http://informahealthcare.com/dre ISSN 0963-8288 print/ISSN 1464-5165 online Disabil Rehabil, Early Online: 1–8 ! 2014 Informa UK Ltd. DOI: 10.3109/09638288.2014.961659
RESEARCH PAPER
What communication strategies do AAC users want their communication partners to use? A preliminary study Hanne Sofie Midtlin1, Kari-Anne B. Næss2, Tone Taxt1, and Asgjerd Vea Karlsen1 Department of Education, Buskerud and Vestfold University College, Borre, Norway and 2Department of Special Needs Education, University of Oslo, Oslo, Norway
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Abstract
Keywords
Purpose: This study aims to investigate which communication strategies the people, who use augmentative and alternative communication (AAC), want their communication partners to use. Methods: We interviewed eight children using Talking Mats to examine the AAC users’ own opinion. Results: The results showed that they wanted their communication partners to take the initiative, to repair the breaks when communication breakdowns occurred, and to invest time in understanding what AAC users wanted to express. Conclusions: These results underlined the significant responsibility of communication partners and revealed the need for AAC user interventions to help them be active communicators. More research needs to emphasise AAC users’ opinions about communication partner strategies to improve the communication processes for AAC-users and thereby promote social inclusion in natural environment.
AAC user, communication partners, communication strategies, Talking Mats History Received 7 November 2013 Revised 21 August 2014 Accepted 1 September 2014 Published online 22 September 2014
ä Implications for Rehabilitation
Communication partner strategies can affect communication as well as personal development and life quality for augmentative and alternative communication (AAC) users. In AAC-users opinion, their communication partners should take the communicative initiative, repair the breaks when communication breakdowns occurred, and invest time in understanding what AAC-users want to express. There is a need to inform and educate communication partners, especially those unfamiliar to AAC users. Practical training sessions, clinician modelling and written materials may be helpful. A communication partner guide can be adapted to each individual AAC user who explains his or her communication preferences. Additionally, there is a need that the clinicians promote active rather than passive communication from AAC users, which requires that they have access to the necessary symbols.
Introduction Communication is a dynamic process that depends upon the strategic skills of the participating communication partners [1]. However, in communication with individuals using alternative and augmentative communication (AAC), the outcome varies greatly due to communication partner strategies. To achieve real interaction through communication, it is necessary for AAC users and communication partners to understand each other and be aware of strategies that will enhance their communication. This article aims to investigate which communication strategies AAC users want their communication partners to use. Emphasising the role of communication partners is important because their strategies can help AAC users to succeed in communication. Functional communication is not only necessary for all people to express options and needs and influence the environment but also to understand what others communicate and to participate in dialogues and mutual communicative
communities. Communication partner strategies will thus affect personal development and life quality for AAC users. Communication strategies There is a lack of studies that have investigated which communication strategies AAC users want their communication partners to use. Tetzchner and Martinsen [2] state the following factors as foundational communication strategies in general: initiating and maintaining communication, turn taking, being able to change topics, and being able to repair communication breakdowns. Beukelman and Mirenda [3,4] identify similar strategies as important when communicating with others: strategies for topic initiation, strategies for repairing communication and strategies concerning modality. Modality concerns the relationship between communication partners and may reflect how well they know each other, along with their feelings of comfort, confidence and equality. Communication initiation and completion
Address for correspondence: Kari-Anne B. Næss, Department of Special needs Education, University of Oslo, Post Box 1140 Blindern, 0318 Oslo, Norway. Tel: 0047 922 40 741. E-mail: [email protected]
Initiating communication demands that people are able to attract others’ attention. For people with severe communication
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disorders, this prospect can be challenging. First, they are often unable to gain others’ attention through speech; second, they may have vocalisations and movement patterns that are difficult to interpret as communication starters. Consequently, their communication attempts might be overlooked [2]. In addition, many AAC users have passive communication styles, meaning they engage in few communication interactions [5–7]. Light et al. [6] studied interactions between adult communication partners and 3to 6-year-old children who used Bliss - a symbol system developed for persons with communication, language and learning difficulties - to communicate. In this study, the adults took 85% of all initiatives to communicate. Light further implied that because the communication was dominated by adults, the adults also concluded the communication, thereby emphasising the importance of teaching AAC users how to start and terminate communication. The availability of actual symbols for communication initiation and termination would then be essential. Maintaining a communication and turn taking To maintain communicative interactions, facilitating relationships among family members, classmates, co-workers and other communication partners is vital [8]. Tetzchner and Martinsen [2] indicate that AAC users often have problems interpreting turntaking through non-verbal signals (e.g. facial expressions and intonation). Verbal communicators exchange common signals that may be challenging for AAC users to understand. When an AAC user takes a turn communicating, he or she is often answering questions. Thus, to maintain communication and take turns, communication partners should facilitate communication with AAC users beyond simply asking questions for the AAC users to answer [2]. Previous research suggests that communication partners’ awareness of time perspective is crucial before taking a new initiative in communicating with an AAC user. Light et al. [6], for example, found that when parents of children using Bliss provided them additional time to express themself, the children showed increased rate in initiatives to maintain communication. Choosing and changing topics in communication It is challenging for many AAC users to choose and change topics. According to Beukelman and Mirenda [4, p. 221], ‘‘When the person attempts to introduce a new topic of conversation with one or more poorly articulated words, his or her communication partner is required to guess what the word is from a virtual universe of possibilities’’. When a child uses single word utterances to choose topics, it poses great challenges to communication partners who must guess what he or she actually wants to express. Tetzchner and Martinsen [2] suggest that using strategies that establish topic agreement prior to communication will create expectations and potentially decrease the number of misunderstandings. Practising communication on various topics also benefits many AAC users [2], as repetitious communication topics are dull and less interesting to communication partners. Communication strategies that, for example, provide communication partners with symbols or messages to enable AAC users to take initiatives (e.g. ‘‘I want to talk about something different’’) may potentially enhance the possibility of more dynamic communication [9].
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Communication partners seldom spend time repairing such breakdowns, as this requires a considerable amount of time. Past research also provides clear evidence that many communication partners need to learn how to successfully communicate with AAC users [2,3]. Several earlier research studies have focused on effective and efficient instructional methods for communication partner intervention programs (for narrative reviews, see [11,12]). However, few of these studies measured outcomes for AAC users. Douglas [13] includes the AAC user perspective in her review, but the intervention programs were not founded on AAC user needs. Existing studies seem to neglect AAC user perspectives and outcomes, and, as a result, important factors that communication partner intervention programs should heed may be overlooked. Haug and Backmann [14] refer to the democratisation process and participation as two important ways to effect AAC user inclusion; in other words, they stress the importance of listening to AAC users’ opinions to discern what communication strategies they want their communication partners to use. Summary and research question Few studies have investigated which communication strategies AAC users want their communication partners to use. Tetzchner and Martinsen [2] state communication initiation and maintenance, turn-taking, the capacity to change topics, and communication breakdown repair as foundational communication strategies. Based on their identifications, the following research question guided the present study: What communication strategies do AAC users want their communication partners to use?
Methods Participants The participants in this study were originally nine multi-disabled children with intellectual disabilities (without any significant visual impairment) who were using AAC; the children were recruited through local schools. The parents were provided with an information letter detailing the study’s aims, and they all gave informed consent for their children’s participation. Descriptive participant information concerning age, gender, diagnoses and AAC type is shown in Table 1. As observed in Table 1, the children’s age ranged between 10 and 17 years. Most children had Cerebral Palsy (CP) and used Roll Talk. Many of them also used Bliss symbols. Based on information from their teachers, all children, except C8, had a gap between their communicative comprehension and their communicative expression using AAC. However, C8 was excluded from the sample because of selective mutism – a complex childhood anxiety disorder characterised by the inability to communicate in a socially appropriate manner in selected social settings (e.g. in an educational/testing setting, even in a non-verbal manner; APA, 2013). Further, we decided not to complete the tasks with child C3 because parts of the interview were too difficult for her. However, her teacher confirmed that the tasks she fulfilled were representative, and they are therefore included in the ‘‘Results’’ section. Ethical consideration took priority, which is why her data are missing for some of the questions. Data collection methods
Communication breakdowns AAC user communication consists of more communicational breakdowns than communication between verbal communicators, and AAC users have more problems repairing these breaks. Skogdal [10] concluded that AAC users’ challenges in repairing communication breakdowns persist into adult life.
The data collection was conducted through participant interviews using Talking Mats. The Talking Mats tool consists of a mat and several symbols. The symbols have three functions: to provide topics, to provide utterances, and to be used as a visual rating scale. Talking Mats were originally developed by Joan Murphy and Lois Cameron [15] to help people with cerebral palsy and
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Table 1. Descriptive participant information concerning age, gender, diagnoses and AAC type. Informant
Age
Gender
Diagnoses (*)
AAC
C1
10.0
Male
CP
C2
14.6
Female
CP, brain damage, and epilepsy
C3 C4 C5
13.6 13.6 14.0
Female Female Female
CP and brain damage CP Ataxia Telangiectasia
C6 C7 C8
17.0 13.6 13.1
Male Male Male
CP CP and epilepsy Multi-disabled and selective mutism
C9
10.7
Male
CP
Communication book, Roll Talk, small set of signs and vocals, and body language Bliss symbols, Roll Talk, grapheme, mobile phone, internet, and body language Communication book, Roll Talk, and body language Communication book, Tobii eye gaze, and Bliss symbols Roll Talk with her voice, communication book and her own voice Roll Talk and Bliss symbols Communication book, Roll Talk and Bliss symbols Writing, body language, and oral language in safe situations and with a few people Roll Talk, and communication book
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CP ¼ Cerebral Palsy. Grey color indicates that the child dropped out of the study. *In addition, all participants were within the target group of Talking Mats (i.e. had a mild-to-moderate intellectual disability, understood symbols and were able to point).
communication disorders in expressing their thoughts and needs. Since then, people with slight to moderate intellectual disabilities and various communication disorders have used this tool to support their reflections and expressions [15,16]. The tools require AAC users to master pointing at and understanding symbols; additionally, users must understand at least two keywords in a sentence and be able to confirm or deny what has been asked. When using the tool, open-ended questions should be asked (e.g. ‘‘What do you think about. . .?’’). In the present study, Talking Mats was not meant to replace the child’s communication system but rather was used in conjunction with any of the participants’ existing systems. It was chosen to facilitate engagement between the AAC user and researcher; with this tool, the AAC user and researcher are occupied in a joint task – sharing a topic with symmetrical interaction, something so often absent when one person has communication difficulties and the other does not. Bell and Cameron [17] suggest that people acquire information through visual and auditory channels when using Talking Mats, which in turn reduces the required memory capacity so that the person’s energy can be used to process the information and to respond. Moreover, the structured nature of the Talking Mats framework can help people with language and cognitive difficulties by dividing the information into smaller more manageable components. Finally, more researchers have used Talking Mats to interview AAC users (e.g. [18,19]). Developing interview questions/themes The interview protocol consisted mainly of 23–28 (depending on the size of their family and the number of teaching staff) openended questions/statements with three alternatives as answers (‘‘like’’, ‘‘unsure’’ and ‘‘do not like’’). Nineteen of the questions were directly related to the communication strategies that the AAC users wanted their communication partner to use. The rest of the questions were related to different background variables, e.g. how they liked to communicate with their family members, teachers, classmates and strangers, how they liked their AAC tool and how they like to initiate communication: information that may be relevant to how well they like to communicate in general. Further questions were chosen based on the strategies outlined in the ‘‘Introduction’’ section of the present article. The overall strategy of the interview protocol was to formulate questions using the main communication strategies that follow a dialogue process (strategies with which all informants most likely had experience): initiating communication, maintaining communication, turn-taking, changing topics, repairing breakdowns and terminating communication.
To avoid leading or overly difficult questions for the children, to maintain the children’s motivation and to ensure that the children did not follow a routine, two different openers were chosen: ‘‘What do you think about. . .’’ and ‘‘Do you like. . .’’ Procedure for collecting data In the present study, each participant was investigated in a separate room at his or her school. It was important to conduct the interviews in familiar surroundings so that the participants could feel safe. Each interview was conducted using Talking Mats and followed the same procedure used by Murphy and Cameron [15]. First, a pilot was conducted in which the interviewer informed the children about the content of the questions and the top scale (like, do not like and unsure). Additionally, the children were informed that they could use their AAC to explain their answers further if they wanted to add any in-depth information. In the pilot, the questions focused on a concrete topic, namely what the children liked to eat. The main aim of the pilot was to ensure that the participants had understood the top scale and how to use the tool. The main interview followed the same procedure as the pilot and focused on the communication strategies that the AAC users wanted their communication partners to use. The interviewer and the AAC user sat either opposite to each other or next to each other (depending on the ASK user’s wish). They had a dark grey doormat in front of them. To support participant’s comprehension, the questions and the answer options were visualised with symbols. On the mat, there was one symbol at the bottom that illustrated the overall topic of their conversation, and on the top there was one symbol for each possible answer on the top scale: ‘‘like’’, ‘‘unsure’’ and ‘‘do not like’’. The interviewer asked one question at a time, e.g. ‘‘What do you think if others ask questions you can answer yes or no to?’’ Along with asking the questions orally, the interviewer showed the AAC user a corresponding visual symbol. The AAC user answered by pointing to where he or she wanted the interviewer to put the symbol on the mat (under ‘‘like’’, ‘‘unsure’’ or ‘‘do not like’’), and the interviewer placed the symbol where the child pointed to (children with the necessary motor skills put the symbol on the mat themselves). Finally, after the AAC user had answered the questions about one strategy, the interviewer summarised the answers orally while pointing to the symbols, and then moved on to the next strategy. During the interview, the interviewer marked the answers schematically. When the interview was finished, the answers were documented by taking a photo of the mat. In addition to the manual registration in the interview session, each interview was
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videotaped to ensure that no communication attempts are overlooked. The videotaping also provided the opportunity to observe how the interview affected the participant. In addition to the videotaping, observation schemes developed for Talking Mats were used. Interviews with children must be conducted with caution. One risk is to ‘‘put words into their mouths’’. This risk is amplified when interviewing individuals with intellectual disabilities involving communication disorders, as opposed to typically developing children [20]. Another risk is that the individuals may find it hard to communicate about communication. First, this concept is abstract and may be hard to explain using symbols. Second, it can be challenging to talk about communication because it requires participants to take a meta-perspective.
Two researchers coded the videotaped interviews based on the initial topics and compared them with the coding from the interview setting. Inter-observer reliability between the interview setting and the video observation was 100%. The present study is primarily based on quantitative data for use in descriptive analysis. The sample size does not allow for calculating effect size. In research focusing on intellectual disability, the sample size is usually small [21]. This small sample size is potentially due to the occurrence of diagnosis and subsequent recruitment problems. Nevertheless, the present study is unique in investigating what communication strategies children using AAC want their communication partners to use. Both the study design and its results can therefore be used as a basis for further research in the field.
Maintaining and turn-taking in communication (modality) To investigate maintaining and turn-taking in communication, the participants were asked how they liked their communication partners to take turns in communication. The results are shown in Figure 2. As observed in Figure 2, seven children stated that they liked when communication partners asked yes–no questions. At the same time, six children liked being able to express more than yes– no responses when participating in a conversation.
Results like
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The results from the questions related to the background information (how they like their communication devices, how they like to initiate communication and who they like to talk to) show that all participants liked communicating using their communication devices but enjoyed initiating communication to various degrees (four liked, one did not know, two did not like and c3 was missing). They generally preferred talking to familiar communication partners and partners who were acquainted with their way of communicating. This preference may have been due to their experience of more functional communication with people they knew than with people they did not know.
In Figure 1, the results for initiating and terminating communication are shown. like
8
unsure
do not like
Number of parcipants
6 5 4 3 2 1 0 Others do not You say what you understand that are going to talk you will say about something
Initiating and terminating communication
Others start to talk
unsure
do not like
6 5 4 3 2 1 0 Yes/no- quesons
More than yes/no
Others stop talking
Figure 1. How children like communication partners to initiate and terminate communication.
7 Number of parcipants
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Coding and analysis
As observed in Figure 1, five children disliked when the communication partner did not understand that they wanted to say something. These children likely made communicative attempts that were overlooked; they initiated communication by vocalisations, movement, and laughing or smiling. These in turn might have been difficult for their communication partners to interpret as communicative intents. Five children preferred the communication partners to start the communication. This preference may be attributed to their experience of initiatives not being perceived or understood. Five children disliked when the communication partners stopped talking about topics they wanted to talk about. This stresses the importance of children’s strategies for telling partners that they have not finished talking about a subject. This desire might be illustrated with a symbol for ‘‘wait’’ or ‘‘I have not finished’’. Six children answered that they liked when the conversation started with clarifications of what the conversation would entail. This strategy may facilitate AAC users’ active participation.
Not waing
Enough me to answer*
Your turn*
Figure 2. How children like maintaining and turn-taking in communication (modality) (*N ¼ 7, C3 is missing).
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Six children liked when their partners gave them a sufficient amount of time to answer and seven children disliked when their partners did not wait until they were finished talking. The children we interviewed needed strategies for telling their partners that they required more time, something that may have occurred because their communication partners were not attentive enough to the children’s need for an additional time. One child answered that he/she did not like when others gave them more time. This dislike might be due to the child’s passive communication style, or it might have been difficult for them to answer even with an additional time. Five children liked that the communication partner said ‘‘your turn’’ when they were talking together. Two children did not like this strategy. These children likely experienced the strategy as unnatural, or they needed more experience to understand turntaking signals.
In Figure 3, the results for preferred sentence complexity are shown. As observed in Figure 3, five children liked to communicate using both single- and multiple-word utterances. The child’s adequate management of sentence complexity in diverse settings may depend on whether the environment, including the communication partners operating within it, was successful in providing adequate vocabulary. Of course, adequate sentence complexity may have been directly connected to the children’s linguistic competence; a child’s language functioning affects the level and length of his or her communicative utterances. The children’s operational competence might also have influenced the utterance length and complexity, as fatigue and access difficulty were more of an issue for some children than for others.
Repairing communication breakdowns Due to communication breakdowns, the children were asked how their communication partner could be more responsible for maintaining communication. The results are shown in Figure 5. As shown in Figure 5, two children liked when communication partners changed topics when a communication breakdown occurred; four children, however, did not like this response to communication breakdown. Four children liked when communication partners tried to guess what they wanted to say. The children unanimously stated that when there were communication breakdowns, they liked when their communication partners tried to figure out what they wanted to say. Before communication continued, the children preferred taking time to clarify the misunderstandings or breakdowns. These preferences demand communication partner strategies [2,9] or easy strategies for children to correct mistakes. Tetzchner and Martinsen [2] claim that communication partners often do not take the time to clarify breakdowns, which in turn may have contributed to the lack of strategies.
Discussion This study’s results show that the children wanted their communication partners to take the initiative, and in the case of communication breakdowns, they wanted their communication partners to repair the breaks. Overall, they wanted their communication partners to invest time in understanding what the AAC user wanted to express. These results will be discussed below.
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Choosing and changing communication topics
6
like
unsure
like
unsure
do not like
6 Number of parcipants
To investigate how they liked to choose and change communication topics, the children were asked whether they liked when others decided the topic and whether they liked others to decide when topics changed. The results are shown in Figure 4. As observed in Figure 4, four children stated that they liked when their communication partners chose the topics. Six children disliked that their communication partners changed topics when they wanted to talk more about it. Still choosing and changing topics have been observed as particularly difficult for many AAC users [4], the results might signal that the informants wanted to actively take part in maintaining the communication. To enhance the child’s confidence when choosing topics, it may be important for AAC users to learn to discuss a variety of topics [2].
5 4 3 2 1 0 Others decide what you are going to talk about*
Others decide that you are going to talk about something else
Figure 4. How children want their communication partners to choose and change topics (*N ¼ 7, C3 is missing).
9
do not like
like
unsure
do not like
8 Number of parcipants
5 Number of parcipants
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Preferred sentence complexity
5
4 3 2
7 6 5 4 3 2 1
1
0 Others try to figure out what you want to say
0 One-word uerances*
Several word uerances
Figure 3. Children’s preferred sentence complexity (*N ¼ 7, C3 is missing).
Others change topic Others are trying to guess what you are saying* when they do not understand*
Figure 5. How children want their communication partners to repair breakdowns (*N ¼ 7, C3 is missing).
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Taking the initiative in communication
Investing time in the communication
In line with Light and Binger [9], the present study’s children wanted their communication partners to take the initiative to start communication. Initiating communication requires the ability to obtain others’ attention, and for AAC users, attracting attention can be difficult because of their lack of typical vocalisations, gestures and body language. AAC users often try to get attention in unusual ways, or they do not have effective strategies for getting attention. Consequently, their communication attempts can be overlooked. Additionally, taking the initiative requires AAC users to expand their communicative utterances beyond one-word utterances. Without the necessary vocabulary, it is hard to initiate communication. If they do not have the vocabulary available, AAC users’ communication partners may have problems understanding their communicative initiatives. These difficulties may explain why most AAC users in this study liked to communicate with people they knew who were familiar with their ways of communicating. Familiar communication partners usually understand the way AAC users communicate, which makes communication more successful. However, the partner facilitates communication, and the AAC user often takes a passive role. Individuals with communicative disorders are at particular risk for learned helplessness [5,7]. Daily life experiences may have given them the feeling that their responses will have no effect on their environment; therefore, there is no use in taking the initiative to communicate. If the communication partner responsibly takes the initiative and facilitates communication, children may instead feel safe and that the communication is being managed. However, taking the initiative is important to actively initiate desired communication and to direct communication and social interaction. Although AAC users want their communication partners to take the initiative, it is important that they also learn how to initiate communication. Then, both communication partners and AAC users can initiate communication, which is also important in managing turn-taking.
Researchers have underlined the importance of investing time in communication, but neither Tetzchner and Martinsen [2] nor Beukelman and Mirenda [3] have seen time as its own strategy. In this study, however, the children thought that time perspective was an important strategy in communication; they wanted their partners to allow enough time for the answer to be expressed and to wait for their turn – without interruptions. Limited time in communication may result in challenges in two different areas. First, limited time may inhibit AAC users from finding the correct vocabulary in their communication systems to express their thoughts. Second, it may cause problems in turn-taking and response. There is an asymmetrical communication structure between an AAC user and his or her partner. Often the AAC user has a reduced processing speed, which explains why he or she needs additional time to take a turn or make a response. In all communication, there is a need to take each person seriously and with respect. Investing time may be a strategy for showing interest in what the AAC user wants to say. Additional time can also help avoid communication breakdowns and misunderstandings. Communication complexities can be simplified if more time is invested; when slowing down communication speed, partners usually make simpler or plainer sentences. On the one hand, this simplification may sometimes lead communication partners to under stimulate and under estimate AAC users; on the other hand, when communication partners invest time in communication, AAC users may experience greater success.
Repairing breakdowns In accordance with Tetzchner and Martinsen [2], this study’s results show that repairing communication breakdowns is an important communication strategy. Communication disorders in young AAC-users may often result in more communication breakdowns than in typical communication. People usually repair breakdowns themselves to clarify mistakes or to give their communication the desired direction. By contrast, children using AAC want their communication partners to repair breakdowns. This desire may reflect the children’s lack of safe surroundings, insecurity about their communicative competence, or earlier negative experiences with breakdowns. AAC-users need both vocabulary and so-called strategic competence [9], which includes having the knowledge to initiate communication and an understanding of which vocabulary to use; they also need practical training in using the actual vocabulary. Moreover, AAC users often have limited experience in different social settings and in repairing breakdowns. In kindergarten, at school, or at home, the adults feel responsible for the social settings and the different communication situations in which the child participates; this responsibility includes initiating, maintaining and terminating communication. Communication turn-taking moves very quickly, and AAC users often need more processing time to express themselves. They may feel safer when their communication partners are responsible for communication and for repairing breakdowns. Their communication partners often have a large vocabulary and may have strategic competence to check if they have understood correctly or to ask additional questions to maintain communication.
Practical implications There is a lack of research and knowledge about young AAC users and their communication partners, and AAC user research is seldom based on AAC users’ experiences. Talking about communication can be both complex and abstract [20]. However, we found that Talking Mats were useful tools for discussing communication with AAC users, both for their memory enhancement and their concreteness. Talking Mats made it possible for the AAC-users to see the total content of the communication. This may suggest that Talking Mats increased the children’s possibility to understand and remember the content of the questions. The present study’s results show several interesting findings in terms of their practical implications. First, the children did have opinions about which communication strategies they wanted their communication partners to use. Thus, AAC users must be asked about communication and how to optimise the communication process. Second, AAC users’ preference for others being responsible for communication initiation and maintenance may be a function of learned helplessness. As such, it is important to encourage and equip children to initiate their own communication. Otherwise, we perpetuate a pattern of AAC users as passive communicators, which will not help users manage their safety, socially interact or obtain their wants and needs. Third, AAC users wanted enough time to answer and take turns in communication; this desire highlights the need for an active communication style that uses symbols for phrases (e.g. ‘‘Please wait’’, ‘‘One moment’’) that express AAC users’ need for an additional time. Lastly, the children using AAC liked to communicate with people who understand their way of communicating, which underscores the need for informing and educating communication partners, especially those unknown to AAC users. A communication partner guide can be adapted to each individual child. Key answers about the AAC user’s preferential strategies for his or her communication partner may constitute the main points in such a guide. Making the guide available may be useful for both new and
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DOI: 10.3109/09638288.2014.961659
familiar communication partners. Together, these implications will promote active rather than passive communication in AAC users.
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Limitations and future direction Although several precautions have been taken to ensure this study’s validity, it has some limitations. First, the method used for data collection was based on Talking Mats. The Talking Mats framework enables participants to consider aspects of their lives and express their views. This tool was developed for people with intellectual disabilities and for AAC users; however, it can be difficult to ensure that users’ voices are heard in decision-making because someone else chooses which questions are asked in association with the subject. Talking Mats require that participants be able to indicate their likes and dislikes and to express views about the choices available to them [22]. However, studies investigating young AAC users’ needs are usually conducted using parents or teachers as children. In this study, the Talking Mats format was suggested to be a powerful tool in allowing AAC users to communicate their own views and to be involved in making choices. It should be noted that this study includes a small sample size, the data are too preliminary to make the claim that Talking Mats is suitable. Therefore, its suitability for research interviews in particular and for communication in general needs to be investigated in further research. Second, the use of children with communication disorders and intellectual disabilities as informants may affect the validity of the results. There is a 33.33% possibility of ‘‘guessing’’ an answer, which means that answers do not necessarily correspond to the child’s actual opinion. Considering the views of children with intellectual disabilities presents several significant challenges [23]. One may suggest that the results should be interpreted with caution and that the complexity behind the rhetoric of using information provided by people with intellectual disabilities has to be discussed. In addition to the individual factors related to the child and the interviewer, several other factors such as the method the study employed and the questions in the interview protocol may contribute to more or less reliable reports from children [24]. However, several steps have been taken to ensure the quality of the present study: (a) All children participating in the interview understood spoken words and all children in the final sample could be described as belonging to the expression group [2]. (b) The questions in the interview focused on the communication strategies used in the dialogue process to ensure that the participants had experiences with the strategies. (c) The interview protocol included a limited set of questions to ensure full attention throughout the interview. Since children with intellectual disabilities often have problems with persistence and concentration [25] and AAC-users often require more time and effort to answer a question than people using oral language, number of questions may affect the validity of the result. (d) The questions were as simple as possible in light of the children’s intellectual disabilities. To ensure that the interview protocol matched the listening comprehension level of the participating children with intellectual disabilities, the protocol was developed by a multi-professional research team and two independent practitioners, both with formal knowledge and practice in the field of AAC. Nonetheless, the questions avoided leading the children. Further, visual symbols were used to frame questions and support memory, and a pilot ensured that the child understood the procedure before the main interview started. (e) The interviewers were formally qualified in teaching AAC work in the field with AAC users: one was a special needs education teacher, and the other was a speech and language therapist. They were certified in using the Talking Mats method.
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(f) The children’s answers were checked against the teacher’s knowledge of the children. A third limitation of the present study is that the sample includes relatively few children. However, studies about children with intellectual disabilities often contain few informants with a broad age range [26]; thus, this study does not stand out from other studies in the field. This small sample size does limit the external validity of these the results [27], meaning the generalisation of the results should be done with caution. Nevertheless, to our knowledge, this is the first study to investigate which communication strategies children using AAC want their communication partners to use. The study should be used as a foundation for further research. More tools need to be developed that allow people with intellectual disabilities to consider and be actively engaged in communication and decision-making about the choices available to them.
Conclusion The results of this study show that AAC users wanted their communication partners to initiate communication and to repair the breaks during communication breakdowns. Overall, they wanted their communication partners to invest time to understand what the AAC users wanted to express. In addition, highlighting the importance of informing communication partners about AAC user preferences, the results underline the need for interventions that give AAC users the opportunity to possess the actual vocabulary required to initiate and repair communications and to encourage and equip initiation strategies. Still, it is difficult to generalise the results from this preliminary study, which is the first one to investigate AAC users’ perspectives; more emphasis needs to be placed on research in this area that promotes active rather than passive communication in individuals with intellectual disabilities.
Declaration of interest The authors report no conflicts of interest. The authors alone are responsible for the content and writing of this article.
References 1. Kent-Walsh J, McNaughton D. Communication partner instruction in AAC: present practices and future directions. AAC 2005;21: 195–204. 2. Tetzchner SV, Martinsen H. Alternative and augmentative communication [In Norwegian: alternativ og supplerende kommunikasjon: en innføring i tegn-spra˚ksopplæring og bruk av kommunikasjonshjelpemidler for mennesker med spra˚k-og kommunikasjonsvansker]. Oslo: Gyldendal Akademisk; 2002. 3. Beukelman DR, Mirenda P. Augmentative & alternative communication: supporting children & adults with complex communication needs. Baltimore, MD: Paul H. Brookes Pub; 2005. 4. Beukelman DR, Mirenda P. Augmentative and alternative communication. supporting children and adults with complex communication needs. 3rd ed. Baltimore: Brookes Publishing; 2013. 5. Basil C. Social interaction and learned helplessness in severely disabled children. AAC 1992;8:188–99. 6. Light JC, Collier B, Parnes P. Communicative interaction between young nonspeaking physically disabled children and their primary caregivers: Part I – discourse patterns. Augment Alternat Commun 1985;1:74–83. 7. Seligman M. Helplessness: on depression, development, and death. San Francisco, CA: WH Freeman; 1975. 8. Feeley KM, Jones EA. Obtaining and maintaining communicative interactions. In: Johnston SS, Reichle J, Freeley KM, Jones EA, eds. AAC strategies for individuals with moderate to severe disabilities. Baltimore: Brookes Publishing; 2011:279–310. 9. Light JC, Binger C. Building communicative competence with individuals who use augmentative and alternative communication. Baltimore: Paul H. Brookes; 1998.
Disabil Rehabil Downloaded from informahealthcare.com by Selcuk Universitesi on 02/07/15 For personal use only.
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H. S. Midtlin et al.
10. Skogdal S. Communication promoting factors by AAC [In Norwegian: Kommunikasjonsfremmende faktorer ved alternativ og supplerende kommunikasjon] [Master thesis]. University of Tromsø, Tromsø; 2005. 11. Pennington L, Goldbart J, Marshall J. Interaction training for conversational partners of children with cerebral palsy: a systematic review. Int J Lang Commun Disord 2004;39:151–70. 12. Smidt A, Balandin S, Sigafoos J, Reed VA. The Kirkpatrick model: a useful tool for evaluating training outcomes. J Intellect Develop Disabil 2009;34:266–74. 13. Douglas SN. Teaching paraeducators to support the communication of individuals who use augmentative and alternative communication: a literature review. Education 2012;15. Available from http://cie.asu.edu/ojs/index.php/cieatasu/article/view/906 [last accessed 12 Sep 2014]. 14. Haug P, Backmann K. Forskning om tilpasset opplæring [Research on differentiated education]. Volda: Høgskulen i Volda; 2006. 15. Murphy J, Cameron L. Talking Mats. A method facilitating communication [In Swedish: Talking Mats. En metod som underlettar kommunikation]. Go¨teborg: Kommunikations. Og dataresurscenter fo¨r personer med funksjonshinder, DART: Regionala barn- og ungdomshabiliteringen, Drottning Silvias barn- og ungdomssjukhus; 2007. 16. Ferm U, Pilesjo¨ MS, Jo¨born MT. Samtalsmatta. Svenska erfarenheter avmetoden. Va¨llingby: Hja¨lmedelinstituttet; 2009. 17. Bell D, Cameron L. From dare I say. . .? to I dare say: a case example illustrating the extension of the use of Talking Mats to people with learning disabilities who are able to speak well but unwilling to do so. Brit J Learn Disabil 2008;36:122–7.
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18. Murphy J, Cameron L. The effectiveness of Talking Mats for people with intellectual disability. Brit J Learn Disabil 2008;36:232–41. 19. Murphy J, Tester S, Hubbard G, et al. Enabling frai older people with a communication difficulty to express their views: the use of Talking Mats as an interview tool. Health Soc Care Commun 2005; 13:95–107. 20. Brewster S. Putting words into their mouths? Interviewing people with learning disabilities and little/no speech. Brit J Learn Disabil 2004;32:166–9. 21. Næss K-AB, Lyster S-AH, Hulme C, Melby-Lerva˚g M. Language and verbal short-term memory skills in children with Down syndrome: a meta-analytic review. Res Develop Disabil 2011;32: 2225–34. 22. Cameron L, Murphy J. Enabling young people with a learning disability to make choices at a time of transition. Brit J Learn Disabil 2002;30:105–12. 23. Lewis A. And when did you last see your father? Exploring the views of children with learning difficulties/disabilities. Brit J Special Educ 2004;31:4–10. 24. Quas JA, Goodman GS, Ghetti S, Redlich AD. Questioning the child witness: what can we conclude from the research thus far? Trauma Violence Abuse 2000;1:223–49. 25. Cornish K, Wilding J. Attention, genes and developmental disorders. Oxford: Oxford University Press; 2010. 26. Næss K-AB. Language and reading development in children with Down syndrome. Oslo: Unipub AS; 2012. 27. Shadish WR, Cook TD, Campbell DT. Experimental and quasiexperimental designs for generalized causal inference. Boston: Houghton Mifflin; 2002.
RESEARCH PAPER
What communication strategies do AAC users want their communication partners to use? A preliminary study Hanne Sofie Midtlin1, Kari-Anne B. Næss2, Tone Taxt1, and Asgjerd Vea Karlsen1 Department of Education, Buskerud and Vestfold University College, Borre, Norway and 2Department of Special Needs Education, University of Oslo, Oslo, Norway
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Abstract
Keywords
Purpose: This study aims to investigate which communication strategies the people, who use augmentative and alternative communication (AAC), want their communication partners to use. Methods: We interviewed eight children using Talking Mats to examine the AAC users’ own opinion. Results: The results showed that they wanted their communication partners to take the initiative, to repair the breaks when communication breakdowns occurred, and to invest time in understanding what AAC users wanted to express. Conclusions: These results underlined the significant responsibility of communication partners and revealed the need for AAC user interventions to help them be active communicators. More research needs to emphasise AAC users’ opinions about communication partner strategies to improve the communication processes for AAC-users and thereby promote social inclusion in natural environment.
AAC user, communication partners, communication strategies, Talking Mats History Received 7 November 2013 Revised 21 August 2014 Accepted 1 September 2014 Published online 22 September 2014
ä Implications for Rehabilitation
Communication partner strategies can affect communication as well as personal development and life quality for augmentative and alternative communication (AAC) users. In AAC-users opinion, their communication partners should take the communicative initiative, repair the breaks when communication breakdowns occurred, and invest time in understanding what AAC-users want to express. There is a need to inform and educate communication partners, especially those unfamiliar to AAC users. Practical training sessions, clinician modelling and written materials may be helpful. A communication partner guide can be adapted to each individual AAC user who explains his or her communication preferences. Additionally, there is a need that the clinicians promote active rather than passive communication from AAC users, which requires that they have access to the necessary symbols.
Introduction Communication is a dynamic process that depends upon the strategic skills of the participating communication partners [1]. However, in communication with individuals using alternative and augmentative communication (AAC), the outcome varies greatly due to communication partner strategies. To achieve real interaction through communication, it is necessary for AAC users and communication partners to understand each other and be aware of strategies that will enhance their communication. This article aims to investigate which communication strategies AAC users want their communication partners to use. Emphasising the role of communication partners is important because their strategies can help AAC users to succeed in communication. Functional communication is not only necessary for all people to express options and needs and influence the environment but also to understand what others communicate and to participate in dialogues and mutual communicative
communities. Communication partner strategies will thus affect personal development and life quality for AAC users. Communication strategies There is a lack of studies that have investigated which communication strategies AAC users want their communication partners to use. Tetzchner and Martinsen [2] state the following factors as foundational communication strategies in general: initiating and maintaining communication, turn taking, being able to change topics, and being able to repair communication breakdowns. Beukelman and Mirenda [3,4] identify similar strategies as important when communicating with others: strategies for topic initiation, strategies for repairing communication and strategies concerning modality. Modality concerns the relationship between communication partners and may reflect how well they know each other, along with their feelings of comfort, confidence and equality. Communication initiation and completion
Address for correspondence: Kari-Anne B. Næss, Department of Special needs Education, University of Oslo, Post Box 1140 Blindern, 0318 Oslo, Norway. Tel: 0047 922 40 741. E-mail: [email protected]
Initiating communication demands that people are able to attract others’ attention. For people with severe communication
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disorders, this prospect can be challenging. First, they are often unable to gain others’ attention through speech; second, they may have vocalisations and movement patterns that are difficult to interpret as communication starters. Consequently, their communication attempts might be overlooked [2]. In addition, many AAC users have passive communication styles, meaning they engage in few communication interactions [5–7]. Light et al. [6] studied interactions between adult communication partners and 3to 6-year-old children who used Bliss - a symbol system developed for persons with communication, language and learning difficulties - to communicate. In this study, the adults took 85% of all initiatives to communicate. Light further implied that because the communication was dominated by adults, the adults also concluded the communication, thereby emphasising the importance of teaching AAC users how to start and terminate communication. The availability of actual symbols for communication initiation and termination would then be essential. Maintaining a communication and turn taking To maintain communicative interactions, facilitating relationships among family members, classmates, co-workers and other communication partners is vital [8]. Tetzchner and Martinsen [2] indicate that AAC users often have problems interpreting turntaking through non-verbal signals (e.g. facial expressions and intonation). Verbal communicators exchange common signals that may be challenging for AAC users to understand. When an AAC user takes a turn communicating, he or she is often answering questions. Thus, to maintain communication and take turns, communication partners should facilitate communication with AAC users beyond simply asking questions for the AAC users to answer [2]. Previous research suggests that communication partners’ awareness of time perspective is crucial before taking a new initiative in communicating with an AAC user. Light et al. [6], for example, found that when parents of children using Bliss provided them additional time to express themself, the children showed increased rate in initiatives to maintain communication. Choosing and changing topics in communication It is challenging for many AAC users to choose and change topics. According to Beukelman and Mirenda [4, p. 221], ‘‘When the person attempts to introduce a new topic of conversation with one or more poorly articulated words, his or her communication partner is required to guess what the word is from a virtual universe of possibilities’’. When a child uses single word utterances to choose topics, it poses great challenges to communication partners who must guess what he or she actually wants to express. Tetzchner and Martinsen [2] suggest that using strategies that establish topic agreement prior to communication will create expectations and potentially decrease the number of misunderstandings. Practising communication on various topics also benefits many AAC users [2], as repetitious communication topics are dull and less interesting to communication partners. Communication strategies that, for example, provide communication partners with symbols or messages to enable AAC users to take initiatives (e.g. ‘‘I want to talk about something different’’) may potentially enhance the possibility of more dynamic communication [9].
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Communication partners seldom spend time repairing such breakdowns, as this requires a considerable amount of time. Past research also provides clear evidence that many communication partners need to learn how to successfully communicate with AAC users [2,3]. Several earlier research studies have focused on effective and efficient instructional methods for communication partner intervention programs (for narrative reviews, see [11,12]). However, few of these studies measured outcomes for AAC users. Douglas [13] includes the AAC user perspective in her review, but the intervention programs were not founded on AAC user needs. Existing studies seem to neglect AAC user perspectives and outcomes, and, as a result, important factors that communication partner intervention programs should heed may be overlooked. Haug and Backmann [14] refer to the democratisation process and participation as two important ways to effect AAC user inclusion; in other words, they stress the importance of listening to AAC users’ opinions to discern what communication strategies they want their communication partners to use. Summary and research question Few studies have investigated which communication strategies AAC users want their communication partners to use. Tetzchner and Martinsen [2] state communication initiation and maintenance, turn-taking, the capacity to change topics, and communication breakdown repair as foundational communication strategies. Based on their identifications, the following research question guided the present study: What communication strategies do AAC users want their communication partners to use?
Methods Participants The participants in this study were originally nine multi-disabled children with intellectual disabilities (without any significant visual impairment) who were using AAC; the children were recruited through local schools. The parents were provided with an information letter detailing the study’s aims, and they all gave informed consent for their children’s participation. Descriptive participant information concerning age, gender, diagnoses and AAC type is shown in Table 1. As observed in Table 1, the children’s age ranged between 10 and 17 years. Most children had Cerebral Palsy (CP) and used Roll Talk. Many of them also used Bliss symbols. Based on information from their teachers, all children, except C8, had a gap between their communicative comprehension and their communicative expression using AAC. However, C8 was excluded from the sample because of selective mutism – a complex childhood anxiety disorder characterised by the inability to communicate in a socially appropriate manner in selected social settings (e.g. in an educational/testing setting, even in a non-verbal manner; APA, 2013). Further, we decided not to complete the tasks with child C3 because parts of the interview were too difficult for her. However, her teacher confirmed that the tasks she fulfilled were representative, and they are therefore included in the ‘‘Results’’ section. Ethical consideration took priority, which is why her data are missing for some of the questions. Data collection methods
Communication breakdowns AAC user communication consists of more communicational breakdowns than communication between verbal communicators, and AAC users have more problems repairing these breaks. Skogdal [10] concluded that AAC users’ challenges in repairing communication breakdowns persist into adult life.
The data collection was conducted through participant interviews using Talking Mats. The Talking Mats tool consists of a mat and several symbols. The symbols have three functions: to provide topics, to provide utterances, and to be used as a visual rating scale. Talking Mats were originally developed by Joan Murphy and Lois Cameron [15] to help people with cerebral palsy and
AAC users and communication strategies
DOI: 10.3109/09638288.2014.961659
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Table 1. Descriptive participant information concerning age, gender, diagnoses and AAC type. Informant
Age
Gender
Diagnoses (*)
AAC
C1
10.0
Male
CP
C2
14.6
Female
CP, brain damage, and epilepsy
C3 C4 C5
13.6 13.6 14.0
Female Female Female
CP and brain damage CP Ataxia Telangiectasia
C6 C7 C8
17.0 13.6 13.1
Male Male Male
CP CP and epilepsy Multi-disabled and selective mutism
C9
10.7
Male
CP
Communication book, Roll Talk, small set of signs and vocals, and body language Bliss symbols, Roll Talk, grapheme, mobile phone, internet, and body language Communication book, Roll Talk, and body language Communication book, Tobii eye gaze, and Bliss symbols Roll Talk with her voice, communication book and her own voice Roll Talk and Bliss symbols Communication book, Roll Talk and Bliss symbols Writing, body language, and oral language in safe situations and with a few people Roll Talk, and communication book
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CP ¼ Cerebral Palsy. Grey color indicates that the child dropped out of the study. *In addition, all participants were within the target group of Talking Mats (i.e. had a mild-to-moderate intellectual disability, understood symbols and were able to point).
communication disorders in expressing their thoughts and needs. Since then, people with slight to moderate intellectual disabilities and various communication disorders have used this tool to support their reflections and expressions [15,16]. The tools require AAC users to master pointing at and understanding symbols; additionally, users must understand at least two keywords in a sentence and be able to confirm or deny what has been asked. When using the tool, open-ended questions should be asked (e.g. ‘‘What do you think about. . .?’’). In the present study, Talking Mats was not meant to replace the child’s communication system but rather was used in conjunction with any of the participants’ existing systems. It was chosen to facilitate engagement between the AAC user and researcher; with this tool, the AAC user and researcher are occupied in a joint task – sharing a topic with symmetrical interaction, something so often absent when one person has communication difficulties and the other does not. Bell and Cameron [17] suggest that people acquire information through visual and auditory channels when using Talking Mats, which in turn reduces the required memory capacity so that the person’s energy can be used to process the information and to respond. Moreover, the structured nature of the Talking Mats framework can help people with language and cognitive difficulties by dividing the information into smaller more manageable components. Finally, more researchers have used Talking Mats to interview AAC users (e.g. [18,19]). Developing interview questions/themes The interview protocol consisted mainly of 23–28 (depending on the size of their family and the number of teaching staff) openended questions/statements with three alternatives as answers (‘‘like’’, ‘‘unsure’’ and ‘‘do not like’’). Nineteen of the questions were directly related to the communication strategies that the AAC users wanted their communication partner to use. The rest of the questions were related to different background variables, e.g. how they liked to communicate with their family members, teachers, classmates and strangers, how they liked their AAC tool and how they like to initiate communication: information that may be relevant to how well they like to communicate in general. Further questions were chosen based on the strategies outlined in the ‘‘Introduction’’ section of the present article. The overall strategy of the interview protocol was to formulate questions using the main communication strategies that follow a dialogue process (strategies with which all informants most likely had experience): initiating communication, maintaining communication, turn-taking, changing topics, repairing breakdowns and terminating communication.
To avoid leading or overly difficult questions for the children, to maintain the children’s motivation and to ensure that the children did not follow a routine, two different openers were chosen: ‘‘What do you think about. . .’’ and ‘‘Do you like. . .’’ Procedure for collecting data In the present study, each participant was investigated in a separate room at his or her school. It was important to conduct the interviews in familiar surroundings so that the participants could feel safe. Each interview was conducted using Talking Mats and followed the same procedure used by Murphy and Cameron [15]. First, a pilot was conducted in which the interviewer informed the children about the content of the questions and the top scale (like, do not like and unsure). Additionally, the children were informed that they could use their AAC to explain their answers further if they wanted to add any in-depth information. In the pilot, the questions focused on a concrete topic, namely what the children liked to eat. The main aim of the pilot was to ensure that the participants had understood the top scale and how to use the tool. The main interview followed the same procedure as the pilot and focused on the communication strategies that the AAC users wanted their communication partners to use. The interviewer and the AAC user sat either opposite to each other or next to each other (depending on the ASK user’s wish). They had a dark grey doormat in front of them. To support participant’s comprehension, the questions and the answer options were visualised with symbols. On the mat, there was one symbol at the bottom that illustrated the overall topic of their conversation, and on the top there was one symbol for each possible answer on the top scale: ‘‘like’’, ‘‘unsure’’ and ‘‘do not like’’. The interviewer asked one question at a time, e.g. ‘‘What do you think if others ask questions you can answer yes or no to?’’ Along with asking the questions orally, the interviewer showed the AAC user a corresponding visual symbol. The AAC user answered by pointing to where he or she wanted the interviewer to put the symbol on the mat (under ‘‘like’’, ‘‘unsure’’ or ‘‘do not like’’), and the interviewer placed the symbol where the child pointed to (children with the necessary motor skills put the symbol on the mat themselves). Finally, after the AAC user had answered the questions about one strategy, the interviewer summarised the answers orally while pointing to the symbols, and then moved on to the next strategy. During the interview, the interviewer marked the answers schematically. When the interview was finished, the answers were documented by taking a photo of the mat. In addition to the manual registration in the interview session, each interview was
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videotaped to ensure that no communication attempts are overlooked. The videotaping also provided the opportunity to observe how the interview affected the participant. In addition to the videotaping, observation schemes developed for Talking Mats were used. Interviews with children must be conducted with caution. One risk is to ‘‘put words into their mouths’’. This risk is amplified when interviewing individuals with intellectual disabilities involving communication disorders, as opposed to typically developing children [20]. Another risk is that the individuals may find it hard to communicate about communication. First, this concept is abstract and may be hard to explain using symbols. Second, it can be challenging to talk about communication because it requires participants to take a meta-perspective.
Two researchers coded the videotaped interviews based on the initial topics and compared them with the coding from the interview setting. Inter-observer reliability between the interview setting and the video observation was 100%. The present study is primarily based on quantitative data for use in descriptive analysis. The sample size does not allow for calculating effect size. In research focusing on intellectual disability, the sample size is usually small [21]. This small sample size is potentially due to the occurrence of diagnosis and subsequent recruitment problems. Nevertheless, the present study is unique in investigating what communication strategies children using AAC want their communication partners to use. Both the study design and its results can therefore be used as a basis for further research in the field.
Maintaining and turn-taking in communication (modality) To investigate maintaining and turn-taking in communication, the participants were asked how they liked their communication partners to take turns in communication. The results are shown in Figure 2. As observed in Figure 2, seven children stated that they liked when communication partners asked yes–no questions. At the same time, six children liked being able to express more than yes– no responses when participating in a conversation.
Results like
7
The results from the questions related to the background information (how they like their communication devices, how they like to initiate communication and who they like to talk to) show that all participants liked communicating using their communication devices but enjoyed initiating communication to various degrees (four liked, one did not know, two did not like and c3 was missing). They generally preferred talking to familiar communication partners and partners who were acquainted with their way of communicating. This preference may have been due to their experience of more functional communication with people they knew than with people they did not know.
In Figure 1, the results for initiating and terminating communication are shown. like
8
unsure
do not like
Number of parcipants
6 5 4 3 2 1 0 Others do not You say what you understand that are going to talk you will say about something
Initiating and terminating communication
Others start to talk
unsure
do not like
6 5 4 3 2 1 0 Yes/no- quesons
More than yes/no
Others stop talking
Figure 1. How children like communication partners to initiate and terminate communication.
7 Number of parcipants
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Coding and analysis
As observed in Figure 1, five children disliked when the communication partner did not understand that they wanted to say something. These children likely made communicative attempts that were overlooked; they initiated communication by vocalisations, movement, and laughing or smiling. These in turn might have been difficult for their communication partners to interpret as communicative intents. Five children preferred the communication partners to start the communication. This preference may be attributed to their experience of initiatives not being perceived or understood. Five children disliked when the communication partners stopped talking about topics they wanted to talk about. This stresses the importance of children’s strategies for telling partners that they have not finished talking about a subject. This desire might be illustrated with a symbol for ‘‘wait’’ or ‘‘I have not finished’’. Six children answered that they liked when the conversation started with clarifications of what the conversation would entail. This strategy may facilitate AAC users’ active participation.
Not waing
Enough me to answer*
Your turn*
Figure 2. How children like maintaining and turn-taking in communication (modality) (*N ¼ 7, C3 is missing).
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DOI: 10.3109/09638288.2014.961659
Six children liked when their partners gave them a sufficient amount of time to answer and seven children disliked when their partners did not wait until they were finished talking. The children we interviewed needed strategies for telling their partners that they required more time, something that may have occurred because their communication partners were not attentive enough to the children’s need for an additional time. One child answered that he/she did not like when others gave them more time. This dislike might be due to the child’s passive communication style, or it might have been difficult for them to answer even with an additional time. Five children liked that the communication partner said ‘‘your turn’’ when they were talking together. Two children did not like this strategy. These children likely experienced the strategy as unnatural, or they needed more experience to understand turntaking signals.
In Figure 3, the results for preferred sentence complexity are shown. As observed in Figure 3, five children liked to communicate using both single- and multiple-word utterances. The child’s adequate management of sentence complexity in diverse settings may depend on whether the environment, including the communication partners operating within it, was successful in providing adequate vocabulary. Of course, adequate sentence complexity may have been directly connected to the children’s linguistic competence; a child’s language functioning affects the level and length of his or her communicative utterances. The children’s operational competence might also have influenced the utterance length and complexity, as fatigue and access difficulty were more of an issue for some children than for others.
Repairing communication breakdowns Due to communication breakdowns, the children were asked how their communication partner could be more responsible for maintaining communication. The results are shown in Figure 5. As shown in Figure 5, two children liked when communication partners changed topics when a communication breakdown occurred; four children, however, did not like this response to communication breakdown. Four children liked when communication partners tried to guess what they wanted to say. The children unanimously stated that when there were communication breakdowns, they liked when their communication partners tried to figure out what they wanted to say. Before communication continued, the children preferred taking time to clarify the misunderstandings or breakdowns. These preferences demand communication partner strategies [2,9] or easy strategies for children to correct mistakes. Tetzchner and Martinsen [2] claim that communication partners often do not take the time to clarify breakdowns, which in turn may have contributed to the lack of strategies.
Discussion This study’s results show that the children wanted their communication partners to take the initiative, and in the case of communication breakdowns, they wanted their communication partners to repair the breaks. Overall, they wanted their communication partners to invest time in understanding what the AAC user wanted to express. These results will be discussed below.
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Choosing and changing communication topics
6
like
unsure
like
unsure
do not like
6 Number of parcipants
To investigate how they liked to choose and change communication topics, the children were asked whether they liked when others decided the topic and whether they liked others to decide when topics changed. The results are shown in Figure 4. As observed in Figure 4, four children stated that they liked when their communication partners chose the topics. Six children disliked that their communication partners changed topics when they wanted to talk more about it. Still choosing and changing topics have been observed as particularly difficult for many AAC users [4], the results might signal that the informants wanted to actively take part in maintaining the communication. To enhance the child’s confidence when choosing topics, it may be important for AAC users to learn to discuss a variety of topics [2].
5 4 3 2 1 0 Others decide what you are going to talk about*
Others decide that you are going to talk about something else
Figure 4. How children want their communication partners to choose and change topics (*N ¼ 7, C3 is missing).
9
do not like
like
unsure
do not like
8 Number of parcipants
5 Number of parcipants
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Preferred sentence complexity
5
4 3 2
7 6 5 4 3 2 1
1
0 Others try to figure out what you want to say
0 One-word uerances*
Several word uerances
Figure 3. Children’s preferred sentence complexity (*N ¼ 7, C3 is missing).
Others change topic Others are trying to guess what you are saying* when they do not understand*
Figure 5. How children want their communication partners to repair breakdowns (*N ¼ 7, C3 is missing).
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Taking the initiative in communication
Investing time in the communication
In line with Light and Binger [9], the present study’s children wanted their communication partners to take the initiative to start communication. Initiating communication requires the ability to obtain others’ attention, and for AAC users, attracting attention can be difficult because of their lack of typical vocalisations, gestures and body language. AAC users often try to get attention in unusual ways, or they do not have effective strategies for getting attention. Consequently, their communication attempts can be overlooked. Additionally, taking the initiative requires AAC users to expand their communicative utterances beyond one-word utterances. Without the necessary vocabulary, it is hard to initiate communication. If they do not have the vocabulary available, AAC users’ communication partners may have problems understanding their communicative initiatives. These difficulties may explain why most AAC users in this study liked to communicate with people they knew who were familiar with their ways of communicating. Familiar communication partners usually understand the way AAC users communicate, which makes communication more successful. However, the partner facilitates communication, and the AAC user often takes a passive role. Individuals with communicative disorders are at particular risk for learned helplessness [5,7]. Daily life experiences may have given them the feeling that their responses will have no effect on their environment; therefore, there is no use in taking the initiative to communicate. If the communication partner responsibly takes the initiative and facilitates communication, children may instead feel safe and that the communication is being managed. However, taking the initiative is important to actively initiate desired communication and to direct communication and social interaction. Although AAC users want their communication partners to take the initiative, it is important that they also learn how to initiate communication. Then, both communication partners and AAC users can initiate communication, which is also important in managing turn-taking.
Researchers have underlined the importance of investing time in communication, but neither Tetzchner and Martinsen [2] nor Beukelman and Mirenda [3] have seen time as its own strategy. In this study, however, the children thought that time perspective was an important strategy in communication; they wanted their partners to allow enough time for the answer to be expressed and to wait for their turn – without interruptions. Limited time in communication may result in challenges in two different areas. First, limited time may inhibit AAC users from finding the correct vocabulary in their communication systems to express their thoughts. Second, it may cause problems in turn-taking and response. There is an asymmetrical communication structure between an AAC user and his or her partner. Often the AAC user has a reduced processing speed, which explains why he or she needs additional time to take a turn or make a response. In all communication, there is a need to take each person seriously and with respect. Investing time may be a strategy for showing interest in what the AAC user wants to say. Additional time can also help avoid communication breakdowns and misunderstandings. Communication complexities can be simplified if more time is invested; when slowing down communication speed, partners usually make simpler or plainer sentences. On the one hand, this simplification may sometimes lead communication partners to under stimulate and under estimate AAC users; on the other hand, when communication partners invest time in communication, AAC users may experience greater success.
Repairing breakdowns In accordance with Tetzchner and Martinsen [2], this study’s results show that repairing communication breakdowns is an important communication strategy. Communication disorders in young AAC-users may often result in more communication breakdowns than in typical communication. People usually repair breakdowns themselves to clarify mistakes or to give their communication the desired direction. By contrast, children using AAC want their communication partners to repair breakdowns. This desire may reflect the children’s lack of safe surroundings, insecurity about their communicative competence, or earlier negative experiences with breakdowns. AAC-users need both vocabulary and so-called strategic competence [9], which includes having the knowledge to initiate communication and an understanding of which vocabulary to use; they also need practical training in using the actual vocabulary. Moreover, AAC users often have limited experience in different social settings and in repairing breakdowns. In kindergarten, at school, or at home, the adults feel responsible for the social settings and the different communication situations in which the child participates; this responsibility includes initiating, maintaining and terminating communication. Communication turn-taking moves very quickly, and AAC users often need more processing time to express themselves. They may feel safer when their communication partners are responsible for communication and for repairing breakdowns. Their communication partners often have a large vocabulary and may have strategic competence to check if they have understood correctly or to ask additional questions to maintain communication.
Practical implications There is a lack of research and knowledge about young AAC users and their communication partners, and AAC user research is seldom based on AAC users’ experiences. Talking about communication can be both complex and abstract [20]. However, we found that Talking Mats were useful tools for discussing communication with AAC users, both for their memory enhancement and their concreteness. Talking Mats made it possible for the AAC-users to see the total content of the communication. This may suggest that Talking Mats increased the children’s possibility to understand and remember the content of the questions. The present study’s results show several interesting findings in terms of their practical implications. First, the children did have opinions about which communication strategies they wanted their communication partners to use. Thus, AAC users must be asked about communication and how to optimise the communication process. Second, AAC users’ preference for others being responsible for communication initiation and maintenance may be a function of learned helplessness. As such, it is important to encourage and equip children to initiate their own communication. Otherwise, we perpetuate a pattern of AAC users as passive communicators, which will not help users manage their safety, socially interact or obtain their wants and needs. Third, AAC users wanted enough time to answer and take turns in communication; this desire highlights the need for an active communication style that uses symbols for phrases (e.g. ‘‘Please wait’’, ‘‘One moment’’) that express AAC users’ need for an additional time. Lastly, the children using AAC liked to communicate with people who understand their way of communicating, which underscores the need for informing and educating communication partners, especially those unknown to AAC users. A communication partner guide can be adapted to each individual child. Key answers about the AAC user’s preferential strategies for his or her communication partner may constitute the main points in such a guide. Making the guide available may be useful for both new and
AAC users and communication strategies
DOI: 10.3109/09638288.2014.961659
familiar communication partners. Together, these implications will promote active rather than passive communication in AAC users.
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Limitations and future direction Although several precautions have been taken to ensure this study’s validity, it has some limitations. First, the method used for data collection was based on Talking Mats. The Talking Mats framework enables participants to consider aspects of their lives and express their views. This tool was developed for people with intellectual disabilities and for AAC users; however, it can be difficult to ensure that users’ voices are heard in decision-making because someone else chooses which questions are asked in association with the subject. Talking Mats require that participants be able to indicate their likes and dislikes and to express views about the choices available to them [22]. However, studies investigating young AAC users’ needs are usually conducted using parents or teachers as children. In this study, the Talking Mats format was suggested to be a powerful tool in allowing AAC users to communicate their own views and to be involved in making choices. It should be noted that this study includes a small sample size, the data are too preliminary to make the claim that Talking Mats is suitable. Therefore, its suitability for research interviews in particular and for communication in general needs to be investigated in further research. Second, the use of children with communication disorders and intellectual disabilities as informants may affect the validity of the results. There is a 33.33% possibility of ‘‘guessing’’ an answer, which means that answers do not necessarily correspond to the child’s actual opinion. Considering the views of children with intellectual disabilities presents several significant challenges [23]. One may suggest that the results should be interpreted with caution and that the complexity behind the rhetoric of using information provided by people with intellectual disabilities has to be discussed. In addition to the individual factors related to the child and the interviewer, several other factors such as the method the study employed and the questions in the interview protocol may contribute to more or less reliable reports from children [24]. However, several steps have been taken to ensure the quality of the present study: (a) All children participating in the interview understood spoken words and all children in the final sample could be described as belonging to the expression group [2]. (b) The questions in the interview focused on the communication strategies used in the dialogue process to ensure that the participants had experiences with the strategies. (c) The interview protocol included a limited set of questions to ensure full attention throughout the interview. Since children with intellectual disabilities often have problems with persistence and concentration [25] and AAC-users often require more time and effort to answer a question than people using oral language, number of questions may affect the validity of the result. (d) The questions were as simple as possible in light of the children’s intellectual disabilities. To ensure that the interview protocol matched the listening comprehension level of the participating children with intellectual disabilities, the protocol was developed by a multi-professional research team and two independent practitioners, both with formal knowledge and practice in the field of AAC. Nonetheless, the questions avoided leading the children. Further, visual symbols were used to frame questions and support memory, and a pilot ensured that the child understood the procedure before the main interview started. (e) The interviewers were formally qualified in teaching AAC work in the field with AAC users: one was a special needs education teacher, and the other was a speech and language therapist. They were certified in using the Talking Mats method.
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(f) The children’s answers were checked against the teacher’s knowledge of the children. A third limitation of the present study is that the sample includes relatively few children. However, studies about children with intellectual disabilities often contain few informants with a broad age range [26]; thus, this study does not stand out from other studies in the field. This small sample size does limit the external validity of these the results [27], meaning the generalisation of the results should be done with caution. Nevertheless, to our knowledge, this is the first study to investigate which communication strategies children using AAC want their communication partners to use. The study should be used as a foundation for further research. More tools need to be developed that allow people with intellectual disabilities to consider and be actively engaged in communication and decision-making about the choices available to them.
Conclusion The results of this study show that AAC users wanted their communication partners to initiate communication and to repair the breaks during communication breakdowns. Overall, they wanted their communication partners to invest time to understand what the AAC users wanted to express. In addition, highlighting the importance of informing communication partners about AAC user preferences, the results underline the need for interventions that give AAC users the opportunity to possess the actual vocabulary required to initiate and repair communications and to encourage and equip initiation strategies. Still, it is difficult to generalise the results from this preliminary study, which is the first one to investigate AAC users’ perspectives; more emphasis needs to be placed on research in this area that promotes active rather than passive communication in individuals with intellectual disabilities.
Declaration of interest The authors report no conflicts of interest. The authors alone are responsible for the content and writing of this article.
References 1. Kent-Walsh J, McNaughton D. Communication partner instruction in AAC: present practices and future directions. AAC 2005;21: 195–204. 2. Tetzchner SV, Martinsen H. Alternative and augmentative communication [In Norwegian: alternativ og supplerende kommunikasjon: en innføring i tegn-spra˚ksopplæring og bruk av kommunikasjonshjelpemidler for mennesker med spra˚k-og kommunikasjonsvansker]. Oslo: Gyldendal Akademisk; 2002. 3. Beukelman DR, Mirenda P. Augmentative & alternative communication: supporting children & adults with complex communication needs. Baltimore, MD: Paul H. Brookes Pub; 2005. 4. Beukelman DR, Mirenda P. Augmentative and alternative communication. supporting children and adults with complex communication needs. 3rd ed. Baltimore: Brookes Publishing; 2013. 5. Basil C. Social interaction and learned helplessness in severely disabled children. AAC 1992;8:188–99. 6. Light JC, Collier B, Parnes P. Communicative interaction between young nonspeaking physically disabled children and their primary caregivers: Part I – discourse patterns. Augment Alternat Commun 1985;1:74–83. 7. Seligman M. Helplessness: on depression, development, and death. San Francisco, CA: WH Freeman; 1975. 8. Feeley KM, Jones EA. Obtaining and maintaining communicative interactions. In: Johnston SS, Reichle J, Freeley KM, Jones EA, eds. AAC strategies for individuals with moderate to severe disabilities. Baltimore: Brookes Publishing; 2011:279–310. 9. Light JC, Binger C. Building communicative competence with individuals who use augmentative and alternative communication. Baltimore: Paul H. Brookes; 1998.
Disabil Rehabil Downloaded from informahealthcare.com by Selcuk Universitesi on 02/07/15 For personal use only.
8
H. S. Midtlin et al.
10. Skogdal S. Communication promoting factors by AAC [In Norwegian: Kommunikasjonsfremmende faktorer ved alternativ og supplerende kommunikasjon] [Master thesis]. University of Tromsø, Tromsø; 2005. 11. Pennington L, Goldbart J, Marshall J. Interaction training for conversational partners of children with cerebral palsy: a systematic review. Int J Lang Commun Disord 2004;39:151–70. 12. Smidt A, Balandin S, Sigafoos J, Reed VA. The Kirkpatrick model: a useful tool for evaluating training outcomes. J Intellect Develop Disabil 2009;34:266–74. 13. Douglas SN. Teaching paraeducators to support the communication of individuals who use augmentative and alternative communication: a literature review. Education 2012;15. Available from http://cie.asu.edu/ojs/index.php/cieatasu/article/view/906 [last accessed 12 Sep 2014]. 14. Haug P, Backmann K. Forskning om tilpasset opplæring [Research on differentiated education]. Volda: Høgskulen i Volda; 2006. 15. Murphy J, Cameron L. Talking Mats. A method facilitating communication [In Swedish: Talking Mats. En metod som underlettar kommunikation]. Go¨teborg: Kommunikations. Og dataresurscenter fo¨r personer med funksjonshinder, DART: Regionala barn- og ungdomshabiliteringen, Drottning Silvias barn- og ungdomssjukhus; 2007. 16. Ferm U, Pilesjo¨ MS, Jo¨born MT. Samtalsmatta. Svenska erfarenheter avmetoden. Va¨llingby: Hja¨lmedelinstituttet; 2009. 17. Bell D, Cameron L. From dare I say. . .? to I dare say: a case example illustrating the extension of the use of Talking Mats to people with learning disabilities who are able to speak well but unwilling to do so. Brit J Learn Disabil 2008;36:122–7.
Disabil Rehabil, Early Online: 1–8
18. Murphy J, Cameron L. The effectiveness of Talking Mats for people with intellectual disability. Brit J Learn Disabil 2008;36:232–41. 19. Murphy J, Tester S, Hubbard G, et al. Enabling frai older people with a communication difficulty to express their views: the use of Talking Mats as an interview tool. Health Soc Care Commun 2005; 13:95–107. 20. Brewster S. Putting words into their mouths? Interviewing people with learning disabilities and little/no speech. Brit J Learn Disabil 2004;32:166–9. 21. Næss K-AB, Lyster S-AH, Hulme C, Melby-Lerva˚g M. Language and verbal short-term memory skills in children with Down syndrome: a meta-analytic review. Res Develop Disabil 2011;32: 2225–34. 22. Cameron L, Murphy J. Enabling young people with a learning disability to make choices at a time of transition. Brit J Learn Disabil 2002;30:105–12. 23. Lewis A. And when did you last see your father? Exploring the views of children with learning difficulties/disabilities. Brit J Special Educ 2004;31:4–10. 24. Quas JA, Goodman GS, Ghetti S, Redlich AD. Questioning the child witness: what can we conclude from the research thus far? Trauma Violence Abuse 2000;1:223–49. 25. Cornish K, Wilding J. Attention, genes and developmental disorders. Oxford: Oxford University Press; 2010. 26. Næss K-AB. Language and reading development in children with Down syndrome. Oslo: Unipub AS; 2012. 27. Shadish WR, Cook TD, Campbell DT. Experimental and quasiexperimental designs for generalized causal inference. Boston: Houghton Mifflin; 2002.
