Peer-support in coping with medical uncertainty: discussion of oophorectomy and hormone replacement therapy on a web-based message board.
The Facing Our Risk of Cancer Empowered (FORCE) website is devoted to women at risk for hereditary breast and ovarian cancers (HBOC). To understand the unique health concerns and emotional support needs of these women, we examined threads on the FORCE archived message boards with relevance to the broader HBOC community. We report on a thread discussing the controversial decision to use hormone replacement therapy (HRT) following prophylactic oophorectomy (PO). We used a qualitative research inductive process involving close reading, coding and identification of recurrent patterns, relationships and processes in the data. Twenty-nine women posted 177 messages over 7 months. Two main groups of women posted: (1) Women who were BRCA+, had completed PO, and were debating or adjusting their HRT options in terms of optimizing both quality and quantity of life. (2) Women who were BRCA+, were contemplating PO, but wanted to better understand the potential physical and psychological consequences of surgical menopause before deciding. Frustrated by physicians' lack of knowledge and contradictory media articles about the long-term consequences of HRT in BRCA+ women, they sought resources, emotional support and specific experiential knowledge from each other and generated a unique sense of community and a high level of trust.
Kenen
Regina H
RH
The College of New Jersey, NJ, USA.
Shapiro
Pamela J
PJ
Friedman
Susan
S
Coyne
James C
JC
D000223:Adaptation, Psychological; D000328:Adult; D001294:Attitude to Health; D001943:Breast Neoplasms / Q000235:genetics; D005260:Female; D020249:Hormone Replacement Therapy; D006801:Humans; D020407:Internet; D010051:Ovarian Neoplasms / Q000235:genetics; D010052:Ovariectomy; D010379:Peer Group; D012307:Risk Factors; D012934:Social Isolation; D012944:Social Support