Findings
The participants were primarily Caucasian, aged 56 years, and married (see Table 1). They were, on average, aged 49 years at the time of their OVCA diagnoses.
Education
The women reported that they wished they had been better informed about what to expect regarding possible sexual health alterations, so that they could be more proactive in sexual health maintenance following their cancer treatments.
I prefer that, at least, I have information, so the more information I have, the more I'll be [informed], if it's online, or if it's a speaker, or whatever…. I just remember getting all the information I could; however, information about intimacy was very limited out there. You know, could you have sex, could you not? What was viable [and] what wasn't after surgery? Frankly, no one ever talked to me about that, if you want to know the truth. Anything that I did find, I pursued it and looked for it, but it was a bullet point, or two or three in a brochure that was given to me by a nurse or a doctor or whoever. That's all I got … a couple of bullet points, and that's really not enough.
The women explained that the literature available to them in their oncologists' offices did not meet their education needs and, in addition, it was given to them too late after their diagnosis.
The participants were asked in the pilot study what they thought would have been helpful for sexual health as they navigated their cancer therapy. The women verbalized a need for a less academic sexual health cancer guide.
Well, why couldn't you put [out] a pamphlet? … Something that you could feel comfortable talking to someone [about] (Woman 1). Yes! (General enthusiastic agreement).
Gotta read something while you're [in treatment]. [The pamphlets] should be everywhere!
What about the husbands or boyfriends who don't really know too much, and the wife [won't] discuss it with them? … They're going to want to pick [a pamphlet] up.
A primary barrier regarding written information about the effects of cancer and its treatment is that the person for whom it was intended often cannot understand it (Burhansstipanov & Olsen, 2004). Typically, educational materials are written at a grade 12–14 reading level, whereas the general population reads at a grade 5–7 level (Bardarudeen & Sabharwal, 2010). In addition, the wording and sentence structure may not be culturally sensitive or easy to understand (Burhansstipanov & Olsen, 2004). TheA–Z Guide has a Flesch Reading Ease, a formula to assess the difficulty of a reading passage, score of 68.3 (range = 0–100; 90–100 equates to reading level at age 11 years) and a Flesch-Kincaid Grade Level of 7.6, which provides a standardized way to judge the readability level of a document (Flesch, 1948). Together, those scores indicate that a seventh grader would be able to read the document.
The guide was designed to address an unmet need regarding the availability of a short, comprehensive, and user-friendly guide that offered women specific information regarding maintaining sexual health after their cancer diagnosis. This article documents examples of the responses from the study participants and the resulting integration of those responses into the A–Z Guide (see Table 2).
Communication
Many cancer survivors say they were not prepared for the changes in their sex lives. Cancer and its treatment can lead to sexual and reproductive dysfunction, loss of self-esteem, depression, and the disruption of supportive and crucial relationships. Anticipation and validation of patient concern also can alleviate emotional suffering (Matzo et al., 2013; Robinson & Molzahn, 2007). The A–Z Guide was written as a resource for women to help them anticipate the sexual health changes their bodies may experience throughout cancer treatment and validate their experiences throughout survivorship.