Portable Telepresence & MND

People living with Motor Neurone Disease have limited social interaction, which can lead to loneliness and ultimately depression. In this paper we look at the co­ design of ParticiPod, a portable telepresence device and how it could be used to give users an immersive, participatory social experience.

Loneliness can be defined as the mismatch between the quantity and quality of social relationships that we have, and that we want [10]. The dual problems of social isolation and loneliness are becoming recognised as a major health and as social challenge, and a risk factor equivalent to obesity and smoking [6] [17].

For people living with Motor Neurone Disease (MND, also known as ALS - Amyotrophic Lateral Sclerosis), opportunities for social interaction are very limited. MND encompasses a group of progressive and life­ shortening diseases that affect the human brain and spinal cord, and thus how a person walks, talks, eats and breathes [18]. The world of a person with MND is likely confined to a single room an in an adapted home. Communication may be difficult and only possible through assistive technology. For family and friends who can't visit often, conversation will be particularly difficult as telephone or video chat may be a one-way conversation. An away-from-home visit will require complex logistics and a suitable environment. The lack of appropriate medical support make visits difficult, and social awkwardness can make them potentially disappointing [8].

My project collaborator and I looked at two specific aspects of relieving the feelings of loneliness in a person with MND. As a speech therapist my collaborator looked at improving a person's ability to communicate, and I looked at enabling them to have an immersive experience in a shared social activity.

Where direct person-to person speech is not possible, the feeling of being alone can still be reduced by an individual knowing that there are people in the world who care about them (referred to as "relatedness" one of the three innate psychological needs [12]). Video chat has been demonstrated in studies as an effective technology for connecting family and friends over a distance, but it's clearly less practical if one of them

has and MND-related speech impairment. However Neustaedter and Greenberg, building on work by Stafford's study of relationship maintenance suggested that participating in "shared activities" during a video chat, such as eating a meal or watching a television show together, creates a feeling of togetherness, even without an accompanying conversation [2] [9] [13].

The initial inspiration for the project was to co-design an assistive technology for socially isolated people living with MND, based on the success of the development of the "ParticiPod" concept, a portable telepresence device for families separated by distance

[1]. A handbag-sized device with a built-in 360 degree video camera would stream video via a Skype-like service to a user wearing a VR headset, so they could have an immersive "like being there" experience. ParticiPod was originally conceived to connect children with their family when they're apart. It takes the form­ factor of a Mr Potato Head toy, as anthropomorphism has been demonstrated to promote interaction [3] [16].

In this paper we look at the psychological consequences and social limitations of living with MND, and the health and well-being effects of social isolation and loneliness. We then present our study design, and our research participants, with a resultant thematical analysis of their interviews. Our goal is to have co­ designed an iteration of ParticiPod that addresses the user group's specific needs.

Due to the progressive physical limitations of a person living with MND, the ability to participate in social activities reduces, and this can lead to social withdrawal. Ever-increasing isolation from family, friends and the outside world is common. With drug treatments being developed that slow the progression of the disease, the effects of social isolation on the patient can worsen over time [11].

In a 1992 study by Evy McDonald for the ALS Patient Profile Project, 40% of participants living with MND reported that at a time when they are less able to get out of the house they now have fewer visitors. Even visits to supportive communities such as church congregations dropped by over a sixth in her cohort. This resulted in a disconnection from human contact to the extent that a visit to the doctor became a "social event". Most of the participants in McDonald's study felt that "their lives were devoid of leisure", and they didn't consider solo activities such as watching television as fun - their desire was to experience activities to distract them from their social disconnection and disease symptoms. However, even where social activities exist, and logistics permit, self-imposed isolation is often caused by patients feeling embarrassed by the condition of their body and the result is reluctance to appear in public [8].

Social isolation can itself have a detrimental effect on a person's physical and mental health. People who are

lonely are at a higher risk of the onset of their disability, and are more prone to depression [19]. It is important to note that loneliness is not the same as social isolation. In a crowded room, a person can be lonely, whilst not socially isolated, so simply exposing an individual to social events isn't enough to make them feel less lonely.

From this research it is likely that our participants will be in different stages of social withdrawn, and at differing stages of acceptance of their MND. We expect that they may have had to give up careers and will be adjusting to living at home, maybe even in a single room, with non-family carers. Self-consciousness and concern for their self-image can be expected, and may be a cause of their social withdrawal, which will conflict with their desire to have company. With our youngest participant being 40-50 there may be issues around using new and untried gadgets, although they may be using quite sophisticated assistive technology so could be quite accustomed to it. These issues will be explored in our interviewing of the participants, their family and carers, as well as healthcare professionals.

An informal, semi-structured interview in each user's home was planned, to gain the maximum input from each participant, and insight into their day-to-day life. We planned the interviews by first asking the participants about their life before the MND diagnosis, in order to gauge the impact the disease has had on them. We would then explore the current extent of each participants condition, limits it has placed on them, and their current abilities. Some of the participants were using assistive technology, so we

wanted to know what they use to get some insight in what works well for them, and what doesn't. We would then explore how MND has limited their social connection with their family, friends and community, and what specific communications technology they use. Finally, the participants and their partners would be introduced to ParticiPod.

Normally a co-design session would begin with an ethnographic approach, with researchers spending time with participants to better understand their lives, and allowing them to express their needs, rather than simply asking them to tweak a well-developed prototype [5]. We sought to mitigate this problem by showing the barest concept to the participants, so we introduced ParticiPod as "a portable webcam that is a caricature of the user". We showed them a Mr Potato Head toy and allowed them to completely re-ideate the entire concept from that starting point, untainted by the design developments of the original project.

An additional issue was that the technologies in ParticiPod - such as 360 degree video and VR headsets - are very current, and the user group older and less tech-savvy. As research by Lim suggested, when researching the design of ICT products for seniors, participants may not be aware of what is technically possible, limiting their ability to make design suggestions [7]. However we knew that each participant used video chat systems such as Skype, so we asked them to talk us through how they currently used that technology; what they like and don't like about it; what issues they could personally imagine having with it going forward; and how they thought the whole user experience could be improved. Eisma et al. discuss that older users can be introduced to new

technologies if it can be related to products they have prior experience of, and have a positive attitude towards [7]. So, we made use of the halo-effect of their positive experience of video chat to introduce them to something that could potentially be even more immersive for them. We then gave each participant a demonstration of a consumer VR headset (the lightweight Google Daydream [15]) with some pre­ recorded 360 degree video of the countryside, a train station, a person delivering a presentation, and a family in a living room watching television. We then asked the participants if they could envisage how this kind of technology could be combined with video chat to make it something they would enjoy. We could then break down their comments and concerns into actionable design suggestions.

There were two cohorts of participants in this study, giving different perspectives on the design and function of ParticiPod. First, we worked closely with three people living with MND, and their family and carers. Second, we presented the ParticiPod concept and some initial co-design iterations to an expert group at a conference, and sought their input and feedback

The participants in the study were existing clients of my collaborator. Each had a partner or friend who participated in the co-design sessions. They were:

• Anne, an ex-teacher age 40-50, who has no speech, and communicates with a head mouse­ controlled speech synthesis device. She requires 24-hour care and is dependent on a

variety of assistive technologies. She was accompanied by a 40-50 year old male friend.

• Beth, a 60-70 year old healthcare professional with moderate speech difficulties. She was accompanied by her 60-70 year old engineer husband.

• Colin, a 50-60 year old business professional, recently diagnosed with MND, and with mild speech difficulties. He was accompanied by his 50-60 year old medical professional wife.

All parties were given a release form to sign and informed of their right to terminate the interview at any time, and later withdraw consent if they wished. Each interview was audio recorded and subsequently transcribed. All procedures were agreed in advance by the UCL ethics panel.

The experts were from AAC London a group of professionals, stakeholders and families interested in Alternative and Augmentation Communication (AAC). This cornmunity aid people with speech issues to "add­ on"' to speech with sophisticated technologies such as speech synthesisers, or simpler tools and techniques such as using pictures and gestures [20]. At one of their study days attended by around 100 delegates I delivered a 20-minute presentation followed by 10 minutes of Q&A, and 20 feedback questionnaires were completed.

The three participant interviews raised several common themes, and in each case they enthusiastically offered solutions - both specific design ideas, and suggestions of how ParticiPod could be used in practice.

The main theme that ran through the interviews was around ParticiPod being in a social situation and being either ignored, or people considering having to interact with it a burden. Colin feared that people would be talking to his ParticiPod out of a sense of obligation. He suggested that he might want his ParticiPod embodiment to be time-limited in a group situation, "If I could say to my daughter, 'look, just for half an hour, when you go out with your mates, bring me along. I want to say hello...! won't bother you after half an hour." Likewise, he thought he would enjoy watching football on his big TV at home, but periodically "beaming in" via ParticiPod to the pub for the atmosphere and banter of his friends. For family gatherings, if he felt too tired, or though the experience would be too overwhelming for him to go in person, he could send his ParticiPod with the rest of the family to say hello and join in for as long as he was able. Anne was keen on ParticiPod being able to rotate and wave its arms at particular individuals to get their attention, and Beth suggested that she would like it to be able to whistle or shout "oi!".

The next key theme raised by all of the participants
was how they were being visually represented. Anne, being an ex-academic was concerned about being taken seriously and would prefer to have the option of a non­ comical facial expression. She suggested that ParticiPod should have a screen to show the users face, perhaps

using photo-manipulation software to make a variety of facial expressions from a pre-MND photograph she had approved of. Beth is a keen user of Skype with her young granddaughter and plays dressing up games with her. She loved the fact that Mr Potato Head had many accessories to personalise it, and she liked the idea of it using apps similar to that on social media where a user's face is morphed into animals, or items such as glasses and moustaches are motion-tracked onto faces. Colin wanted different facial expressions so his friends could see him laughing along to jokes and see he was having a good time, so would be enthused to interact with him. He also suggested that a next stage could be to move from a Mr Potato Head to a "Bobble Head", the collectible sports star figure with an over-sized head, popular in America. Colin's wife suggested they could be 3D printed to be caricatures of the users themselves.

Ann was concerned about having to physically transport the ParticiPod from location to location, or from family member to family member. All three suggested that although there could be a "mobile" ParticiPod, there could there be multiple devices placed with close family members or friends. Beth was keen to send one to family in Australia and give a specific "dressing up" one to her grandaughter, and Colin wanted to send one to all of his family and friends so he could "beam in and out" of their lives.

Simplicity of use was a given from all the participants, and also by their partners and carers, who added that

technical support would likely fall to them, and their technical knowledge might be low. There were many questions around the most basic issues of how it would switch on and off, how it would pair with the VR headset, how the moving arms and rotating base would be operated. This also led onto discussions about privacy, with concerns about when the device is switched on, if both parties have to consent to a connection, and the need for consent in public areas such as bars and restaurants.

The healthcare professionals at the AAC conference, with their broader experience of people living with communications difficulties and neuro-disabilities, saw the potential for ParticiPod with users with different conditions. With their wide experience of assistive technologies, they also highlighted potential problems both operational and regarding the etiquette of use.

It was felt that there could be issues around putting on and wearing a VR headset and headphones as a lot of carer support would be needed. Many users with neurodisabilities have vestibular problems, so motion sickness could be an issue. Also, with this user group eye-tracking would be required as a control system, and eye-tracking within a VR headset is still a new and relatively untried technology (eye-tracking being a technology well understood by AAV professionals, as it's used in many text-to-speech products).

On the operational side there were concerns about the ParticiPod being manhandled and moved around against the users will - akin to people grabbing a wheelchair and moving someone when that didn't ask

to be moved. Or, even worse, ParticiPod being switched off without permission. These issues touch upon agency which is well understood, but less so when it comes to human-robot interaction, a relatively new area of study with no strict protocols, but some serious discussion around the concept of abusing social and domestic robots [4] [14]. With the potential users of ParticiPod being particularly vulnerable this is an issue worthy of serious consideration.

Although there were many issues raised regarding the ParticiPod design, and how it would be used, there are three clear areas where further design collaboration could greatly improve the concept for the user group - how to give ParticiPod a greater physical presence in a space, how a user's face is presented, and issues around the etiquette of using and interacting with a ParticiPod.

It is clear that although useful to explain the concept of anthropomorphising the ParticiPod device to potential users, the caricature face of Mr Potato Head has raised several concerns about how users are portrayed, with a fear of them not being taken seriously. This presents the biggest design challenge. Several participants and AAC Conference attendees had suggested giving ParticiPod a screen for a face, so a future co-design workshop could be planned to consider what kind of images would appear on that screen - from a photograph of the user, to a photo-manipulated caricature. Also, we would need to decide what limited number of the myriad human expressions would be

required. This might result in a considerable amount of personalisation for every device, something worth building into the design from the beginning.

Regarding being ignored, there are many smaller design improvements that could give the user more agency. Moveable arms and waist would give ParticiPod a greater physical presence, and some pre-set movements, such as dance moves, could be pre­ programmed. Other moving parts, or accessories for getting attention could be added, as well as addition of sound effects, such as Beth's suggestion of a whistle. These ideas could also be workshopped with the participants.

On the issues of human-robot interaction, the solutions may not lie just in design enhancements, but more in protocols suggestions how ParticiPod is used in social situations. ParticiPod's very portability makes it suitable for being part of shared activities, be it Anne's friend taking it to a lecture, Beth watching her daughter and granddaughter baking, or Colin's daughter taking her Dad on a hike. The next stage of co-design could be considering best the writing of a set of best practice rules for such uses.

ParticiPod was very well received by the three interview participants and all were very keen to continue working on the project and volunteered to beta test any future iterations. The initial concept was deemed to be strong, but there were clear areas of improvement around the form factor and a desire for discussion about human­ robotic etiquette. As such, the concept of a portable, anthropomorphised telepresence device to improve the lives and wellbeing of socially isolated individuals seems to warrant further study.

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