Online Data Collection in Women's Health Research: A Study of Perimenopausal Women with Migraines

An estimated 17 to 18 percent of all women, and six percent of men, experience migraines. Hormonal shifts may cause migraines to recur, worsen, or even begin during the perimenopause and are a significant cause of discomfort and disability. However, very little research has explored the experience of migraines in this population. The purpose of this study was to describe the experiences of perimenopausal women with migraines, via online questionnaires and discussion boards, and to evaluate the feasibility of collecting women's health data via the Internet. In an earlier study, we found that midlife women had difficulty attending focus groups due to other time commitments. This study was designed to increase accessibility to the research via the Internet. Of the 43 women recruited into the study, 21 were also interviewed in "real-time" qualitative interviews; all received passwords to complete online questionnaires and participate in three- to four-week discussion boards on the study Web site. Quantitative data were imported into SPSS; narrative qualitative data from discussion boards were transferred to a software package for analysis. Online questionnaires and discussion boards were found to be feasible methods for data collection for this population. Qualitative data analysis revealed themes related to women's efforts to predict and control their headaches, the relationship of headaches to women's menses and menopausal symptoms, and the effects of migraines on their lives. In this paper we describe the process of using the Internet, feminist issues related to this innovative methodology, and also discuss the results of a major study theme, the experience of headaches in relationship to the menstrual cycle.