Qualitative Interviews for Women w/ CAH

[Matt]

Hello everyone and thanks for creating a space for researchers to connect with individuals who are interested in helping improve our understanding. Please see the attached participant request below.

Best,
Matt

Researchers at Lehigh University’s Counseling Psychology Program are currently looking for women diagnosed with congenital adrenal hyperplasia (salt-losing or simple-virilizing types), aged 25-45, who would be willing to be interviewed over the phone for one hour as part of a confidential, qualitative investigation on health-related quality of life, mental health concerns and counseling. As treatment for CAH evolves, placing more emphasis on individuals and calling for the use of multidisciplinary treatment teams, we are eager to hear women’s insight on their experiences and recommendations for counselors. This study and participant request has been approved by Lehigh University’s Institutional Review Board. If you would like to hear more about the study please contact:

Matthew Malouf
malouf@<hidden>
(484) 532-7338

111 Research Drive
Iacocca Hall – Counseling Psychology
Bethlehem, PA 18015

[Sunshine1]

Hi Matt,

How are you going to make sure that someone actually has CAH? Could you please answer this one?

I could be someone that landed here from the solar system siruis and fancy that I have CAH along with enjoying Rasberry Jello.

I was disapointed that you didn't answer my post on the other board as those were experiences in my life that I would of liked you to comment on and I poured out my heart to you on all that and you didn't even bother to respond- I PUT OUT my experience and got silence back. Why on earth should ANYONE TRUST YOU !!!!!!!


You sounded hot on the phone and good luck with everything. It's to bad that you can't ....ummm pay us something like $250 for talking with you and that isn't unresonable because other times of studies do this. Heck if you get stopped by a survey taker in the mall :smile: even they offer $5 to 20 bucks and other types of places offer more.

Anyway - good for you for getting into the mix and I'm still trying to find someone to explore if I have cyclothemia but all they want to do is chatter about CAH for their own curiosity on my dime. Plus, I know that for sure that I have lupus ....test results ....who needs those.

Maybe you would like to put your survey out here in open forum?

Also, Please go to the http://caresfoundation.org as that is an international organization for CAH that could help you.

[Sunshine1]

Why the interest in CAH .......this way? Why is there NO interest in that CAH affects both MEN and women. Don't you care what men go through with this condition?

Do you know that most with CAH don't fit into the intersex definition as provided by the Intersex Society of America.

[Matt]

Hi Sunshine1,

Thanks for your feedback and interest in the study. As I understand it, on the other messageboard, posts for research are supposed to go through the board's moderator so I did not want to violate the terms of the board by posting there myself. However, you certainly raise a lot of valid questions and I'm happy to answer them for you or anyone else who is interested. However, my University's IRB has strict but reasonable policies regarding recruiting participants so I would ask that you contact me via the methods in my original post (AKA either by phone or e-mail).

Thanks again,
Matt

[Sunshine1]

I figured you wouldn't answer my questions here or on the other message board.

No, I'm not a participant as I've already helped tons of men and women complete their degrees off my hide.

You could of answered those questions on the other site as your first post cleared you to do that.

If you can't answer my questions here from the prior posts either then none of this is right.

Why aren't you interested in what men with CAH go through? Why aren't you interested in LOCAH? Define CAH for me. What is an adrenal Crisis? Why CAH?

[Melisma]

[QUOTE=Matt;13915]Hello everyone and thanks for creating a space for researchers to connect with individuals who are interested in helping improve our understanding. Please see the attached participant request below.

Matt, I wish you well in your study, and maybe it was just a typo or language gaffe, but just so you know, this space wasn't specifically created for researchers to connect with individuals who are interested in helping improve understanding. Although I'm sure some of us will be glad to help, it isn't exactly what we're here to do.

[Matt]

Hi Melisma,

I'm glad you posted (and also thanks for wishing the study well). From the perspective of counseling psychologists, perhaps the most important thing for a therapist to do is to gain understanding of individuals they work with and to challenge the assumptions and stereotypes our field might have about "groups" of people. As such, "understanding" and raising awareness is crucial for any applied work we might do or services we deliver. I saw the site's research request page with Betsy's post and simply wanted to say that I'm glad there are places online that are still receptive to research, especially given the somewhat controversal and stigmatizing history it has had in this context. As always, if you have specific questions about the study or it's aims, I'm more than happy to answer them and my contact info is in my first post.

Best,
Matt

[Sunshine1]

Matt,

What stereotypes do you have?