Wednesday, October 22, 2014

PARTICIPANTS NEEDED FOR RESEARCH STUDY ON PROPHYLACTIC MASTECTOMY

I will be participating in this study. The researcher needs 5 more volunteer participants. The purpose of this study is to examine the experiences of six women who have undergone prophylactic mastectomy to gather firsthand experiences to assist newly diagnosed women with information upon to guide their decisions. Amy Byer Shainman @BRCAresponder

REQUIREMENTS: 
*Must be a previvor, assessed as high risk, family cluster, or BRCA positive.
*Has had Prophylactic mastectomy for the purpose of reducing life long risk of breast cancer. 
*Researcher prefers participant that resides in South Florida.


Department of Educational Leadership Florida Atlantic University

PARTICIPANTS NEEDED FOR RESEARCH ON PROPHYLACTIC MASTECTOMY

We are looking for volunteers to take part in a study of
Prophylactic Mastectomy.
As a participant in this study, your participation will involve one face to face meeting (OR SKYPE meeting) of about 60 minutes of your time and a follow up e-mail.  
In appreciation for your time, you will receive:
The sincere appreciation of the researchers and beneficiaries of your experience.
For more information about this study, or to volunteer for this study. 


Please contact: Faith Gordon

Department of Educational Leadership

Florida Atlantic University
561-310-0634
Email: faithgordon121@hotmail.com

---------------------------------------------------------------------------------
ADULT CONSENT FORM
1) Title of Research: Transformational Learning and Self Efficacy:  An Investigation into their Role in Prophylactic Mastectomy
2) Investigator (s): PI: Dr. Valerie Bryan/Co-PI: Faith E. Gordon
3) Purpose: For all women it is important to be informed regarding all current treatment options that are available to prevent breast cancer.  For women in high-risk categories of breast cancer it is even more important that they are informed. The purpose of this study is to examine the experiences of six women who have undergone prophylactic mastectomy to gather firsthand experiences to assist newly diagnosed women with information upon to guide their decisions.  Information gathered from this study will add to the body of knowledge to assist newly diagnosed women to make informed decisions regarding their health care.  Further, this information will inform health care providers of the patient’s perspective, enabling them to provide improved patient centered health care, and finally this information will assist educators and curriculum developers to create and improve programs and protocols to assist women through this process.  
The research will include investigation through the stages of (a) diagnosis, (b) information gathering and option discovery, (c) decision-making (d) surgeries, (e) healing and recovery.  The focus of this study will be on transformational learning and self-efficacy.  
4) Procedures: This study has six participants.  All are adult women between the ages of 18 and 90.  All have been diagnosed at high-risk of breast cancer and have undergone prophylactic mastectomy.  This research has three data collection methods.  The first is a guided open-ended interview.  The second is a brief survey on self-efficacy, and the third is your autobiography.  You are asked to participate in a guided 60 minute interview and complete a brief survey.  This interview will be audio recorded.  When the interview is complete it will be e-mailed to the transcriber. Any and all identifiers will be removed.  The transcript will be e-mailed back to me and I will e-mail a copy to you.  If you wish to make any additions or changes, please do so and return it to me at: faithgordon121@hotmail.com within five days.  By participating in this research you grant permission for the researcher to use direct quotations from your interview, anonymously without identifying information in the final research product.  The information is for dissertation use. 
Your participation is voluntary; refusal to participate will involve no penalty or loss of benefits to which you might otherwise be entitle, and you may discontinue participation at any time without penalty or loss of benefits to which you are otherwise entitled. 
5) Risks: You will be asked to recall and talk about feelings and memories that may be associated with powerful emotions.  This may be uncomfortable or disorienting. If, as a part of this study you experience psychological discomfort or stress there will be psychological counseling available at (866) 288-7475.  In addition, you have a right to discontinue participation at any time of unanticipated stress occurs.   

Initials_____

6) Benefits: We do not know if you will receive any direct benefits by taking part in this study.   However, this research will contribute to a greater understanding of the role of adult and transformational learning and self-efficacy play in the proactive health care choice of undertaking prophylactic mastectomy.  Knowledge gained will provide newly diagnosed women with information to help them make informed decisions.  It may also assist health care providers and educators to improve protocols, training, and curriculum development.
7) Data Storage:
Any information collected about you will be kept confidential and secure and only the people working with the study will see your data, unless required by law.  You and any individuals named will be given pseudonyms.  Locations will be general and organizations will be given generic names.  Data will be kept for 2 years in a locked file drawer and on a password-protected computer in the researcher’s home office.  After 2 years paper copies will be destroyed by shredding and electronic data will be deleted.  We may publish what we learn from this study.  If we do, we will not let anyone know your name/identify unless you give us permission.
8) Contact Information:
  • If you have questions about the study, you should call the principal investigator(s) Dr. Valerie Bryan at (561) 799-8639.
  • In you have questions about your rights as a research participant, or experience problems, contact the Florida Atlantic University Division of Research at (561) 297-0777 or send an e-mail to fau.research@fau.edu
9) Consent Statement:
*I have read or had read to me the preceding information describing this study.  All my questions have been answered to my satisfaction.  I am 18 years or older and freely consent to participate.  I understand that I am free to withdraw from the study at any time without penalty.  I have received a copy of this consent form.
I agree ________     I do not agree ___________ to be audiotaped/videotaped.
I agree _________ I do not agree ____________ to use my direct quotes for this research. 
Signature of Participant:  __________________________ Date_________________
Printed Name of Participant:  First Name _______________ Last Name __________
Signature of Co-Investigator: __________________________ Date _________________



Thursday, October 16, 2014

ADVOCATING FOR LIFE

An advocate for genetic counseling/testing, Amy knew she couldn't remain silent when she had the power to affect so many lives, and believes Angelina Jolie sharing her experience has created much needed public awareness.

FULL ARTICLE: http://www.tcpalm.com/niche/jupiter-courier-newsweekly/advocating-for-life_53237240

Tuesday, September 23, 2014

Honoring Lillian

Today marks the 80th anniversary of my grandmother Lillian's death. It is Lillian's Yahrzeit. A Yahrzeit (Yiddish for "a year's time") is the anniversary of the death of a loved one. 
More on Yahrzeit  

Lillian died on September 23, 1934. 
She was 33 years old. 
My Dad was only 7 years old at the time.

The first thing I saw on my computer this morning was this story:  The story of Kristi Szekely.  A story similar to my own. Kristi inherited her BRCA1 gene mutation from her father who had inherited it from his mother. Kristi's grandmother was also in her early 30's when she passed from both breast and ovarian cancer. 


So today, seeing that very similar BRCA1 story, Lillian was sweetly nudging me again--like she so often does. Not only to remind me we are related by DNA, but also by heart and spirit. Over the years I have felt Lillian's pull, guidance, warnings, & love. We may not have a traditional grandmother/granddaughter relationship -- one where I can hop up on her lap, share lunch, or spend the afternoon playing cards or going shopping. However, our kinship and connection is undeniable. 
“Make my death mean something Amy, use your voice, press forward Amy, share, it’s the right thing to do.”

And so today, I honor you Lillian, by lighting a Yahrzeit candle, writing this post, and continuing to share my story. Our story.





www.nsgc.org to find a genetic counselor near you.


Portion taken from my BRCA memoir: Resurrection Lily which has taken me longer to complete and a lot harder to write than I ever anticipated.     I am taking the lead from Lillian, she has just a bit more she wants me to include. I will keep you posted on its release.
Amy Byer Shainman
@BRCAresponder 

9/19/14 @BRCAresponder WEEKLY

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