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The colloquium took place at the gorgeous campus of the University of Reading in Reading. Its aim was to promote Women in Computing and a range of students attended to present poster abstracts in four categories. The categories were first year, second year, final year (which incorporated third years and fourth years) and MSc. My category had thirty people in it as it covered two year groups. Throughout the day we listened to inspiring talks from women in the field and in academia. The range of topics of the talks and posters was vast and very interesting. It was attended by university students, industry and academics.

Standing beside my poster
Standing beside my poster

My poster was about my final year project - Seizure Pad. My younger brother was diagnosed with a rare form of epilepsy when he was four years old. From then, I have helped care for him. As technology has advanced, my mother has tried multiple methods to assist in managing his seizures. However, none were suitable enough. I began to do some research and found that she was not alone. That’s where Seizure Pad comes in.

The rise in ubiquitous computing has seen advancements in eHealth. From health care applications to Internet based health monitoring systems, there is a range of eHealth tools available for patients. For those with epilepsy, eHealth provides digital diaries and analytical tools to monitor seizures. However, these tools do not support those with complex epilepsy. Good management of complex epilepsy requires carers to log and analyse data about frequent seizures. Current eHealth is limited because the lack of user involvement in the design and development of applications has failed to identify and support the communication of complex data between the patients and clinicians, which in turn leads to poor overall support and management.

Seizure Pad was developed as a result of an experience driven design study following a participatory approach. It has involved working closely with a range of clinicians, patients and other users to ensure an inclusive support tool for those with complex epilepsy. By identifying the types of data to be recorded and providing an intuitive user interface, it presents a new framework to assist in seizure management. Seizure Pad offers customised input fields, automatic data capture and a clear analysis of the data. This visualisation of data empowers the patients to be more independent and contribute to their healthcare.

Currently the study has developed a prototype, which is being tested by end-users. I am hoping to conduct further research which will involve a randomised clinical trial of Seizure Pad to further test its impact on the communication divide and self-efficacy of the user.

Collecting my prize from EMC
Collecting my prize from EMC

I was humbled to have won the finally year category at the BCSLovelace Colloquium 2014 as the projects I was presenting alongside were amazing. EMC gave me a very generous cash prize of £300 and I also received a goody bag which included, among other things, a furry Android, which has been stolen by my cat, Bitcoin! Although this is the fifth conference to attend and fourth to present at, I found it the most enjoyable. Whereas the other conferences were focused on a particular topic of research, this one was so varied. Everyone I spook to had a completely different focus and project to my own. It was exciting as I rarely get to talk to students out with my own class, and never do I get to talk to some many fascinating women. Also, one of my biggest fears about joining the IT industry is my lack of interest in the more technical side. However, this conference showed me that I have nothing to fear as the variety of exciting positions available is far greater than I had previously thought! I think the most valuable thing I took away with me was that life is about risks, sometimes they work out other times they don’t but it’s just about finding out what works for yourself. As all the brilliant speakers said, if one job doesn’t feel right, look at a different area within IT for we are part of an ever changing industry!

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I use my university VPN a lot for getting access to research papers but when I moved to Edinburgh I found that I couldn't access the VPN from our home network. Multiple calls to the support team - I use that term loosely! - and wasted time explaining my issues I still didn't succeed. So, I gave up and resorted to tethering my computer to my phone and accessing the VPN that way. However, my wonderful friend has better persuasion abilities than I do as she finally got a solution!

Instructions on getting access to your VPN:

  1. Navigate to 'http://192.168.0.1/VmLogin.asp'
  2. Login. The defaults are username='admin' and password='changeme'. Enter the details you changed it to if you changed it.
  3. Open the 'Advanced Settings' at the bottom right of the box.
  4. Access the 'Firewall' settings.
  5. In the section 'Pass Through', tick all three boxes. You may have to select the 'Firewall' check box first.
  6. Click 'Apply' at the bottom right.
  7. You can now access your VPN, clever you!

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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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A constant struggle between the two,
a brain leading forward and a heart  falling.
Monetarily a consensus, a still among the storm -
shortened in its life.
The brain wins again.

She stumbles away,
each step slower as doubt creeps up.
The heart a tortoise in the race,
slowly it catches up.
She turns, flaters -
a wrong decision or the weakness of the heart?

Cold darkness fills the night,
a deep void her only company.
The angel and demon argue -
will she obey her heart and fall again?

She lies awake, the hours dwindle,
watching the sky as it lightens the room.
The constant tick, each tock a reminder of memories together.
A longing to return sets in deep,
the logic is drowning but -
still fighting, she falls asleep.

© Heather R Ellis
February 2012

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Late last summer I began considering how best to tackle a challenge posed to me by my mother. A challenge to develop an app for my brother ( An aid in a diminishing world ). Due to university coursework restrictions and constraints, after my intial brainstorm back in August I have only just now been able to create a low-key prototype in the form of sketches. After working alongside my mother to create a set of requirements, I have now attempted to put those functions into a visual representation. Following a user-centred approach I will be working alongside my mother and other individuals to help develop this app into a useful aid for other carers of people like my brother ( The deterioration of an infantile ).

Homescreen of app
The main homescreen

As of yet I have not designed a homescreen and keeping with the process of user-centred design I have not begun coding until I am sure that what I am designing meets the needs of my mother, the 'client'. From the start I wanted this app to be a clean, simple to use application. Most of the users will be in situations similar to my mother and will be a carer 24/7. Any moment spared will not be spared updating the details of the app if it is a lengthly or confusing process. As a result, I have decided to try and make this a binary process as much as possible. By separating the 'Seizure' and 'Challenging Behaviour' logs I will be able to speed up the update process. As you can see on the homescreen here I have just a handful of buttons.

Adding a new seizure menu
Adding a new seizure menu

Likewise, the input variables when adding a new seizure or challenging behaviour incident should be clear and concise, representing only the main options that users will need. Wherever possible, drop-down options should be available to minimise time spent adding a new incident. Creating two colour schemes is hoped to help the user identify which section of the app they are currently in making them less likely to incorrectly add an incident. With regular feedback the user will be able to understand any errors or issues that may arise. It must be noted that some of my scrawled notes relating to buttons on screen are merely brainstorming ideas that I have included.

jTrack challenging behaviour graphs
Track challenging behaviour graphs

Finally, the main goal in designing this app is to allow to user to clearly identify the main seizures and their frequency. By providing a concise graph that shows the output of the data entered by the user, they are able to see the trends of various individual seizures against time or against the total number of seizures. It is thought that a line graph may work well but the meeting with my mother will confirm whether this is the ideal form of output.

Although I am fully aware that this app only acts as a method of creating graphs, something that any spreadsheet could do, having this app on a mobile platform will enable the user to have more accurate and up to date information at their fingertips. My mother has expressed a hope that this will help her to monitor my brother's level of seizure activity and challenging behaviour more efficiently. It is my hope that I am help make this a reality for her and others in her position.

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Up and down,

sky and dirt –

the journey does but leap.

 

From one to another I have but gone –

my stories are but untold.

Tears shed, skins changed,

a new adventure does begin.

 

Voices rise with each flaming cheek;

eyes leak as one will fall.

Strong against the human need,

I am but a weakling to their touch –

a gentle breath and I do but fall.

 

Again the confusion follows me,

their true love is not enough.

A decision must be made:

life alone, strong and true or

as a half and weak again?

 

I doubt my motives –

Can they be true? Sincere?

If I stay I worry it will be a lie –

the need for a companion and nothing more.

Confusion unfolds, temperatures rise.

Melding the bond, they try hard –

oblivious to my stolen snips again.

 

Perhaps one will appear,

whisk my breath and steal my life.

I do but deny this though –

to give over my half is to great a risk.

For now, I won’t give in.

 

I am my own,

alone and true.

 

            © Heather R Ellis

January 2012

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Nothing but an agreement –

an unsigned contract of mutual need.

Governed by a trickster,

signed by morons.

The human need of acceptance,

of companionship.

 

Outspoken claims against it,

cries of pain,

signs of our unified weakness.

 

Boldly holding two together –

a bond stronger than blood, sometimes.

Trouble in disguise, an allusion of paradise.

 

Many fall, some prevail –

adapting as humans do.

Evolution in the making.

Chemistry interwoven into DNA –

nothing but a chemical reaction.

 

Stories told, rumours heard, images shown –

there ain’t no place to hide.

Deep within us lies a craving,

some kill for it, others run.

There is no place for the shades of grey.

 

A decision made, the new chapter begins.

Flowers strewn upon the ground,

a puddle of ifs and buts.

 

Exposing us all eventually –

our shells revealed to all.

 

The great power triumphs again.

 

© Heather R Ellis

January 2012