Double hand transplantation provides important reminder of the role of limbs in the organ donation scheme.

Corrinne Hutton, who had four limbs amputated due to sepsis, and who has since been an enduring campaigner for both amputees and organ donation, has now had a successful double hand transplant at Leeds General Infirmary (https://www.bbc.co.uk/news/uk-scotland-glasgow-west-46814473). Whilst hand transplantations have been possible since the late nineties (Dubernard et al., 1999), relatively few have been conducted, in part due to the challenges of finding appropriate limb donors for such surgeries. Whilst discussions around organ donation have become more prominent and the consultation on opt in organ donation in England (https://www.organdonation.nhs.uk/supporting-my-decision/the-opt-out-system ) has further highlighted the need and importance of donation for those needing new organs, when we think of organ donation we still primarily perhaps think of internal organs, rather than limbs.

Whilst the need for organs (particularly internal organs) through donation, often relates to a pressing life and death need brought about by illness or disease in the patient, the donation of limbs can have a substantial impact on the quality of life of those who have lost a limb through trauma or illness, and on their ability to engage in work, personal care and social activities. Currently, limb donation is not part of the organ donation registration process, in that potential donors are not able to express their wishes around whether they would be willing to donate their limbs after death. This means that limb donation can only occur through consent from relatives after the death of any potential donor. Corrinne Hutton herself took part in campaigning in 2016 to make people aware of the organs and tissue that can be donated from human bodies (https://www.bbc.co.uk/news/uk-scotland-37292529 ). Amputation of any limb is seen as a ‘violent intervention’ (Shildrick, 2008) to the body, thus for the recently bereaved family, consent to donate limbs may be a difficult prospect to consider, especially if the wishes of the deceased around limb donation were not known.

Limb matches are also subject to further complexities due to the need to match skin tone and hand size to the patients original limbs in order to try and navigate the possible psychological side effects of receiving donated limbs. Hands are after all such a visible body part, used in the most intimate and personal of gestures, thus navigating the potential psychological risks associated with acceptance of the donated limb is critical. Professor Simon Kay, the surgeon who completed Corrinne Hutton’s hand transplants notes the significance associated with the donation of limbs; “[Corrinne] realises what a remarkable life-affirming gift she has received from an unknown family devastated by grief and I know she will be forever grateful.” (https://www.bbc.co.uk/news/uk-scotland-glasgow-west-46814473). Thus the gifting of limbs through donation is seen as a hugely significant gesture, and given the lack of awareness and insight of the possibility of limb donation after death, the decision for a family to have done so is further compounded in this magnitude.

Although limb donation is more about restoring patient quality of life and increasing their abilities to participate in tasks and activities, than saving a life, it could well play an important role in overcoming the grief of the previously lost limb. Limb donation is, and will remain a different type of donation to organ donation, and the focus on raising awareness about organ donation in order to save lives through organ donation should remain the key focus. Limb donation and transplants of limbs does however illuminate the importance of having more open dialogue around the donation of limbs, so that it is demystified for patients and their families and that conversations around limb donation can take place amongst families so that the wishes of any potential donors may be known in advance. Our continued lack of societal openness around limbs once they are no longer part of the corporeal whole and specifically about their disposal or reuse through donation means that the ability for patients to enact their preferences is severely restricted. This can then mean that patients waiting for limb transplants, are subject to further delays in seeking the possibility of having new hands.

 

References:

Dubernard, J.M., Owen, E., Herzberg, G., Lanzetta, M., Martin, X., Kapila, H., Dawahra, M. and Hakim, N.S.(1999). Human hand allograft: report on first 6 months. The Lancet, 353(9161): 1315-1320.

Shildrick, M. (2008). Corporeal Cuts: Surgery and the Psycho-social. Body & Society. 14(1): 31–46

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Call for book reviewers: Special issue IJSRM

Call for book reviewers: Special issue IJSRM on Digital qualitative methods in social research

As part of a special edition for the International Journal of Social Research Methodology (IJSRM) (https://www.tandfonline.com/toc/tsrm20/current)- an interdisciplinary journal dedicated to exploring methodological developments in international contexts, we are seeking author(s) of a book review essay. The special issue is on Digital qualitative methods in social research and seeks to explore how qualitative research is being undertaken in, on and with the digital.

Whilst there has been a growing awareness and literature of the ethical parameters around doing research online (c.f. (Eysenbach & Till, 2001; Rodham & Gavin, 2006) and of the means for conducting particular types of online work, such as ‘netnography’ (Kozinets, 2002; Langer & Beckman, 2005) or online surveys (Sue & Ritter, 2011; Evans & Mathur, 2005) qualitative digital methods as a whole remains an area which is expanding, growing and evolving alongside the technologies and platforms with which it engages. Those engaging in digital work are often navigating new paths, utilising reflexive practice to understand the intersection of qualitative work and digital settings and it is these experiences and practices that this special edition seeks to explore.

 

As part of this special issue we would like to commission a review essay of the following texts:

  • Marres, N. (2017). Digital sociology: The reinvention of social research. London: John Wiley & Sons
  • Salmons, J. (2016). Doing qualitative research online. London: Sage

The review essay would look at the links between these texts and examine how they move forward the state of the art of digital qualitative research. Ideally this review would be between 4000-6000 words in length.

If you are interested in conducting this review essay for the special issue, please outline your reasons for wanting to conduct it, and your experience in relation to digital qualitative methods in no more than 300 words. We will then assess these and select the most appropriate candidate to conduct this review.

Please send the 300 words and author(s) details to the special issue editors: Dr Chris Till C.Till@leedsbeckett.ac.uk and Dr Esmée Hanna esmee.hanna@dmu.ac.uk by the 16th of November 2018.

If you have any questions, please contact us on the email address above. We welcome submissions from academics at all career stages and would provide support to any PhD students/Early career researchers to conduct this review essay if they are successful.

 

Call for Papers: Special edition of IJSRM- Digital qualitative methods

Call for Papers: Special edition of IJSRM

Digital qualitative methods in social research

We are editing a special edition for the International Journal of Social Research Methodology (IJSRM) https://www.tandfonline.com/toc/tsrm20/current  an interdisciplinary journal dedicated to exploring methodological developments in international contexts. The special edition Digital qualitative methods in social research seeks to explore how qualitative research is being undertaken in, on and with the digital. Whilst there has been a growing awareness and literature of the ethical parameters around doing research online (c.f. (Eysenbach & Till, 2001; Rodham & Gavin, 2006) and of the means for conducting particular types of online work, such as ‘netnography’ (Kozinets, 2002; Langer & Beckman, 2005) or online surveys (Sue & Ritter, 2011; Evans & Mathur, 2005) qualitative digital methods as a whole remains an area which is expanding, growing and evolving alongside the technologies and platforms with which it engages. Those engaging in digital work are often navigating new paths, utilising reflexive practice to understand the intersection of qualitative work and digital settings and it is these experiences and practices that this special edition seeks to explore.

As part of this special edition, we are seeking 1 or 2 further papers to compliment the other papers we have selected for this special issue. We are seeking abstracts of no more than 300 words outlining the premise of the paper and key arguments, including the main qualitative digital approach or perspective the paper will engage with. Papers will be selected based on originality, contribution to understanding of qualitative digital methods and international relevance. It is essential that papers demonstrate engagement with cutting edge digital qualitative methods in order to justify inclusion. Papers from all career stages are welcome, and the process will be as supportive as possible to facilitate the involvement of PhD students and ECR. Abstracts will be assessed by the special issue editors (Dr Chris Till, Leeds Beckett University and Dr Esmée Hanna, De Montfort University) and assessed in relation to the existing contributions we have for this special issue.

Topics of papers may include, but are not limited to:

  • Theoretical engagements with ontological and/epistemological bases of particular digital methods/methodologies
  • Critical and evaluative syntheses of existing methodological approaches
  • A demonstration of, and critical engagement of with, an innovative method
  • Reflections on ethical issues in the use of particular digital methods

Please send your abstract and contact details to esmee.hanna@dmu.ac.uk and C.Till@leedsbeckett.ac.uk  by the 16th Nov 2018 .

We are hoping to have drafts of full papers by the end of January 2019 although some flexibility can be provided around deadlines.

If you have any questions, please contact us at the email addresses above.

 

Representations of Disability and reproduction

 

 

christa-couture-inline-without

Crista Couture, photo by Jen Squires- image from here 

 

I found this article a really powerful piece and wanted to share a few words around it- as someone who explores experiences of (in)fertility and who is beginning to examine amputation from a sociological perspective, there was much within the article and its images to inspire . The author of the piece Crista Couture describes not seeing any bodies ‘like hers’ when looking at maternity photos (i.e. images of pregnant women) so decided to make her own pictures, despite not having had professional photos taken without her prosthesis on before. The article, despicts the rationale for these photos as well as sharing the visual outputs such as the one above.

Christa describes ‘it wasn’t just that I didn’t see any amputees in maternity photos — I didn’t see any kind of disability. At all. Or really any other body differences. It turns out maternity photo shoots, like the rest of the depictions of women readily available, abound with thin, white bodies’

When it comes to bodies, the normative depiction is of the entact, sculpted, ‘perfect’ form- the idea that, as Margrit Shildrick (2015) has described, bodies can be ‘leaky’ is absent from such narratives. Bodies that are altered, transformed or different from this pervasive norm are absent from representations within society, not only of bodies, but certainly from reproduction.

The social construction of this norm therefore centres around being exclusionary – the ‘othering’ of any bodies that do not conform to the ‘white, thin’ narrative therefore happens by virtue of the construction of what we see the pregnant female form to be in contemporary society. Whilst we then rarely see the celebration of the pregnant disabled female form, we also regularly do not see the ordinary reality of those who have experienced the loss of a limb through amputation. Amputation by virtue of its defintion relates to removal, of an absecnce or loss, pregnancy on the other hand is a period of creation, growth, of multiplication, Crista’s photographs demonstrate a postive reminder that bodie are capable of adpating, changing, altering and that this is part of their strength.

In producing images that celebrate the corporeal form as it is, Crista Couture and photographer Jen Squires have created a powerful set of images- beautiful in their depiction of the pregnant form, and celebrating the body for its realness. The mono-perspective of the human form serves a minority who identify with such images of perfection and the industries which promote the (often unrealistic) quest to achieve such forms,  whilst reinforcing the idea that all bodies should be prefect.We need to see difference as part of the reality of bodies and only through seeing representations of diverse forms will that be achieved. 

 

Men’s experiences of infertility – Findings from a new survey

To coincide with National Fertility Awareness Week (30th Oct- 5th Nov) we are pleased to be launching the findings of a new survey about men’s experiences of infertility. The first qualitative questionnaire of its kind, we asked men a number of open questions about their experiences and what matters to them in relation to infertility. The survey was a partnership between the research team at Leeds Beckett and Fertility Network UK (the national fertility charity in the UK) and we hope that the findings will help shine the spotlight onto the feelings, experiences and difficulties then men encounter during fertility testing, diagnosis and treatment. A short video about the research and its findings is available here: https://www.youtube.com/watch?v=hNYKBwBbHLU and the infographic below highlights some of the key messages from the survey:

FINAL fertility infographic

The Productive Researcher

productive researcher

The new book my Prof. Mark Reed (Founder of Fast Track Impact ) The Productive Researcher is out today. I have been part of Mark’s ‘launch team’ which excitingly meant I got an early preview of the book in exchange for my honest thoughts about it.

I like to think I am fairly productive so I was interested to see what I could learn from the book. I was also keen to understand how or it if could be useful to researchers like myself who are at the outset of my career. Academics, especially those at the early part of their careers are often under huge pressure, publishing, applying for grants, teaching, managing workload, building a profile, to name but a few tasks, and this is increasingly being done whilst on precarious contracts. Workloads in research are often private affairs too, whilst we may work collaboratively, we are often as researchers responsible for our day to day time and workload management and so knowing what others might be getting through or doing is sometimes mysterious. That Mark explores the ideas of other scholars, their advice for achieving more without sacrificing all of yourself is therefore really enlightening.

The book as a whole I found really interesting. There are a lot of deeply personal reflections from Mark at the start of the book, the honesty of that is appealing and really helps set the tone for the book. A lot of the words in the book feel like the good advice you perhaps wished you had received at the start of your career, and there is no preachy tone about time management. Whilst the book does tackle the issue of ‘saying no’ (a common piece of advice extolled across productivity and careers advice type articles) there is an awareness that saying no is contextual, is linked to power and opportunity and that it is really dificult. In that regard the tone of the book really reminded me of Leap Year . 

The central message of the book for me was about connecting with why you are a researcher. Why do we do research? We will all have varied answers for that question, for me, I enjoy the new knowledge, solving a puzzle or answering a question, I also want and try to do work that is meaningful, giving a voice to those who may be marginalised or silenced, and to try and improve things in whatever small ways I can through doing so. In the daily rush of the tasks that we face, that bigger picture can sometimes be less clear or feel far away, but as The productive Researcher rightly points out- ” When you remember why you are doing what you are doing, you will do it for the right reasons, and you will do it better”.

Overall, a really interesting book. That a researcher has written the book helps, Mark ‘gets it’, and there are elements that will be potentially useful for all the career stages of the academic journey. Mostly I found reading it motivating, it gave me a renewed sense of wanting to get out there and do work that I believe to be ‘good’ which can never be a bad thing.

You can find the book here

 

A few thoughts about research participants

As a qualitative researcher most of my work involves speaking to people, asking them about their experiences, trying to understand what matters to them and then using this information to address the research questions that I have. Research participants are therefore central to such work, without them there would be no data, no new information and we would struggle to keep moving forwards with interpretations and understandings. Others have written about why people get involved in research and identify that a personal interest can be driving factor or people can seek or hope that research will bring about change or that they will be represented in some ways. It’s important that as researchers we think about the motivations of people participating in the research we do, but it’s also really important that we think about our appreciation of them doing so to.

From doing my PhD research, where I condcuted what were often long oral history interviews, I quickly learnt that research participants are often exceedingly generous to researchers, giving up time, offering hospitality and allowing you into personal aspects of their lives. This sense has only continued as I have moved into doing applied health research where I am often asking people about intimate or emotive topics. The generosity of research participants must be acknowledged, not just between the researcher and participant but more publically. So this post is a thank you to everyone who engages with and gives generously to enable our research to occur. Thank you for giving your time, for speaking up and for being willing to be open and invested in the idea that research can and should be a potential mechanism for change.