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The making of a blueprint. How historical, qualitative research should inform face transplant policy and practice.

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The making of a blueprint. How historical, qualitative research should inform face transplant policy and practice.

The Author

Fay Bound Alberti

In December 2021, the AboutFace team convened a three-day Policy Lab with the support of the Policy Institute at King’s College London. The Policy Institute has a track record of bridging the gap between research, policy and practice, and making recommendations to UK policy makers. But the AboutFace policy lab was not looking to shape UK government policy around face transplants. Rather, its rationale was quite different.

The making of a blueprint. How historical, qualitative research should inform face transplant policy and practice.

One of the purposes of AboutFace research is to bring interdisciplinary, international expertise to bear on some of the pressing challenges around face transplants. I developed this programme of research into the history and ethics of face transplants because I wanted to ensure that all stakeholders were brought into the discussion: people with lived experience of visible difference, qualitative researchers, and extended surgical teams. The reasons why are quite simple.

Since 2005, when the first face (partial) face transplant took place, the emphasis has shifted in ethical debate from whether it could or should happen to how it happens. Yet many of the issues raised in 2003 and 2006 by the Royal College of Surgeons are still problematic. Heavy use of immunosuppressants carry a health burden for the whole patient and are life-reducing. The estimated length that a face transplant will survive is ten years, though there are some exceptions. There is no consensus on how patients should be selected, and no real data sharing across boundaries. There is not even any agreement on what success looks like in face transplants, a subject I am talking about at the International Society for Vascularized Composite Allograft conference in Cancun this week.

Creating a Gold Standard

In bringing experts from all around the world together, we wanted to create a blueprint that makes recommendations for best practice; a gold standard in how far transplant policy and practice should be led. We were heartened by the consensus in the room, and by the simplicity – but importance – of the recommendations being made to surgical teams to ensure patients receive the best possible treatment.

We believe that this Blueprint is also an example of how qualitative, historically-informed research can help shape and inform surgical practice, and make an international impact. We have included sections on patient selections and expectations, clinical frameworks, patient support networks, public image and perception, financial sustainability and data on patient outcomes and progress.

While this report has a surgical focus, because we are reaching out to extended surgical teams and nurses around the world, we will also be working to engage patients and their families with our findings. We will be releasing a series of videos and discussion points over the coming months. In the meantime, we invite you to read the report and let us know what you think. Any questions, ideas or concerns, get in touch with us.

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Emotion, Lived Experience and Caring in AboutFace

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lived experience and caring

Emotion, Lived Experience and Caring in AboutFace

The Author

Victoria Hoyle

The Thursday installment of our Face Equality Week blogs comes from the project’s Research Associate, Victoria Hoyle.

Emotion, Lived Experience and Caring in AboutFace

AboutFace takes the position that research is not solely an intellectual activity. It is also emotional and sensory, impacting the body and the mind, and generating physical responses and feelings that become part of the process of creating new knowledge. This is central to our understanding of what it means to engage with the personal and traumatic experiences of individuals, including face transplant recipients and their families, donor families, and people living with facial difference.  It is also an integral part of working with professional communities – of surgeons, nurses, psychologists, ethicists and extended medical teams – who, despite the apparently scientific and objective basis of their expertise, also have complex emotional entanglements in their work. Reflection on these entanglements, as well as personal emotional discovery and empathy shape our research practice, in what has been described as ‘affective scholarship’.

Recognising the value of lived experience as a form of expertise is central to this approach. In particular, acknowledging those whose experiences have previously been marginalised or voices silenced in medical settings.  For example, while there is a voluminous and expanding literature of on the functional, surgical and aesthetic outcomes of facial transplantation, there has been no attempt to understand the experience of the procedure from the point of view of the recipient. Very few medical teams have worked with people with significant facial difference, some of whom may be potential candidates for transplant, to explore the surgery’s implications, meanings and challenges. Questions about appropriateness, ethics, identity, and what success looks like have happened within a scientific discourse.

Our aim is to change that, by focusing on what facial difference and face transplant mean to those directly involved and impacted.  As Linda Finlay describes it, we want to understand ‘the world as directly and subjectively experienced in everyday life, as distinguished from the objective physical world of the sciences’ (Finlay, 2009). Speaking to recipients and potential recipients, and their families, as well as donor families and wider facial difference communities is critical to this.  Rather than thinking about validated measures of quality of life or psychological wellbeing, which turn individuals into numbers and data for analysis, our aim is to build a rich, embodied description of face transplants as a human phenomenon.

AboutFace is doing this on two levels. Firstly, by working with our Lived Experience Advisory Panel (LEAP), which is made up of individuals with facial difference who are specialists in areas such as research practice, evaluation, patient participation and involvement, disability rights and advocacy. This group helps to shape the direction and priorities of the research, to ensure that the interests, needs and concerns of people with facial difference are given equal weight to those of other stakeholders as the project develops.

Secondly, by speaking to patients and families directly as part of an oral history process. This process focuses on collecting memories, opinions, thoughts and feelings, outside of existing medical or psychological frameworks for assessing people’s experiences. Our aim is to listen, reflect and consider individual narratives, respecting each person’s point of view as an autonomous, sense-making individual. Over the course of the project we intend to speak to over 100 people with lived experience of facial difference in this way, alongside surgeons, medical teams and others involved in the development of face transplantation.

As a researcher I have experienced the multiple benefits of centralising emotion and lived experience in this way. During the MIRRA project (Memory-Identity-Rights in Records-Access, UCL, 2017-2019) I worked with adults who had been in care as children, to explore their personal histories through the records that had been created about them by social workers, foster parents, the courts and others. The ultimate aim of the project was to develop a new framework for access to care records, to be used by social workers, information managers and care providers. This could have been achieved by desk research on best practice; by speaking to practitioners about structural barriers and challenges, and by designing routes for policy change within organisations. However, by involving care leavers as both co-researchers and participants the project found that the issues and challenges were not solely, or even mostly, procedural or structural.  They arose from the deeply personal resonances that records had for care-experienced people, who used them to fill gaps in their memories and answer critical questions about their early lives (Shepherd et al, 2020). It was the misalignment between individual’s emotional needs and institutions’ bureaucratic systems that led to poor, hurtful access to records experiences.

As a result we developed a framework that focused on love and respect rather than on retention schedules and data protection rules. The former were critical to fulfilling the needs of care-experienced people, for whom the mundane records of local authorities were the equivalent of photo albums and family stories.  We concluded that processes should arise from a fundamental appreciation of emotion and trauma, in a way that acknowledged the individual as a person rather than as the ‘subject’ of ‘data’.  This is what AboutFace also hopes to achieve: an understanding of the global history of face transplants from the multiple perspectives of people rather than of systems, data or theories.  This understanding can then be put to work in discussions about the appropriateness, success and value of transplantation.

Max van Manen (1990) describes this kind of lived experience-centred research as a ‘caring act’, which stems from a desire to deeply understand and do right.  He cites Goethe’s Elective Affinities, linking the pursuit of knowledge with the necessity of caring for the object of that knowledge:

‘One learns to know only what one loves, and the fuller the knowledge is to be, the more powerful and vivid must be the love…’

Which brings us back to the importance and potential of emotional and embodied research.  Although we may not categorise our feelings about our co-researchers, colleagues or participants as ‘love’ in the narrow sense, the broader perspective of the concept, grounded in notions of equality, respect and caring, is essential to the AboutFace research design.

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Framing the face: history, emotion, transplantation

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Framing the face: history, emotion, transplantation

The Author

James Partridge

Guest blog by James Partridge, Director of Face Equality International

Framing the face: history, emotion, transplantation

As far as I am aware, there have been very few inter-disciplinary research projects focused on the human face — perhaps the Future Face exhibition in 2004 at the Science Museum curated by Prof Sandra Kemp came closest in encouraging many contrasting and inter-connecting perspectives: the evolutionary, biological, basic science, anatomical, surgical, psychological and artistic (to name a few!).

A very eclectic and thought-provoking array of artefacts, images and articles from pre-history looking right into the next millennium were assembled — and, happily, Changing Faces had a small but significant pitch with our early posters displayed, one of which was of a man’s face with a complex birthmark over one eye with the epic line: “Hello. Nice to meet you. How are you? Now you try it.”

I was reminded of that exhibition as I prepared to take part in the launch event of the About Face project because ‘framing the face’ brought to mind portraiture — and how lucky we were to have Lucy Burscough’s highly insightful paintings of facial cancer patients to view at the launch. I decided to show some of Henry Tonks’ pastels of WW1 soldiers who endured the pioneering facial surgery and oral scaffolding of the famous dentist-cum-ENT-surgeon-cum-plastic surgeon, Harold Gillies. And photos of Les Gueules Cassées, the French association of facially-injured veterans and, of course, the reconstructing faces of the fighter pilots of Archibald McIndoe’s Guinea Pig Club.

The surgical techniques developed in those years meant that those injured in other wars like Vietnam and Afghanistan were given another chance… people like me, injured in a trivial car fire in 1970, and many many others with other facial conditions — such as cleft lips and palates, cranio-facial syndromes, facial cancer and paralysis — could be offered somewhat less noticeable facial looks. And, let us not forget, those techniques have also evolved to become the daily bread-and-butter methods of the cosmetic surgery industry, now a multi-billion-pound phenomenon worldwide.

So, the history of ‘modern’ facial reconstruction is really only just over a hundred years’ long (although earlier surgery had its successes too). Patients who consent to face transplantation are taking ‘a leap into the dark’ as the Royal College of Surgeons’ report of 2006 described it just as those who ended up at Queen Mary’s Sidcup in Gillies’ care did or at the Val de Grace in Paris [do watch the video ‘The Officers’ Ward’ set in that hospital if you haven’t]. And plastic surgery in the future? Safer transplants, 3-D scaffolding, stem cells… who knows? The specialty has great ingenuity but most plastic surgeons also acknowledge its aesthetic limits.

All this is going on as life in today’s incredibly visual culture is increasingly face-focused… we live in a ‘perfect-face’ culture more than ever before. And that poses great hazards for anyone with a ‘less-than-perfect face’. The 1990 observation by Frances Cooke Macgregor1, the American social anthropologist who followed Vietnam veterans with facial disfigurements back into their communities is arguably even more true today: “people with disfigurements experience a loss [or lack] of the civil inattention that most people take for granted”.

Learning how to manage that successfully is no cake-walk. It took me years2. The pro-active social skills programmes which Changing Faces invented and were proven effective by researchers like Nichola Rumsey, Alex Clarke3 and Alyson Bessell4 need to be made much more widely available.

With the pressures of social media to contend with, the hype of cosmetic surgery all around and the nasty stereotypes of Hollywood villains in the background (sometimes foreground), daily life is far from straightforward and often downright unpleasant. Staring, intrusive comments and trolling seem to be almost the accepted norm. Hate crime legislation hardly touches them. Never has there been such a pressing need for more of the public education evident in that poster: “Now you try it.”

So, my hope is that the About Face project encourages new inter-disciplinary efforts not only to enable surgical advances but also to re-ignite the psycho-social interventions designed to empower people with facial disfigurements of any cause to face their futures confidently, negating the stigma they are bound to face. And gives further impetus to public awareness/education efforts to ensure the prejudice-free social inclusion of people with distinctive faces… which is the ultimate goal of the campaign, soon becoming a global movement, for face equality (like race equality).

  1. FC Macgregor (1990) ‘Facial disfigurement problems and management of social interaction, implications for mental health.  Aesthetic Plastic Surgery 14(4) 249-57

  2. Partridge, J. (1990 and 2012). Changing Faces: the Challenge of Facial Disfigurement. London: Penguin and Changing Faces. Available from JP on james.partridge@faceequalityinternational.org

  3. Alex Clarke et al (2014) CBT for Appearance Concerns. Wiley Blackwell

  4. 30. See also www.faceitonline.org.uk which was very successfully evaluated in this study using an RCT methodology

Face Equality International: www.faceequalityinternational.org

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