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1 Second Life, People with Intellectual Disabilities, and the Mental Capacity Act Suzanne Conboy-Hill1, Valerie

Hall2, Dave Taylor3

In the UK, capacity to consent to medical procedures is judged (Mental Capacity Act 2005)to be decision-specific rather than linked to a diagnosis such as intellectual disability (ID).

The criteria include being able to take in, retain and weigh up the relevant information, then to communicate the decision at the required time. For many, information relying heavily on literacy, attention, or memory, is difficult to process, and so this needs to be more accessible.

Adults with ID – people with a level of intellectual function in the lowest 2.5% of the population – are cognitively compromised. They have, nevertheless, the same rights as all other adults and no one can legally consent on their behalf.

We observed that many disability groups are represented in Second Life, and that, as a medium, it is an engaging ‘lean forward’ experience, compared with video or TV which are passive, ‘lean back’ experiences. We anticipated that, if people with ID could make sense of the virtual world, the chances of incidental learning about material essential to a decision might be improved.

The Process We recruited 20 adults with ID from the Grace Eyre Foundation. At the same time, we developed an island with Imperial College London as a simulation of Brighton; including some familiar landmarks.

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Bird’s Eye view of the Brighton simulation

We also recruited six psychology graduate volunteers as research assistants (RAs to assist participants to explore the simulation and to help them visit all the key elements.

Exposure Sessions We used two off-the-peg avatars – one male and one female – and had a range of skins available to reflect participant ethnicity. We also had a wearable wheelchair for use by any participant who normally used one and who wanted to reflect this on screen.

3 We positioned two video cameras to capture participants’ facial expressions and contemporaneous on-screen and keyboard activity. We also recorded concurrent on-screen activity using a video scaler and recorder.

Researcher with participant seated at the display

Sessions began with the avatar facing the pier to enhance orientation, and each person was asked ‘Where do you think this is?’ Everyone identified the pier and that this was Brighton. Straight afterwards, the RA pointed to the avatar and said ‘This person is pretending to be you’, in the expectation that this would maximise the sense of presence by making a link between the participant and the SL environment.

Once engagement was established, we encouraged participants to use the four arrow keys to explore the simulation. We wanted to show that it could not be broken, and that it might be fun. We asked the RAs to be assertively directive but not controlling, and to guide participants through the simulation until they had completed the tour of the hospital. The first two elements – the seafront

4 and the Grace Eyre café – we hoped would provide a familiar environment in which to develop navigation skills.

View of Brighton pier & seafront

The Grace Eyre café area

5 For the hospital tour, there were five key areas we wanted people to see: 1. The waiting room where seating the avatar triggered a robot nurse who called the ‘patient’ into the assessment room.

The waiting room 2. The assessment room where participants could lie on a bed and activate a blood pressure device.

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Assessment room showing avatar wearing blood pressure cuff

7 3. The anaesthetic room.

The anaesthetic room 4. The operating theatre.

The operating theatre

8 5. A recovery room where clicking on a static patient delivered the on-screen text message saying ‘I am feeling better and ready to go home’.

The recovery room with robot patient

Participants could re-visit any of the rooms and interact with the contents at will, and then choose where they would like to leave their avatar to end the session.

Interviews A week later, we interviewed each participant using a modified version of the cognitive interview or CI, a technique that minimises interviewer contamination of interviewee recall. The CI is routinely used by UK police to gather best evidence from vulnerable witnesses and has been shown to improve recall by 23-63%. These interviews were audio recorded and later transcribed for analysis.

Outcomes

9 Qualitative data were entered into NVivo which allowed threads to be pulled out based on a set of questions (Framework Analysis). This included the interview data for cross referencing of actual experience with recall, looking too, for distortions of recall (material that was present but changed in the reporting), confabulations (material that grew out of but was not present in the experience), and introduced material (recall of linked information such as previous visits to hospital). There were six key findings: 1. Most people appeared actively to enjoy the experience, buying into the environment ‘as if’ it were real, but not treating it as reality per se. Only three people showed no obvious sign of enjoyment, but they also showed no sign of distress or disengagement, and stayed for their full session. 2. ‘Presence’ and acceptance of the virtual world as a temporary proxy was evidenced by: a. Actions: Trying to open doors and cupboards, asking what was behind things, identifying particular areas ‘That’s the café’, and asking if they could find their house. b. Jokes: ‘We’d better get out of here before the sharks get us!’ A participant who had gone into the sea and noticed the dolphins underwater. c. Identification with or concern for the avatar: ‘I’m walking on the pier’, ‘She’d better watch herself crossing that road’, ‘It’s cold out here’. (A participant who had said little about her in-world tour until her avatar fell out of a window). Referring to the avatar as ‘I’ or identifying with its needs seems remarkable, given the brief exposure time, the partial immersion (screen rather than headset), and the participants’ cognitive limitations. 3. People recalled much of what they had experienced, but some tried to report experiences they had not had, mostly in response to neutral image prompts. Others introduced material from past experiences of hospitals. Those who did not experience the entire simulation

10 were likely to respond to image prompts with confabulatory material, while those who had become passive seemed to enjoy the experience less and to be less engaged with it 4. Active engagement seemed to be linked to enjoyment. This is a crucial finding because it shows that the virtual world environment can be an enjoyable one for adults with ID. It also seems to evidence the ‘lean forward’ experience we hoped to offer. 5. We showed with this group how the experience allowed participants to introduce relevant material to which new information about a proposed medical procedure might be linked. Memories of prior encounters such as ‘That’s where the doctor puts his pictures’ (the x-ray screen), ‘I had my leg done there’ (about having a plaster cast applied), provide opportunities for exploring existing knowledge and using this to support new learning. 6. In our validation discussions with participants, people made remarks such as ‘Well, going into hospital and look around. They give you confidence and then you won’t be frightened when you do go in.’ which suggests that people valued the idea of preparation, and indicates that this environment may help to reduce anxiety about planned admissions.

Conclusions We believe this small study shows that virtual world technology is accessible to adults with ID, and that, with the right support, it can promote an enjoyable ‘lean forward’ engagement which may support incidental learning and maximise availability of relevant prior experience. We believe we also showed that partial immersion can give rise to functional identification and presence in this group of people.

An expanded account of the research can be found in the Journal of Medical Internet Research DecJan 2011/12.

11 This article presents independent research commissioned by the National Institute for Health Research (NIHR) under the i4i programme award number II-FS-0908-10011. The views expressed in this article are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health.

Affiliations
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Dr Suzanne Conboy-Hill, Sussex Partnership NHS Foundation Trust, university of Brighton Professor Val Hall, Director of the Centre for Health Research, University of Brighton. Dave Taylor, Programme Lead for Medical Media and Virtual Worlds, Imperial College London.

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