Sleep disturbance may be present in a substantial proportion of individuals with PMS and is negatively associated with caregivers' well-being. However, most individuals with PMS have not been evaluated for sleep disorders. When properly diagnosed, many sleep disorders can be alleviated with intervention. Thus, routine screening for and evaluation of sleep disturbances in individuals with PMS may have long-term positive impacts on the well-being of these individuals and their caregivers.
Risk-reducing mastectomy (RRM) and salpingo-oophorectomy (RRSO) are increasingly used to reduce breast and ovarian cancer risk following BRCA1/BRCA2 testing. However, little is known about how genetic counseling influences decisions about these surgeries. Although previous studies have examined intentions prior to counseling, few have examined RRM and RRSO intentions in the critical window between genetic counseling and test result disclosure. Previous research has indicated that intentions at this time point predict subsequent uptake of surgery, suggesting that much decision-making has taken place prior to result disclosure. This period may be a critical time to better understand the drivers of prophylactic surgery intentions. The aim of this study was to examine predictors of RRM and RRSO intentions. We hypothesized that variables from the Health Belief Model would predict intentions, and we also examined the role of affective factors. Participants were 187 women, age 21–75, who received genetic counseling for hereditary breast and ovarian cancer. We utilized multiple logistic regression to identify independent predictors of intentions. 49.2% and 61.3% of participants reported intentions for RRM and RRSO, respectively. Variables associated with RRM intentions include: newly diagnosed with breast cancer (OR = 3.63, 95% CI = 1.20–11.04), perceived breast cancer risk (OR = 1.46, 95% CI = 1.17–1.81), perceived pros (OR = 1.79, 95% CI = 1.38–2.32) and cons of RRM (OR = 0.81, 95% CI = 0.65–0.996), and decision conflict (OR = 0.80, 95% CI = 0.66–0.98). Variables associated with RRSO intentions include: proband status (OR = 0.28, 95% CI = 0.09–0.89), perceived pros (OR = 1.35, 95% CI = 1.11–1.63) and cons of RRSO (OR = 0.72, 95% CI = 0.59–0.89), and ambiguity aversion (OR = 0.79, 95% CI = 0.65–0.95). These data provide support for the role of genetic counseling in fostering informed decisions about risk management, and suggest that the role of uncertainty should be explored further.
Prior research suggests language concordance positively affects physician-patient communication and their relationship, but few studies have investigated language concordance in genetic counseling sessions for Spanish-speaking patients. This study explored Spanish-speaking genetic counselors' experiences and perceptions of the effects of Spanish language concordance on session processes and outcomes using the Reciprocal-Engagement Model (REM) of practice as a conceptual framework.There are 17 REM goals associated with four goal factors. A secondary purpose was to explore whether perceived effects are modified when the genetic counselor identifies as Latinx. Ten Latina and nine non-Latina Spanish-speaking genetic counselors who practice in the U.S. participated in semi-structured phone interviews. Directed content analysis yielded four themes reflecting how spoken language concordance promotes REM goal factors (Understanding and Appreciation, Support and Guidance, Facilitative Decision-Making, and Patient-Centered Education) and individual goals within each factor. Six additional themes also emerged: Patients feel grateful/relieved to have a genetic counselor who communicates directly in Spanish; Challenges are lessened (e.g., no need for an interpreter); Language interacts with other cultural similarities to achieve REM goals; Use of Spanish conveys genetic counselor is 'going above and beyond' for patients; Communicating medical information is difficult even when Spanish proficient; and Genetic counselor still able to achieve REM goals without language concordance. There were no apparent thematic differences between Latina and non-Latina genetic counselors. Results suggest language concordance positively influences relationship building and communication and facilitates achievement of REM goals. Proficiency in more than one language is 'value added' for genetic counseling services and should be encouraged in genetic counseling graduate programs and continuing education opportunities. Future research could assess patient perceptions of genetic counseling sessions in which the genetic counselor and patient use the patient's preferred language.
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