Important information about ethnic variations emerged. The conceptualization sessions demonstrated that the terminology used to describe menopause and the symptoms associated with the menopausal transition were defined culturally, in how the terms were used, as well as the actual concepts themselves. For example, for Japanese and Chinese American women, the term “menopause” as conceptualized in the medical sense had no direct translation in either of the two Asian languages.9
When contemplating menopause, they thought of “getting old,” being “over the hill.” For Japanese-speaking groups, the years from the late 40 s through the 50 s covered the transition called “kounenki” - a phrase associated with a time of “maturity or harvest.” One woman said this stage is when “people may feel like they are no longer young.” Chinese American women tended to weave meanings of menopause with midlife during which a “change in life” occurred. They found the biologic definitions of menopause too narrow in describing the transitions associated with midlife.
Menopausal symptoms such as hot flashes were also less relevant for the Asian American women: neck and shoulder pains were more prevalent. Thus, these symptoms were added to the standardized questionnaire.7
Some of the African American women were offended at the phrasing of several of the sexuality questions, which seemed to assume that they were sexually active, although single. These women, who tended to be more religious, said that the implicit assumption was offensive, and there was no option in the questionnaire to respond that, by choice, they were not having sex. Therefore, this option was added. Additionally, some of the African Americans found the idiomatic vernacular language for sexual practices to be insulting. The researchers responded to their opinions and substituted the proper terminology.
Attitudes toward the symptoms, also varied by menopausal status. Pre- and peri-menopausal women expressed much greater anxiety about the potential emotional changes than postmenopausal women. The pre- and peri-menopausal women expressed concerns about the “emotional roller coaster” and heightened excitability:
“By [menopause] I will probably get very irritable. This will be my main concern. I’m afraid that I might offend someone without realizing it or that it might affect my relationship with my family.”
“I’m afraid my children would not be close to me because I’m getting old and constantly getting irritable.”
In contrast, the post-menopausal women across all ethnic groups were pleasantly surprised that the transition occurred relatively uneventfully, and many downplayed the importance of physical changes they experienced. At one site, both the African American and European American groups noted that the “crankiness” and “irritability” some attribute to “The Change” is actually due to the fact that women felt their wisdom and maturity gave them a positive sense of themselves and the ability to say “no” to requests from those they had “nurtured” all these years. One woman said, “In fact, maybe they weren’t such cranky old women;” maybe they were finally saying “It’s my turn.”14
Another explained, “We are much more aware of what’s going on and more in tune with what we are feeling.”
Using the focus groups to define study terminology also affected the selection of the study’s name. For one group of African American women, the acronym SWAN prompted discussion of the racial overtones of the imagery and symbolism of a white bird. The decision was made to use another name for local recruitment in the community at this site.
An analysis of all the conceptualization sessions revealed a broad range of both positive and negative experiences yielding numerous unexpected variations in physical, social, and emotional changes. One notable unexpected commonality, however, was the increased awareness of personal mortality and death evoked by the recognition that the mid-life transition signaled that their future would be shorter than their past, and that they must seriously consider what they wanted to accomplish in their remaining time. For example, women stated:
“Life doesn’t stretch on endlessly.”
“There are so many sicknesses and diseases that come from aging, from being older, and for women in particular. I’m scared.”
“In a way, it’s telling me that I’m old—then I think of dying.”
“It’s like we now have one foot in the grave.”
Most women, however, felt positive about this time of their lives because they were now comfortable with themselves. Aging itself, though, was viewed more negatively by the European American groups than among the women of color. The latter group viewed aging as a more natural and welcomed process that brought more respect and fewer encumbrances of female-role responsibilities. Thus the meaning of the midlife transition had a more positive social value than for the European American women. More extensive descriptions of specific ethnic group findings are published elsewhere.9,14–16
Recruitment and Retention
The recruitment and retention session informed the scheduling patterns of local sites and methods of data collection. At the New Jersey site, the data alerted researchers to the geographic shift of the community of focus since the last census. This information helped avoid expending unnecessary recruitment efforts in the wrong communities. For some ethnic groups, extending hours beyond 9:00 AM–5:00 PM, Monday through Friday was necessary to allow for better recruitment and retention. This information enabled the sites to provide required flexibility in hours before the start of recruitment.
Transportation to the study office sites for the interviews, blood tests, and other medical tests posed problems in most communities. The Los Angeles SWAN staff opened their study office in the community with the largest concentration of Japanese Americans in order to reduce the commute time and parking costs and to increase local visibility of the study. For retention, participants stated that rather than “gifts” like bags or mugs, they wanted newsletters or meetings to keep them apprised of the study’s findings and how the findings might inform their lifestyle choices. Each study instituted such strategies.
The women also suggested strategies to minimize some of the more burdensome and onerous data collection procedures. Examples included: reducing the number of psychosocial questions (the final questionnaire for the first five years consisted of about 108 questions), scheduling blood collection for the early morning so women could stop by on their way to work, having in-home mini-freezers for urine collection, and tailoring the process of collecting daily menstrual calendar information and the size of the forms for ease of record-keeping, and confidentiality from family. All these suggestions were incorporated into the protocols.
Due to the intensive nature of the data collection required for the quantitative portion of the study, these focus groups were invaluable. The findings enabled each site to improve and ensure full participation and maintain retention rates of more than 78% of the original 3150 participants during the 10 years of the study. Attrition was primarily due to women who have moved away and could no longer return for the collection of biologic materials or the few who have died.