Supporting men, supporting women : development of a web-based information and support resource for support partners of women undergoing genetic testing for breast cancer risk

摘要

Aim. Undergoing genetic testing for breast cancer risk can be stressful and women who have testing frequently rely on their spouses for support. Unfortunately support partners often experience considerable distress themselves, feeling under-informed about the genetic testing process and unsure about how best to support the woman concerned. In this study we describe the development of a theoretically-driven web-based information and support resource for male support partners of women undergoing genetic testing. Method: Development of the Supporting Men, Supporting Women website entailed: 1) A needs analysis by interviewing genetics health professionals and male support partners; 2) Module and content development informed by theory, the needs analysis and expert consultation; 3) Video-recording and editing of interviews depicting experiences of male support partners and modelled stress management techniques; 4) Website ‘look-and-feel’ piloting; and, 5) Final website production. Results: Interviews with health professionals and support partners highlighted the need for a resource to provide men with information about the genetic testing process as well as guidance on managing their own and the woman’s distress, and improving communications with the tested woman. Website modules developed for this resource reflect information about these topics, as well as descriptions of typical reactions of women and their spouses to the testing process, and guidance to enhance coping and communication. Additionally, videotaped interviews depicting the experiences of spouses who have supported women through genetic testing were included. Conclusion: Supporting Men, Supporting Women is the first resource to specifically target the support needs of partners of women undergoing genetic testing for breast cancer susceptibility. By providing an accessible web-based supportive resource for male partners, this resource is likely to provide benefits both to supportive spouses, as well as the tested women themselves. The efficacy of this web-based resource will be assessed in a randomised controlled trial.