Background. While the prevalence of a pathogenic variant in the BRCA1 and BRCA2 genes occurs in about 1:400 (0.25%) in the general population, the prevalence is as high as 1:40 (2.5%) among the Ashkenazi Jewish population. Despite cost-effective preventive measures for mutation carriers, Orthodox Jews constitute a cultural and religious group that presents challenges to BRCA1 and BRCA2 genetic testing. This study analyzed a dialogue of key stakeholders and community members to explore factors that influence decision-making about BRCA1 and BRCA2 genetic testing in the New York Orthodox Jewish community. Methods. Qualitative research methods, based in Grounded Theory and Narrative Research, were utilized to analyze the narratives of key stakeholders and community members in an analysis of qualitative data collected from 49 stakeholders. A content analysis was conducted to identify themes; inter-rater reliability was 71%. Results. Facilitators to genetic testing were prevention and education, while barriers to genetic testing included negative emotions, impact on family/romantic relationships, cost, and stigma. The role of religious figures and healthcare professionals in medical decision-making were viewed as controversial. Education, health, and community were discussed as influential factors. There were issues around disclosure, implementation, and information needs. Conclusion. This study revealed the voices of the Orthodox Jewish women (decision-makers) and key stakeholders (influencers) who play a critical role in the medical decision-making process. The findings have broad implications for engaging community stakeholders within faith-based or culturally distinct groups to ensure better utilization of healthcare services for cancer screening and prevention designed to improve population health.

The purpose of this hermeneutic phenomenological study was to understand the essence of the lived experience of women after having an abnormal prenatal ultrasound. One hundred years ago, health disciplines had limited therapies for prenatal and neonatal disorders. During this period, the eugenics movement influenced leaders to involuntarily sterilize individuals who were sought to be "unfit" to prevent disorders in offspring. ... One of these contemporary reproductive genetic technologies is the use of ultrasound and serum bio-medical markers for detection of congenital, chromosome, and genetic disorders. When ultrasounds reveal abnormal findings, the perceived perfect pregnancy vanishes and gives way to feelings of shock, disbelief, fear, guilt, loss, and threats to self and their unborn baby. Twelve women who had an abnormal ultrasound were interviewed within the context of their cultural values and beliefs. The method of van Manen's hermeneutic phenomenology illuminated the meaning for these women in their life worlds. ... They endured this experience through their own coping mechanisms, but often felt uncertainty and emotional turmoil until the birth. The women also sought comfort through their cultural values, beliefs, and traditions. In coping with the risks found on this abnormal ultrasound, women often selected silence or blocking perceived threats. With these coping methods, they were alone in their suffering. ... Health providers, in not recognizing these women's misunderstandings and emotional fears, abandoned them in their psychosocial and cultural needs. The significance reveals that nurses and health providers need to infuse human caring ways of being, knowing, and doing within advanced technological environments. / by Jeanne Chatham Gottlieb. / Thesis (Ph.D.)--Florida Atlantic University, 2013. / Includes bibliography. / Mode of access: World Wide Web. / System requirements: Adobe Reader.

Indiana University-Purdue University Indianapolis (IUPUI) / While the majority of chronic pain patients report receiving inadequate care, there is evidence that female and Black patients receive less analgesic medications and treatment for their chronic pain compared to male and White patients, respectively. While treatment disparities have been evidenced in the literature, there is little understanding of provider-factors, such as their decision-making awareness and attitudes, which may contribute to the differences in treatment. This investigation employed quantitative and qualitative procedures to examine the relationship between patient demographics and chronic pain treatment variability, providers’ awareness of these non-medical influences on their decisions, and the extent to which providers’ gender and racial attitudes associate with their treatment decisions. Twenty healthcare trainees made pain treatment decisions (opioid, antidepressant, physical therapy, pain specialty referral) for 16 computer-simulated patients presenting with chronic low back pain; patient sex and race were manipulated across vignettes. Participants then selected among 9 factors, including patient demographics, to indicate which factors influenced their treatment decisions for the simulated patients and completed gender and racial attitude measures. After online study completion, follow-up semi-structured interviews were conducted to discuss the medical/non-medical factors that influence trainees’ clinical treatment decisions. Quantitative analysis indicated that 5%-25% of trainees were actually influenced (p<0.10) by patient sex and race in their treatments, and on the whole, trainees gave higher antidepressant ratings to White than Black patients (p<.05). Fifty-five percent demonstrated concordance, or awareness, between their actual and reported use of patient demographics. Follow-up McNemar’s test indicated trainees were generally aware of the influence of demographics on their decisions. Overall, gender and racial attitudes did not associate with trainees’ treatment decisions, except trainees’ complementary stereotypes about Black individuals were positively associated with their opioid decisions for White patients. During qualitative interviews, aware and unaware trainees discussed similar themes related to sex and racial/ethnic differences in pain presentation and tailoring treatments. We found that (1) a subset of trainees were influenced by patient sex and race when making chronic pain treatment decisions, (2) trainees were generally aware of the influence of patient demographics, and (3) trainees discussed differences in pain presentation based on patients’ sex and ethnic origin. These findings suggest trainees’ are influenced by patient demographics and hold stereotypes about patient populations, which may play a role in their decision-making.