Lesbian Health Survey- Can you help this PhD Student?? PLEASE!!

[Hokie Girl]

Did you know overweight and obesity influence the onset of other chronic diseases, such as diabetes, stroke, heart disease, osteoarthritis,
as well as breast and colon cancer?

I am a PhD student at Virginia Tech, in the Department of Human Nutrition, Foods, & Exercise. My focus is in behavioral science, that is nutrition
and physical activity habits, as they influence overweight and obesity. My dissertation, specifically, is dedicated to the investigation of overweight/obesity within the lesbian community. As a lesbian, this is a topic about which I am passionately dedicated to making a difference, and conducting this study is one way I can make a positive contribution in my community. But, to do so, I need your help!

HERE IS HOW YOU CAN HELP:
Our community is an extremely difficult population to identify and to research. As a result, not much is known about our health and wellness behaviors, rendering us particularly vulnerable when it comes to treating illness and disease. My hope is that my dissertation findings will be a starting point for addressing important health issues within the lesbian community. As such, if you would be willing to take the following anonymous survey (it will take approximately 30 mins) regarding your leisure-time activities and eating habits that would be great. Additionally, if you would be willing to pass it along to other lesbian friends and family, that would be sincerely appreciated! My hope is recruit 250 respondents; and, currently I have about 80 respondents.

Lastly, although most importantly, THANK YOU!


The survey can be found at the following link:
http://www.surveymethods.com/EndUser.aspx?84A0CCD687C6D5D086

[Soft*Silver]

can someone validate this is legit? i clicked and got a strange page, with Next on it. Call me paranoid but it could be a virus or it could be a scam or it could be a group trying to get information on our community.

The profile is weak, the information is vague and they just joined.

Did they approach Jack or Medusa? Or any of the mods? Ethically that is what a student or researcher should and professionally would do.

[turasultana]

click thru - it's a survey.

I'm at work so I haven't done it. While I can't attest to who the person is, and though it says the university name etc (VIRGINIA POLYTECHNIC INSTITUTE AND STATE UNIVERSITY), I can only say it's a survey. It doesn't seem at first glance to ask any identifying info, looks like it will aggregate data.

its not going to steal your soul far as I can tell. :)

I'll probably do it when i get home.

[Hokie Girl]

I am so sorry to have scared you. This is legitimate. I am a lesbian; however, I have never been on this site before. This survey is also posted on the Bella/Spinsters Author's Forum, where someone recommended this site as a possibility to have women complete the survey.

I did send an email to the admin yesterday regarding my survey. Again, MANY APOLOGIES. I didn't know how often the moderators read through their mail. On some sites, I've still not heard back from admins. So, I sincerely apologize.

Although my description may seem vague in the posting, just follow the link to surveymethods.com, there is a consent form more descriptively detailing the entire study.

Again, I am REALLY sorry to have caused such angst. I am truly a PhD student, just trying to gather data to graduate in December.

Best,
Hokie Girl

[Soft*Silver]

Hokie...its ok. I am just not a trusting person in regard to cyberland. I have had one too many viruses and worry too much about the moral majority and their list makings. When I hear an ok from Medusa or Jackhammer or a mod, I will take the survey....

[SuperFemme]

i'm curious if the survey stat's are going to be compared to women of average weight who are also at risk for chronic diseases, such as diabetes, stroke, heart disease, osteoarthritis, as well as breast and colon cancer?

it bothers me that the finger pointing about these issues is always directed at overweight women.

not to disrespect your survey Hokie Girl, just curious if all variables are being computed. are you going to include statistics of those surveyed who are overweight yet lead healthy, normal and active lives?

[Hokie Girl]

I appreciate your inquiry, SuperFemme. Thanks for bringing that to the forefront. Actually, this is a survey for all-weighted women. That introduction was just to demonstrate why research on overweight and obesity is an important health issue. . . and not just a "social" or "socially stigmatized" issue. There are serious chronic diseases related to overweight and obesity, and that is why I am studying our community. Obviously, a historically understudied population, sexual minority women and body weight is virtually invisible in the health and wellness literature; focus on our community in the behavioral health aspect of this issue (physical activity habits, healthy eating habits, alcohol consumption, etc. . . ) is minimal and the outcomes mostly equivocal.

So, that was a very long answer to say, "Yes! All weights are being investigated in my study." I'm really attempting to gain understanding about the environmental, behavioral, and cognitive influences and how those three areas interact within the lesbian commmunity. Still not very succinct. . . :)

I welcome any other questions, concerns, etc. . . I am so passionate about this study not only because it's important, but it really is my chance to make a positive impact within my community. - Lastly, as I told the Bella/Spinsters folks, I would be happy to post my results here, once they are finalized.

And, I am not easily offended, Softness. ;) I absolutely understand your concerns. I just wanted to be sure you knew I was legit. You can also go to www.hnfe.vt.edu follow the links to "Research" and then to the Translational Obesity Research Program- look under "grad option and students," and you will find my profile there. I was also a Tarheel, if that will help you find me on the site.

THANKS so much for the feedback and questions. I'm kind of new to the listservs. . . haven't had much of a social life the past three years! ;)

HG

[SuperFemme]

I appreciate your inquiry, SuperFemme. Thanks for bringing that to the forefront. Actually, this is a survey for all-weighted women. That introduction was just to demonstrate why research on overweight and obesity is an important health issue. . . and not just a "social" or "socially stigmatized" issue. There are serious chronic diseases related to overweight and obesity, and that is why I am studying our community. Obviously, a historically understudied population, sexual minority women and body weight is virtually invisible in the health and wellness literature; focus on our community in the behavioral health aspect of this issue (physical activity habits, healthy eating habits, alcohol consumption, etc. . . ) is minimal and the outcomes mostly equivocal.

So, that was a very long answer to say, "Yes! All weights are being investigated in my study." I'm really attempting to gain understanding about the environmental, behavioral, and cognitive influences and how those three areas interact within the lesbian commmunity. Still not very succinct. . . :)

I welcome any other questions, concerns, etc. . . I am so passionate about this study not only because it's important, but it really is my chance to make a positive impact within my community. - Lastly, as I told the Bella/Spinsters folks, I would be happy to post my results here, once they are finalized.

And, I am not easily offended, Softness. ;) I absolutely understand your concerns. I just wanted to be sure you knew I was legit. You can also go to www.hnfe.vt.edu- (http://www.hnfe.vt.edu-) follow the links to the Translational Obesity Research Program- look under grad students, and you will find my profile there. I was also a Tarheel, if that will help you find me on the site.

THANKS so much for the feedback and questions. I'm kind of new to the listservs. . . haven't had much of a social life the past three years! ;)

HG


coolness. i'm in. thanks for coming in and discussing.

[Corkey]

What about those of us who don't identify as lesbian, does your research include FTM's MTF's or just female bodies folks?

[Hokie Girl]

Another GREAT question, Corkey. You are correct; it has been created with parameters that include only the female-bodied folks. But that makes me think for the next step in researching this topic. THANK YOU!

PS- As an aside, you all are providing me really good practice for my defense!

[Corkey]

Even though FTM's and Intersexed, retain some chromosomes of women the XX some have XXY, some not, male hormones will have an effect on certain diseases, so you may want to include that in your research. Good luck.

[ComparedToWhom]

This UVa'er made an exception and helped you out Hokie. (Shhhh, don't disseminate that, the Wahoos might ban me--lol!). After completing your survey I have a few items of feedback for you, fwiw:

Regarding question #21 (Eggs), either the question or the choices need expounding. For example, I eat 6 eggs (4 being egg whites) three times a week. Would I check "3" for total number of times I eat eggs, or ">5" for total number of actual yolks I'm downing per week?

There are several places where either "none", "not applicable", or additional choices would have been my answer, such as with questions #36 and #73. (The latter doesn't account for those of us who are self-employed and work from home).

Question #159 assumes I am overweight. Hardly.

Question #173 choices of answers were "Lesbian", "Bi-sexual", or "Heterosexual". What about those where none of the three are applicable? Unfortunately, the survey wouldn't let me continue without selecting SOMETHING with any of the above so your findings will be skewed. I'd forward the link on to my peeps but I know for absolute certain they will have the same issues (birds of a feather fly together ya know). I registered to be notified of updates to the survey (I think that's what it was) so if you do update it, please let me know. Best wishes to you in your VT educational pursuit, Hokie.

ComparedToWhom

[Toughy]

Another GREAT question, Corkey. You are correct; it has been created with parameters that include only the female-bodied folks. But that makes me think for the next step in researching this topic. THANK YOU!

PS- As an aside, you all are providing me really good practice for my defense!

I understand this to mean that FtM's could participate, but not MtF's.

What about intersexed folks? How are you defining female bodied?

[Hokie Girl]

Okay. . . again, THANK YOU for your feedback. This is very helpful and extremely useful for future studies.

First, several of the scales included in this survey are reliable and validated measures created by scholars much more skilled and educated than I. So, for those questions, we are locked in. . . and for the questions that excluded some folks' identities, I sincerely apologize. We needed a starting point, and in reviewing the literature, it has been well-documented that bisexual females and lesbians did not have distinct enough differences in the areas measured within this survey to not include both identities. While I realize these identities do not even come close to encompassing all female identities, we had to create initial parameters to make assumptions about what these data will reveal. So. . . I do understand these concerns, and they are valid criticisms that will be considered as I move forward in my career.

Truly, I thank you for all the feedback! I'm excited that so many people are interested in topic. That is very encouraging!

Best,
HG

[Toughy]

You didn't answer my question so.........

I was involved in design, implementation and follow up of clinical community based pharmaceutical research for years. I also was Chair of an Institutional Review Board and served on other IRBs that reviewed both clinical and KABB surveys. Research is not foreign for me. I also wrote and evaluated Informed Consent documents. I have also been a volunteer/participant in clinical and non-clinical research.

How do you define lesbian? This is an important point and should have been covered by your IRB. Your consent form does not define lesbian. Nor have you answered any questions concerning your definition of lesbian and what female bodied individuals meet your criteria for a lesbian.

Your Consent Form also does not give references to what studies were done that validated your premise that lesbians as a whole have health outcomes that are less than the outcomes of non-lesbians, based on your parameters. What data do you have to support your premise? A summary from you is not necessary. Just a link or two or three to the references supporting your research question.

I entirely resent the fact you will not allow potential participants to review this survey before answering the questions. This would have never passed any IRB I ever have been involved with. Participants/volunteers have a right to read all the question before they make a decision about participation.

KABB surveys require sophisticated questions and answers. How those questions and answers are framed significantly affects the outcomes portion of your analysis.

I would suggest that despite the approval given from your IRB, that you have NOT provided informed consent for participation.

Be glad I am not on your thesis review board nor was I involved in your IRB review. So far as I know given the information you provided, you are greatly lacking.

[suebee]

Just completed the questionaire. I'd just point out that some of the questions don't give a valid option given previous questions. For instance question 36 assumes that the subject has endulged in 5 or more drinks in one sitting when I'd already answered that I drank less than that. Just one example, but some other questions present no option given answers to previous questions.

The whole section concerning "your neighbourhood" seems to presuppose urban living.

And of course, you're presuming we all live in the states. I'm Canadian. SOMETIMES known as the 51st state, but don't believe everything you hear. ;)

Good luck in your research!
Sue

[Melissa]

I didn't really pay much attention to this survey when it first went up. But since Toughy has decided to be so nasty about it I'm going to go take it. This from a female bodied woman who ids as lesbian and has for nearly 20 years (even though some people don't seem to think I'm entitled to that id any more because I now partner with an FTM). You know we could go round and round on this survey all we want but my guess is if you id as lesbian and female bodied you can go take it if you want to.

Melissa

[Toughy]

I didn't really pay much attention to this survey when it first went up. But since Toughy has decided to be so nasty about it I'm going to go take it. This from a female bodied woman who ids as lesbian and has for nearly 20 years (even though some people don't seem to think I'm entitled to that id any more because I now partner with an FTM). You know we could go round and round on this survey all we want but my guess is if you id as lesbian and female bodied you can go take it if you want to.

Melissa

I was not being nasty. I simply put on the hat I would wear if I was sitting on the Institutional (Ethics) Review Board that is required by law to approve this KABB survey.

Asking simple and hard questions about using us as guinea pigs for public health surveys that affect what health care services are available to 'lesbians' is not nasty. It is a requirement.

I find any and all researchers who will not answer simple questions, much less hard questions to be suspect regardless of sexual orientation or gender identity.

edited to add: Melissa.......I was not asking for your definition of lesbian (as far as I am concerned you are a lesbian if you say you are). The researchers definition of lesbian is what is important. KABB surveys are delicate instruments given to huge amounts of false data if the definitions of the researcher are different than that of the participants.

additional edit...........and please don't get me started on what you valid information you can find with an n of 250. What statistical evaluation are you doing for this survey. It's not a study. It's a dissertation survey.

[Melissa]

I was not being nasty. I simply put on the hat I would wear if I was sitting on the Institutional (Ethics) Review Board that is required by law to approve this KABB survey.

Asking simple and hard questions about using us as guinea pigs for public health surveys that affect what health care services are available to 'lesbians' is not nasty. It is a requirement.

I find any and all researchers who will not answer simple questions, much less hard questions to be suspect regardless of sexual orientation or gender identity.

edited to add: Melissa.......I was not asking for your definition of lesbian (as far as I am concerned you are a lesbian if you say you are). The researchers definition of lesbian is what is important. KABB surveys are delicate instruments given to huge amounts of false data if the definitions of the researcher are different than that of the participants.

additional edit...........and please don't get me started on what you valid information you can find with an n of 250. What statistical evaluation are you doing for this survey. It's not a study. It's a dissertation survey.

But you are not on the IRB board for this survey. The survey writer gave a link directly to her Univ, her program and her own bio with a picture. Her name and diss advisor name is on the survey. She needs this to complete her diss so she can graduate. I think that your attitude toward this creates a bad image of this site. If you have personal/professional problems with this survey you should contact the Univ and her advisor or the admin of this site and ask for the thread to be closed.

Melissa

[nycfem]

Hey, Hokie, I thought this might be of help to you: http://www.lindabacon.org/

[Toughy]

But you are not on the IRB board for this survey. The survey writer gave a link directly to her Univ, her program and her own bio with a picture. Her name and diss advisor name is on the survey. She needs this to complete her diss so she can graduate. I think that your attitude toward this creates a bad image of this site. If you have personal/professional problems with this survey you should contact the Univ and her advisor or the admin of this site and ask for the thread to be closed.

Melissa

So I am, as a potential participant/volunteer in this survey (it IS NOT a study), supposed to just not ask questions about the survey? I, as a potential participant/volunteer am just supposed to shut my pretty little mouth and not ask questions of clarification about a survey for an academic dissertation.....be someone's guinea pig so they can call themselves Doctor......that has the potential to affect my ability to access appropriate health care?

As a potential participant, I cannot and will not put aside my years of experience in this field. Trust me........nobody wants me in their clinical trials or KABB surveys. They hate me. I ask the hard questions. I demand referenced information. I demand access to all information the researchers have. It is my right, if I am to volunteer my body or my experiences about my health to some academic in some institution of higher learner.

Her credentials and bio and those of her advisors are nice to have, but have really no relevance to Informed Consent documents. The Informed Consent document she provided did not answer my questions, nor has she answered my questions. As a potential volunteer/participant this is not acceptable and I have no choice but to not participate and suggest that anyone who asks me about this not participate.

Questions are never wrong. Avoiding questions or not fully answering questions is cause for stepping back and reconsidering.

A survey of 250 'lesbians' (without a definition) that the researcher proposes might affect the quality and kinds of health care I receive definitely requires close scrutiny. 250 self defined lesbians hardly provides any statistical significance in future health care for lesbians. It might however justify her dissertation conclusions in the minds of her advisory board. 250 lesbians answers to a poorly prepared questions and IFC documents should never affect my health care. The grade her advisors give her for this is entirely on them.

By asking me to take off the IRB hat is like asking me to cut off my head. IRB is about ethics. Ethics are who I am personally in the world. The totality of my experience drives my questions.

[Admin]

All,

I don't want to see this discussion devolve into a thing where the site is now responsible for the behavior of one or two members.

The person who posted the survey did email me and ask for permission to post it. I was bombed with work stuff that day and did not answer the email.

Allowing people access to the site who want to use this community as part of a case study, surveys, or Doctoral studies is a very gray area for us. On one hand, I think it's important for the voices of our community to be heard. On another hand, we simply to not have time to validate every single survey request that comes across my desk (and there have been about 30 since we started this site).

Since this survey was posted before I had a chance to look it over, I left it up to the members to decide if they want to participate in it or not since we're all adults and capable of making our own decisions. If you feel that this survey is something that you want to participate in, then do it. If you think it's bunk, then don't.

Bottom line for me is that anyone posting a survey where they ask this community for input needs to be aware that we are a very smart bunch and will probably be asking questions. I think it's responsible of Hokie to hang around and answer those questions.

What I am asking of all of you at this time is to cut the personal swipes and nastiness out. Ask questions, have the discussion, or provide info but don't stoop to ugly behavior with one another.

Thanks,
Admin

[Nina]

I wonder if it makes sense for there to be a vetting committee for surveys?...
since there have been 30 requests since you started the site, it seems that it's an ongoing and active aspect of the planet...maybe there could be some members to whom the requests can be sent...these members can have decided upon the criteria to be used when deciding if the surveys are legit, and seem to fit the planet population...

if this survey request had been submitted to the admin, and the student didn't hear anything back, I wonder how she made the decision to go ahead and post the survey?...it just seems that if someone believes it's correct to ask permission/approval not getting a response doesn't (in my view) read as an okay to go ahead and post the survey...

I wouldn't participate in the survey for a number of reasons, so maybe I shouldn't say anything...there might be surveys in which I would consider participating, but not until (or if) I could be assured of their veracity...I have learned a great deal about the survey development process from reading comments made here, and I appreciate what I've read...

[SuperFemme]

adele learned new acronyms today. IRB and KABB.

neither have anything to do with public transit or irritable bowel.

it's been a productive day and now i can rest.

[Lynn]

Took the survey. Hope it's helpful. I also found that some of the questions lacked appropriate answers, and leaving them blank wasn't an option. I'm wondering how the data can be interpreted with any reliability when the information isn't valid (by which I mean the truth). Also wonder how helpful it is to base conclusions on how a person "appears" rather than on how a person identifies. Some of the cultural biases of the writer seem to be reflected in the way questions were worded. But. I'm no expert. I like taking surveys and I sincerely hope that this endeavor provides useful information.

[Hokie Girl]

I would just like to address everyone who has provided input on this topic, and the way in which I went about posting. Thank you for bringing these concerns to light.

I did ask permission, and I am sorry I didn't wait to hear back from the admin. I was not trying to be unethical; I was just ignorant to the practices on this forum and knew my intentions were not to be exploitive or disrespectful. I was excited to get started. Again, MANY apologies.

Honestly, Toughy, I just didn't see your initial post, when I went through and answered the newest ones. And, when I came back to check in, there was the long post you had written. So, I wasn't trying to ignore your question. In fact, I want to thank you for what you said. I appreciate your perspective and your in-depth knowledge of research, the process, and the protection of respondents/human subjects. You have brought to light the intricacies of surveying (and you're right, this is a survey). When using the terms "lesbian" and "bisexual" I was thinking women who self-identified that way, and although I have written this up in my paper, you are correct, I should have included it in my consent.

And, again, you're correct, 250 respondents, obviously, will not provide the needed information to change healthcare for lesbians. It is a dissertation project, from which I am hoping to learn and grow and think about many of the things you have pointed out here. It is an exercise to improve my skills and become a better researcher in the future. I am a student, and I am learning. And, the responses gleaned from this survey are being used as a starting point in trying to better understand the areas that need further investigation.

My sincere interest is trying to collect a small set of data to better educate me in this area and to learn how to improve research in this area. The admin is correct, this forum is an intelligent group. I very much appreciate the feedback I've received. I will discuss these issues with my committee and during my defense, so I thank you. As well, I whole-heartedly apologize for the heated debate I sparked by inadequately answering (or not answering) posts. Truthfully, there was no lack of honesty or deception being employed on my end. I will work to improve measures and wording of questions, etc. for future work. This project has been a great exercise to offer insight into how to improve such things, and I sincerely appreciate your input.

So, again, I want to thank you. I'm grateful for your honesty and knowledge. I humbly request your forgiveness. You have provided me with much to consider.

Best,
HG

[Toughy]

There is no need to apologize, however thank you. Your response is much appreciated.

I can be an exacting human being and I am terribly protective about any kind of clinical research or survey.

You used the terms 'respondent/human subject'. One of the things we fought for during my time as a health care activist was to never see the term 'human subject'. The term is dehumanizing. Folks who participant are not subjects, they are volunteers. I am glad to see that the term subject was not used in your IFC document. All the IFC documents I wrote or reviewed had to use the term participant or volunteer....never human subject. It is unfortunate that message seems to have never made it out of HIV/AIDS research.

I don't know if you are familiar with the Gay & Lesbian Medical Association (www.glma.org). They have a project called the Lesbian Health Fund that gives grants to folks who want to research lesbian health.

Again, thanks for your response and I wish you the best of luck in your dissertation. Hopefully, defending your dissertation will be a little easier based on the input of folks from this site.

edited to add: heated debate is a good thing......

[Hokie Girl]

Toughy,
Thank you for your reply!! I VERY much appreciate your diligence, dedication, and passion to these issues.

Just a quick follow-up. . . we do not use the term "human subjects." Like you, we use "participants," due to the lack of respect and dehumanizing quality of the term "subject." Because of your exacting nature (Yes, I did pick up on that!- :) And, really, I appreciate your directness and candor.- As an aside, perhaps I could pick your brain in the future, because your experience in this area is quite formative, and I think we'd have some good discussions.), I opted to say "human subjects" because, unfortunately, that is still the terminology commonly used within many research silos. But, we too (behavioral research folks), realize humans are volunteers, and as such, choose to participate in our research. This is a battle we fight over and over again. . . so while the use of "participants" may not be as widely used as it should, please know it is getting better! And, I'm glad we are on the same page with this one! ;)

And, thank you for your reference to the GLMA and LHF!

Best, HG

[Toughy]

I'm happy to let you pick my brain as long as I get to pick yours.........laughin......you can PM me anytime and we can exchange info.

Thanks for your diligence also. It's good to hear we did impact the idea of human subjects. Makes me feel a bit better....

I think I will do your survey based on this discussion.