The Experts below are selected from a list of 26193 Experts worldwide ranked by ideXlab platform
Raymond H Kim - One of the best experts on this subject based on the ideXlab platform.
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next generation Service delivery a scoping review of patient outcomes associated with alternative models of Genetic counseling and Genetic testing for hereditary cancer
Cancers, 2018Co-Authors: Jeanna Mccuaig, Susan Armel, Melanie Care, Alexandra Volenik, Raymond H KimAbstract:The combination of increased referral for Genetic testing and the current shortage of Genetic counselors has necessitated the development and implementation of alternative models of Genetic counseling and testing for hereditary cancer assessment. The purpose of this scoping review is to provide an overview of the patient outcomes that are associated with alternative models of Genetic testing and Genetic counseling for hereditary cancer, including germline-only and tumor testing models. Seven databases were searched, selecting studies that were: (1) full-text articles published ≥2007 or conference abstracts published ≥2015, and (2) assessing patient outcomes of an alternative model of Genetic counseling or testing. A total of 79 publications were included for review and synthesis. Data-charting was completed using a data-charting form that was developed by the study team for this review. Seven alternative models were identified, including four models that involved a Genetic counselor: telephone, telegenic, group, and embedded Genetic counseling models; and three models that did not: mainstreaming, direct, and tumor-first Genetic testing models. Overall, these models may be an acceptable alternative to traditional models on knowledge, patient satisfaction, psychosocial measures, and the uptake of Genetic testing; however, particular populations may be better served by traditional in-person Genetic counseling. As precision medicine initiatives continue to advance, institutions should consider the implementation of new models of Genetic Service delivery, utilizing a model that will best serve the needs of their unique patient populations.
Barbara A Bernhardt - One of the best experts on this subject based on the ideXlab platform.
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Pregnancy as a proclamation of faith: Ultra-Orthodox Jewish women navigating the uncertainty of pregnancy and prenatal diagnosis.
American journal of medical genetics. Part A, 2011Co-Authors: Elly Teman, Tsipy Ivry, Barbara A BernhardtAbstract:Research has suggested that religion and spirituality may inform individuals' interpretation of and responses to uncertainty during pregnancy including the possibility of Genetic disorders. In this study, 25 qualitative interviews were undertaken with ultra-Orthodox [Haredi] Jewish women about their experiences with uncertainties related to pregnancy, prenatal care, and prenatal diagnosis. We found that women draw upon a particular set of faith-based concepts to cope with the uncertainties of pregnancy and to make decisions regarding prenatal testing. The women draw on the religious concepts of faith and certainty, which are based on trusting that God will not test them beyond what they can withstand. When prenatal screening indicates a possible fetal anomaly or when a disabled child is born, these women interpret the situation as a God-sent ordeal in which they are called upon to prove their trust and certainty in God's plan and to resist the uncertainties generated by the probability-based technologies. This research has implications for Genetic Service providers when discussing prenatal testing and fetal anomalies with Haredi women.
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distress and burnout among Genetic Service providers
Genetics in Medicine, 2009Co-Authors: Barbara A Bernhardt, Cynda Hylton Rushton, Joseph A Carrese, Reed E Pyeritz, Ken Kolodner, Gail GellerAbstract:Purpose: To determine the nature, sources, prevalence, and consequences of distress and burnout among Genetics professionals. Methods: Mailed survey of randomly selected clinical Geneticists (MDs), Genetic counselors, and Genetic nurses. Results: Two hundred and fourteen providers completed the survey (55% response rate). Eight discrete sources of distress were identified forming a valid 28-item scale (α = 0.89). The greatest sources of distress were compassion stress, the burden of professional responsibility, negative patient regard, and concerns about informational bias. Genetic counselors were significantly more likely to experience personal values conflicts, burden of professional responsibility, and concerns about informational bias than MDs or nurses. Burnout scores were lower among those practicing more than 20 years and nurses. Distress scores were positively correlated with burnout and professional dissatisfaction (P < 0.0001). Eighteen percent of respondents think about leaving patient care, and burnout was the most significant predictor. Predictors of burnout included greater distress, fewer years in practice, working in university-based settings, being a Genetic counselor or an MD, and deriving less meaning from patient care. Conclusions: Genetic Service providers experience various types of distress that may be risk factors for burnout and professional dissatisfaction. Interventions to reduce distress and burnout are needed for both trainees and practitioners.
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the role and impact of personal faith and religion among Genetic Service providers
American Journal of Medical Genetics Part C-seminars in Medical Genetics, 2009Co-Authors: Gail Geller, Ken Kolodner, Ellyn Micco, Rachel Silver, Barbara A BernhardtAbstract:This paper describes the impact of Genetic Service providers' personal faith and religious values on their experiences interacting with colleagues and patients. We surveyed 480 clinical Geneticists (MDs), Genetic counselors (GCs), and Genetic nurses randomly selected from their professional associations, and then interviewed a sample of survey respondents. Outcomes included religiosity, coping with distress through spiritual beliefs, and personal value conflicts (PVCs). Two hundred fourteen providers completed the survey out of an estimated 348 eligible (61% response rate). Importance attributed to regular attendance at religious Services ranged from 39% (not at all important) to 27% (very important). Reliance on religion and spiritual beliefs as a source of comfort ranged from 48% (never) to 33% (sometimes or often). Religiosity varied by discipline with 58% of nurses thinking regular attendance at religious Services was moderately or very important as compared to 47% of GCs and 30% of MDs (P= 0.006). Ten percent of respondents had difficulty reconciling their own faith with being a Genetics professional, 14% felt the need to hide their own faith from their colleagues or patients, 7% thought their professional stance was not consistent with their personal values, and 4% felt ostracized by the Genetics community because of their personal beliefs. The experience of such PVCs was positively correlated with religiosity (r = 0.35; P< 0.0001). GCs were more likely to experience PVCs than MDs or nurses (P= 0.013). Data from the interviews (N=54) support these findings. A significant minority of Genetic Service providers are religiously observant and rely on their religious values to cope with distress. These individuals often experience difficulty reconciling their religious beliefs with the expectations of their profession, and sharing their beliefs with their colleagues and patients. Efforts should be made to prevent or reduce the secrecy surrounding personal faith and religion among Genetics professionals.
Jeanna Mccuaig - One of the best experts on this subject based on the ideXlab platform.
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next generation Service delivery a scoping review of patient outcomes associated with alternative models of Genetic counseling and Genetic testing for hereditary cancer
Cancers, 2018Co-Authors: Jeanna Mccuaig, Susan Armel, Melanie Care, Alexandra Volenik, Raymond H KimAbstract:The combination of increased referral for Genetic testing and the current shortage of Genetic counselors has necessitated the development and implementation of alternative models of Genetic counseling and testing for hereditary cancer assessment. The purpose of this scoping review is to provide an overview of the patient outcomes that are associated with alternative models of Genetic testing and Genetic counseling for hereditary cancer, including germline-only and tumor testing models. Seven databases were searched, selecting studies that were: (1) full-text articles published ≥2007 or conference abstracts published ≥2015, and (2) assessing patient outcomes of an alternative model of Genetic counseling or testing. A total of 79 publications were included for review and synthesis. Data-charting was completed using a data-charting form that was developed by the study team for this review. Seven alternative models were identified, including four models that involved a Genetic counselor: telephone, telegenic, group, and embedded Genetic counseling models; and three models that did not: mainstreaming, direct, and tumor-first Genetic testing models. Overall, these models may be an acceptable alternative to traditional models on knowledge, patient satisfaction, psychosocial measures, and the uptake of Genetic testing; however, particular populations may be better served by traditional in-person Genetic counseling. As precision medicine initiatives continue to advance, institutions should consider the implementation of new models of Genetic Service delivery, utilizing a model that will best serve the needs of their unique patient populations.
Lori Williamson Dean - One of the best experts on this subject based on the ideXlab platform.
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Barriers and strategies to integrate medical Genetics and primary care in underserved populations: a scoping review
Journal of Community Genetics, 2021Co-Authors: Ann F. Chou, Ashten R. Duncan, Gene Hallford, David M. Kelley, Lori Williamson DeanAbstract:Despite clinical and technological advances, serious gaps remain in delivering Genetic Services due to disparities in workforce distribution and lack of coverage for Genetic testing and counseling. Genetic Services delivery, particularly in medically underserved populations, may rely heavily on primary care providers (PCPs). This study aims to identify barriers to integrating Genetic Services and primary care, and strategies to support integration, by conducting a scoping review. Literature synthesis found barriers most frequently cited by PCPs including insufficient knowledge about Genetics and risk assessment, lack of access to Geneticists, and insufficient time to address these challenges. TeleGenetics, patient-centered care, and learning communities are strategies to overcome these barriers. TeleGenetics supplements face-to-face clinics by providing remote access to Genetic Services. It may also be used for physician consultations and education. Patient-centered care allows providers, families, and patients to coordinate Services and resources. Access to expert information provides a critical resource for PCPs. Learning communities may represent a mechanism that facilitates information exchange and knowledge sharing among different providers. As PCPs often play a crucial role caring for patients with Genetic disorders in underserved areas, barriers to primary care-medical Genetics integration must be addressed to improve access. Strategies, such as teleGenetics, promotion of evidence-based guidelines, point-of-care risk assessment tools, tailored education in Genetics-related topics, and other system-level strategies, will facilitate better Genetics and primary care integration, which in turn, may improve Genetic Service delivery to patients residing in underserved communities.
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Access barriers to Genetic Services for Spanish‐speaking families in states with rapidly growing migrant populations
Journal of genetic counseling, 2019Co-Authors: Henry Gene Hallford, Mary Ann Coffman, Alexandra J Obregón-tito, Anayeli Herrera Morales, Lori Williamson DeanAbstract:Hispanics are among the fastest growing U.S. population segments, accounting for the majority of growth since 2000. Hispanics are heterogeneous and include foreign-born and U.S. citizens, monolingual fluent English speakers, monolingual Spanish-speakers, multilingual speakers, and socioeconomically and educationally diverse subgroups. States within the central United States (U.S.), referred to as the Heartland, have numerically small Hispanic populations, but rapidly growing Hispanic populations that are expanding faster than the overall U.S. Hispanic population. The Hispanic populations across the U.S. are widely known to be medically underserved. This qualitative study identifies barriers native Spanish-speakers experience when locating and accessing Genetic Services for their children. After providing informed consent, 29 parents in three Heartland states were interviewed and asked about their awareness of available Genetic Services, utilization of available Services and difficulties they encountered when using them. Interviewees reported delayed Genetic Service referrals, limited availability and inadequate interpretation Services, verbal and written communication problems during clinic visits, culturally incongruent healthcare expectations and limited appreciation for how Genetic Services benefit them. Necessary efforts to understand and improve Genetic Service access and usefulness for Hispanic populations are underway in the Heartland and elsewhere and should continue to be expanded.
Shawna Morrison - One of the best experts on this subject based on the ideXlab platform.
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group Genetic counseling an alternate Service delivery model in a high risk prenatal screening population
Prenatal Diagnosis, 2017Co-Authors: Mireille Cloutier, Lauren Gallagher, Claire Goldsmith, Salwa Akiki, Nick Barrowman, Shawna MorrisonAbstract:OBJECTIVE To address the growing demand for prenatal Genetic Services, group Genetic counseling was explored as an alternative Service delivery model for women with a positive prenatal screening result. METHOD Women were recruited from a prenatal Genetic Service and systematically allocated to a traditional individual appointment with a Genetic counselor or a group Genetic counseling session. Questionnaires were administered to assess patient psychological outcomes, knowledge, and satisfaction following individual and group Genetic counseling for a positive prenatal screen. Genetic counselor time per type of patient was measured. RESULTS Of 172 participants, 107 (62.2%) received group Genetic counseling and 65 (37.8%) received individual Genetic counseling. Both group and individual Genetic counseling encounters significantly decreased patient anxiety, increased perceived personal control, decreased decisional conflict, and increased knowledge. Satisfaction was high following both methods. Anxiety was significantly decreased in women who received individual Genetic counseling compared with group sessions (P < .001). Genetic counselors spent less time per group patient seen compared with individual patients. CONCLUSION Group Genetic counseling followed by the option of brief individual Genetic counseling appears acceptable to women in a high-risk prenatal screening population. The findings support an alternative Service delivery model for prenatal Genetic Services that could optimize the utilization of Genetic counseling resources.