides a vocabulary of over 4000 words (b) permits flexibility in adding new words (c) offers more selection techniques than any other AAC device (d) makes it easy to produce personalized generic phrases (e) allows one to store papers, speeches, shopping lists, etc. (f) can be used to operate a TV, VCR, or access a computer ( www.prentrom.com/speech/lib.html)

The purpose of the study was then to determine if the Liberator1, with all its unique features, impacted Tom's perceived QOL and ability to function in life activities.

Instrument

In order to evaluate Tom's ability to perform functional activities in everyday life, the researchers used OT Fact. OT Fact, designed by Smith (1992), is an assessment that addresses five main areas of performance and can compare performance under two conditions, before and after. OT Fact categorizes functional activities into five main areas: role integration, activities of performance, integration skills of performance, components of performance, and environment. OT Fact is based on an "interval scale, where 1 is in the middle of 0 and 2" (R. Smith, personal communication, December 12, 1997 ). Questions pertaining to each area are answered in one of four ways: 2 (no deficit), 1 (partial deficit), 0 (total deficit), ? (not examined).

There are four levels of questions that constitute OT Fact. The first level of questions is where broader areas of performance, such as personal care and home management activities, are scored. When an individual reports "partial deficit" in an area of performance, OT Fact provides further questions about component skills, such as bathing and meal preparation, that enable an individual to perform within the specified area of performance. This process continues through all four levels of questions.

OT Fact was used as the instrument because, "the specific purpose of this instrument is to be a reliable and valid way to assess the function of people with disabilities" (R. Smith, personal communication, February 9, 1998 ). The scoring format for OT Fact

is designed to maintain the sensitivity of the scale while at the same time optimize reliability through its narrow three point increments. By lengthening the scale and keeping the rater choice limited, theoretically both high reliability and sensitivity are maintained (Smith, 1991, p. 4).

Procedure

The research design was quantitative with an A-B Retrospective approach. The independent variable was the use of an AAC device, and the dependent variables were the subject's reported functional performance within the OT Fact areas and the subject's perceived QOL. The perceived QOL was derived from Tom, who wrote about his personal feelings, performance in OT Fact areas and components, and history with and without a Liberator.

The researchers sought potential research subjects by subscribing to, and participating in, the ACOLUG list serve. After gaining some rapport with the individuals in the list serve, researchers posted a message via e-mail that described the study and requested an individual who was interested in contributing to the study by completing OT Fact. Through participation in this list serve, the researchers met, and recruited Tom, the subject for the study. An e-mail message was forwarded to Tom, the interested individual, stating issues of purpose, confidentiality, and consent. Consent was acknowledged by replying to the message, stating willingness to participate and become an author.

OT Fact items were sent through personal e-mail to Tom. Researchers sent the first level of questions from each of the five main areas of OT Fact to Tom. He answered each question with 2, 1, 0, or ?. Once researchers received the responses, they then determined what questions were to be sent out next to Tom. If he responded with a 0, 2, or ? no further sub-questions were needed for that particular question. If Tom responded with a 1, he received a set of sub-questions for that particular area of performance.

Results

OT Fact analysis, shows that Tom experienced functional changes in four out of five OT Fact areas after receiving an AAC device. In the area of Role Integration, Tom was fully capable of functioning before receiving the device, therefore there was no room for change. Within the area of Activities of Performance, Tom's answers indicate an 11% increase in function. This increase in functioning is attributable to gains in Communication Activities (15%), Consumer Activities (25%), Community Activities (25%), and Avocational Activities (25%). Results from the area of Integrated Skills of Performance indicate a 4% increase in his functional abilities. This increase is due to gains within his Social Integration Skills (25%) . Under Components of Performance, there is a 6% increase noted, with gains in Social (50%) and Psychological Components (10%). Within the area of Environment, there is a 4% increase, specifically in relation to Communication Accessibility (50%) in the physical environment.

Overall, the results indicate that after receiving the AAC device, Tom's performance within the OT Fact areas either increased or stayed the same. Those areas in which gain was noted include psychological, community, and social areas, and are all common areas addressed by OT. The areas that were not effected related to Tom's physical capacities, those of which could not be helped by the Liberator.

After receiving the AAC device, Tom experienced dramatic changes in both his QOL and participation in daily activities, as indicated in his words:

After receiving the Liberator, my quality of life has definitely improved. Knowing that I have access to such a high-tech AAC device has helped me to regain confidence in going out in public. If people in the general public cannot understand my speech, I can use my Liberator to communicate with them in a clear manner, which is something I could not do before. I feel that my involvement in the community has changed for the better. People seem to accept me more than they ever did, and they give me a chance to demonstrate what my abilities are. There are times when people will actually approach me and ask for a demonstration of my Liberator. This always makes me feel great and boosts my confidence, because people become impressed with my ability to use the Liberator to communicate within my environment. I now serve on my local United Cerebral Palsy (UCP) affiliate as one of the board of directors and on the committee that reviews funding requests. I've designed my own web page ( www.netlinkcom.com/~treed ) and the web page for my local UCP affiliate ( http://members.aol.com/~tomrcs/ ) and ProWorks Incorporated (www.proworks-mn.com). Overall, having a Liberator has enabled me to communicate effectively with people in the community, who now accept me for who I am. I now feel like I am respected more by people and considered to be an individual who positively contributes to the community that I live in.

Discussion

This study shows that the incorporation of an AAC device into one's life does have a significant impact on daily functioning and what one perceives as his/her QOL. This finding is consistent with the researchers initial assumption that the use of an AAC device can increase function in areas commonly addressed by OT and one's perceived QOL.

As evidenced by Tom's personal thoughts on life without a Liberator, he had many difficulties in the OT Fact component areas of (a) communication activities (b) consumer activities (c) community activities (d) avocational activities (e) social integration skills (f) social components (g) psychological components (h) physical environment and (I) communication accessibility prior to incorporating the Liberator into his life. His "afterthoughts" however gave the researchers insight into how his performance and feelings have changed within the above OT Fact component areas due to the Liberator and the effect it had on his perceived QOL. This finding is consistent with the researchers' second assumption that individuals with communication disorders, upon receiving and integrating AAC into their lives, can perceive an improved QOL as a result of an increased ability to participate in functional life activities.

Communication activities are now easier for Tom. Tom stated that he was limited in his ability to communicate and experienced the stigma of having a communication disorder before receiving the Liberator. However, upon integrating this AAC device into his life, Tom is now able to make requests, initiate/terminate conversations, and express his needs and thoughts effectively in his environment.

As a consumer utilizing an AAC device, Tom is able to make clear to others what purchases he would like to make and give directions to others who can assist him with the physical components of consumer activities. Prior to having the Liberator, Tom's abilities were questioned by others who felt that he was incapable and limited due to the effects of his CP. Tom now demonstrates that he is a capable member of the community who is satisfied with his performance as a consumer.

As an active member of the community, Tom feels that he positively contributes to the community in which he lives and frequently engages in community activities. Tom demonstrates this by serving on the UCP board of directors and a committee that reviews and advocates for AAC funding requests, and using his computer abilities to design web pages.

In the area of avocational activities, solitary and social leisure, Tom is now able to independently participate in a variety of activities by initiating and engaging himself. Activities that Tom finds meaningful and enjoyable include watching TV, listening to music, surfing the internet, going out to parks, and telling jokes. The Liberator, due to its many unique features, enables Tom to now independently operate a TV and radio and access a computer to contact others through e-mail, design web pages, and take advantage of all the opportunities a computer offers. Going out to parks is a more enjoyable experience for Tom now that he can spontaneously interact with others and make people, as well as himself, laugh by telling silly jokes.

In relation to the OT Fact component social integration skills, and social and psychological components, Tom reported an increase in function. Tom, by being able to use his Liberator to engage in daily interactions with others (ie: friends, UCP board, etc.), experiences a more positive self concept. His positive sense of self can be attributed to his ability to now actively engage in and contribute to group and dyadic relationships and interactions. Tom himself stated that prior to having the device, there were many times that he was lonesome due to the inability to speak and actively engage in the community. Now, after receiving the device, he expresses feeling more accepted by others and is proud to demonstrate his communication abilities with an increased sense of confidence.

Overall, Tom reports an increase in his QOL upon integrating the Liberator into his daily life. He is now able to interact within his physical environment and is communicationally accessible, that of which Tom states is important to his perceived QOL. He now lives a life that is satisfying to him and can engage in the activities that constitute a good QOL for him. Most importantly though, as Tom stated, he is respected by the community at large.

Conclusions

This study demonstrates that individuals with communication impairments can maximize their performance in functional life activities and enhance their perceived QOL through integration of AAC devices. Tom is one example of how an individual, by taking full advantage of the opportunities that an AAC device offers, can gain more control of his/her life and expand horizons. Tom now not only does what he "needs" to do but what he "wants" to do and can be happy and satisfied with his performance in functional life activities.

Occupational therapy addresses functional activities, meaningful occupations, and quality of life. As this study demonstrated, all of these things can be affected by the use of an AAC device in the lives of persons with communication disorders. Since occupational therapists often encounter people with speech disorders, it is essential that they be knowledgeable and actively advocate for the use of AAC, and work to incorporate AAC into the daily lives of their clients with speech disorders. Mary Jane Frick, an OT who works with AAC devices and the people that use them at Good Shepherd Raker Center , Allentown , Pa. , advocates for OT's participation in the incorporation of AAC devices into the lives of individual's with communication disorders. Mary Jane states that, "it is a common misconception that speech therapists are the only professionals that administer AAC devices and assist in incorporating them into people's lives" (M.J. Frick, personal communication, March 24, 1999 ). She strongly feels that, "the team approach is the best approach to incorporate all areas of expertise in aiming towards what's best for the client" (M.J. Frick, personal communication, March 24, 1999 ). She believes that, "OT's are great for administering and incorporating AAC devices due to their education and background in such areas as vision, cognition, positioning, and ergonomics" (M.J. Frick, personal communication, March 24, 1999 ), all of which contribute to individuals being able to effectively use an AAC device. In reference to OT's education in the area AAC, Mary Jane feels "it is necessary to attend continuing education seminars, speak to vendors, and speak to specialists to remain updated with the current issues and equipment" (M.J. Frick, personal communication, March 24, 1999 ).

Limitations/Further Recommendations

While the assumptions of the study were supported by the results, there are a few limitations of this study. The first limitation is that the study is a single subject design, and therefore the results cannot be generalized to all AAC device users. However, the study does show that the introduction of AAC has the potential to provide positive experiences for those with communication disorders.

The second limitation is that Tom was questioned retrospectively which may result in responses that are not fully detailed due to memory lapses that naturally occur over time.

The third limitation is that Tom volunteered to participate in the study versus being randomly selected. This is a threat to internal validity because "subjects who volunteer for a study are likely to be different from those who are selected to participate" (Bailey, 1997, p. 71). The researchers' assumption about a volunteer is that he/she may be different due to a willingness to disclose information about positive experiences. This excludes AAC device users who are not on the ACOLUG list serve, those who may not want to disclose personal information or who may have had negative experiences with an AAC device.

The fourth limitation is that the subject is a high level communicator, someone who was motivated to learn about and incorporate the AAC device into his life. Others with an AAC device who are not as motivated may not experience the positive impact that Tom did on daily functioning and QOL.

The fifth and final limitation is that Tom's AAC device is a Liberator, an advanced AAC device with many features allowing diverse interaction within the environment. Other AAC device users who do not possess as advanced of a system may not experience the results of the study in such depth and quality.

Further recommendations for research include (a) obtaining a broader and larger sample of AAC users who utilize a variety of devices, both high and low level, (b) investigating the involvement of OT's on treatment teams who incorporate AAC devices into the lives of individuals with communication disorders, and (c) investigating the education that OT schools provide to students concerning assistive technology and how to incorporate it into individual's lives. Because of the limitations of the study, the results should not be taken to show what will occur through the incorporation of AAC, but only what can occur.

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1 Prentke Romich Company: 1022 Heyl Road , Wooster , OH 44691 . Fax (330) 263-4829