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An advice thread (because we haven't had one in a while)


Mlle. Zabzie

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So I need the Board's collective wisdom here.

As many of you know, my girls were born 10 weeks early.  They got amazing, outstanding, wonderful care in the NICU at the hospital where they were born.  In addition, I enrolled us in a study run by a couple of psychiatrists in the University to which the hospital is connected. The study was measuring whether providing additional support to families with premies, particularly related to bonding and what they call "nurture" improves outcomes for otherwise healthy premies.  We were assigned to the intervention group and got an amazing amount of additional support.  My girls are doing amazingly well so far for such early premies (I'm half afraid to say that though because the effects could show up later), and I have been convinced the study is on to something.  They are getting in results, and when we were in last time for evaluation (it continues through at least 5), they said that so fart the results are very promising and they have published some papers. 

One of the psychiatrists called me yesterday.  A reputable TV journalism outfit (that you have heard of) is doing a special on their work, and she asked me if I would agree to be interviewed.  On the one hand, I really, really believe in what they are doing, and think everyone with micro premies should get the sort of support I got as part of a standard of care. 

However, I have some concerns:

 

  1. How will my children be discussed and portrayed?  I am very, very protective of them.   I certainly wouldn't want any identifying information to be searchable with respect to them (almost even if it is positive).  I am going to talk to the University's communications expert, but I believe that I would like to be identified only by first name (even though my last name is different than theirs) and potentially have their names changed if they are used at all.  Am I being too paranoid here?  
  2. How would my interview be used?  I have some of the same concerns, and would want to understand how what I say would be used, what the agenda of the special-maker is, etc.  Some of my concerns would be alleviated by not using my last name, but I still want to understand this.
  3. Even if my name is protected, should I eschew being on television for professional reasons?  I think I have to clear this internally anyhow, but beyond that, is it just a dumb thing to do?
  4. This is more wishy washy, but one of the study psychiatrists (the one that I spoke to actually), is kind of a cold fish (which is kind of funny for someone so into nurture).  She is from old, old money, and is quite reknowned (has her own sanitized Wikipedia page).  Whenever I talk to her, I get the feeling that my every eyeblink is being observed, measured and catalogued and later recorded in a file somewhere for analysis (that is, that I'm a little butterfly pinned under a microscope). The thing that bothers me the most about her is that at least according to the interwebs, she was/is a huge proponent of "attachment therapy"/holding for autism (at least through the 1990s), though the University has disclaimed the practice and it is no part of what we do in the study.  I adore the other one I've interacted with though, and to be fair to the first doctor, the advice she has given me has all been good.  But the first doctor is not without controversy, so I would really again want to understand the agendas, how everything is being used.

Thoughts?

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1. Changing the names and not using last names seem to be standard practices in these cases, from the documentaries that I've seen. You might also consider asking them to without information on your geographic location, as well. And no, you're not being paranoid about it. Those are legitimate concerns as the finished product will be available forever.

2. I think that information also be made available to you. At the least, a phone call from the producer to answer these questions would seem courteous and necessary. In your place, I will make it clear that if I don't want to answer any of the questions in the process, I won't. So it's to their best interest to give me a list of questions and topics they want me to talk about ahead of time.

3. I can't think of any stigma that would be associated with it, but that's my perspective. It's not like it's alcoholism or something unsavory. But talking to your firm's HR (or whichever group is relevant) would be prudent.

4. This last part is difficult. At some level, once you do the interview, you will have to accept that they will edit and cut to fit their narrative. Unless it's egregiously misleading you probably don't have much recourse to challenge the finished product. So I think you're right to be concerned at this stage rather than to worry about it later. I would suggest getting the papers published from this project to see what the main thrust is. If the documentary is about the project, then the focus of the papers should be the focus of the program. That might be a good place to start figuring out what they're trying to achieve with the documentary.

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I wouldn't participate. You've already accomplished so much through and for this organization. If you feel uncomfortable about an interview, it will show on broadcast, which could come back as a negative portrayal in something you genuinely believe is a good cause.

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I'd be nervous too. I would participate only if I could view the segment before it airs and reserve the right to withdraw if I don't like it. Plus all the usual anonymity. I'm sure you could draft the contract.

The TV producer probably won't agree to it but that would be my precondition to participate.

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Isn't the answer self-evident? If you're this upset or worried about it then you shouldn't do it. 

Does it matter if you're being paranoid or not? Does it matter if you're overprotective of your kids? I think you are probably both. But so what? You're not weighing pros and cons here because, from your perspective, there appear to be zero pros. A con is still a con, even if it's unreasonable, so why torture yourself for no reason? 

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Yeah, I'm with guys, don't do it, unless you can get Isk's precondition, but I doubt they'd agree.

There is so much access to information about peple these days, no ned to add to it.

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As usual I am with Gillio. I know a few people who have had preemies and you will be busy enough just dealing with hospital visits for the next few months. Don't add extra stress to your life.

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