College Research Project

seawater86

I am a college student who is doing a project over the effects of Breast Cancer to the patients and their families. My mother has now had Breast Cancer 5 times and it has now metastasized to her lung. I am wondering how breast cancer affects other women. If anyone could please help me out by answering a few questions I would greatly appreciate it. Thank you

Sunris

seawater,

I would recommend that you post some particular questions? and see what type of responses you get ?

seawater86

Thank you,

Ok so here are some of the questions:

How has having B/C affected your life?
Do you have any family members who have had B/C and if so how has watching them go through it affected you?
Do you feel like less of a woman for having B/C?
How has B/C affected you emotionally?
How has it affected your relationships with loved ones?
Are you afraid of a re-occurrence and how that will affect your life?
How are you coping with the depression brought about with B/C that many women face?
Do you talk to others about getting checked?

hrf

It is important that a research project meet certain ethical standards. I suggest that you consult the moderators of breastcancer.org to see permission to conduct your study here. In the current format, it does not meet prescribed ethical standards for research and anyone answering the questions might find their privacy compromised.

seawater86

This is not a scientific research, this is basically a poll to see how Breast Cancer has affected patients. If anyone feels uncomfortable then they do not have to answer and I completely understand if no one answer these questions and I thank all of you for any help that has been or will be provided. Thank you for your time,
seawater86

seawater86

If there are any questions listed that anyone feels comfortable answering it would really help out alot. Not all the questions need to be answered. Please help.

hrf

If you are doing research for a college project, that does indeed fall under the ethical guidelines and I'm sure your college professor can help you with that. These discussion boards are a place many of us come to get support while we are going through a difficult time. Your questions are an invasion of our privacy and are inappropriate within this environment. Once your professor teaches you about the ethics of research, then your next step is to contact the moderators of these discussion boards to determine if you are allowed to post your questions here.

GramE

First this is a "college research project", now it is "a poll to see how Breast Cancer has affected patients".  

seawater86

It is a College Research Project. I am a student at Rogers State University in Claremore, Oklahoma. My assignment was to do a research paper on a topic that means something to us. On September 10, 2009 my mother was diagnosed with Breast Cancer for the 5th time. It is a new cancer. So I decided to do my research on the effects of Breast Cancer. I wanted people from different backgrounds that I do not know to answer these questions because I already knew how it affected some women in my family and I wanted to see if it effects women the same across the board. The reason I said poll is because I am not asking any questions that could suggest a persons ID and I do not want people thinking that I am. The questions are in more of a poll or survey style then in a research style. If no one wants to help then fine I understand. I'm just trying to get people in my class and at my school to understand just a little bit about the emotional and psychological effects that Breast Cancer has on patients and their families. Another reason I am asking here is because I feel that on an on-line community people are more free to express their feelings on such topics then they would be in the real world.

seawater86

My answers to my questions:
How has having B/C affected your life? I don't have it.
Do you have any family members who have had B/C and if so how has watching them go through it affected you? Yes, my mother, my grandmother, three great aunts. It has made me feel helpless and mad since I can't fix it.
Do you feel like less of a woman for having B/C?
How has B/C affected you emotionally? It makes me feel like I am 8 years-old and it is the third time mom has had B/C and I can't do anything
How has it affected your relationships with loved ones? It has made me afraid to get close to anyone because of the fear of getting cancer
Are you afraid of a re-occurrence and how that will affect your life?
How are you coping with the depression brought about with B/C that many women face?
Do you talk to others about getting checked?  Yes, even though my insurance won't pay for mine or my friends insurance won't pay for them do to our ages, I still tell them to get checked.

sheila888

Even if I want to help you is there some kind of form to answer the questions.

It doesn't seem to be personal but I still don't understand how and where they will be answered?   Are you planning to use our names?

Please explain to me. If some other ladies are willing to participate, I don't mind helping you.

otter

seawater86,

I appreciate your sincerity in wanting people in your class and at your school to learn about the emotional and psychological aspects of having breast cancer.  If you've spent any time at all reading the posts on this discussion board, you know we want people to understand those things, too, as does your mom I'm sure.

Please bear with me, though, because I am still confused.  You've told us you are conducting a "college research project" to meet the requirements of a classroom assignment, which was to write a "research paper."  Yet, you think that because your questions "are in more of a poll or survey style," rather than "a research style," they do not constitute research?  I would sure appreciate it if you could explain what you mean by that statement. 

I'm serious -- I really do not understand the difference between the open-ended, survey-style questions you've asked us, and the types of questions you would consider "research-style".  Also, with respect to the permissions you might need from the BCO Moderators and your own university, I don't understand why it would matter whether you considered your questions to be "survey" questions or "research" questions.  The important thing is what the Moderators and your university administrators think they are.

BTW, your questions are, in fact, survey-style questions, and not simple "polling" questions, according to the definitions I've found.  For example:  http://support.polldaddy.com/difference-between-a-poll-and-a-survey/

Okay, so back to the issue of research ethics and institutional approval...  Your university (Rogers State University) has an "Institutional Review Board" that must review and approve certain types of research projects before they can be carried out.  The projects under the jurisdiction of that review board (it's a committee, actually) are those involving "human subjects." Here's the page on your university's website that explains the IRB requirements and the review process:  http://www.rsu.edu/teaching-learning/irb/index.asp

Here is the policy statement from that opening page:

"Prior to initiation of any research project (including recruitment and data collection) that involves the use of human subjects conducted at or by researchers, faculty, staff or students of Rogers State University (RSU), the proposed research protocol must be reviewed and approved by the RSU Institutional Review Board.

"The RSU IRB Committee reviews research protocols in an effort to safeguard the rights and welfare of human subjects involved in research and to assist researchers and the University in our mutual obligation to comply with all federal, state, and University regulations and policies with respect to protection of human subjects in research.

"All research which may result in publication or public presentation, involving human subjects or use of data on human subjects that will be performed by faculty, staff or students of Rogers State University will be subject to this review."

The questions you are asking, the fact that you are conducting this "survey" from an academic institution, and the chance that you might share the answers with your classmates and perhaps even your campus, all point to the possibility that your "research project" might need to be reviewed and approved by your institution's IRB before you can start gathering answers.  

There are some types of "human subjects" research that are exempt from the process -- they do not require IRB approval.  The criteria for exemption are outlined in federal regulations that neither you nor I nor anyone else here (I'm betting) will want to read (e.g.,:  http://grants.nih.gov/grants/policy/hs/ethical_guidelines.htm )

So, it is possible that the "research" you are conducting for your paper would not be subject to IRB review and approval.  Just to be sure, though, you ought to check with the faculty member who is supervising your assignment.  He/she should be familiar with the RSU regulations on human subjects research, or should be able to direct you to someone who is. (Faculty members who do not carry out research as a part of their assignment often are not familiar with the regulations.)  An alternative would be to call the IRB office at your university and check with them.  Here's the contact information for that office:  http://www.rsu.edu/teaching-learning/irb/contact.asp

This regulatory stuff is all a huge hassle, I know.  Those of us who are, or were, involved in research dislike having to do it, but we do it anyway; because if we didn't, our failure to comply with the regulations could result in the federal government shutting down all research (not just our own) at our entire university.

I don't mean to scare you.  It is likely that your survey is exempt from the federal regulations.  But, I think it's important for college students to learn what is actually involved in conducting research, whether that research is being done with human subjects or lab animals or biological agents or, ... whatever.  So, please check on this with your supervisor and/or the RSU IRB office. 

And please be patient with the reluctance some of us have shown in answering your survey questions.  They are very personal, and for some of us, they still cause a lot of discomfort.  Your statement, "If no one wants to help then fine I understand..." sounded a little, well, ... snippy.  One of the cardinal rules of human subjects research is that the subjects are under no obligation whatsoever to participate.

otter 

kira66715

I hope you understand what Otter has written, so well--as always--any research that involves human subjects is usually subject to ethical and institutional standards.

That said, both of my daughters have been asked to interview subjects for college classes, and both found--to their surprise--that people did not want to be interviewed. Even on subjects like "What does it feel like to be in your fifties?"

This is a support forum, and you would likely get a better response if you found a local breast cancer support group and asked their permission to answer your surveys. And handed them out to be returned in a manner that the participant could not be identified.

We do occasionally get surveys, even on this site, but they're more sophisticated--you click on a link and it brings you to a web site, and you can chose to answer a survey.

I don't think this format and forum will get you the kind of global answers you're asking for.

As Otter said above, we're under no obligation to participate, and most surveys don't ask for essay responses.

Kira 

seawater86

I understand what both Otter and Kira have said. I in fact did check with my professor before I put my questions up. All of my professors told me that the type of questions I was asking did not have to reviewed by the IRB office at our campus since none of my questions are asking any identification question. I have also checked with the rules and regulations on BreastCancer.org before I even asked questions just to make sure that I could. And Kira is right that most surveys are not essay questions or even asking for a full sentence. All of this I understand and I'm glad that both Kira and Otter put their reasoning in such well thought out and polite responses. I also understand that most surveys take you to a site to ask you the questions. The only reason I put the questions up on the site was because Sunris suggested that I do so. I was just going to wait and if someone wanted to help out I could send them my questions personally. I think that this is were everything has fallen apart. I am sorry for any inconvenience I have caused anyone. As for the local support group I have tried to find one but the only one is in Tulsa and I have no way of getting there. That is why this was suggested to me. Again I am sorry. Thank you all for any help that you have given me.

flash

i PM'd you.

konakat

This post is inappropriate.  The solicitation for informaton must be approved by the moderators.  If they approve they will post a request for information.  Perhaps you should start your research at your local American Cancer Society.

hrf

otter and kira, thank you for taking the time to explain the details so effectively

AnnNYC

Seawater, I just want to add one thing to Otter's excellent post, and your response that your professors said IRB approval was not necessary -- most (if not all) Institutional Review Boards require that an "application for exempt status" be submitted to the IRB, a one-page form with a brief description of the planned study.  The IRB makes the determination that the study is exempt, NOT the investigator.

And, aside from any IRB issues, there are the rules and the etiquette of this Discussion Board -- any kind of request like yours should be submitted to the moderators first.

pj12

Perhaps you could contact the monitor of a breast cancer support group in Tulsa or surrounding areas and submit a questionaire to the group without actually appearing in person.  The anonymity of that arrangement might actually make women more comfortable answering your questions.  Part of the problem here is that you are asking people to post their responses in a public forum.  It may seem that as a group we will talk about anything but each of us individually is choosing what we are comfortably revealing.

As you may have discerned some of us are sensitive about being emotional research subjects. Also your questions are so broad in scope that I think it will be difficult to reconcile the variety of responses from one word answers to two page replies.   A question like "Do you feel like less of a woman for having breast cancer" is particularly uncomfortable for me.  Is this a question that you would ask someone in person?  None of my friends or relatives have been brave enough to pose that question to me, thank goodness.

Paam 

lassie11

I can't stop myself (a retired teacher) from suggesting tthat before you hand in your paper you sort out the difference between "then" and "than" and "effect" and "affect".

My next suggestion is that you do an extensive interview with your mother and a couple of other real people that you know with breast cancer focussing on the questions you have posed already.  That ought to give you more information than you could need for your paper.

CameoBarbie

I'm posting this because, originally I was going to let out what was hurting me, keeping things in, and this site allows me to let it out if I've left it in too long.  But, now I'll keep my mouth shut again because someone wants to USE the info.  I used to have a job that required me to pick up the University rabbits used for many many applications.  These poor creatures had some sort of experiment living within their bodies.  From the transporting of them, I learned the smell of their fear.  I used to look into their pink eyes, and, wonder, and remember the scientific horrors of hairspray in their eyes, or just what cancer have they been given?  It's still animal testing.  If your from a big college, go to your scientific labs, and pick one of them up, and see what you feel.  Are you worried about yourself or is there anything you think you can do for them.  Please, you should have known you'd upset people.  I understand your upset too.  I really do.

I think the 'sham-wow' approach given to these people here is so correct.  I call it sham-wow because when "Barry" sham-wowed the last surveyor, I realized how much dignity this place has for the right forum.  Sham-wow. Why pick this discussion board? And if we post, do you monitor us anyway? Okay rabbits, transportation is here. I still don't want to say what I was building up to for the last14 days though.  I hurt again emotionally.   She makes me think of that song from Shrek, hey now your a rock star, get your game on, go play .........

zipcode

Hi Seawater 86

 This has changed my whole life i havent worked in a little over a year,need to go back to keep my insurance going.I dont feel right going on social security after working for 30 years i am only 55 cant retire yet.I ach all over. How it affects your family u know it hurts everyone.Emotionally i dont know how to cope with it,it is really stressful.I am strong in front of my family and act like nothing, i am fine.But i drink a whole lot more then i should now just to take the edge off,at the same time i eat well and work out alot. I am very afraid of a reccurrence being triple negitive it has a very high risk of being back soon.I try to remain positive u have to,but i am also trying to get everything in order just in case.I dont talk to others about it,  its to depressing.You have to act like your moving on,that you are strong and not afraid.Good Luck on your paper

seawater86

Thank you all for all the help you have given me. All the feedback has helped me understand that much more about this tragic disease that has enveloped mine and my families life. Again thank you

AnnNYC

Actually, Athena -- the Community Rules state that in posting here, we "are granting Breastcancer.org a perpetual, exclusive, royalty-free and irrevocable right and license to use, reproduce, modify, adapt, publish, translate, distribute, transmit, publicly display, publicly perform, sublicense, create derivative works from, transfer, and sell any such messages, files or communications."

So, does that mean seawater wouldn't need a member's permission to print a comment, but permission of Breastcancer.org?