Jan 30, 2018 02:57PM
Jan 30, 2018 02:57PM
Hi Everyone, the researchers at Dana Farber relayed these responses, and will be addressing a few other points tomorrow:
Thank you so much for sharing these helpful comments.
We did try to consider how best to word the survey to be inclusive of the experiences of women of every sexual orientation.
We are excited to be using one of the most widely used, validated measures of sexual functioning called the Female Sexual Functioning Index (FSFI) because it will allow us to compare our results to findings within different populations. Any woman, of any sexual orientation is welcome to answer these FSFI questions (#16-36). Before diving into the questions, we hoped to make this clear by defining the terms we would use in the scale. For instance, we say "sexual activity can include caressing, foreplay, masturbation and vaginal intercourse." So, for each question that asks about sexual activity, women's answers can relate to many types of sexual behavior, not just intercourse. In fact, every question that asks about intercourse also asks about sexual activity, so that women with partners who are male, female, or both can reflect on their experience. Here is an example, "Over the past 4 weeks, how often have you been satisfied with your arousal (excitement) during sexual activity or intercourse?" Women who have not had intercourse but have been sexually active in other ways can feel free to answer these questions with the full range of response options. Otherwise, each of these questions includes an answer option that reads "no sexual activity" so that participants who have not experienced ANY caressing, foreplay, masturbation, OR vaginal intercourse during the past 4 weeks can check that box.
To Ksusan's point, for the questions that ask specifically about pain from vaginal penetration, women who do not have male partners do not have to select the answer option "did not attempt intercourse." Instead, they are welcome to answer these questions by referencing their experience of pain from ANY vaginal penetration by toys or fingers, etc.
We are looking forward to hearing from a diverse group of voices. Our survey questions use the term "partner(s)." Since participants may have multiple partners of different gender identities, we do not ask the gender of their partners. Instead, we ask participants to self-identify their sexual orientation in question #40 since this may be more reflective of their feelings and overall sexual behavior.
Briefly, to Momine's point: we do believe that a fulfilling sex life is possible during and after breast cancer treatment. Treatment impacts everyone differently - some women have more sexual side effects than others, and some have none. It is our hope that this study will provide a window into this range of experiences women that can have in and the ways in which they have coped with sexual side effects, when they do come up.
The Dana-Farber team is excited to be working on this as our first sexual health survey within the Breastcancer.orgcommunity. It is not intended to be comprehensive. Sara raises some great points that could be explored in a follow-up survey about surgical decision-making, body image and how partners' perspectives influence survivors' sexual wellbeing overall. Others raise great questions as well.
Please feel free to continue sending them our way!