Chapter 1: Introduction
The silence of speechlessness is never golden. We all need to communicate and connect with each other – not just in one way, but in as many ways as possible. It is a basic human need, a basic human right. And more than this, it is a basic human power …(B. Williams, 2000, p. 248).
The gentleman who spoke this quote is an AAC user. Communication enables us to to form friendships and relationships, allows us to express wants and needs, to increase our knowledge of the world around us. Communication is vital in every day life in the modern society we live in (Wood, 2014). We take our ability to communicate verbally for granted, however for some people, they have difficulties communicating verbally, and therefore use alternative methods to convey their message.
Communication Matters (2013) define Alternative Augmentative Communication (AAC) as being “a huge range of techniques which support or replace spoken communication.” AAC includes all form of communication with the exception of oral speech (Hollar, 2012), the modes ranges from high tech voice generating output devices, to more low tech methods such as gesture.
AAC is not limited to one client group, it can be useful for a range of clients who have significant communication difficulties (RCSLT, 2006). This means that it is no one stereotypical group in society who will be required to communicate with AAC users. However it is argued that those most likely to require AAC are those with, “cerebral palsy, autism, learning difficulties and developmental apraxia of speech” (RCSLT, 2006: 231).
AAC is becoming more and more popular and common. Vinson (2001) comments that whilst AAC used to be used as a last resort when all other avenues have not been successful, now it is becoming more socially acceptable and being used as a primary method of therapy to help those who have difficulty communicating verbally. This has led to an increase in the number of AAC users (Beukelman, 2012).
It is not possible to gain a figure of the number of people who use AAC in the U.K. due to the diverse range of people who use it (RCSLT, 2006). however it is estimated that 0.5% of the population, or 529 in every one hundred thousand people, would benefit from using AAC to aid their communication (Enderby et al., 2013). It is also estimated that 0.3%-0.6% of the school age population use AAC (Matas, Mathy-Laikko, Beukelman, & Legresley, 1985), however it is worth noting that this figure is now over 30 years old, so has most likely changed, however there is not a more recent estimated figure. Whilst the technology surrounding AAC is continually being improved and designed to allow more people with a range of difficulties to access it, but they are not easily available to those who would benefit from them (Enderby et al., 2013).
The aim of AAC it is argued,
AAC users everyday face challenges of a personal, social, educational, and vocational nature (Cohen and Light, 2000). LaPlante (1993) estimated that fewer than 25% of people who are “unable to speak” are employed, and this can
Those who use AAC, it is argued, experience reduced communication opportunities.
Social interaction opportunities are crucial for AAC users. It is hugely beneficial for AAC users to have practice at communicating in natural contexts to increase the social competence (Beukelman and Mirenda, 2005).
Not one single AAC mode fits one person, use different modes in different situations
The client needs to use their AAC in order for it to be successful, however Pape, Kim and Weiner (2002) found that people were reluctant to use their AAC deviced due to wht they believed to be a stigma surrounding the use of them. Johnson et al. (2006) found that the feeling of AAC systems not being socially acceptable led to an abandonment of them. Research has found that abandonment of AAC systems can be as high as 33% (Phillips and Zhao, 1993). In research carried out by Clark et al (2010) it was found that two thirds of school children who used AAC felt they were “uncool” and “boring” as well as feeling that they “did not fit their self-image”. However, as technology becomes more advanced and the social norm (Ulli-Beer, 2013), mobile technologies, such as tablets like iPad’s, do not have the same perceived social stigma associated with them, as they are much more socially acceptable (Kagohara et al, 2013).
Many people find the idea of interacting with AAC users, to be an intimidating one (Communication Matters, 2015). AAC users often have sociolinguistic difficulties (Cook and Hussey, 1995), along with discourse and conversation skills (McCormick et al. 2003).
McCormick et al. (2003) found that AAC users often have difficulty with conversation and discourse skills, as well as sociolinguistic difficulties (Cook and Hussey, 1995). This can, amongst other things, affect their ability to initiate conversation (Cook and Hussey, 1995). Therefore, it then becomes the responsibility of the prospective conversation partner to initiate conversation, in order to allow a communicative interaction to happen.
Social interaction is a vital in the development and maintenance of AAC users mental well-being. ctor Ballin and Balandin (2007) found that AAC users experienced reduced communication opportunities, and this can have a negative impact on the AAC user. AAC users, Blum et al (1991, cited in Cooper et al., 2009) argue, have greater difficulty accessing a range of social situations, and, as a result, can often suffer from loneliness. Interacting with peers, Beukelman and Mirenda (1992) found, was more important for children and adolescents, in regards to both their development and emotional well-being, but AAC users were subjected to reduced opportunities for peer interaction. This was investigated further by McCarthy, Light, & McNaughton (2002), who found that for AAC users there were increased barriers to meeting and maintaining friends. Decreased opportunities for social interaction can, the RCSLT (2006) comment, lead to a loss of identity, as well as increased depression and social isolation. This can then lead to a cycle, Pierce et al. (2013) found, as the initital social isolation can then lead to greater social isolation.
Keefe et al. (2007) found that AAC users wanted further research to be done into the ways public awareness can be raised and how attitudes can be improved regarding AAC. Whilst it is argued that this is not a traditional avenue of research, it is of equal importance (Keefe et al, 2007). This research aims to look at the general public’s attitudes towards interacting with an AAC user. This will provide a baseline in order for further research and projects to explore this further, or attempt to raise awareness or change these attitudes, if that is deemed appropriate.
Chapter 2: Methodology
2.1 Participants
Convenience sampling was used to select participants in this study. The questionnaire was shared online on social media sites, with a message explaining the research and asking people to complete it. It was ensured that the questionnaire was not available to the high number of Speech and Language therapy students the researcher was linked with on social media sites, as this may have biased the results. It was shared by a number of different people to increase the size and diversity of the population that it was available to. In total 119 people responded to the questionnaire, however only 76 of these completed the questions on AAC, so only these included in the data analysis.
2.2 Questionnaire
The internet was used to share the questionnaire as this would reduce the time and costs of carrying out the research, as it does not need to be printed out, posted or the data to be manually entered online. It also allowed the researcher to reach a broad range of people within a much shorter time frame than other methods, such as asking member of the general public in the street.
The questionnaire (Appendix A) asked for some basic demographic information about the respondents, this enabled the researcher to gain more of an insight into where future education of AAC could be targeted. Therefore, questions on age, gender and profession were asked. Whether or not the respondent had any previous experience of AAC was asked as this would enable the researcher to gain an insight as to whether experience would affect the likelihood of a member of the public initiating conversation with an AAC user.
The most common modes of AAC were used in the questions, Hurtigh and Downey (2008) and Dukes (2007) found these to be: Picture Exchange Communication System (PECS) Voice Generated Output Communication Aids, Makaton, British Sign Language, Communication Boards and pen and paper. However, Makaton and British Sign Language were not included in the questionnaire as these require the communication to have prior knowledge of the signs, therefore reducing the number of people who are able to communicate with them. These are all aided forms of AAC.
Both open and closed questions were used in the questionnaire to allow the researchers to both understand if a person would initiate conversation and the reasoning behind their answer. For the closed questions a Likert scale was used. This increases the reliability of the data collected compared to a yes or no answer (Madu, 2003), and also allows the respondent more choice in the degree to grade the responses to the questions. By using a mix of both quantitative and qualitative style questions it is argued, by Layder (2003) that it is more likely the researcher will keep the respondents interest in the questionnaire increasing the likelihood of them completing it.
Before each question on AAC a small paragraph was included about the mode of AAC. This was because the RCSLT (2009) argues that the public have a limited knowledge of modes of aided AAC, therefore it was important to make sure they understand what they are before answering the questions. As some of the modes of AAC are more complex and difficult to explain in a short paragraph a link to a video clip of someone using the mode of AAC was also included. This would enable people to have a greater understanding of what would be required of them if they were to initiate conversation with a user of that mode of AAC. A picture was also included to show a visual representation of the mode of AAC. The picture was of the AAC for all questions except the final question on voice generating output devices, instead this was a picture of Stephen Hawking using his voice output generating device, as the pilot identified that a picture of this mode of AAC did not aid understanding however people understood it more if Stephen Hawking was mentioned.
Before being shared with the public the questionnaire was piloted on three members of the public. This was to ensure that the wording used in the questions was appropriate and easily understood by those who do not have prior knowledge of modes of AAC.
2.3 Data Analysis
The Mann-Whitney was used to analyse the data in line with ordinal nature of the data. To compare the data where there were more than two variables the mean of the results was calculated to allow comparison across all variables.
For the qualitative data thematic analysis will be used. This will enable the researcher to identify the key themes in the reasons behind the degree to which members of the public are likely to initiate conversation.
Professions were categories into groups according to the ISCO-08 (Hoffmeyer-Zlotnik and Warner, 2013). This will enable the researchers to make comparisons across the professions to identify which are more or less likely to initiate conversation with aided AAC users. There extra categories were added, one for those still in education, whether that be in school or higher educational institutions, one for those that have retired, and those who are without employment.
2.4 Ethics
The researchers were granted favourable ethical approval for this study from the ethics council of the University of St Mark and St John.
All data was collected anonymously. This was especially important as some responses gathered, the respondents may feel, are not socially acceptable, so may not answer truthfully if they could be identified by their answers. A breach in the anonymity may cause damage to reputation and loss of employment amongst other things (Das et al., 2011).
All data will be kept in accordance with the Data Protection Act (1998) (The National Archives, 2015).
PECS Communication Board Writing Voice Generating Device
Total Mean Total Mean Total Mean Total Mean
Female 242 4.25 248 4.35 267 4.68 245 4.3
Male 73 3.84 76 4 88 4.63 79 4.16
No experience 245 4.08 254 4.23 281 4.68 251 4.18
Experience 70 4.11 70 4.11 74 4.35 73 4.39
18-25 120 4 125 4.17 139 4.63 120 4
26-35 68 4.25 69 4.31 74 4.63 70 4.38
36-45 47 4.7 48 4.8 50 5 48 4.8
46-55 39 3.9 40 4 44 4.4 39 3.9
56+ 41 4.1 42 4.2 48 4.8 47 4.7
Services and Sales 13 4.33 13 4.33 15 5 15 5
Managers 32 4 31 3.88 38 4.75 34 4.25
Craft Related Trade Workers 10 3.33 10 3.33 13 4.33 10 3.33
Professionals 159 4.18 164 4.32 178 4.68 164 432
Technicians and Associate Professionals 20 5 20 5 20 5 20 5
Unemployed 13 4.33 13 4.33 13 4.33 11 3.67
Retired 9 4.5 9 4.5 10 5 10 5
Skilled Agricultural Forestry and Fishery Workers 3 3 4 4 4 4 2 2
In education 44 4 45 4.09 50 4.55 43 3.91
TOTAL 315 4.14 324 4.26 355 4.67 324 4.26
Chapter 3: Results
Question Number Reasons behind people initiating conversation Reasons against people initiating conversation
1 Inclusivity
Equality
Interest in how the method works Lack of experience
Not knowing the individuals level of comprehension
2 Equality Lack of experience
3 Equality
Already use to communicate in day to day life
No limits on the content Takes longer than a typical conversation
4 Equality
Less need for interpretation
Similar to a typical conversation
Slower pace of conversation
Question 1 Question 2 Question 3 Question 4 Overall
W p-value W p-value W p-value W p-value W p-value
Experience 492 0.2809 482 0.3179 563.5 0.9588 515 0.475 7982.5 0.1083
Gender 392 0.05555 380.5 0.03612 501 0.5436 479.5 0.4773 10217 0.007635
Chapter 4: Data Analysis
4.1 Overall
The respondents to the survey indicated that they would be most likely to initiate conversation with a person who used writing as their method of communicating. The qualitative data showed that the main reasons for being more likely to initiate conversation was that they already had experience communicating with people using writing, and therefore would feel more comfortable using this as a method of communication. There were a number of reasons as to why they would feel more comfortable, one respondent commented that being familiar with the communication method would make “understanding people’s conversations would be easier”. Others stated that it would mean there was less ambiguity in what the AAC user was attempting to communicate, and that being familiar with the method meant they understood how it worked, which they did not for other forms of AAC.
People were least likely to initiate conversation with a person who used PECS to communicate. The main reasons people stated for feeling least comfortable initiating conversation with a PECS user was that they had a lack of experience of interacting with PECS user. They felt that they may either not be able to correctly interpret the respondents replies or may not understand how PECS works so would not initiate conversation for fear of “getting it wrong”. Respondents also commented that they would be hesitant to initiate conversation due to not having knowledge of the person’s level of understanding.
There were 165 ratings on the Likert scale of 5, where the person would definitely initiate conversation with an aided AAC user. There was only one rating of 1 in the responses. This was in response to question 4, asking about voice output generating devices. The respondent commented that the reasoning behind this was because they “struggle to hear voice equipment”. There were 10 responses of 2. A number of these displayed the need for education surrounding AAC. For example, one respondent commented that they probably wouldn’t initiate conversation as “Due to their not being able to speak, I would question whether they could hear or even want to be spoken to.” This shows that some people do not understand why AAC is used in some cases, and how education could possibly increase initiation of conversations with AAC users.
A main theme that ran through the answers of why people may not feel comfortable initiating conversation with AAC users was that they felt they lacked experience in communicating with AAC users, and therefore this made them apprehensive about initiating conversation. For communication boards and PECS, which are both based upon communication through pictures or symbols, respondents often commented upon the fact that they feared they would not be able to deduce what the AAC user was attempting to communicate.
“I might feel worried about misinterpreting what they wanted”
The theme of lack of experience was also seen in question 4, which asked about voice generating devices. Here the lack of experience meant that people were unsure of how exactly to initiate a conversation with the user. One respondent answered with 5 (would initiate conversation) to all previous questions, but answered only 3 to this question with the response “This is something I am not familiar with”. Another respondent answered that they would initiate conversation with a voice generating device user, as they had previously observed Mr Stephen Hawking using one, and so whilst they had not had personal experience interacting with a user, from the observational experience, they felt confident enough to initiate conversation.
Another main theme running throughout the answers was that whilst people may have some reservations about initiating conversation with AAC users, they would as they believed in inclusivity and equality. Many commented that everyone deserved the right to communicate and however a person communicated they still reserved the basic human right to communicate (Sen, 2015) and be included in society.
“I often initiate conversation by asking how people are, regardless of their communicative abilities or methods. Why should people that are different be excluded from conversation?”
However, Ross and Mirowsky (1984) found that often in surveys people feel the need to give socially-desirable responses to the questions. Often respondents will give the answer that will “save them face”, especially if they do not know the person conducting the survey. Whilst all respondents were informed of the anonymity of the data being collected, they may still have replied with answers (Ross and Mirowsky, 1984). This may be even more prevalent in those in caring professions, such as health care workers and education staff, where it is deemed even more socially unacceptable to not to be seen to be promoting equality.
4.2 Experience
Out of the 76 respondents to the survey, 215 had had previous experience of interacting with AAC users. Their level of experience ranged from communicating with one person in the past by writing messages down, to working with all forms of AAC used in this study through their job. There was no relationship observed around the respondent’s profession or age and their experience.
The data shows that there is a statistically significant difference between the responses of those who have had experience and those who have not had any previous experience of communicating with AAC users. The mean averages show that those with experience are more likely to initiate conversation with users of PECS and voice generating output devices, where as those without experience would be more likely to initiate conversation with people who use writing to communicate and those who use a communication board to communicate.
Those who have had experience of a range of forms of AAC, gave higher scores on the Likert scale, and those with more limited experience scored highly only the forms of AAC they had had experience of. One respondent explained that they had previously had experience of communicating with a user of a communication board. They stated that “Past experience in these means of communication would give me confidence” and scored it 5, where as they had not had experience of PECS and scored it 3 commenting “I would give it a try but lack confidence due to inexperience”.
This is in comparison to other respondents who had had experience of all modes of AAC, who stated that they would feel comfortable initiating conversation with users of all the modes of AAC included in the questionnaire.
One respondent with experience commented that when they first started communicating with AAC users they found it harder to communicate at first when they were unsure of how the AAC forms were used, but now they have gained experience they are able to “chat with ease.” This demonstrates how much of an impact experience of all different types of AAC is in increasing the communication opportunities for AAC users.
Those with experience appeared to show more awareness of the impact a person’s cognitive abilities may have on their ability to communicate, and that some AAC users may have receptive as well as expressive language difficulties (Odom et al., 2009). Respondents commented about both communication boards and PECS that it can be difficult to gain an understanding of their level of communicative abilities. One respondent commented that PECS may mean “difficult to gauge how much understanding someone that needs an aac has depending on the reason for it.” However, respondents who held these opinions, later stated that writing and voice generating output devices made understanding their communicative abilities easier. The same respondent as the quote above, commented on question 3 about writing:
“As this is a more used and understood system you have a much better understanding off the communication and also level of understanding of the person you are communicating with”
Beukelman and Mirenda (2005), argue that training those around an AAC user is important to help them understand how best to communicate with the AAC user, such as techniques like giving the AAC user sufficient time to formulate responses, as well as training to “demystify the AAC system” (Beukelman and Mirenda, 2005: 13)
4.3 Gender
Of the 76 respondents 19 were male. The results how that there is no statistically significant difference. This shows that there is no gender difference in whether or not a person would initiate conversation with AAC users.
4.4 Age
The age group who are most likely to initiate conversation with aided AAC users is 36-35. Across all four modes of AAC included in the questionnaire, this age group indicated that they were less likely than other age groups to initiate conversation. 56% of this age group had had a wide range previous experience of communicating with AAC users, which as discussed previously correlates to higher scores. This is the highest percentage of respondents with previous experience in an age category.
The age group 46-55 is least likely to initiate conversation with aided AAC users. Only 1 of the respondents in this age group had had previous experience in communicating with AAC users. However, all of the free response answers held no comments regarding why they would not initiate conversation, only positive comments.
However, age did reveal that certain age groups would benefit from education surrounding AAC. The 18-25 age group, whilst it was not the least likely to initiate conversation with aided AAC users, many respondents in this category gave comments as to their rating on the Likert scale, that suggested greater education could be given to this age group surrounding AAC.
“Due to their not being able to speak, I would question whether they could hear or even want to be spoken to.” Question 1 (PECS)
“Must be difficult to find all your cards and put them in order” Question 1 (PECS)
This shows that education is required to increase this age groups understanding of AAC, and why people may require AAC to communicate effectively with other people. Education may increase their opinions of initiating communication with aided AAC users.
4.5 Occupation
In the data six out of the ten categories in the ISCO-08 were represented. Clerical support workers, plant and machine operators and assemblers, elementary occupations and armed forces occupations were not represented. The largest category is professionals with 50% of all respondents. Skilled agricultural, forestry and fishery workers is the smallest category with only 1 respondent.
The category with the highest mean average of scores is technicians and associate professionals, all respondents in this category scored 5 for all responses. 50% of this category had had previous experience in communicating with AAC users. Their main reasoning behind initiating conversation is that they believe everyone is equal no matter how they communicate, so they should be treated as equals.
“Everyone is equal and should have the opportunity to be able to communicate in some form no matter what it is.”
The categories with the three highest percentages of those who had previously experienced communicating with AAC users, were the only categories to have a mean average of 5 on any individual question, showing once again a correlation between experience and whether an individual would feel comfortable initiating conversation with an aided AAC user.
Skilled agriculture was the category with the lowest mean averages on 3 of the 4 questions (question 2 on communication boards was the exception). However, this category was also the smallest category with only one respondent. Such a limited number of responses in this category means it is difficult to make any comments on the data trends. As well this respondent did not leave any rationale for their responses. More tokens would be needed to understand if this is a trend across the wider occupation, or if this person’s view differ greatly from other members of the occupation.
For question 3, on communication boards, the lowest mean average was for the category of craft and related trade workers. One respondent gave aa rating on the Likert scale of 3, however commented they would be apprehensive about initiating conversation due to the being unsure of the comprehension levels of the AAC user.
“It is quite difficult to know often wheather you are truly understanding each other unless you know the person.”
The occupational categories of: managers, craft and related trade workers, unemployed and skilled agricultural, forestry and fishery workers, contained no respondents who had had previous experience interacting with aided AAC users. However, due to the small number of respondents in some of these groups it is difficult to determine if there is a correlation between occupation and experience.
4.6 Conclusions
This study has highlighted that having experience of a form of AAC, means that a person is more likely to initiate conversation with an aided AAC user. However, if they don’t have experience of this particular form of AAC they are less likely to initiate conversation. Gender does not have a significant impact upon the likelihood of a person initiating conversation with an aided AAC user.
Due to the small scale of this research it was difficult to make conclusions about whether the occupations someone holds has an impact on their likelihood of initiating conversation with an aided AAC user. However, it does show that there is no correlation between occupational categories and experience of AAC.
Age did not appear to significantly impact on the likelihood of a person initiating conversation with an aided AAC user.
The main theme identified in why people would initiate conversation was equality, they would initiate conversation with an aided AAC user as they are the same as a person who is able to hold a conversation using voice. The main theme identified as to why people would not feel comfortable initiating conversation with an aided AAC user was lack of experience, as this could cause misunderstanding as to how the method worked, or how to interpret the responses.
Chapter 5: Limitations and Clinical Implications
5.1 Limitations
Due to the small scale of this research it has made it difficult to draw conclusions from the age and occupational categories, due to the large number of categories and therefore there being small numbers in some categories (reference doing small scale research).
Another limitation of the research is the fact that due to the questionnaire building platform the researchers used, they were unable to make answering the qualitative questions, meaning a reduced number of respondents gave their opinions on why they would or wouldn’t initiate conversation with aided AAC users. This reduced number of responses made it more difficult to fully understand the reasoning behind many of the respondent’s quantitative answers. Under half (47%) of quantitative answers also had a qualitative reasoning behind them, making it more difficult to draw conclusions from the data due to the limited amount. If the research was to carried out again it may be useful to conduct interviews or focus groups, to elicit more views and opinions on initiating conversation with AAC users. The discussion in a focus group may also show a greater range of factors as to why someone may or may not initiate conversation with aided AAC users. It would also allow researchers to clarify with the participants some of the more ambiguous comments made on the survey.
A limitation of internet research is that whilst it may allow research to be done in a quicker and more cost effective manner, some individuals are excluded from the research. Those who do not have internet access or social media accounts, are unable to complete the survey and are therefore excluded from taking part. It is estimated that only 33% of those over 75 had used the internet in 3 months (Office for National Statistics, 2015), excluding a large number of people, and a vital group of people from the research. In future the researchers will also make paper copies available to communities and individuals who may not have internet access or social media accounts.
A further limitation of the research is that all the video links provided to participants in order to aid their understanding of the mode of AAC showed effective and positive communicative interactions. The researchers were unable to find any videos of communication breakdowns involving aided AAC users. This means that the participants did not gain a true picture of conversation with aided AAC users, as they only saw it being used effectively, and did not see the other side where there may be communication breakdowns. REFERENCE. The videos were also of pre-planned communicative in interactions, so the AAC users already had what they wished to convey planned out, reducing the time it takes to formulate the message, and also meaning that a well-rehearsed and easily interpreted message is conveyed, which is not necessarily representative of a typical unplanned conversation with an aided AAC user. This may lead participants to not fully understand the demands involved in conversation with aided AAC users, therefore affecting the results of the research If the research was to be repeated, researchers should create the videos themselves, ensuring they truly reflect what a natural conversation with users of the different modes of AAC entails.
5.2 Clinical Implications
Cook and Hussey (1995) found that often AAC users have difficulty initiating conversation. This means that they rely on other to initiate conversation with them, in order to have social interactions. Ballin and Balandin (2007) found that a lack of social interaction has a negative impact on AAC users. This research has highlighted the reasons as to why people may not feel comfortable initiating conversation with aided AAC users, to provide them with opportunities to communication with different people. The reasons behind why people would not feel comfortable initiating conversation, can then be targeted by charities working to improve the experiences of AAC users, which would most likely then increase the number of people likely to initiate conversation with AAC users.
This research also shows where education around AAC should be centred. It demonstrates the age groups education should be targeted at. This will aid people not only to increase the number of people who would feel comfortable initiating conversation with AAC users, but also increase the understanding around AAC and its users.