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Post by Alison Davies on Jul 24, 2015 10:57:40 GMT
My name is Alison Davies. I am a Research Associate (RA) on a collaborative project entitled: ‘Narratives of Attention Deficit Hyperactivity Disorder (ADHD): A qualitative study of women’s narrative accounts of living with ADHD’. The aim of this project is to explore how ADHD impacts on the lives, relationships and social identities of women who have a diagnosis of, or self-diagnose as having, ADHD.
The team includes Dr. Lindsay O’Dell and Professor Paul Stenner, both from the Open University, and Dr. Mary Horton-Salway, formerly of the Open University, and now working as an academic consultant. The project has been funded by the British Academy/LeverhulmeTrust.
We are really keen to find female, adult volunteers who have a diagnosis of ADHD and who are willing to give up about one hour of their time to take part in either a face-to-face or telephone interview (at our expense, of course). During the interview, volunteers will be asked about their experiences of ADHD. Girls and women with ADHD are an under-researched area of investigation and few studies have examined the personal accounts of adults with ADHD. Therefore, this research will contribute to a newly emerging body of knowledge on the topic of adult ADHD with a unique focus on women and girls with ADHD.
The research project has received ethical approval from the OU Humans Participants Committee and the research will be carried out according to British Psychological Society ethical guidelines. The research is planned over 12 months, commencing April 2015, and finishing February 2016. Finalising the project report, publicising and disseminating of key findings will take place between February 2016 and March 2016.
We are hoping to conduct the interviews as soon as possible (preferably in August and September). If you are interested in taking part, we would be very grateful and ask that you contact me at the email address below. Additionally, if you would like further information about the project, then please do get in touch. My details are:
Dr Alison Davies
Faculty of Health and Social Care
The Open University
Walton Hall
Milton Keynes
MK7 6AA
Many thanks for your time and interest in this project. I hope to hear from some of you soon.
Kind regards,
Alison
You are also welcome to contact Lindsay O’Dell, the project lead on Lindsay.odell@open.ac.uk
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Post by contrarymary on Jul 25, 2015 2:51:11 GMT
really glad to hear about this research
there's a breadth and depth of experience demonstrated on this forum almost daily, and it's brilliant to be able to channel something of this into qualitative research.
my own concern would be around the logistics, esp using the phone... many of us find this particularly hard because of aural processing, working memory etc. but interested, and wonder if anyone else is up for takng part...?
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Post by greyblanket on Jul 25, 2015 9:43:04 GMT
Yes I am definitely interested. I will try to remember to make contact.
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Post by vagueandrandom on Jul 25, 2015 10:37:36 GMT
I agree with contrarymary about the phone thing. I could never explain why I find using the phone really difficult and have been avoiding it most of my life. I'd never come across anyone else who had the same difficulties until I joined this forum and it seems that it's really common in people with ADHD. I would be interested in participating, just not on the phone! I'll add 'send email' to my list
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Post by Alison Davies on Jul 31, 2015 15:31:16 GMT
Hi
Just a quick thanks to those of you taking an interest in this project. Some of you have replied directly to me, so thanks for that. For those of you who are, perhaps, still thinking about it, I would really like to encourage you to take part. The more narratives we have, the richer the data. It was interesting to read your comments about using the telephone, that certainly gave me new insight into data collection methods. The Open University has several hubs in London, and so, if you are based there, then it should be pretty straightforward to organise a room for a face-to-face interview (at a mutually convenient time). We will, of course, reimburse the cost of any travel.
I do really hope to hear from you.
Many thanks, Alison
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Post by Alison Davies on Jul 31, 2015 15:33:08 GMT
Hi
Just a quick thanks to those of you taking an interest in this project. Some of you have replied directly to me, so thanks for that. For those of you who are, perhaps, still thinking about it, I would really like to encourage you to take part. The more narratives we have, the richer the data. It was interesting to read your comments about using the telephone, that certainly gave me new insight into data collection methods. The Open University has several hubs in London, and so, if you are based there, then it should be pretty straightforward to organise a room for a face-to-face interview (at a mutually convenient time). We will, of course, reimburse the cost of any travel.
I do really hope to hear from you.
Many thanks,
Alison
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Post by contrarymary on Jul 31, 2015 19:39:50 GMT
thank you for the reminder and don't hesitate to remind again - working memory is not our best subject
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Post by JJ on Aug 1, 2015 12:34:23 GMT
I'd be interested in helping too - and would definitely prefer face to face. I find the phone too hard as well - it takes a massive amount of concentration to use the phone and I find it very stressful.
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Post by Deleted on Aug 1, 2015 19:50:18 GMT
Edit: Preliminary note to the "researcher":
Please could you remove your gmail address and provide a university contact address for enquiries. None of us know you from Adam; if you want to establish credibility then let's do things professionally. It would be extremely unwise and potentially very unsafe for anyone here to arrange to give you an in-depth telephone interview based on contact with an unknown person behind a random gmail address.
Back to the regularly scheduled topic:
Hi Allison, count me as interested! IME, the BPS seems generally quite snooty over ADHD at the moment though and so, although this project sounds very interesting and positive in principle, I'd like to know a lot more before making a commitment. I'm still laughing ruefully at the BPS PG student award that recently went to a rather vapid project called "Because you're worth it!", about the supposed marketisation of ADHD to women via Youtube videos. (AADD-UK Pro-tip: it's not all about the hair flips. Sidenote to any BPS lurkers: Fuck off and stop patronising us....) Some specific questions : 1 Can you give us some direct links to bios of the researchers, please? Your project sounds really interesting but I'd like to know more about the researchers and sponsors before making a commitment. I've never heard of any of them. 2 Can you give us some more background to the project please, including more detail about the aims and hypotheses that you sent to the various research committees and the ethics panel. "Experiences of Women with Adhd" is quite a broad ranging topic. What are your thoughts so far on how this study might pan out? What preparation have you done to acknowledge and work with the pre-existing assumptions and biases of the interviewers and data analysers to ensure that you give due respect to your human participants? 3 Please can you be more transparent about what's in this for us and what's in it for you, beyond any warm fuzzy feelings we may all hope to derive from the interview experience? (i) I take massive issue with the fact that you are offering absolutely no financial compensation to the women that you expect will generously share their stories with you. Please don't respond with a pity party about poor hard-done-by researchers. I fully understand how the research funding system works and I realise that this project is likely not being funded by Big Ph£rma, but I also know that many psychology departments these days offer at least the pro rata minimum wage to research participants (eg, Cardiff University Psychology Department uses www.prolificacademic.com to recruit paid participants to many of its own projects) Seriously, check your privilege for a minute and then explain why you believe women should give up their time to talk to you for free? Is your research team made up entirely of unpaid volunteers? If not, then why would you disrespect other women by asking them to work for you under conditions that you would not accept for yourselves? As you will no doubt discover through your project, many of us women with ADHD are struggling with life, living on benefits or low incomes, and yet, as women, a common experience is that we are expected to suck it up and deal with the stress of our families and others, as well as our own life issues. In future, please don't replicate our daily experience by taking the piss out of us while we supply "rich data" to add to your research coffers. Offer a token payment next time, to demonstrate that you have empathy for us that proves you worthy of our time and talent. And given that we are where we are, can you make us an offer now to encourage our participation? How about a promise to every participant of an emailed full text copy of any journal article/publication resulting from the study, with a heads-up in advance of any press release being published on the Open University website? Because, frankly, while I want to believe the best of your team, and while I hope that your study makes an important contribution to ADHD research, as of now, any concrete benefits to us are very much yet to be determined. And once your final report hits the public domain, it is highly likely that our anonymised comments will end up taken out of context and used as clickbait for some bottom-feeding rag like the Daily Mail, just because that's what often happens to reports like this, despite all our best efforts and intentions. (ii) Tell us more about your ethics submission. Eg, How will you manage any negative feelings and consequences that might arise for any patients who find the interview to be distressing? What debrief services will you offer and who will deliver them, in case of need? One likely theme of the discussions may well be the very shitty health service provision in many areas of the country, so it will be best not to assume that local services are on hand to pick up any pieces following an upsetting interview. 4 For goodness sakes, please could you remove your gmail address from your post and provide a university contact address for enquiries. None of us know you from Adam; if you want to establish credibility then let's do things professionally. It would be extremely unwise and potentially very unsafe for anyone here to arrange to give you an in-depth telephone interview based on contact with a random gmail address. (edit, I am copying this to the top of my post and flagging this thread to the admin for their consideration) All of this said, I genuinely remain interested in your project and I wish you success. The women here are fabulous, all of them. I have often closed my laptop at night in tears, because I feel humbled and privileged to be in the company of so many strong, intelligent, compassionate women (and men) with whom I feel "at home". But please just think on and remember that if you are lucky enough to recruit participants from this forum, then the privilege will be all yours. Ultimately, we don't need you to give expression to our voices, but you apparently need us. The sisters here have been doing it for themselves for a long time already and will continue to do so, with or without you.
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Post by JJ on Aug 1, 2015 22:30:28 GMT
@pelargonium makes some important points and I'd like to know more before committing,
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Post by contrarymary on Aug 1, 2015 22:39:48 GMT
c apols for brevity, further info here
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Post by petra on Aug 1, 2015 23:10:58 GMT
Also, only a one hour interview? That wouldn't give me time to even scratch the surface! I could talk about it all for ever and a day.
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Post by petra on Aug 1, 2015 23:48:02 GMT
Thanks for that, Mary. So Professor Paul Stenner is supervising the project. Let him get his arse over here then to answer as to why *he* believes that all the little wimmin here owe it to him to contribute our time to his research project for free. According to his OU webpage, Prof. Paul has "contributed to the development of a critical and reflexive approach to social psychology that takes process and relationality as keynotes at that is known as a transdisciplinary psychosocial approach." Come on over here, Paul, and let's get critical and reflexive together. Your misogynistic bollocks. Our chopping block. And we won't charge you a dime for the privilege. You're welcome, sunshine. Thank you..i haven't laughed properly in too long.
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Post by Deleted on Aug 2, 2015 0:00:46 GMT
I think we should pool our talent petra and develop a series of "How fucking dare they?!" therapy groups for female women living with ADHD and misogyny.
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Post by JJ on Aug 2, 2015 0:22:16 GMT
I'd totally love to be part of a group called "how fucking dare they" Excellent excellent idea
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Post by Alison Davies on Aug 6, 2015 16:19:19 GMT
Thanks for your interest in, and comments about, the project. It is being led by Dr Lindsay O’Dell who is an academic in the Faculty of Health and Social Care at the Open University. Please contact her for any queries about the project. Lindsay.odell@open.ac.uk
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Post by Deleted on Aug 6, 2015 18:55:52 GMT
Our comments and queries are already laid out here and Lindsay is welcome to join the conversation if she wants.
Again, this is your project, and you have come to us seeking our help.
Why not come and join an open narrative discussion here about the concerns raised above, if you genuinely want to hear about our lives, and if you are genuinely interested in taking a critical, reflexive approach to your work?
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loisg17
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Post by loisg17 on Aug 7, 2015 12:23:13 GMT
Hi Alison
By 'diagnosis' do you mean actually having received a formal statement from a psychiatrist?
I've never had a formal diagnosis, although I tick ALL the boxes. Most of the mothers in the family group I belong to also know who they are, but haven't been graced with the right piece of paper either. My daughter has had psychologist assessment though - is that sufficient? She says she's quite interested.
Lois
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Post by Kathymel on Aug 27, 2015 17:03:14 GMT
I'd totally love to be part of a group called "how fucking dare they" Excellent excellent idea Could we dust down the ninja costumes for this?
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Post by JJ on Aug 30, 2015 0:29:24 GMT
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Post by JJ on Aug 30, 2015 1:27:01 GMT
Meant to say Kathymel - lovely to see you here
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Post by JJ on Sept 7, 2015 16:54:09 GMT
ATTN WOMEN WITH ADHD - PLEASE READ this thread before participating
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Post by Deleted on Sept 7, 2015 18:24:57 GMT
I've had sight of the email from Alison Davies and, in addition to the content issues described by JJ in the other thread, I am shocked that she is contacting individuals directly using a gmail address. This isn't acceptable and doesn't offer volunteers any confidence that she is who she says she is, and doesn't offer them the data security associated with using a university email address and server. I have taken a full copy of this page and am going to raise concerns directly with the OU research department, which any member of the public has the right to do, if they have concerns. Please see attached the Universities UK Research Concordat which sets out the ethical responsibilities of UK universities and their researchers when conducting research with human participants: www.universitiesuk.ac.uk/highereducation/Documents/2012/TheConcordatToSupportResearchIntegrity.pdfAlso the British Psychological Society Code of Human Research Ethics: www.bps.org.uk/sites/default/files/documents/code_of_human_research_ethics.pdfIn principle, I am very supportive of health research, even just for its own sake, or for the sake of getting researchers started on their careers. But researchers must show integrity and demonstrate respect for their participants. As a process issue, I would suggest that an important narrative has already been written by you, on our behalf, when you refuse to address our concerns and you refuse to respect even our right to basic data security in your communication with us. Right there, you dehumanise us and turn us into a mere commodity, because, as your email says "we really do need volunteers". In your panic to meet your deadlines, you've made this all about you.
Please go away and have another think.
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Post by Alison Davies on Sept 8, 2015 9:03:59 GMT
Email address - I apologise for causing concern for not providing a safe OU email address. As I only have a temporary OU research contract, I do not have an OU email address. As I am the main interviewer, it just made logistic sense for me to put out my own email, but I understand how that is inappropriate, and I apologise if that has caused offence; it wasn't intended that way. I will be removing the gmail address asap, but in the meantime I ask any of you that still may wish to take part, or have any further queries about the project to contact Lindsay O'Dell at lindsay.odell@open.ac.uk
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Post by petra on Sept 8, 2015 12:14:17 GMT
@alison Davies. You are not listening to or hearing us.
And yet, you want us to be interviewed by you.
You are wanting us to open up and trust you with highly sensitive, personal accounts of our lives.
I might be an uneducated person, but even I can see the stupidity in this.
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Post by Deleted on Sept 8, 2015 12:19:28 GMT
I appreciate your apology about the gmail address Alison, but it is more than a month since I raised the issue of data security and the need for a university email address* and you chose to ignore me and then play fast and loose with my friends' personal data Even now, you still seem to be overlooking the many other very real concerns we have raised.
Have you read JJ's concerns in the thread to which she has linked? Have you thought about the concerns we raised over a month ago?
Seriously, I am trying to engage you here in some intelligent reflection on the process of your research. You purport to be taking a psychosocial constructionist approach to research but, in refusing to respond to our basic concerns as potential participants, you seem to be regarding us rather more as lab rats than human beings.
Can you understand how frustrating that might be for us?
Can you understand how ironic it seems to us that you want us to entrust you with our personal stories so that you can construct a narrative story of our experience, in a context where you won't even acknowledge our preliminary concerns? Please think about this and consider talking to us about it. For your own benefit as an academic researcher as much as anything else.
The narrative I am constructing to make sense of this situation is that, when you first discovered this forum, it seems likely you saw it simply as a resource from which you could obtain individual participants to take back to your lab for analysis. Some of us challenged you straight away but, playing a numbers game, you seem to have decided to disregard our questions and press on, using the information you had already gleaned to make personal contact with likely participants.
The problem is that you somehow failed to notice that we here are not just a bunch of individuals sitting around at your service, but we are a community and many of us have since carried on conversations about the issues that your fly-by posting has raised for us.
Our concerns aren't going to go away just because you ignore them. You can jump into this space and join us in working out a way forward, if you like. Otherwise I will pursue my complaint to your University administration because we are worth much more respect than you have shown us so far.
*The OU really must provide you with a university email address and access to data storage on their server for the sake of your own and your research participants' security. This should have been arranged by your Head of Department before you commenced your honorary contract and he should follow this up for you, stat. You shouldn't be publicising your acceptance of a British Academy/Leverhulme Award and in the same breath disclosing that your institution has utterly inadequate data protection facilities. Just... no. It doesn't reflect at all well on the OU.
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Post by Deleted on Sept 8, 2015 12:47:25 GMT
@alison Davies. You are not listening to or hearing us. And yet, you want us to be interviewed by you. You are wanting us to open up and trust you with highly sensitive, personal accounts of our lives. I might be an uneducated person, but even I can see the stupidity in this. petra: providing TL;DR summaries of others' verbiage is your gift. Enough of the "uneducated person" nonsense though, please, fabulous woman!
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Post by Deleted on Sept 8, 2015 15:30:50 GMT
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Post by Foxtrot on Sept 8, 2015 17:40:52 GMT
'We are also interested in how clinical diagnoses and biographical accounts constitute the foundation for identifying with a label of ADHD in adulthood.' Huh? What does this mean? The word 'label' seems so loaded in this sentence. Thank you for all your work and posts on this jj and @pelargonium Having read the links I'm also deeply concerned about the ethics of those involved in this research and I really appreciate you both looking out for everyone.
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Post by Deleted on Sept 8, 2015 18:13:17 GMT
To be fair, I think much of the language used in the blurb is fairly standard for this kind of qualitative research. And as I have said on the other thread, I have no problem in principle with embracing both psychiatric and psychological approaches to understanding ADHD and I welcome respectful debate and conversation.
But yeah, "label" is problematic here for me too, because of the way the term has been used historically in ADHD research and in clinical practice (and in the Daily Mail).
My overall concern with the ethics of this research team though is not because I think they are horrible people who have set out to deceive us. It is more a concern about the casual sense of entitlement that I perceive in the way the research project was initially framed, and in the way that not one of the researchers has made any attempt to properly address the issues that we have raised. Clearly, we were expected to comply with the request for "volunteers", and probably with some gratitude to them for offering to speak to the world on our behalf. But we didn't comply and the team don't seem to know what to do next, now that we have challenged them.
This really is an excellent example of the kind of liminal experience in which Prof Stenner claims a research interest. We've reached an apparent impasse, the clock is ticking on the project timescale, and it doesn't look as though the team have been inundated with volunteers from other sources, so... what happens next....?
Twenty years ago, around the time that ADHD actually was a condition mostly associated with boys, the internet was in its infancy, journals were printed in hard copy only, and it would have been harder to recruit participants for a study like this but it would have been almost certain that if you did find women with ADHD they would likely be isolated and grateful for the chance to chat to a nice researcher. If it all went wrong and the Daily Mail got in on the act of disseminating the research outcomes, then at least you'd have the comfort that today's news quickly becomes tomorrow's chip paper. And the chances are no-one outside academia would have read the research paper anyway, so no harm, no foul.
It's 2015 though and the world has moved on.
And this song's for you, Paul Stenner...
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