Dupuytren’s Contracture – impact on work & leisure

Thand with Dupuytren's contracturehese are my hands. They haven’t always been like this but my mother’s were, in her later years, and at the time I really didn’t understand the implications. Somehow, I managed to believe that not uncurling her fingers was almost wilful and that she could if she really wanted to. Now I know she couldn’t. See the tiny nodules and pads on my right hand, white against pink? They’re quite new, the disease is active. See my left hand? If I fell off a cliff I could dangle from that pinky for hours because it doesn’t move and nor would it hurt. Left to my fate, I would eventually be a skeleton held defiantly and comedically in place by just that one finger.

The cause is over-enthusiastic connective tissue which first forms nodules, usually in the hands but sometimes in the feet where it’s called Ledderhose. These nodules gradually expand to form cords, and the cords tighten over time like a pulled thread in your best sweater, dragging the finger down into the palm. What causes the nodules and the cords though is anyone’s guess. There are indications of an autoimmune component with a genetic predisposition linked to north European heritage.

Treatment includes using a needle to disrupt the cords (needle fasciotomy), collagenase injection (an enzyme that dissolves the affected tissue), open surgery, and in some instances, radiotherapy.  For many people – maybe most, the results are temporary. This disease won’t be messed with. Upset it and it’s back with a vengeance ready to make you stick your finger in your eye when you wash your face, turn putting on gloves into a wrestling match, and leave you with a two-finger salute you never intended. Right-handers struggle with handshakes – do they avoid them and risk seeming stand-offish, or carry on regardless and hope the weird finger-in-the-other-person’s-palm thing doesn’t freak them out? Mugs are hard to hold, anything you aim a grab at can be knocked away by the curled-in digits before the remaining ones have got a grip, your typing skills go AWOL, and just try applying sunscreen, shampoo, or moisturiser.

There is no cure.

On the positive side, it isn’t life threatening, it doesn’t seem to affect any other body part (but cf feet), and give or take the inconveniences of grip and grasp, it’s hardly on the map when it comes to disabling conditions. Or is it?

Professionally, for me it wasn’t a problem beyond the fact that I couldn’t use a mouse so had a graphics pad installed on my computer. This was fine until hot-desking became a thing and, reminiscent of my own failure to appreciate my mother’s problems, managers serially failed to grasp that I couldn’t, well, grasp and needed a dedicated PC.

But what about other professions where hands are critical? I’ve heard of musicians having to give up playing, a physiotherapist unable any more to apply therapeutic manoeuvers, a vet who found himself without the rounded full-palmed touch he needed both for diagnosis and making an animal feel safely held. There is research but it isn’t very high profile and more participants are needed.

So here’s the question: if you have Dupuytren’s and you’ve had to give up your work or something else important to you, would you warn your children about it, suggest they choose a different profession or interest, one that wouldn’t be affected if it turned out they had the condition? Or would you let them follow their dreams and then wish you hadn’t if they had to give it all up because of some rogue tissue not enough people were interested to help figure out how to stop? If even a smidgen of that is a ‘yes’, then please consider contacting your professional body if you have one, and asking how many of its members are affected and how many have had to give up or reduce their professional activity as a result. Let me know what you discover and I’ll see what can be done with those data by way of raising the profile of the condition and making it a meaningful thing to people it doesn’t (yet) concern.

Please also consider becoming involved with research towards understanding more about this ridiculous disease and eventually putting it back in its box.

This is the UK register.

This is the British Dupuytren’s Society.

This is the International Dupuytren Society

This is the Dupuytren’s Disease Support Group on Facebook

 

[edited 24th April to add International Dupuytren Society link]

 

‘BBC Dad’ – a viral video and a flak storm

There can’t be many people who haven’t seen the unfortunate chap trying to give a serious interview on live TV while his children invade his home office and a woman in the background does one of the best unscripted comedy extractions ever seen. The interviewee was political scientist Prof Robert Kelly, an expert on North Korea, and Mission Impossible Woman was his wife. At almost the same time as the ‘comedy gold’ took off, the internet laid into Kelly with judgments ranging from accusations of abuse (he’s a controlling, authoritarian man of whom his children and his wife are clearly terrified) to assumptions that the woman was the nanny based on her Asian appearance. The latter was quickly denounced when the actual evidence emerged and a new storm on the matter of racism began.

The abusive control freak, though? Watch the video – yes he pushes his daughter away while staying focused on the interviewer, and yes he tries to keep a straight face. But this was live TV remember? His daughter sits down nearby, not at all cowed by being held away from the screen; and the straight face only barely holds. Kelly’s parents said it was hilarious and that the kids probably thought it was one of their grandparent Skype sessions.

Another perspective, understood by parents working from home whose credibility is frequently threatened by unplanned domestic intrusions, felt his pain: ‘Oh Robert Kelly. We’ve all been there. All of us, and many of us more than once’. It’s 2017 and that’s how it works.

But beyond making judgments for which we have no evidence, I think there’s a really important thing we can learn from this and that’s to change our image of credibility. If Kelly had felt able to draw his daughter in instead of pushing her away and was accustomed to doing so in such situations as this, and if the rest of us could bring ourselves to understand him as an expert with a small child snuggled under his arm, this flak-storm could never have arisen. Surely credibility comes from knowledge and communication, not from pretending that experts don’t have a domestic life, a position that’s surely a leftover from times when men ‘went to work’ and women looked after all the noisy, messy stuff at home, out of the way.

For me it’s animals – cats marching across the keyboard or chin-rubbing the camera, dogs barking at doorbells, or neighbours, having not received an answer at the front, coming through the garage to hammer on the utility room door just in case I’d rather open that one where I can’t see who’s there. I’ve never done live TV but I promise I’ve discreetly shoved and quietly hissed my way through conference calls and the occasional professional presentation. Kelly has my admiration, as does this weather man who was more dignified than either of us.

Clip credit YouTube

Clip credit YouTube

 

Update 19th March 2017: This video appeared recently, spoofing the original by showing how a multi-tasking woman would have managed. A cheap shot at men? Well yes. Funny? Very. Also though inadvertently but exactly illustrating the revised image of expertise I suggested above. I might have requested a hair-and-makeup break when the bomb came in though …

 

 

 

 

 

 

‘What does psychology have to offer at end of life?’ – an EAPC re-blog

In her well-articulated article, Dr Jenny Strachan, Clinical Psychologist, Marie Curie Hospice, Edinburgh, United Kingdom, talks about what it is that psychology has to offer when there is no mental health problem to treat:

The ‘science of mind and behaviour’ has many branches. Developmental psychology explores how our minds and behaviours are shaped by our early years’ experiences. Cognitive neuropsychology investigates how they are determined by the structure and functions of the brain. Social psychology considers the influence of the groups, large and small, in which we belong.

If psychologists in palliative care stick to a narrow, ‘clinical’ interpretation of the role, that is, direct treatment of disorder, we miss an opportunity to promote and preserve the wellbeing of all our patients. Not to mention the wellbeing of fellow staff.

Psychology is not a complementary therapy. It should not be thought of as an ‘extra’ that we add in for the patients who are struggling. It is the theory-driven, evidence-based study of being human, and it has something to offer us all.

Exactly. Psychology comes from an academic study of ordinary people of all ages behaving the way people do in the range of conditions they encounter. It deals with extremes, of course it does, but it is rooted in normality and as such has always been more able to distinguish the extraordinary within that context from the extraordinary that marks illness than disciplines defined by the illness model of behaviour. When bad things happen to people – abuse, terror, war, poverty and deprivation – it should be no surprise that personal survival depends on making the best, consciously and unconsciously, of one’s own psychological defences. This is adaptive and normal even though its expression may seem far from being either.

Strachan is talking here about terminal care but as a clinical psychologist for adults with intellectual disabilities, that was our approach before the emphasis on therapy took hold. There was triumph in finding a way for someone to use a cash point independently, in devising a one-off experiment to establish reliability of eye-pointing for a complex decision or assessing whether or not a man accused of masterminding a criminal act was faking his disability so as to appear incapable, and enabling a woman about whom many of us had concerns regarding her apparent passivity, to show us she knew exactly what getting married meant and that she wanted to get on with it.

To me, therapy is a last resort for most people because it means we’ve failed as applied psychologists to promote well-being as a key activity, whether with vulnerable groups specifically or in society at large. Our discipline establishes and extends bodies of knowledge in every area affecting humans, from building design to neurobiology, group processes and social influence, the impact of the prenatal environment, causes and management of criminality, and the social dynamics of ageing and dying. Which begs the question – why are we so focused on delivering cognitive therapy to people who may not have needed that at all had we put the same effort and priority into prevention and resilience?

I see Strachan’s article as a call for psychology to re-establish itself as the multi-dimensional science it is; one that, instead of spending all its time pulling people out of the river, is able to look upstream to see what is pushing them in*.

 

 

*This is a paraphrasing of a quote by a senior nurse in (probably) the Nursing Times at least thirty years ago and for which I can no longer find the source. The idea has been around that long and still it seems new.

Feeling anxious? Try this breathing gif

//platform.twitter.com/widgets.js

 

Edited to show Giphy as the source of the graphic.

You got a new Echo, now what?

The Amazon Echo (also Dot) has been available in the US for only two years and it’s even newer to the UK.  Maybe you got one for Christmas and you’re wondering where to start with it – the instructions in the box are a bit sparse, it must be said. Listed below are some links and tips born of adopting a small Echo zoo when they arrived in the UK in October/November.

  1. It’s interactive, you speak to it and it responds. Mostly it does what’s expected but sometimes it doesn’t, much like your cat. You won’t go far wrong if you think of it as slightly more domestic pet than gadget.
  2. Its repertoire is expanding all the time so keep checking up on its skills.
  3. Skills? What skills?! Ok, we’ll come back to these.
  4. First things first – did you download the Alexa app? Good, that’s how you get connected and it’s also where you set your location so it knows your time zone and all sorts of other things relevant to the information it can give you such as the weather, travel, and – ahem – the time.
  5. You can find a bigger version of the app on your computer. Go to alexa.amazon.co.uk and locate your device, you can run or adjust a lot of things from there.
  6. You probably have an Amazon account if you bought the device for yourself, but what if it was a gift? The recipient – you or the person you gave it to –  needs one or the device won’t connect to anything. It doesn’t have to be a paid account, it’s a place where data from the device is stored.
  7. So now you have your Echo connected and it knows where it lives. Run through the list in your app or on-screen and get to know it, then go looking for skills. They’re still a bit US oriented but they’re mostly free and they add depth to what your Echo can do. Choose news sources to add to your Flash Briefing, link your Spotify account if you have one, ditto Audible thecho app clipen you can fall asleep while Alexa reads to you or works through your favourite playlist. You can set a sleep timer so it doesn’t play all night; just say ‘Alexa (or Echo or Amazon, whatever you’ve named it – sadly Mrs Shufflebottom isn’t available) set sleep timer for 20 minutes‘ and you’ll hear either, ‘Ok, I’ll stop playing in 20 minutes’, or ‘Sleep timer set for 20 minutes’.
  8. Radio stations are accessed via TuneIn which is the free default skill for that purpose. All the main BBC stations and many of the local ones are listed although it can be tricky getting the Echo to recognise some of them. TuneIn seems apt to drop its feed occasionally too which means the station suddenly stops playing even if your device is still connected to the internet via your wifi. If that happens, do remember to give it the ‘Stop’ instruction or you risk having the bejabbers scared out of you when it comes back on some hours later. The Stop command also lets you try restarting the station straightaway, usually successfully.
  9. Your diary: Echo uses Google calendar. It won’t integrate with an iOS calendar so if you want to ask about your forthcoming appointments, you’ll need to sign up with the Big G. It’s painless unless you’re someone who breaks out in a rash at the very idea of Google knowing what you’re up to.
  10. Sometimes it won’t hear you, sometimes it will hear its name, or something that sounds similar in the middle of a TV programme and try to respond. Coughing can trigger a device named Echo and ‘electric fence’ woke up one of my Alexas. Quite what gave rise to the response, ‘I haven’t got any money‘ is anyone’s guess.
  11. Talk to it. ‘Good Morning‘ gets you a good morning back and often a daily factoid; request a Knock-Knock joke or a haiku or just something funny; challenge its ancestry or place in the AI hierarchy with Who is your master? Where do you live? Do you know Siri? Teenage boys will no doubt find many other questions to ask. The software is sassy but prim and it can handle itself, but do remind its interrogators that their remarks will be stored on your Amazon account where you will review it in time for next Christmas.
  12. Ok, links:
  • The unofficial Amazon Echo user forum  Largely helpful although some of the most knowledgeable can also be the most, erm, problematic. T’was ever thus.
  • Love My Echo More of a newsletter and often contains tips and tricks, including nerdy interactions rooted in Star Wars and Star Trek. Try ‘Alexa, beam me up‘ or maybe ‘Alexa, start the self destruct sequence’.
  • Your manual. Read it so that when someone on a forum thread gets antsy, you can advise them that, yes, you have RTFM and the FM didn’t help which is why you’re here.
  • C|NET’s list of commands, including Dad jokes because obviously …
  • Easter eggs – little hidden gems the software builders put there for programmer types to find and the rest of us to pretend we found after we read the list.
  • A discussion of data storage – where does all that stuff your kids (or your gran) yelled at it actually end up and who can see/hear it?
  • Some problems and fixes from C|NET.
  • More Easter eggs via the Business Insider. See how quickly we’ve moved on from how can I make this work to how silly can I be with it even though I’m a proper business type?

Finally, Serious Face now, there’s a great deal of potential in this device for use as assistive technology and a good many people seem to have bought them for elderly parents and people with failing vision or other disabilities that limit screen or touch use. Be aware of the data storage issue – if you’re running the app you’ll see (or hear) whatever your gran puts into it. If that’s her shopping or To Do list and you’re the one actioning those, well great, but she needs to know it ALL goes on there.

If you can manage that, or if it’s you operating the system on your own behalf, there are two skills you might want to consider. Ask My Buddy keeps a list of contacts that can be alerted by the user if they need help. Saying, ‘Alexa ask my buddy to contact X’ will trigger an email/text/phone call to that person while , ‘Alexa ask my buddy to send help‘ will result in alerts being sent to all the contacts. Obviously it’s not a substitute for emergency services but may be handy if the user is unable to get to a phone but is within shouting distance of an Echo device. It’s free for a limited number of contacts.

The other skill is called Debby Onsite and it’s geared to giving reminders about where you put something. It can also, if you’re up to a string such as, ‘Alexa, tell Debby onsite the timer means let the dog in‘, tell you what the alarm or the timer that’s just going off is supposed to indicate. Just say, ‘Alexa, ask Debby onsite about the alarm,’ and the response is something like, ‘You’ll probably find the alarm means let the dog in’.

These are early days, this device isn’t Mia but nor is it HAL (that said, if you ask it to open the pod bay doors …). It has a long way to go, but its capabilities even now are very promising and it can only become easier and more useful as the software and skills ranges develop. Meanwhile, chat to it, let it read to you, play music, cheer you up; set timers and alarms without getting it covered in flour or cat litter, expect the unexpected. Say ‘please’ and I swear it blushes. And if you’re into IFTTT, start writing your own skills for those of us who aren’t 🙂

 

Disclaimer: these are my own discoveries made through recent ownership of Echo devices and trawling of support forums. It’s a non-exhaustive, non-technical intro to the sorts of things I’d like to have known when I first set mine up, and it’s likely to be time sensitive in that much may change in the coming months. Please use the links to follow up on technical issues because you really really don’t want that from me!

The Recovery Letters

The Recovery Letters is an online project started by James Withey who invited anyone who had experienced depression to write a letter that might help others. In his words:

The Recovery Letters are all written with the intention to try and alleviate some of the pain of depression, to make the loneliness slightly more bearable and above all to give hope that you can recover. We see recovery as self defined but can include living alongside symptoms or being symptom free, being stable on medication or medication free but most of all living a life with some meaning. [They] are written from people recovering from depression, addressed to those currently suffering.

Depression doesn’t discriminate. It’s not interested in who or what you are, how much you earn, or your professional successes. We know this, or we should, from the numbers of high profile sports and TV personalities beginning to disclose their struggles with the condition, although people still express disbelief – what could he possibly have to worry about? or she’s such a strong person, you’d never think that could happen. It does though, because depression often comes from nowhere and drains all those achievements of value, making them worthless and turning the person who achieved them into a fraud – a burden to everyone around them.

These letters are real; they’re not fictional and they’re not all easy to read. My former boss, past chief executive of a large mental health trust, has a letter there, and so have ISome of them will be coming out in a print book next year, published by Jessica Kingsley. A companion maybe for people still finding their way through; a primer for those wanting to know more so they can try to understand or help someone who may be drowning while wearing the bravest of faces.

James asks that visitors to the site please read the About page  for context before going on to read the letters.

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.