Tag: communication

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Background

Over the last thirty years Alternative and Augmentative Communication (AAC) has become more accepted within society [2, 4]. Although still not perfect, the advances in technology has produced a range of devices that now allow users to lead fuller lives. However, AAC users often have other challenges in life in addition to communication difficulties. Other medical conditions and symptoms of the underling cause of a limited ability to communicate through vocal tracts presents these users with yet another barrier. For example, limited mobility, physical impairments and pain are a few additional challenges face by those who use AAC.

With these additional challenges comes an increase in feelings of isolation, lack of motivation and a feeling of being useless [2, 6]. This can further reduce the AAC user's quality of life [6]. During these times support is sought from a range of sources. Humans are sociable and seek support from others. This is especially the case when the person is struggling emotionally or physically.  Although there has been evidence for the benefits of face-to-face support groups [2, 6], typically speaking AAC users are often unable to benefit from these sources of support. Their limited mobility, inability to express themselves fully in a group setting or the distance required to travel to support centres restricts these users from seeking the additional care they need in this format [2, 4, 6].

eHealth

With the growing field of digital health care, or eHealth [7], technology is presenting new ways or assisting users in the medical field [3]. eHealth is a low cost method of assisting users in a mixture of support, including online forums. Online forums and pages can be found on websites and social media sites which support those with various conditions. These have been found to compliment the formal care provided by the National Health services [2, 3, 4, 6, 8]. They, and other eHealth tools, encourage the user to self manage their condition through self-efficacy [3, 4, 6] and create a community who truly understand what they are experiencing reducing the sense of isolation [4, 6].

However, the AAC users are often excluded from the full benefits of these digital support tools because of a lack of consideration from the developers of their additional needs. In the case of websites, the forums are often very difficult for AAC users to traverse []. The Web Accessibility Initiative (WAI) [9] presents a set of guidelines to develop digital spaces that are inclusive. This solves some issues but focus more on the access of the information rather than the active participation of users in these support areas.

Research has demonstrated the benefits of a social community and its improved results compared to face-to-face groups [4, 6]. For an AAC user, ease of access from their home and textual based forms of communication are often easier. However, in order to try and navigate through the complex sites it is tiring and frustrating. This only strengthens the gap between the AAC user and the eHealth system.

User Centred Design

Bryen et al. [2] emphasise the need for web inclusivity and a new method of providing navigation support. When these assistive means are applied to support forums it presents an equal opportunity for AAC users to actively seek support from people in a similar position to themselves. Further research has proven the benefits to AAC users when systems are designed with them [1,6] as this helps ensure that their feedback creates a system that supports their needs, abilities and requirements.

User Centred Design is the methodology where the developers and designers focus on the end user’s needs during development. This involves participant meetings where requirements are acquired, the system is evaluated and feedback is given to the developers. Focus groups and interviews have been shown to aid in their process of understanding users, specifically AAC users [1,6, 8].  It highlights new areas perhaps unthought-of of by the developing team before which in turn creates a more functional tool [3, 4, 5, 8].

Discussion

eHealth can be largely beneficial to AAC users in supporting them in their daily management of the challenges that they face [4]. However, developers need to accommodate their additional needs in order to prevent a further exclusion from a support tool. Participant involvement is showing clear signs of improving eHealth tools for all users [1, 3 ,5, 6, 8] and can shape the design of the eHealth to be easier to access for AAC users.

In addition, improvements made to eHealth tools present another step towards better medical and emotional support [3, 4, 6]. The communication gap between medical staff and patients can be improved [3] and a more inclusive care plan given. It presents AAC users with more independence and a platform for self-management which has been shown to be beneficial to the coping process [4]. Sharing experiences and methods of managing daily challenges aids in improving the AAC user’s quality of life.

However, care must be taken when delivery a new tool. Thought must be given to the dexterity, knowledge and access needs of the users [3, 5, 8]. It is not simply enough to make an eHealth tool that is usable by those who are visually impaired. Other AAC users exist who use non-typical input devices, and who use a symbol based languages.

Conclusion

The WAI is a step forward in improving the accessibility but more usability consideration need to be considered when developing eHealth tools [4] especially those when developed on mobile devices [3, 4]. Developing systems which cater for those who have different needs widens the user group for a system and therefore the market value. If more user participation is involved in the development stages, eHealth can be used to bridge the communication and support gap between medical staff, carers and AAC users [2, 6]. This will have a positive effect on the quality of life [2, 3, 6] of an AAC user and generate a more robust support channel for a lower cost. However, this will only succeed if the users are involved through a participation driven development approach.

References

[1] Barratt A, Prior S, Waller A. Addressing Narrative Retrieval in Personal Narrative Systems. 15th Biennial Conference of the International Society for Alternative and Augmentative Communication (ISAAC), (Pittsburgh, PA, USA, July 28 - August 4, 2012).

[2] Bryen, J.N., Heake, G., Semenuk, A., and Segal, M., 2010, ‘Improving Web Access for Individuals who Rely on Augmentative and Alternative Communication’, Augmentative and Alternative Communication 2010, Volume 26, Issue 1, pp 21-29.

[3] Ellis, H.R, 2013, ‘Seizure Frequency Analysis Mobile Application: The Participatory Design of an Interface with and for Caregivers’, CHI EA '13 CHI '13 Extended Abstracts on Human Factors in Computing Systems, pp 2683-2688.

[4] Light, J. and McNaughton, D., 2012, ’The Changing Face of Augmentative and Alternative Communication: Past, Present, and Future Challenges’, Augmentative and Alternative Communication 2012, Volume 28, Issue 4, pp 197-204.

[5] Maloney, D. and Preece, J., 2005, ‘A Multilevel Analysis of Sociability, Usability, and Community Dynamics in an Online Health Community’, ACM Transactions on Computer-Human Interaction (TOCHI), Volume 12, Issue 2, pp 201 – 232.

[6] Moore SK, Guarino H, Acosta MC, Aronson ID, Marsch LA, Rosenblum A, Grabinski MJ, Turk DC, 2013, ‘Patients as Collaborators: Using Focus Groups and Feedback Sessions to Develop an Interactive, Web-Based Self-Management Intervention for Chronic Pain’, Pain Medicine 2013.

[7] Pagliari, C., Sloan, D., Gregor, P., Sullivan, F., Detmer, D., Kahan, J.P., Oortwijn, W., MacGillivray, S., 2005, ‘What Is eHealth (4): A Scoping Exercise to Map the Field’, Journal of Medical Internet Research 2005, Volume 7, Issue 1.

[8] Prior, S., Waller, A., Thilo, K., 2013, ‘Focus Groups as a Requirements Gathering Method with Adults with Severe Speech and Physical Impairments’, Journal Behaviour & Information Technology 2013, volume 32, Issue 8, pp 752-780.

[9] Web Accessibility Initiative (WAI). Available: http://www.w3.org/WAI/. (10th Nov 2013)

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Recently I found out that my submission for the ISAAC conference in Pittsburg this summer had been accepted. With this information a mixture of both excitement and nerves set in, I'd have a twenty minute slot in which to entertain a audience! Being only a second year undergraduate, this was my first submission to a conference  so a feeling of pride filled me as I read the acceptance letter. I have been working as a carer for nearly a year now and wrote the conference paper on what that job means to me. In my paper,What it means to be a carer, I discussed how my own presumptions - despite having two close relatives who are both mentally and physically disabled - were proven incorrect and how my interaction with the individuals have changed as I see the world from a different perspective.

Unlike many of my peers, I have been brought up around people who are struggling in life for a variety or reasons so would like to think that I am more open minded than some. Having grown up in a third world country, I have watched first hand, the suffering of the less fortunate that others have only seen on TV. I have watched my brother slowly deteriorate as he becomes more dependent on my mother for the most basic activities and I have watched as my aunt had her world tipped over when she had a car accident resulting in her becoming paralysed from the neck down. Basically, I'm not new to people suffering or struggling to do what I do so easily in my day-to-day life. Working as a carer, however, has made me see things slightly differently. Having to help Alan (the person I assist) to communicate with, quite frankly, this prejudiced society, has made me realise that communication is one of the most vital traits of being who we are. Our personalities are reflected in both our speech patterns and our voices, our accents a reflection of our past and our wording a reflection of how we feel. My aunt was fortunate enough to still have her full motor control, my brother however, has that but the inability to express himself. Alan, from birth, had limited motor skills and, frustratingly for him, the ability to fully express himself if he can get the right form of communication aid.

Although I wrote my paper as a way of creating a portfolio for myself, the main reason for me writing it was to raise awareness of the struggle that various people undergo. Writing from a carer's perspective helps to show people what the user themselves may not be able to express. As you can tell from my background, in some way or another, I have been caring for many years. Those who believe that people with disabilities do not deserve the same rights as the 'average' people disgust me. What I have seen from those I have been around, although it might take longer to complete a task or they might need some help, they are just as wonderfully creative and capable as the next person. From interesting questions to being a Paralympic swimmer to being a mother of two and helping to run a business, these people remind me why I shouldn't take things for granted in my life.

In July this year, I will be in Pittsburg presenting this paper and I hope that the audience leave with a new perspective about disabled people. I hope that they see a new person when they look at someone with a disability. Regardless of what life has thrown at us, if we want to achieve something in our lives, we are all capable of it! So wish me luck as I try and entertain a audience for twenty minutes, my longest ever solo presentation. I am a nervous public speaker and don't fare well in front of crowds, but I will be there voicing my view and trying to shine a different light on what society thinks they know about disabled  individuals.

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* Note: Names of AAC user have been changed for privacy

Abstract ( 103 of 150 words max)

My personal outlook on the role as a carer or support worker for a gentleman with Cerebral Palsy and limited motor skills is that it has been an enriching experience. Since we have been working together, I now view society in a different way and am more aware of its prejudices towards those with disabilities. I believe that my time spent with the gentleman has taught me how better to interact with someone with limited communication helping me to understand their daily struggles whilst, it is hoped, helping him to allow society to interact with him the same they would with anyone else.

 

Proposal (960 of 1000 words max)

As many students do, once I had settled into university I began looking for a part time job. Shortly, an offer came along that was perfect. A gentleman with Cerebral Palsy was looking for a part time carer to assist him during the week in social activities. My interest in society attracted me to this position but I was not prepared for what I would gain from it. Although initially nervous, I quickly realised that Harry (name changed), despite having different needs to myself, was no different. Having grown up with a intellectually disabled younger brother and a quadriplegic aunt, socialising with people with different needs to myself was something I was used to, however Harry’s needs were different .For the first time I would be socialising with someone who could not communicate in the standard way, something that made me wonder how I would possibly be able to communicate with him. That was when I first came across the world of AAC.

 

Alternative and Augmentative Communication (AAC) is the term given to any other means of communication besides oral communication. The range of devices is quite vast depending on the individual’s needs. Some of the devices can be rather high-tech but Harry’s main form of communication is a word-board. Despite how low-tech his ‘voice’ is, it gives Harry the freedom and independence he would not have had otherwise. Working as a carer for Harry, I have observed that having a potentially isolating disability does not have to result in being excluded from social interaction. From giving talks around the world, being a three time-Paralympic swimmer, making his own music and assisting research students to develop AAC technologies, Harry is an inspiration to many people, myself included.

 

When we are out, I have noticed that Harry and I get two main reactions from people. Either, I am looked to as an interpreter as Harry is ignored; or the person – with every good intention – over tries. Having grown-up with being treated differently, Harry often accepts it but I struggle with society’s attitude more. I must confess that at times, when unsure of how best to approach a disabled person without causing offense, I have let them pass in the shadows. Many people have been guilty of this at some point of their lives. Working with Harry has made me realise that the best way to approach someone with a disability is, for the most part, just converse with him or her as you would any other person. Being a carer means that I have the chance to help society see disabled people as they would any other person.

 

At the CAAC Conference in South Africa last year, an AAC user talked about the stigma attached to disabilities. His discussion on terms like ‘wheelchair bound’ was interesting, as I had never given much thought to them before. The terms often have a negative connotation that isolates the individual rather than embrace the freedom the item gives a user. The same gentleman, for example, told me off for talking too much and not letting him have a word in! Often I am reprimanded for this for but without his AAC device, the gentleman would not have had the opportunity to express his opinion. Therefore should we not call these devices empowering as opposed to restrictive? The conference showed me that AAC users are proud of their ‘voices’ and, regardless of the stigma attached to their disability, they would continue to strive towards becoming more of an integrated part of society.

 

Many people, upon observing the interaction between Harry and I, assume we have been working together for much longer than we have. The human ability to adjust and adapt has always been an interest to me and being a carer has shown me that when you want to achieve something, you can. I believe that Harry and I are able to hold a conversation with a normal conversational flow, something that I would never have thought possible in our first meeting. Often in life we walk by those who are different without taking the time to stop and listen, I’m not letting my work with Harry be one of them.

 

After the conference we visited Cape Town, South Africa, I am reminded of a steep path curling its way upwards to the sky at Cape Point. At the top of the hill was a lighthouse overlooking a point in the sea where ‘two oceans met’. Since our arrival in South Africa, we were told that if the day was right the view was amazing. Looking up at this hill we decided that it was too steep to use the wheelchair but how could I deny Harry the right to see something that an able bodied person was allowed to see? Unsure as to whether the walk would be too much for him, we started out on the half a mile walk. The walk was slow, my breathing heavy as I supported Harry.  Trudging on, we ignored the people overtaking us. Harry was determined to reach the top and why should he be denied that? Finally, a broadly grinning Harry reached the top. He had climbed his Mt. Everest. The never ending optimistic attitude that he expresses always amazes me and after only a year of working together, I think of Harry as a friend. Whatever title you attach to my position, be it carer, personal assistant or support worker is irrelevant. I have the fantastic chance to work with someone who sees the sun through the rain. To me, this is what it means to be a carer, getting the chance to learn from the person you are working with just as much as you are helping them to lead an independent life.

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With spending more time with Alan and working with the AAC research group at Dundee University has made me more aware of how society cowers away from 'different people' like the AAC users I work with. Disabled people are not a different species, just a different brand of people. Speaking to them is really no different to talking to your friend or colleague - there really is no art to it!

For those of you who really don't believe me, here's some easy steps to follow that may help you realise just how similar it is.

  • Step 1: If someone is with them, watch how they talk to the individual as it gives you an indication of understanding and langage level. If they speak in simple language terms, follow step and do the same and so on.
  • Step 2: If the person is using a device, be patient and give them time to talk. Talking too soon creates a monologue with yourself and you're excluding them from the conversation. Trust me, most individuals love to talk!
  • Step 3: Didn't hear or understand them the first time? No problem, most individuals don't mind repeating what they've said as they'd rather be included and repeat themselves than be excluded.
  • Step 4: Remember that having a disability can be frustrating and that most individuals want to be able to talk to you as anyone is society does so just relax and enjoy a quick (or long!) chat with them. You may even be surprised to find out that you have something in common!

 

It really is as simple as that. Go on, try it, even if you are just doing it to prove me wrong. You may be pleasantly surprised.

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Simply put, yes. Rather than focusing on the limitations put in place by the word ‘disability’ one should acknowledge the capabilities of the individual. At the CAAC Conference this week I listened to the heroic stories of people living with disabilities who were determined to lead full lives. From Paralympic swimmers to lecturers to students who were studying at college to ‘help give back’, there was no shortage of people who were achieving in their lives despite their disability.

Listening to the fascinating and awe inspiring stories from all the AAC users, I felt their sense of joy and accomplishment. With the AAC devices they were given a voice, a way to socialise and work within the demands of society. Some of the late teen/early adult speakers were of much interest to me as I could relate to their ages. That, however, was where the similarities ended. For these individuals every day was a challenge, a struggle to prove to the world that they can take part like the rest of us. Having grown up with an epileptic brother who also has other complications and an aunt who is paralysed from her neck down, I am used to watching people fight for independence in a world that insists that they won't cope but to hear of their obstacles is different. Rather than guessing the feeling of anguish, the AAC speakers explained their methods of dealing with their challenges.

One particular speaker's words stood out to me, after having a stroke and getting what is known as 'locked in syndrome' he was now a wheelchair user. His seminar was focused on the stigma attached to phrases that are associated with disabled individuals. I had never considered the negative connotations that phrases such as 'wheelchair bound' have such derogatory connotations but he talk addressed the restive force that is behind that phrase. Interestingly, this gentleman was working with researchers on the development of other AAC devices and was not allowing his disability to define his life. It's people like this that makes me want to go out and help these individuals to raise awareness of a life after their disability.

Although life may be tough and challenging, just because you are disabled does not mean that you are not entitled to a full life!

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As this was my first conference and I am still familiarising myself with Augmentative and Alternative Communication (AAC) and their devices I wasn’t quite sure what to expect from these three days. I was not to be disappointed…

Having recently decided that I wanted to undertake a career in research and the further development of AAC devices, I was over the moon when the opportunity arose for me to attend the conference as a PA for my client, Alan. Eager to learn more about the field that I had begun to lean towards as a future career opportunity, I couldn’t have asked for more from the conference.

Starting at nine am in the morning we would choose the seminars that most interested us during the day and continue this way until around five pm. The range of talks available to attend was wondrous, from professionals to AAC users to parents who had taken up roles within the Centre for Augmentative and Alternative Communication (CAAC) we were given a wide range of knowledge about AAC. By hearing from all the different groups one was able to gain a wide picture about the progress, internationally, on the development of devices for non- speakers or speakers of limited communication abilities. As a conference, the AAC users who gave us inspirational talks using their various communication devices spoilt us.

We listened to their stories of empowerment which illustrated that despite the boundaries put on their physical and communication abilities, these people had chosen to acknowledge the capabilities within their disability. They had overcome the limitations that society had imposed on them and found a way to lead full lives. From swimmers at the Paralympics Games to teens preparing to develop a support group for other disabled children to people who had gone on to gain University degrees and found new ways of improving the world for disabled people. As an able bodied person, I was left awestruck and inspired by these people who had overcome so much and were willing to share their stories and experiences with us.

Most of the professionals gave talks on the current research on going around the world, but one aspect in particular stood out to me. The majority of the professionals had no computer knowledge and didn’t appear to be building links with any ‘teckies’. As an undergraduate computing student myself, I thought this was a great disadvantage to the development of AAC devices. In a project as important and large as this, to bring a voice to everyone around the world, we need to work as a team. Experience from all sectors of the industry is essential to the success of AAC devices and not acknowledging this could be a critical downfall to the future of AAC. Without people to bring their personal experiences together with the technical background of the ‘teckies’ AAC devices will never reach their full potential.

In addition to the divided work pattern, I found that many people were focusing on the development of devices specifically for AAC users. This is the wrong approach, in my opinion, to take. Developing technology and software on mainstream technology that already exists allows for more inclusion into society for the user as they are welcomed as part of the crowd. Many users already feel the pain from society’s obnoxious exclusion due to their disability; they don’t want to stand out anymore with equipment that makes them even more ‘different’.

In a conversation today with a woman with Cerebral Palsy, we discussed how ‘society does not owe anyone anything regardless of their impairments’. This was an intriguing idea as it suggests that in order for us all to work in society we all have to give and take. Therefore shouldn’t users meet the able bodied half way and be allowed the chance to feel more included in society whilst still being allowed a voice in society. By allowing the user to feel included you provide a better chance at their happiness and ensure a greater unity amongst all people within society, regardless of their communication abilities. This point was briefly touched upon in the conclusion of the conference and I think will become a greater point of discussion in the coming future as people realise the limitations and excessive costs of AAC devices. Through the development of AAC software on mainstream technologies it allows more AAC users to gain a voice as that technology is more readily available and affordable thus increasing the chance of a greater unity within society.

Video link to Alan's talk: http://www.youtube.com/watch?v=xlHuDZrkzbg