29/04/2011 by lizit.

I facilitate a drop-in group for parents of children with SENs. Most of the parents who attend have children who have high functioning autism or Aspergers amongst their diagnoses.

Even though my research focuses on those who care for and support children and young people with diagnoses of Aspergers and HFA, I decided that it would be inappropriate to include this group in my research, apart from making personal requests to some specific individuals to interview them. My role in the group is to offer support and share from my own experiences and there was a clear conflict of interests between hearing confidential information in a support role and using such information in my research role. Further, if I had asked the consent of group users to use knowledge gained in the setting in my research, it may well at best influenced the operation of the group and at worst led to some parents deciding not to use the group because they could not rely on their circumstances being kept cinfidential.

However, from time to time I find myself in a conversation when I just wish I hadn’t made that decision. One such was a conversation this week. There were two parents with primary age sons, both with diagnoses of Aspergers and ADHD, and the discussion was about their concerns about aspects of their sons’ behaviours which were a cause for concern. As they spoke of some of their young sons’ aggressive acts, fascination with their bodies, and threats of violence to the point of murder, I was so reminded of my experiences with my son when he was much younger. Like them, I had been concerned by the cold and calculating way he had spoken of killing, and, like them, I was terrified that I might have a psychopathic killer as a son. I had forgotten those thoughts and feelings, but as I participated in this conversation, I remembered some of those dark times, and was so thankful that my son, now adult, is so different from what I feared he might be. Although nobody can guarantee how any child will develop, it brought some reassurance to these women that my son was now OK. But for me there was the dilemma of how do I include some of this content in my discussion of the struggles parents face in raising young people with ASDs.

Posted in boundaries, Aspergers/HFA, ethics | Print | 1 Comment »

13/08/2010 by lizit.

A few weeks back I wrote about “The narrative turn” and the different perspectives there have been, and continue to be, on narrative research. Since then I have been giving some consideration to the “paradigm wars” - basically the contentious argument between quantitative and qualitative methods - and seeing some parallels between the two. Some of the arguments made against that form of narrative research which focuses on stories and life histories are remarkably similar to those posited against qualitative methods more generally. Similarly, those who rail against these methods appear to be looking for ways of making their qualitative work more structured and science-like so as to better match the values attributed to positivism and quantitative methods. I’m enjoying reading various articles and observing the fisticuffs taking place.

However, by reading these articles, I realise increasingly that I need to identify where I position myself - and why.

Some time ago I read Howard Becker’s classic paper “Whose side are we on?” and was somewhat cheered to find a case being made for recognising that no research is truly value-free - though the values espoused may vary. More recently, I have been looking at some of Arthur Frank’s writing and I’m finding “The Standpoint of Storyteller” helpful. In this article, apart from addressing Atkinson’s criticisms, Frank distinguishes stories from narratives, considers his standpoint and what brought him to that position, and makes some useful comments on the difference between his standpoint and that of the more traditional medical sociologist.

Importantly, Frank reminds us that people do not tell narratives - they tell stories. Story telling is about relationships - stories are not spoken into a vacuum, but require listeners - and listeners respond to the story as they hear it and relate to the story teller. He goes on to speak of the recuperative value of story telling - telling the story can help a story teller to place a distance between themselves and the event or condition the story focuses on (I guess this moves into the area of construction and objectifying reality…). Stories are more than data - too much focus on narrative and analysis can lose the relational context of the story telling. The researcher who is privileged to hear stories is also ethically and intellectually obliged to recognise and enter into relationship with the story and the storyteller.

In identifying his standpoint, Frank turns to his own story and his life and academic experiences. He arrives at a place which is about change - his position is not about describing the experiences of people who are sick but about making changes so that sickness can be experienced differently (I hope I am summarising him correctly there!). He says “To take a standpoint means to privilege certain aspects of what your biography shares with others.” There is nothing value-free here!

Frank goes on to differentiate the “ill person” and the “patient” - a “patient” is an “ill person” but an “ill person” is not a “patient” much of the time. Frank’s focus is on the “ill person” rather than the “patient”. Whereas Atkinson is a medical sociologist who views the doctor patient relationship, Frank focuses on the person. For Atkinson, the transaction between doctor and patient is important, but for Frank it is largely irrelevant. Similarly, outcomes are different - Atkinson is asking what can be learned to benefit the medical encounter and Frank is asking how the world looks from the perspective of an ill person.

This is relevant to me as I look at the participants in the autistic domain. How do I view the parents and children? Who am I speaking to? Am I relating stories or giving people a voice? What are the values underpinning my research and where do I stand?

Becker, H. S. (1967). Whose Side Are We On? Social Problems, 14(3), 239-247.
Frank, A. W. (2000). The Standpoint of Storyteller. Qualitative Health Research, 10(3), 354-365.

Posted in values, methodology, narratives, ethics | Print | No Comments »

05/06/2010 by lizit.

An issue I have been tussling with for some time in my mind concerns confidentiality in auto/biography. Merrill and West discuss some the extent to which it is possible to disguise the identities of people, especially where sensitive material is being shared and recognise that although a number of identifying factors can be changed, it is not possible to hide identity completely from those who know the participant well.

Chrissie Rogers draws attention to a further issue in discussing her daughter: “there were some occasions where anonymity was impossible: those involving my daughter. I have talked to her about this research and her inclusion (which she agreed to), and I do not apologise for the lack of anonymity here because unlike children in general, many of whom become ‘able’ adults, she, like many of the participants’ children, will never be able to ‘tell’ her story via this particular medium.”

Liz Stanley describes the interaction between constructing one’s own autobiography and constructing the biographies of others. My story is made up of other people’s stories, just as my story is incorporated in the stories of others. The moment I declare myself as the mother of a son with Asperger’s syndrome, our stories interconnect. As I talk about experiences throughout his childhood, he becomes more of a person and more recognisable and identifiable. Unlike Chrissie’s daughter, my son is in the process of becoming an ‘able’ adult.

What are my options?

I can seek his permission for what I am doing? But how free is he to refuse - and if he does, where does that leave me?

I can consider whether I can tell my story in any meaningful way while airbrushing him out.

I can focus on the stories of others and seek to silence myself.

I can disguise my identity so as to disguise his - but how can I do this effectively?

Is even writing this blog post, and no doubt some of my previous ones, already going too far? Indeed, have I already gone too far in the many forum postings I have made over the years?

Merrill, B., & West, L. (2009). Using Biographical Methods in Social Research. London: Sage.
Rogers, C. (2007). Parenting and Inclusive Education: Discovering Difference, Experiencing Difficulty. Basingstoke: Palgrave.
Stanley, L. (1992). The Auto/Biographical I. Manchester: Manchester University Press.

Posted in biography, ethics | Print | 1 Comment »

25/07/2009 by lizit.

This is the first of 2 blog posts I have it in mind to write - the other will be looking at structuring and planning my study with ethical considerations and methodology in mind.

I’ve just read a number of articles (see below) that are connected with online research ethics and I want to capture some of the main points that seem of most relevance to me and to the research I am planning.  This is very much a first take, but I hope the process will help me focus on the ethics permissions I will need, the arguments that need to be constructed, and the nature of the contexts I will be working in.

One of the main things that comes across in all the articles is that it isn’t possible to easily transfer physical world practices into the virtual world. Some things which are important in the physical world may have less relevance in the virtual world and vice versa. Similarly, it isn’t possible to lay down hard and fast guidelines for all virtual world and online communities research both because virtual worlds and online  communities differ from each other and ethical considerations have to be thought about alongside the planning of the study and its methodology.

A second, and equally important consideration is that informed consent may mean something different to participants in an online setting from what it means in a physical world setting. The very honest account (Reid, 1996) of how research can impact an online community is worth consideration, and although I do not anticipate handling the kind of sensitive data Reid did, nevertheless possible unintended consequences for participants do need to be considered.

A third point made in several places is the need for familiarity with the online environment being studied - the dangers of simply using a virtual environment for data gathering without understanding the dynamics of the community are described. It is essential to take time to become an accepted participant. In general, the online communities I am focussing on are ones in which I have had a lengthy engagement - I have been a member of some of the 2-D email lists for around 10 years and I have been active in the Second Life community for nearly 3 years. On the other hand, I have not participated directly in Club Penguin and my knowledge of the environment is restricted to a single demonstration and 2 presentations; this may have implications for whether or not to include CP in my studies and needs to be thought about and discussed.

I found the diagrams (McKee & Porter, 2009) very useful in focusing my mind, especially when combined with the application of ethical considerations to all parts of the research process (Knobel, 2003).  Both articles recognise that the principle concern focus or IRB is on potential risk to human subjects by way of loss of privacy, harm of exposure, ridicule and embarrassment. In the online world, effects on the community are equally important and possible reactions of the community leading suspicion of researchers and unwillingness to participate in other projects or to continue involvement in current one.

An early consideration is the nature of the place/space in which the research is being undertaken. Perceptions of virtual environments vary, but I would argue that Second Life (and virtual worlds in general) are places rather than just spaces and that the nature of the community in the email list groups I am interested in moves these also from more than just places. The next question is whether the places are public or private.  Some of the email lists are private in that a moderator has to approve membership of the list and a username and password is needed to access the archives, while others are public in that anybody may join and access the archives. Second Life is more complex in that some areas are very definitely open access while others may have some restrictions, either by requiring a group membership in order to enter them, or because they are only used by particular groups while remaining open access. It is also possible that the development of the new adult regions and opening up more of the grid to u-18s (I’m not quite sure how or when this will happen) will affect access.

Linked with the public/private dimension of places is the sensitivity of data and whether it is obtained publicly or privately. Much of what I want to do in Second Life will involve observation in public spaces but the edges become blurred with casual conversation relevant to my research in those spaces.  Clearly any interviews, wherever they are undertaken, cross the boundary to private as do any focus group discussions.

A further element of privacy is avatar identities.  Although these are aliases, there are avatars who are well known within the Second Life community and beyond. Similarly, some avatars are instantly recognisable if shown in images.Thought will need to be given to what has to be anonymised and when it is appropriate to use an avatar name, for example quoting from a formal interview by permission when the informant has been recruited because of their high profile position in the SL community. I would see this paralleling the physical world where anonymity should be the norm, but expertis might be specifically cited.

I also need to think about my own identity.  My SL profile does not hide who I am, but it could be more specific an probably needs re-writing to provide more information and pointers to where more information can be obtained, eg a link to this blog. I may also want to use my profile to invite contact from people interested in being involved in my research. A notecard providing a summary would be useful to be able to give to interested avatars. I also need to pay attention to my role - when am I in SL as researcher, when as resident, when as teacher, etc.

The articles give attention to informed consent but none of them actually suggest how this should be obtained, not dealing with the sticky issue of avatars being seen as persons in their own right, rather than as substitutes for the person operating them. In this respect, Boellstorff (2008) is helpful as he provides a copy of the consent form he used which was signed by avatars using their screen names and he had no link to the human identity behind the avatar.  This also avoids any potential conflict with the Linden Labs Code of Conduct in respect of avatar privacy.

In Second Life, the procedure for getting permission is relatively clear. Apart from needing ethics committee approval, it is individual avatars who are involved. The position is less clear with email groups. Public email lists are public places, but if individuals are being quoted, it is only appropriate to ask their permission.  Does the same apply when a snippet of conversation is used to illustrate a point, or a conversation summarised without reference to the posters? For private email lists, I assume the initial approach should be to the moderator with a clear explanation, and possibly examples of how I might use data, prior to any approach to the list.

The final diagram in McKee and Porter is useful in suggesting that the 3 dimensions of degree of interaction, topic sensitivity and public or private have to be considered in determining whether informed consent is necessary in any given situation.

Knobel focuses more on planning the study and my next posting will be initial thoughts on planning, methodology and the ethical considerations.

Articles and books referred to in preparation of posting:

Boellstorff, T. (2008). Coming of age in second life: an anthropologist explores the virtually human. Oxford: Princeton University Press.
Cavanagh, A. (1999). Behaviour in public? : ethics in online ethnography. Cybersociology, 6. Retrieved from http://www.cybersociology.com/files/6_2_ethicsinonlineethnog.html
Knobel, M. (2003). Rants, Ratings and Representation: ethical issues in researching online social practices. Education, Communication & Information, 3(2), 187.
McKee, H. A. & Porter, J. E. (2009). Playing a good game: ethical issues in researching MMOGs and virtual worlds. International Journal of Internet Research Ethics, 2(1), 5 -37.
Reid, E. (1996). Informed Consent in the Study of On-Line Communities: A Reflection on the Effects of Computer-Mediated Social Research. The Information Society: An International Journal, 12(2), 169 - 174.
Sheehy, K., Ferguson, R. & Clough, G. (2007). Learning and teaching in the panopticon: ethical and social issues in creating a virtual educational environment. International Journal of Social Sciences, 2(2), 89-96.

Posted in ethics, Second Life, planning | Print | 2 Comments »