Women with an inherited BRCA mutation are at significantly increased risk for breast and ovarian cancer, often diagnosed at an earlier age than sporadic cancers. Prophylactic surgery, with bilateral mastectomy and/or bilateral prophylactic salpingo-oophorectomy, represents an option for risk reduction. The purpose of this study was to explore quality of life, sexual functioning, menopausal symptoms, psychological well-being and satisfaction with risk management decisions for BRCA-positive women ages 21 to 50 (M = 38.4 years), without a personal history of cancer. A web-based, cross-sectional study design was utilized to compare women opting for any prophylactic surgery (n = 160) with those without a history of prophylactic surgery (n = 71). Quality of life (per the Quality of Life Index, Self-Anchoring Striving Scale and Body Image Quality of Life measures) and Psychological General Well-Being Index scores were essentially the same across the entire study sample. While controlling for age, prophylactic surgery (PS) predicted more severe symptoms of sexual dysfunction as measured by the Female Sexual Functioning Index (total score, Desire, Arousal, Lubrication and Satisfaction domains). Similarly, PS predicted menopausal symptoms and sleep difficulties. Women who had not undergone any prophylactic surgery had higher levels of Stigma and lower levels of Mastery, as measured by the BRCA Self-Concept scale. Prophylactic surgery also predicted higher levels of Satisfaction with Decision for hereditary cancer risk management. Findings from this exploratory study provide insight into the quality of life, sexual functioning and psychological well-being for unaffected, BRCA-positive women. Additional research is needed to examine sexual functioning prospectively, to further investigate the potential sequelae of risk-reducing surgery.

Children with complex health problems who are dependent upon medical technology require frequent hospitalizations, during which parents must make difficult decisions regarding their child’s care. Although principles of “family-centred care” have been widely adopted by paediatric hospitals, studies indicate that many parents are dissatisfied with their roles in decisions about their child’s care. Pierre Bourdieu’s Logic of Practice, specifically his concepts of field, capital, and habitus, as they relate to cultural and symbolic capital within the field of pediatric medicine, were used to guide the design of a parent briefing intervention aimed at improving parents’ satisfaction with decision making. Briefings were conducted during daily hospital rounds. Physicians and nurses were asked to sit while using a checklist as a communication guide. A two-part study was conducted to determine feasibility of a randomized controlled trial of a parent briefing. One component was a psychometric evaluation of an instrument to measure parents’ satisfaction with decision making. The other was a phase I single group, post-test study of the parent briefing. Eighty-two parents of children admitted to an in-patient unit in a large metropolitan pediatric health centre, with an expected length of stay ≥ 3 days, completed the Family Satisfaction with Decision Making (FS/DM) subscale and the Decisional Conflict Scale (DCS) prior to discharge. A subgroup of parents participated in the parent briefing study. The Cronbach’s alpha reliability coefficient of the FS/DM was 0.87, and it was inversely correlated with the DCS (r2= -0.635, p<0.0001). Eighteen physicians, 25 nurses, and 31 parents participated in the phase I trial of the briefing intervention. Sixty-eight out of an expected 93 briefings were carried out as per study protocol. Nineteen parents did not receive the required “dose” of the study intervention. Mean time to complete the intervention was 11.9 minutes (SD = 6.9). Parents and nurses rated the acceptability and usefulness of the intervention favourably, whereas physicians’ ratings were mixed. The FS/DM instrument is a suitable primary outcome measure for an RCT. However, more work needs to be done, to ensure the feasibility of the intervention, including more intensive clinician training.

Children with complex health problems who are dependent upon medical technology require frequent hospitalizations, during which parents must make difficult decisions regarding their child’s care. Although principles of “family-centred care” have been widely adopted by paediatric hospitals, studies indicate that many parents are dissatisfied with their roles in decisions about their child’s care. Pierre Bourdieu’s Logic of Practice, specifically his concepts of field, capital, and habitus, as they relate to cultural and symbolic capital within the field of pediatric medicine, were used to guide the design of a parent briefing intervention aimed at improving parents’ satisfaction with decision making. Briefings were conducted during daily hospital rounds. Physicians and nurses were asked to sit while using a checklist as a communication guide. A two-part study was conducted to determine feasibility of a randomized controlled trial of a parent briefing. One component was a psychometric evaluation of an instrument to measure parents’ satisfaction with decision making. The other was a phase I single group, post-test study of the parent briefing. Eighty-two parents of children admitted to an in-patient unit in a large metropolitan pediatric health centre, with an expected length of stay ≥ 3 days, completed the Family Satisfaction with Decision Making (FS/DM) subscale and the Decisional Conflict Scale (DCS) prior to discharge. A subgroup of parents participated in the parent briefing study. The Cronbach’s alpha reliability coefficient of the FS/DM was 0.87, and it was inversely correlated with the DCS (r2= -0.635, p<0.0001). Eighteen physicians, 25 nurses, and 31 parents participated in the phase I trial of the briefing intervention. Sixty-eight out of an expected 93 briefings were carried out as per study protocol. Nineteen parents did not receive the required “dose” of the study intervention. Mean time to complete the intervention was 11.9 minutes (SD = 6.9). Parents and nurses rated the acceptability and usefulness of the intervention favourably, whereas physicians’ ratings were mixed. The FS/DM instrument is a suitable primary outcome measure for an RCT. However, more work needs to be done, to ensure the feasibility of the intervention, including more intensive clinician training.