Using the Internet to Collaborate with Consumers in Redefining a Psychosocial Agenda for Families with Hereditary Breast Cancer
Final rept. 17 May 2004-16 May 2008
PENNSYLVANIA UNIV PHILADELPHIA
Pagination or Media Count:
Women at increased risk of Hereditary Breast and Ovarian Cancers HBOC and their families face dilemmas about testing risk management and family dissemination of results. They face problems regarding the accuracy of the information they have received difficulties accessing new information and specialized services and resistance and misinformation from inadequately informed health care professionals in the community. Thus they are forced to develop their own informal means of individual and communal coping and to identify and access appropriate formal services without guidance. The FORCE website www.facingourrisk.org serves important functions in the sharing of information provision of support and active problem-solving and in normalizing and validating the womens response to their predicament. This project is intended to yield the basis for clinically useful tools to reach out to these women and better address their unmet needs. It will identify the specific tasks with which they need assistance and the forms that competent coping takes. Results will give impetus to new clinical public policy and research agendas for women and their families living with inherited risk of cancer. To date we have combined quantitative and qualitative analyses to identify and examine one of the most frequently discussed topics on the message boards decision-making regarding the use of hormone replacement therapy HRT following prophylactic oophorectomy PO. Other papers in progress include the decision to undergo prophylactic mastectomy and subsequent decisions surrounding reconstruction the lived experience of prophylactic mastectomy and sense of self and renegotiation of identity following prophylactic mastectomy.
- Medicine and Medical Research