Peer‐support in coping with medical uncertainty: discussion of oophorectomy and hormone replacement therapy on a web‐based message board

Abstract

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.

The 2009 H1N1 Influenza Pandemic: The Role of Threat, Coping, and Media Trust on Vaccination Intentions in Canada

“…Further, it has been suggested that by rejecting the notion of trusting blindly individuals were able to feel empowerment once they had taken personal control over decision making (Hobson-West, 2007). In relation to other situations involving medical uncertainty (e.g., hormone replacement therapy and oophorectomy in BRCA + women), because of the frustrations stemming from a perceived lack of physician knowledge, coupled with inconsistent and contradictory media reports, women were most likely to seek information from other individuals in similar situations and were trusted as they formed a high degree of community (Kenen, Shapiro, Friedman, & Coyne, 2007). It is uncertain why mistrust and caution was as great as it was concerning HI1N1 media reports relative to that evident in other situations, and why trust of physicians was as high as it was in the present investigation.…”

Challenges in managing genetic cancer risk: a long-term qualitative study of unaffected women carrying BRCA1/BRCA2 mutations

“…These interventions have been found to help BRCA1/BRCA2-positive women in terms of risk management, because they provide information, emotional support, and specific experiential knowledge from women with similar medical conditions. 35,36 In conclusion, this qualitative study provides new insights into the experience of unaffected women carrying BRCA1/ BRCA2 mutations. These women are exposed to contradictory pressures from the social and medical systems and are thus prone to develop a sense of disorientation regarding the most appropriate way of coping with cancer risk.…”

“Naked Genes” as Health Psychological Innovation: A Challenge for Research and Intervention

“…In this regard, the development of test protocols that take into account a range of possible differentiated cultural backgrounds and beliefs related to health and medical culture in various social groups could be fruitful for research and intervention (Meiser et al, 2006(Meiser et al, -2007. In addition, the social support of people outside the family could be a valuable ingredient in the path of these women reinforced through the perception of being fully understood (Bebbington et al, 2002;den Heijer et al, 2011b;Kenen, Shapiro, Friedman, & Coyne, 2007). By the end of the 90s, the American Psychological Association (APA) set up a special committee, the Advisory Board on Genetic Issues, and has recently emphasised the need for more active involvement of researchers and psychologists in the field of human genetics and its applications from a multidisciplinary perspective.…”