An exploration of the value of computer-based virtual environments in the management of visible disfigurement

avatar face with disfigurementSummary

We asked three participants to inhabit an avatar in Second Life, first without and then with an overlay mimicking a facial burn. We reviewed comments about the virtual world, the impact of the scar, and responses to facial disfigurement questionnaires.

First published by Ether Books, October 2013.

 

Second Life

We used Second Life (SL), a widely accessible online virtual environment (VE) (Au, 2008), the utility of which has been described elsewhere (Hall, Conboy-Hill, and Taylor 2011). The validity of VEs to model human behaviour is underpinned by extensive research by Bailenson and his team (see  Blascovich & Bailenson, 2011). We felt the environment would be suitable for this study because it would balance field versus laboratory (control v realism) issues, and eliminate the need to recruit people with facial disfigurement (FD) or ask participants to wear a prosthetic.

 

Presence

‘Presence’ is an important VE concept reflecting a user’s sense of being in a VE. The Proteus Effect (Yee & Bailenson, 2007) is a phenomenon whereby changes to a user’s avatar impacts on both in-world and real life behaviours. This impact is described as transformational and underpins much of the theoretical and empirical structures informing VE research. For VEs to be effective as a clinical or research tools, ‘presence’ and transformational capability seem essential.

 

 

Disfigurement

The experience of disfigurement is generally negative, and so people tend to avoid social situations (Kent 2000). Hence, there is likely to be a demand for interventions and support online for socially or geographically isolated people but FaceIT, (Bessell, Clarke, Harcourt, Moss & Rumsey, 2010) is the only one currently available.

Virtual reality is increasingly being used for a variety of other psychological difficulties (Parsons & Mitchell 2002; Parsons, Leonard & Mitchell 2006; Price and Anderson 2006; Inan 2008). This study is a small scale exploration of the feasibility of a VE for FD research and support.

 

Design

In a case study design, we asked three people without FD to use SL with a facial burn attached to their avatar. We explored a priori themes via semi-structured interviews based on existing research on VE immersion and disfigurement. These were:

  • Identification with the avatar and SL ‘presence’ prior to the FD being attached.
  • Participants’ reactions to the change to their avatar’s face
  • Social interactions in SL before and after the FD is attached.

 

Method

Participants

The three participants (2 male: P1 & P3; 1 female: P2) were aged 22-23, and had no visible disfigurement in real life. Two were Sussex University students, whilst the third was in full time employment. They were paid £15 on completion of two separate one hour sessions.

 

Materials

The latest version of Second Life Viewer was installed on a desktop computer that had a broadband internet connection and an ATI Radeon HD 4800 graphics card installed. There was an on-screen inventory that permitted a guided exploration of options available to participants in SL. The sessions where the FD was attached began in a VE area that was sparsely populated.

 

We used a generic, customisable avatar that could appear as either gender, and dressed it in the wardrobe described by SL as ‘student’. It was labelled ‘RD1’.

 

The FD was a bitmap representing a radiation burn which earlier feedback had suggested was realistic. It could be applied easily by the researcher (Corrie Neilson – CN) by clicking on it in the avatar’s inventory.

 

Interviews were recorded on a digital voice recorder, and notes made as a contemporaneous record of people’s responses. After the second session, we asked participants to complete a Body Image Coping Strategies Inventory (BICSI – Cash 2005) which measures cognitive and behavioural coping strategies adopted by people to deal with body image challenges.

 

Measures

These were the 29 items of the BICSI. They identify three main coping styles: appearance fixing, positive personal acceptance, and avoidance. We adapted the wording to reflect the hypothetical nature of the questions so that “what do you do?” became “what would you do?”.

 

Procedure

The sessions were designed to facilitate open discussion in a semi-structured context. Prior to each first session, we modified the gender of the avatar to mirror that of the participant, although they could change this if they wished.

 

Session One

The main focus of this session was familiarisation with SL. Participants could explore the VE with guidance (CN), e.g. editing the look of their avatar and navigating the interface. During this session, participants were asked about their impressions of SL through an ongoing semi-structured interview.

 

Session Two

Where possible, we edited each avatar to look as it had at the end of each participant’s first session. If the interval between sessions exceeded two days, we gave people a little time to re-acquaint themselves with SL.

 

Once re-familiarised, participants left the room while we attached the FD. They had not been aware that a disfiguring scar would be attached and so now saw it for the first time. We said they could remove the burn if they wished, and explored participants’ reactions to the disfigurement over the remaining hour. They completed the BICSI at the end of the session and left after debriefing.

 

Results

The interviews were transcribed verbatim, and analysed by two separate researchers, using Pope, Ziebland & Mays (2000) method of Framework Analysis. Focus was on the content in accordance with the previously identified a priori themes.

 

Identification with the avatar and ‘presence’

The experience of the virtual environment differed for each participant. P1 and P3’s perceptions of their real life identity influenced their avatar editing choices. P1 wanted to create an avatar that mirrored his real life look, spending twenty minutes choosing an outfit that he “might realistically wear”, and adjusting the hair to mirror his own. He joked about how “picky” he was being, but continued to adjust the appearance before he was happy to use SL for anything else. He then gave his own name to the modified avatar, and addressed it by that name throughout session one. When asked about his choices, P1 said that he would feel more “comfortable and honest” with an avatar that looked like him. Following this, P1’s immersion within the virtual environment was apparent when RD1 was left momentarily naked in front of others. He responded with embarrassment and announced “This has new player written all over it”.

 

In contrast, P3 removed all traces of an appearance that might reflect his own – “I hate things that look like me”. He concluded that the modified avatar was “who I wanna be”. P3 edited the face by attaching a beard but kept the everything else as before. On observation, the modified avatar seemed to look like P3, plus the beard.

 

P2 spent least time modifying the avatar. She kept the shape and facial features, but changed the outfit. Her first comment  was that “she doesn’t look like a student”, referring to the outfit provided by SL. She then spent time changing the clothes to ones she said she “wouldn’t wear in real life” but she felt “alright” about. She made frequent remarks about how “fake” the VE felt.

 

Social Interactions and other avatars

Participants responded differently to SL’s social opportunities. P1 was relatively at ease, engaging in local and private chat with other avatars. He was confident in his ability to be socially attractive to other residents, and commented about getting “a second life girlfriend”.

 

P2 and P3 were less confident and approached social interactions by reading ongoing public chats amongst the other SL residents, P2 commenting that “they say stupid things”. She questioned whether people form friendships in-world and talk about “controversial issues…like politics”. She observed others but did not initiate any conversations.

 

P3 did initiate conversations, but spent time choosing the most appropriate avatar with whom to engage, basing suitability on screen name and overall appearance. P3 seemed anxious in-world and uncertain in his real life behaviours. He said that if there was no response from people he approached in-world, he would feel “rejected”. He demonstrated this by walking his avatar into the sea when he “couldn’t handle” an ongoing conversation.

 

All three participants wanted to authenticate the identity of the other SL residents, and both P1 and P3 commented on their assumptions about the real life identity of “sexy” (P1) or “scantily clad” (P3) female avatars. They were both adamant that these avatars were likely owned, in real life, by a “bloke” (P1) or “some weird guy” (P3). They also both said that those avatars who appeared “normal” (P1) were more likely to reflect the look of the corresponding user. P2 reserved judgement and reflected instead on whether other avatars were controlled by “real people”.

 

Reaction to the FD

All three participants agreed to use SL with the FD attached to their avatar. Both P1 and P3 said that, knowing they could remove it lessened any social anxieties they might have felt. P1 commented that he was “using [RD1] for the sake of an experiment” and would not “choose” to put the burn on his own avatar. P3 similarly commented that “these characters can be changed and that’s the key point for me”. P2 on the other hand, showed little response to the scar because “it’s not me”, and so a facial scar in SL “wouldn’t really matter”. This reflected her behaviours in session one, in which she spent least time modifying the avatar, and said she felt the environment was “fake”.

 

All three participants now identified less with the avatar they were using. Both P1 and P3 distanced themselves from any previous ownership; P1 referred to the avatar as “RD1”, rather than his own name and also said that “…yesterday I saw him as being this kind of smart cool guy, whereas now I feel sorry for him”. Similarly, in response to seeing the scar again, P3 laughed saying “I’ll admit I kind of want to take it off”. However, none of the participants did actually ask to remove the scar.

 

The participants’ social behaviours in-world with the FD did not differ from their first session. P1 continued to engage in the social element of SL to “see how my new face reacts”. His behaviours though, seemed confrontational and an attempt to get a reaction from other residents – “I just want someone to proactively ask me about it” – and he was disappointed when this did not occur. As a result, he asked people whether they noticed anything “wrong” with his appearance. He received friendly comments that the look was original. Both P2 and P3 avoided social interactions for the same reasons as before, saying they had nothing to talk about.

 

Results of the BICSI

The three participants identified different real life coping behaviours they felt they would adopt.  P1 predicted he would follow a positive rational acceptance style (mean score 1.81) if living with disfigurement. Whereas P2 speculated that she would adopt an appearance fixing approach (mean score 1.9) and P3 would adopt more avoidant coping behaviours (mean score 2.13). These were not consistent with the behaviours they adopted in-world when using the disfigured avatar, as no participant removed the scar or tried to fix the avatar’s appearance once the scar was attached.

 

Discussion

‘Presence’ without FD

Evidence of virtual presence prior to attaching the facial scar was apparent in the social and appearance adjusting behaviours of the participants. All modified  RD1 early in the initial session to illustrate their personal preferences. For one, this included claiming ownership by giving the avatar his own name.

 

At times, each participant showed emotional investment in the social content of the virtual environment. Specifically, feelings of rejection, embarrassment or social anxiety were reported by all, which resulted in one participant avoiding any virtual conversations. P2, whilst ostensibly maintaining a social distance, was nevertheless concerned about what her avatar ‘felt’ or ‘wanted’.

 

‘Presence’ with FD

Following the attachment of the FD, two participants re-defined their virtual identity and used the on-screen name for the avatar. This distancing seemed to highlight their changed perceptions, and led one participant to adopt a more confrontational stance towards other SL residents.

 

The behaviour of one participant in particular seemed avoidant following the attachment of the FD. He referred to the avatar as RD1, whereas previously he had given it his own name. Two participants expressed sympathy for the avatar, where they had previously felt a sense of personal affinity. This reflects earlier research detailing avoidant coping behaviours of people with visible disfigurement (Kent 2000).

 

Transformational potential

We found differences among the coping styles identified by participants’ responses on the BICSI and their behaviours in-world. One participant’s scores favoured appearance fixing behaviours, and yet these behaviours were not demonstrated in-world. The two participants who said they would not attach such a feature out of choice, did not identify appearance fixing as their preferred coping. The discrepancies between the BICSI scores and behaviours in-world suggest future research directions evaluating the longstanding problem of divergent expressed and reported attitudes (e.g. Gahagan, 1980).

 

Conclusion

We explored the use of SL for FD research, looking for evidence of ‘presence’ in the VE to support validity of experience. We believe this was demonstrated sufficiently to justify further focus on VEs for clinical research. There was also indication of inconsistency between attitudes expressed and corresponding behaviours, which promises better clinical evaluation of this confounding factor in effecting change.

 

References

Au, W. J. (2008). Notes from the new world: The making of second life. New York, NY:  Harper Collins Publishers, pp IX – X and 252.  

Bessell, A., Clarke, A., Harcourt, D., Moss, T. P. & Rumsey, N. (2010). Incorporating user perspectives in the design of an online intervention tool for people with visible differences: Face IT.  Behavioural and Cognitive Psychotherapy, 38, 577-596.

Blascovich, J. & Bailenson, J .(2011). Avatars, eternal life, new worlds and the dawn of the virtual revolution: Infinite reality. New York, NY: HarperCollins Publishers, pp 102- 115.

Cash, T. F. (2005). Manual for the body image coping strategies inventory, purchased from http://www.body-images.com/assessments/bicsi.html  (29/10/2010 at 16.17).

Gahagan, D. (1980). Attitudes. In: Radford, J. and Govier, E. A Textbook of Psychology, Ch 27. Sheldon Press.

Hall, V., Conboy-Hill, S. & Taylor, D (2011). Using virtual reality to provide health care information to people with learning disabilities: acceptability, usability, & potential utility The Journal of Medical Internet Research, 13 (4) e109. http://www.jmir.org/2011/4/e91/

Inan, F. (2008). Virtual reality and social phobia: Recreating a social situation in virtual reality. Unpublished Masters, Delft University of Technology.

Kent, G. (2000). Understanding experiences of people with disfigurement: An integration of four models of social and psychological functioning. Psychology, Health and Medicine, 5, 117-129.

Parsons, S. & Mitchell, P. (2002). The potential of virtual reality in social skills training for people with autistic spectrum disorders. Journal of Intellectual Disability Research, 46, 430-443.

Parsons, S., Leonard, A. & Mitchell, P. (2006). Virtual environments for social skills training: Comments from two adolescents with autistic spectrum disorder. Computers & Education, 47, 186-206.

Pope, C., Ziebland, S. & Mays, N. (2000). Qualitative research in healthcare: Analysing qualitative data. British Medical Journal, 320, 114-116.

Price, M. & Anderson, P. (2006). The role of presence in virtual reality exposure therapy. Journal of Anxiety Disorders, 21, 742-751.

Yee, N. & Bailenson, J. (2007). The Proteus effect: The effect of transformed self-representation on behaviour. Human Communication Research, 33, 271-290.

 

2499 words

Acknowledgments

This work was completed as part of the first author’s MSc in Foundations of Clinical Psychology and Mental Health with the university of Sussex. We would like to thank Dr Kate Cavanagh for her support throughout.

 

Affiliations

Corrie Neilson: 33 Handsworth Avenue, London. Email: corrie.neilson@gmail.com

Suzanne Conboy-Hill: Consultant Psychologist, Sussex Partnership NHS Foundation Trust, & Visiting Clinical Research Fellow, University of Brighton.

 

Facial Disfigurement: a study using the virtual world, Second Life

Facial scar on avatar

We found differences among the coping styles identified by participants’ responses on the BICSI and their behaviours in-world. … The discrepancies between the BICSI scores and behaviours in-world suggest future research directions evaluating the longstanding problem of divergent expressed and reported attitudes.

 

This is a first for Ether Books: ‘Facial Disfigurement in Second Life‘ is a research paper detailing a study in which participants responded to the application of a facial scar to their avatar. A free download for smartphones. http://catalog.etherbooks.com/Products/3014

 

West Sussex Broadband – getting better connected

English: Broadwater, Worthing, West Sussex, En...

Image via Wikipedia

Well, you would expect me to support a campaign for improved connectivity, wouldn’t you? If you’re here, then the chances are you feel the same so just hit the link – West Sussex -Better connected – and register. No need to read any further.

But what if you stumbled here, lured by a twitter announcement, or a subscription to the blog, or a search for information about Alex Polizzi’s legs (yes, really)? Read on:

West Sussex is a very rural community, more reliant on personal transport and telecommunications for its business and social activities than urban areas. By 2016, it will have a population of over 800,000, of which most will be in education, employment, delivering or receiving services, making or consuming goods, and taking advantage of the expanding worldwide community of resources available via the internet. Nearly 19,000 will be over 60 years of age – a group that is increasingly using digital media and communications to keep in contact with families living or travelling away from the locality. This development is unlikely to slow down as the Baby Boomers – those born between 1946 and 1964 – hit retirement and bring their experimental, exploratory, ‘never-say-die’ approach and disposable income into this new phase of their lives.

Businesses are becoming increasingly dependent on internet access for their publicity and service delivery. And that’s not just the small outlets, seeking expanding markets for their local products, it’s much larger concerns such as health Trusts whose re-thinking of care and use of resources is likely to rely on connectivity for their mobile clinicians, and who will be looking to employ assistive technologies in people’s homes to maximise independence and dignity. If you think Twitter is for the facile, chattering masses, take a look at Time to Change (@timetochange), Bowel Cancer UK (@Bowel_Cancer_UK), or Age UK (@age_uk) to see what messages they’re putting out to their followers. Sussex Partnership’s chief executive, Lisa Rodrigues, (@lisasaysthis) tweets regularly on mental health (and Brighton & Hove Albion and sometimes cats!), understanding the importance of conversation and accessibility in today’s service delivery model.

Connectivity will be essential to all of us in the future.

  • Keeping business in contact with customers and resources,
  • Keeping services in touch with their populations and enabling a faster and more targeted delivery,
  • Keeping older people in social contact with friends and family, helping those house bound by caring duties or disabilities to work, have a social outlet, gain qualifications if they want them,
  • Giving us all the opportunity to access world-wide resources for our entertainment, development, and even survival.

As other parts of the UK gear up to faster broadband, downloading films in minutes instead of hours, or zipping along with Skype while playing music and sharing pictures, we will be falling behind if we do not take this step. Remember dial-up? Remember going off to make dinner and eat it while your anti-virus definitions were downloaded? This next upgrade will make today’s speeds look like that other world. Go and register to support better broadband in the interests of health, security, combating of social isolation, business competitiveness, and just plain old getting your shopping delivered.

Need more? Did you know that:

  • Twitter was the key communication method during the Sri Lankan tsunami of 2004, and that you can access bulletins about tsunamis via @tsunamiwatch – a direct feed from the Pacific Coast Tsunami Warning Centre?
  • Over 800 million people use Face Book worldwide?
  • Over 23 million people have accounts in the virtual world, Second Life, and around 43,000 are logged in at any one time? Virtual Ability is a specialist resource in Second Life for people with disabilities.
  • Amazon reports that, for the first time, their sales of eBooks are outstripping sales of print books. Now you can carry your whole library in your hand wherever you go. Just don’t read in the bath, is all.
  • You can watch innovative talks by top scientists, artists, musicians, philosophers via TEDtalks (@tedtalks) as well as loopy videos featuring cats
  • And you can report holes in your road, chase up your MP (Nick Herbert is on Facebook), find out what the heck the police helicopter (@SEASU_copters) is doing hanging over your garden, and send appeasing emoticons 🙂 to your neighbour in advance of grovelling in person about your dog chewing up their fence.

Register. Now. Do it.

Spirit of Enquiry conference, 2011

Spirit of Enquiry flyer imageI am very sorry to report that this conference has been cancelled. This is due to low levels of registration which, in turn, seem likely to be due to our lack of publicity at a key time (I was away and unable to expedite this – see link), and current pressures on clinical staff to meet necessary targets. The Trust is working hard to deliver complex services to a population of around 1.5 million people, and the present climate is not an easy one within which to operate flexibly. Front-line staff probably feel this more than any of us.

Hopefully, we will be back next year. Two guaranteed invitations to present will go to successful submissions from Jo Lee and Corrie Neilson. Jo is a senior physiotherapist with the Brighton & Hove Learning Disability team. Her paper, titled Passive Therapeutic Standing in the Neurologically Impaired Population, is a part of her Master’s dissertation with the University of Brighton, for which she earned a Distinction. Corrie’s paper,  An exploration into Second Life use with a Facially Disfigured Avatar, describes the research component of her Master’s in Foundations of Clinical Psychology & Mental Health from the University of Sussex, for which she too received a Distinction. Corrie has been a volunteer with Trust learning disability services and a care worker for adults with challenging behaviour in community services. She hopes to undertake Doctoral training in clinical psychology.

These are high quality pieces of work delivered by professional/aspirational clinicians at an early stage in their experience as researchers. The future of NHS innovation would seem to be in good hands.

Using Virtual Reality to Provide Health Care Information to People With Intellectual Disabilities

Demo of BP equipment

SL demo of BP equipment

It can take a long time to translate the uphill trek of the funding application into the enervating research you set out to do And afterwards, there seems to be an even longer trail towards placing an academic report of that work in a suitable publication.  The Journal of Medical Internet Research (JMIR) is about as appropriate a positioning as we could have hoped for, with its focus on best use of technology in the interests of health. As you might expect, JMIR does not confine its publication to dry text, and so there are images drawn from the study, and even a video tour of the virtual environment. We are very pleased to be included.

Hall, V., Conboy-Hill, S., Taylor, D. Using Virtual Reality to Provide Health Care Information to People With Intellectual Disabilities: Acceptability, Usability, and Potential Utility. Journal of Medical Internet Research, Vol 13, No 4 2011. Oct-Dec. http://www.jmir.org/2011/4/e91/  

Val Hall – university of Brighton

Dave Taylor – Imperial College London

Suzanne Conboy-Hill – Sussex Partnership NHS Foundation Trust & university of Brighton

Wired for Health

This post was due up last week, then the news about Samantha Backler came through. She deserved her time in the spotlight.

On March 17th, an extraordinary event took place at the Lighthouse in Brighton’s North Laines. The R&D department at Sussex Partnership has been developing ideas for projects – research and clinical practice – that seeks digital solutions to health care problems. Second Life is already a research environment for some of us, and more projects are either underway or at the work-up stage. We are also keen to capitalise on social media for communication with staff and service users, and to make use of apps for community support. For clinicians, the ideas come from practice. We can see the problems up close and we know what we need to do to address them We’re not that tech savvy though. We are not developers or designers. On the other hand, the tech savvy digital community doesn’t necessarily know what kinds of products we need, or how to access a user group to trial prototypes. From a very understated meeting with Phil Jones of Wired Sussex at which we speculated about a meeting of clinicians, academics, and entrepreneurial developers, came Wired for Health. Phil took that basic idea and produced an event that exceeded all expectations. No, I’m not going to be cool about it, this was very very exciting! Chaired by John Worth (Worth Digital)and Lynn Smith (NHS South East Coast), presentations from the health and business communities preceded a superb networking session from which we pretty much had to be evicted as no one wanted to stop talking when time was up. We heard from Sarah Pearson (Health Psychologist), about the difference between what people say they do and what they actually do (e.g. belieiving they watch very little live TV and, in fact, watching over 60% live TV), which has implications for self report about health issues. We also heard from Ribot, a small company that has developed a phone app to assist people with dexterity problems (the Threedom phone). In fact, this was the occasion of its formal launch, so the glasses of wine that were waiting upstairs could easily have been deployed ahead of time for a rollicking good crack over the bows! Dave Taylor (Imperial College) and I presented a live look at the medical training environment and our Brighton simulation, used for the study with people with learning disabilities. This being a digitally capable venue, there was no trouble getting a good broadband connection and even Second Life behaved itself, so that the audience got a good look at the potential of virtual worlds in health care and research.

Upstairs in the foyer of the Lighthouse, Jo Roberts (Wired Sussex) had set up media nooks for particular interests. Virtual worlds, social networking (and yes, we’re on twitter), and webs and apps. Somewhere, I saw small food items being passed around but was never able to shut up long enough to take advantage. If you can measure success in terms of the croakiness of your voice the day after, this was off the scale. Mine was a husky growl for two days as a result of all the talking.

And the outcome? Wired Sussex is preparing a report for their funding body. Productive relationships were begun and are bearing fruit. Ribot is in touch with a posse of service users whose dexterity is challenged by motor, anatomical, and brain injury factors. We, R&D, can begin to hope for some major steps forward in our digital research and product development capability.

Thank you John, Phil, Lynn, and Jo.

Photos by Wired Sussex

#WiredHealth