Framework of Planned Interviews of Female Participants
A. Interview 1 for Women
1. Her reaction to the DOR diagnosis.
¨ What was your vision of your family before you tried to get pregnant?
¨ How did you first learn that your ovaries may not be producing enough eggs?
¨ What did you expect from seeing an infertility specialist?
¨ How does the DOR diagnosis influence your future reproductive decisions?
2. Her reaction to the possibility that there is a genetic cause for her infertility.
¨ Genetic testing is a sensitive issue. One could imagine that some people would hesitate to get genetic testing. Did you have any hesitations? If so, would you describe to me what they were?
3. Her perception of fragile X and the testing process.
¨ After you had your blood drawn for the FRAX testing, how did you feel? What did you do afterwards? Did you talk to anyone about it?
¨ Do you perceive the decision you made to be tested as different from other (non-genetic) testing decisions? Was getting your blood drawn for the FRAX test any different than an infertility blood test of your hormones?
4. Her perception of children or childlessness in relation to genetics and fragile X in particular.
¨ Has the possibility of fragile X or another genetic cause of your infertility changed the way you view having children? Not having children?
5. The impact of infertility and the fragile X testing on significant relationships.
¨ Did you discuss your decision to have fragile X testing with your partner?
¨ How does your partner feel about you getting the fragile x testing?
¨ How do you and your partner make decisions? Is it different when it comes to your reproductive health?
6. Her decision to participate in this study
¨ What do you hope to learn from being in this study? How might this influence your reproductive decision-making?
b. Interview 2 for Women
1. The experience of being told her test results
¨ How did you learn about your result, and, looking back, would you have chosen a different communication method?
¨ Were the results what you expected?
2. Her reaction to the results in the context of her reproductive plans and expectations
¨ Did you make any new decisions based on the results of the test?
¨ Would knowing about FRAX earlier in your infertility workup have changed your medical decisions? In what way?
¨ What do you wish you had known before you started this process of getting tested for fragile X?
3. Communication about the results and the testing experience
¨ Have you told anyone about your test results? Who did you tell and how did they react?
¨ Are there people you specifically decided you would not tell? Tell me about this.
¨ Are you planning on sharing your results to your infertility doctor? Why or why not?
4. Hindsight comparison of genetic testing with other medical tests
¨ Was getting the results of the FRAX test or the test experience any different than any other infertility test result?
C. Interview 3 for Women
1. Her reaction to the results in the context of her reproductive plans and expectations
¨ Have your reproductive plans changed since the last time we spoke?
¨ If you had known about the availability of FRAX testing earlier in your infertility workup, would it have changed your medical decisions? If so, in what way?
¨ What do you wish you had known before you started this process of getting tested for fragile X?
¨ Have the tests results changed the way you view your history of infertility?
2. Genetic testing in the future
¨ Are you more or less likely to have genetic testing in the future if your doctor recommended it? Could you imagine a situation in which you would seek genetic testing on your own initiative?
3. Communication patterns and disclosure of results and the perceived effect of the testing process and results on her significant relationships.
¨ Have you told anyone about your test results since the last time we spoke? What was their reaction?
Framework of Planned Interviews of Partner Participants
a. Interview 1 for Partners
1. Describe your role in your partner’s infertility workup.
2. His reaction to the DOR diagnosis.
¨ What was your vision of your family before you and your partner tried to get pregnant?
¨ How did you first hear that your partner’s ovaries may not be producing enough eggs?
3. What did you expect from seeing an infertility specialist?
¨ How does your partner’s DOR diagnosis influence your future reproductive decisions?
4. Decision-making as a couple relative to the fragile X test.
¨ How do you and your partner make decisions? Is it different when it comes to your reproductive health?
¨ Did you want your partner to be tested? If you had any hesitations would you describe to me what they were? Was the decision to be tested made in the same fashion as other decisions you have made as a couple?
5. His reaction to there possibly being a genetic cause of her infertility.
¨ How did you feel when you heard that there may be a genetic cause of your partner’s infertility?
6. His perception of fragile X and the testing process.
¨ What, if anything, did your partner say to you after the testing?
¨ Do you perceive the decision to be tested for fragile X as different from other (non-genetic) testing decisions? Are you aware of any other genetic testing that you had as part of your infertility workup?
¨ What other information or support would you have wanted prior to your partner being tested for fragile X?
7. His perception of children or childlessness in relation to genetics and fragile X in particular.
¨ Has the possibility of fragile X or another genetic cause of your partner’s infertility changed the way you view having children? Not having children?
¨ If your partner is found to be a carrier of a fragile X premutation (or change in the fragile X gene) would this change your view of her? If so, how ?
B. Interview 2 for Partners
1. His reaction to his partner’s experience of being told her test results
¨ How did your partner learn about her test result? In retrospect, do you feel that a different communication method would have been better?
¨ Were the results what you were expecting?
2. His reaction to the results in the context of their reproductive plans and expectations
¨ Did you or your partner make any new decisions based on the results of the test?
¨ Would knowing about FRAX earlier in your infertility workup have changed your medical decisions? In what way?
¨ What do you wish you had known before your partner started this process of getting tested for fragile X?
3. His reaction to the results in the context of his partner’s genetic health.
¨ You read and hear a lot these days about the role of genetics in health. Has this test result, or test process, affected your image of your partner?
¨ Are you more or less likely to have genetic testing in the future if your doctor recommended it?
4. Communication about the results and the testing experience
¨ How did your partner tell you about her test result? How did you feel about the results?
¨ Did you talk to your blood relatives or in-laws about the results? How did they react?
¨ Do you think that you and your partner should share the test results with your infertility doctor? Why or why not?
5. Hindsight comparison of genetic testing with other medical tests
¨ Do you perceive the decision to be tested as different from other (non-genetic) testing decisions? Was getting the results of the FRAX test any different than any other infertility test result?
C. Interview 3 for Partners
1. His reaction to the results in the context of their reproductive plans and expectations
¨ Have your reproductive plans changed since the last time we spoke?
¨ If you had known about the availability of FRAX testing earlier in your partner’s infertility workup, would it have changed your view of the medical decisions you and your partner were making?
¨ What do you wish you and your partner had known before starting this process of getting tested for fragile X?
¨ Have the test results changed the way you view your partner’s history of infertility?
2. Future genetic testing.
¨ Has the testing process changed the way you feel about genetic conditions that you or your partner may have inherited or that “run” in your family?
¨ Are you more or less likely to have genetic testing in the future, or to think your partner should have it, if your doctor recommended it? Could you imagine a situation in which you would seek genetic testing on your own initiative?
3. The perceived effect of the testing process and results on the couple relationship.
¨ How has knowledge of your partner’s results affected your relationship with her?
4. Communication patterns and disclosure of results and the perceived effect of the testing process and results on his significant relationships.
¨ Have you told anyone about your test results since the last time we spoke? What was their reaction?