Hello Everyone,
My name is Lisa and I am a genetic counseling student. With a few of my classmates, I am working on a public health education project about cascade genetic testing in families that have Lynch Syndrome. As part of our research, we would really like to gain perspective from individuals that have been diagnosed with Lynch Syndrome and/or their family members. We have reached out to some of our patients through our clinical placements, but it would be wonderful to learn from a larger variety of people.
We would be grateful if you or your family members could take a few moments and answer some of the questions I have listed her below. If you would like to help, but would prefer to answer in private, you can email me at the account I have set up for this project : gclynchsyndrome@gmail.com
Thank you so much for your help, it is greatly appreciated. It is our hope that the information we gather will help us to help the families we see in clinic,
Lisa
Needs Assessment Questions:
1. Who, if anybody, in your family (including extended family) did you tell/discuss your Lynch Syndrome test results with?
2. How did you tell/explain these results to your family members?
3. Why did you tell these family members?
4. Why did you not tell other, or any, family members?
5. How did the family members who you shared your results with respond to the news?
a. Were they glad you shared the news with them?
b. Did they worry about how this impacted them?
6. Do you feel that your healthcare provider who gave you your Lynch Syndrome test results could have done anything or said anything to help you determine how to deliver the news of your results to your family?
7. Did your provider explain the implications this could have for your family?
8. How important do you feel sharing this information with your family members is? Why?
My name is Lisa and I am a genetic counseling student. With a few of my classmates, I am working on a public health education project about cascade genetic testing in families that have Lynch Syndrome. As part of our research, we would really like to gain perspective from individuals that have been diagnosed with Lynch Syndrome and/or their family members. We have reached out to some of our patients through our clinical placements, but it would be wonderful to learn from a larger variety of people.
We would be grateful if you or your family members could take a few moments and answer some of the questions I have listed her below. If you would like to help, but would prefer to answer in private, you can email me at the account I have set up for this project : gclynchsyndrome@gmail.com
Thank you so much for your help, it is greatly appreciated. It is our hope that the information we gather will help us to help the families we see in clinic,
Lisa
Needs Assessment Questions:
1. Who, if anybody, in your family (including extended family) did you tell/discuss your Lynch Syndrome test results with?
2. How did you tell/explain these results to your family members?
3. Why did you tell these family members?
4. Why did you not tell other, or any, family members?
5. How did the family members who you shared your results with respond to the news?
a. Were they glad you shared the news with them?
b. Did they worry about how this impacted them?
6. Do you feel that your healthcare provider who gave you your Lynch Syndrome test results could have done anything or said anything to help you determine how to deliver the news of your results to your family?
7. Did your provider explain the implications this could have for your family?
8. How important do you feel sharing this information with your family members is? Why?
Just my suggestion. That's what we did in the mental health field. Or, contact a hospital with a great genetics counseling dept. I would recommend Novant Health Presbyterian Main in Charlotte NC