RESUMEN
For breast cancer survivors, returning to work is an important step for their personal, financial, and psycho-social recovery. Returning to work as a school counselor can be particularly challenging because of the demands of their job and stress at work. This qualitative study examines return to work among school counselors who are breast cancer survivors. In-depth, semi-structured interviews were conducted with 28 survivors of breast cancer stages I-III between the ages of 32 and 55, and up to ten years after the completion of chemotherapy. Interviews focused on the discovery of the illness, treatment period, ramifications of the diagnosis on various aspects of life, and implications for work. Using thematic analysis of the data collected, analysis of the findings revealed three key themes: 1) "Everyone is replaceable": The significance of disruptions in work continuity for school counselors who are breast cancer survivors. 2) "From Zero to a Hundred": Challenges Faced by Counselors in Returning to Work after Breast Cancer Recovery.3) "It's hard to listen to counselees' problems when I am immersed in my own crisis": How surviving breast cancer affects return to work among school counselors. Findings highlight the unique needs of these counselors and the challenges they face upon returning to work. The study discusses recommendations for school principals including training, advocacy, and awareness to support survivors and improve their return to work.
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Neoplasias de la Mama , Supervivientes de Cáncer , Consejeros , Investigación Cualitativa , Reinserción al Trabajo , Humanos , Femenino , Neoplasias de la Mama/psicología , Reinserción al Trabajo/psicología , Supervivientes de Cáncer/psicología , Persona de Mediana Edad , Adulto , Consejeros/psicología , Instituciones Académicas , ConsejoRESUMEN
BACKGROUND: The Special Supplemental Nutrition Program for Women, Infants, and Children, also known as WIC, is associated with improved health outcomes for participants. The role of WIC Peer Counselors was created to support breastfeeding among WIC participants. OBJECTIVE: This Naturalistic Inquiry study explored the perceptions and experiences of 9 WIC Peer Counselors located in Southeast Texas. METHODS: The WIC Peer Counselors were recruited via purposive and snowball sampling and participated in semi-structured face-to-face interviews. Data collection, analysis, and trustworthiness adhered to established guidelines. RESULTS: Study findings revealed the novel approaches the WIC Peer Counselors used to encourage, initiate, support, and sustain WIC participants' breastfeeding, including using tools of their craft, involving and educating family members, making themselves accessible 24/7, and identifying the need for equipment and supplies. CONCLUSIONS: The WIC Peer Counselors' understanding of the breastfeeding culture of their WIC clients and their unique ability to establish and maintain rapport with them make WIC Peer Counselors ideally suited resources to meet the WIC goal of increasing breastfeeding and thereby improving the health of the nation. Health care providers should recognize the valuable, yet unrecognized and underutilized, contributions of WIC Peer Counselors and consider referring pregnant and postpartum dyads to WIC for breastfeeding education and support.
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Lactancia Materna , Consejeros , Asistencia Alimentaria , Grupo Paritario , Humanos , Lactancia Materna/psicología , Femenino , Consejeros/psicología , Texas , Adulto , Consejo/métodos , Consejo/normas , Apoyo Social , Investigación CualitativaRESUMEN
RESEARCH QUESTION: What are the lived experiences of donor-conceived people, parents, sperm donors and counsellors related to legal age limits on accessing donor information in the Netherlands? DESIGN: A phenomenological study was carried out that included 20 donor-conceived individuals, 15 parents, 6 sperm donors and 5 counsellors. Data were collected through online qualitative in-depth interviews and focus groups. The data were analysed using Dahlberg's Reflective Lifeworld Approach. RESULTS: The results show how: (i) age limits create challenges related to dependency, autonomy and loyalty to parents; (ii) donor information can be important for identity development, which looks different at different ages; (iii) inaccessible information can lead to unfair loss and may be perceived as negative; (iv) relational stability provides a good foundation for dealing with the (in)accessibility of donor information; (v) procedural barriers and age limits increase the inaccessibility of donor information; and (vi) comprehensive counselling is desired for donor-conceived individuals, parents and donors. CONCLUSIONS: This study shows that legal age limits on accessing donor information can lead to several negative consequences. The age limits focus on one individual, which is not appropriate for questions about ancestry that always pertain to a relational network. Counselling should be tailored to the child's needs, and the child's family should be involved. Furthermore, the donor should receive independent counselling.
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Padres , Donantes de Tejidos , Humanos , Masculino , Adulto , Donantes de Tejidos/psicología , Femenino , Padres/psicología , Países Bajos , Consejo , Factores de Edad , Inseminación Artificial Heteróloga/psicología , Inseminación Artificial Heteróloga/legislación & jurisprudencia , Persona de Mediana Edad , Espermatozoides , Consejeros/psicología , Adulto JovenRESUMEN
The Department of Veteran Affairs established Readjustment Counseling Service (RCS) to meet the mental health needs of active-duty service members, veterans, and their families. A diverse therapeutic skill set is needed to serve this complex population. To assess training needs, a national mixed-methods needs assessment consisting of a survey for RCS counselors and focus groups among counselors, RCS educational trainers, and national leadership was conducted. Survey results (n = 681) showed that RCS counselors were most interested in trainings on moral injury, acceptance and commitment therapy, and military sexual trauma (MST). Desired trainings aligned with populations served. Themes from focus groups revealed the need for foundational trainings so that all RCS counselors are adept in treating MST, moral injury, and posttraumatic disorder and proficient in caring for couples. Additionally, counselors desired advanced trainings tailored to individual counselors' needs. RCS counselors identified multiple trainings to help them treat those they serve.
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Terapia de Aceptación y Compromiso , Consejeros , Veteranos , Estados Unidos , Humanos , Veteranos/psicología , Consejeros/psicología , Evaluación de Necesidades , United States Department of Veterans Affairs , Consejo/métodosRESUMEN
Studies have consistently shown that psychiatric genetic counseling (pGC) helps people with psychiatric conditions by increasing empowerment and self-efficacy, and addressing emotions like guilt. Yet, it is not routinely provided. Genetic counselors and trainees express low confidence in their ability to provide meaningful pGC, especially in the absence of adequate training. Therefore, to address this gap a "Psychiatric Genetic Counseling for Genetic Counselors" (PG4GC) workshop was developed and delivered to 13 groups of participants (primarily qualified genetic counselors and trainees) between 2015 and 2023 (10 workshops were delivered in-person, and three virtually). Participants completed quantitative questionnaires both before and after completing the workshop to assess their comfort, knowledge, behavior, and feeling of being equipped to provide pGC. In total, 232 individuals completed the pre-workshop questionnaire and 154 completed the post-workshop questionnaire. Participants felt more comfortable, knowledgeable, and equipped to provide pGC, and reported being more likely to address psychiatric concerns after the workshop, regardless of whether they were trainees or practicing professionals and whether they completed the workshop in-person or virtually. This study suggests that the PG4GC workshop is an effective educational tool in pGC training that may aid in broader implementation of the service.
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Consejeros , Asesoramiento Genético , Humanos , Asesoramiento Genético/métodos , Asesoramiento Genético/psicología , Encuestas y Cuestionarios , Consejeros/educación , Consejeros/psicología , Femenino , Masculino , Adulto , Trastornos Mentales/genética , Educación/métodos , Psiquiatría/educaciónRESUMEN
OBJECTIVES: Non-normative uncertainty (uncertainty about empirical facts) and normative uncertainty (uncertainty about moral values or beliefs) regarding unsolicited findings (UFs) might play an important role in clinical genetics. Identifying normative uncertainty is of special interest since it might guide towards novel directions for counseling practice. This study aims to gain insight into the role of non-normative and normative uncertainty regarding UFs, as expressed by counselees and counselors. METHODS: We performed a secondary qualitative analysis of interviews with counselees (n = 20) and counselors (n = 20) who had been confronted with UFs. Following a deductive approach, we used Han et al.'s existing theoretical framework of uncertainty, in which we additionally incorporated normative uncertainty. RESULTS: Major issues of non-normative uncertainty were practical and personal for counselees, whilst counselors' uncertainty pertained mainly to scientific issues. Normative uncertainty was a major theme throughout the interviews. We encountered the moral conflicts of autonomy vs. beneficence and non-maleficence and of autonomy vs. truthfulness. CONCLUSION: Non-normative uncertainty regarding UFs highlights the need to gain more insight in their penetrance and clinical utility. This study suggests moral conflicts are a major source of feelings of uncertainty in clinical genetics. PRACTICE IMPLICATIONS: Exploring counselees' non-normative uncertainties and normative conflicts seems a prerequisite to optimize genetic counseling.
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Consejeros , Pruebas Genéticas , Humanos , Incertidumbre , Asesoramiento Genético/psicología , Consejeros/psicología , EmocionesRESUMEN
Increasingly, pregnant people in the United States are choosing to give at birth at home, and certified professional midwives (CPMs) often attend these births. Care by midwives, including home birth midwives, has the potential to decrease unnecessary medical interventions and their associated health care costs, as well as to improve maternal satisfaction with care. However, lack of integration into the health care system affects the ability of CPMs to access standard medications and testing for their clients, including prenatal screening. Genetics and genomics are now a routine part of prenatal screening, and genetic testing can contribute to identifying candidates for planned home birth. However, research on genetics and midwifery care has not, to date, included the subset of midwives who attend the majority of planned home births, CPMs. The purpose of this study was to examine CPMs' access to, and perspectives on, one aspect of prenatal care, genetic counselors and genetic counseling services. Using semi-structured interviews and a modified grounded theory approach to narrative analysis, we identified three key themes: (1) systems-level issues with accessing information about genetic counseling and genetic testing; (2) practice-level patterns in information delivery and self-awareness about knowledge limitations; and (3) client-level concerns about the value of genetic testing relative to difficulties with access and stress caused by the information. The results of this study can be used to develop decision aids that include information about genetic testing and genetic counseling access for pregnant people intending home births in the United States.
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Asesoramiento Genético , Pruebas Genéticas , Teoría Fundamentada , Partería , Humanos , Femenino , Asesoramiento Genético/psicología , Embarazo , Vermont , Adulto , Actitud del Personal de Salud , Persona de Mediana Edad , Consejeros/psicología , Entrevistas como Asunto , Enfermeras Obstetrices/psicología , Atención Prenatal , Parto Domiciliario/psicología , Investigación CualitativaRESUMEN
Delivering difficult news is a common occurrence in genetic counseling. This is evidenced by widespread instruction among genetic counseling programs. There is a disconnect in the confidence level of being able to deliver difficult news (DDN) following educational training across healthcare disciplines. Other healthcare professions have addressed this issue with simulation-based training based on the SPIKES protocol, a stepwise process for delivering difficult news. To our knowledge, there is limited research that investigates the impact of simulation-based training in delivering difficult news for genetic counselors. Our aim was to develop simulation-based training in how to deliver difficult news for genetic counselors and analyze the extent to which it increased their confidence to deliver difficult news. Board-certified genetic counselors from all specialties were recruited to participate in a 2-h training session which included the opportunity to practice delivering difficult news. We collected self-reported confidence scores in each of the SPIKES steps from 16 genetic counselors pre- and post-intervention. Participants answered open-ended evaluations about the program's strengths, weaknesses, and gaps in delivering difficult news content. Almost all participants (N = 15) stated that they had gained confidence in delivering difficult news following training completion. Confidence significantly improved in four of seven SPIKES steps. Participants found strengths of the training program to be in their ability to practice with a simulated patient, to reference concrete examples, and to follow the program easily. The results of this study suggest that post-graduate training in how to deliver difficult news using the SPIKES protocol may strengthen genetic counselors' confidence in performing this important skill.
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Consejeros , Humanos , Consejeros/psicología , Asesoramiento Genético , Autoinforme , Escolaridad , ComunicaciónRESUMEN
The genetic counseling (GC) community has faced criticism about the duality of promoting patient autonomy while also advocating for individuals with disabilities. This study assessed the attitudes of the disability community and GCs to identify content that should be included in GC disability education and evaluate the landscape of GC disability education. Members of the disability community and GCs completed an electronic survey distributed through electronic listservs and partnering organizations. A total of 672 responses were analyzed from both the disability community (n = 596) and the GC community (n = 76). Members of the disability community noted differences in GC comfort level discussing different aspects of disability with GCs being perceived as being very knowledgeable about medical aspects 71% of the time versus 49% of the time when discussing social/lifestyle aspects of disability. This discordance was reflected in GCs reported comfort level in discussing medical aspects (89%) and social aspects of disability (65%) during a session. Most GC respondents (71%) felt they received adequate knowledge during their disability education and variation was reported in the execution of disability education by training programs. Disability education content recommendations from the disability community and GCs included emphasizing four key aspects of disability: medical, social/lifestyle, lived experience, and the disability rights movement. Respondents of both cohorts stressed the inclusion of and exposure to persons with disabilities in disability education to understand the lived experience of persons with disabilities. The disability community identified additional disability education content to be included such as empathy training, family hardships, and mental health. The results of this study have practice implications and provide a foundation for training expectations to ensure future GCs possess the necessary skills to improve the quality of services provided to families and persons with disabilities.
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Consejeros , Personas con Discapacidad , Humanos , Consejeros/psicología , Personas con Discapacidad/psicología , Asesoramiento Genético/métodos , Encuestas y CuestionariosRESUMEN
BACKGROUND: Genetic counselors (GCs) have practiced in Inherited Retinal Disease (IRD) clinics for several decades. In this small subspecialty of genetic counseling, GCs are critical for patient understanding of genetic information, which can have prognostic, systemic, family planning and therapeutic implications. Recently, both access to genetic testing for IRDs and the number of genes associated with IRDs (>350) has increased dramatically. However, the practice models and roles of IRD GCs have not been previously described. MATERIALS AND METHODS: GCs working in academic IRD clinics were surveyed to assess their experience, clinical practices, and roles performed. The collected data was compared to the broader genetic counseling profession and to other specialties using publicly available data on GC professional practices. RESULTS: While roles of IRD GCs were overlapping with those of the overall genetic counseling profession, all survey respondents reported diverse roles that included both clinical and non-clinical duties, spending up to half their time on research and educational responsibilities. Most respondents (89%) felt that their clinic's MD to GC ratio was too high, while clinical load varied. IRD GCs report varying degrees of prior genetic counseling and ophthalmology-specific experience but unanimously desire additional subspecialty-specific training. CONCLUSIONS: This descriptive assessment of a small subspecialty suggests a need for growth in the number of GCs practicing in IRD clinics and could help to inform development of new GC positions in IRD centers. It also highlights the desire for additional GC-specific education and may be relevant to curriculum development within GC programs.
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Consejeros , Enfermedades de la Retina , Humanos , Consejeros/psicología , Asesoramiento Genético , Pruebas Genéticas , Enfermedades de la Retina/genética , Enfermedades de la Retina/terapia , Recursos HumanosRESUMEN
Opportunities for genetic counselors to work in the laboratory have grown exponentially, yet the professional development needed to serve in these roles had not been previously explored. This study aimed to identify competencies required for entry-level genetic counselors working in the laboratory, explore the perceived level of preparation of these competencies as noted by experts in the laboratories, and assess the perceived value of additional credentialing for genetic counselors practicing in these settings. Twenty genetic counselors working in the laboratory setting and five MD or PhD laboratory managers, identified through purposeful and snowball sampling and with at least 5 years of experience working in a laboratory, were interviewed using a semi-structured protocol. Transcripts were analyzed thematically using deductive and inductive coding. Key findings included the distinction of laboratory and industry roles as involving nondirect patient care and differing from genetic counseling roles in the clinical setting. Genetic counselors working in the laboratory feel well prepared to transition into this setting and provide a unique patient-focused perspective to laboratory roles, including variant interpretation, marketing, and product development. Practice-based competencies (PBCs) were translatable to those used in the laboratory, yet variant interpretation, limitations of genomics-based tests, and the business of health care were noted as important to these roles but not fully addressed in the PBCs. Additional skills were often developed through on-the-job training and interdisciplinary collaboration, but more exposure to diverse roles in genetic counseling programs' didactic and field training was recommended. The majority felt that requiring an additional post-master's credential to work in the laboratory setting may restrict movement into these roles. Several questioned their identity as genetic counselors as they were no longer providing direct patient care and/or had been dissuaded by others from pursuing a laboratory position. Research focused on professional identity among genetic counselors working in nondirect patient care roles is warranted.
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Consejeros , Humanos , Consejeros/psicología , Laboratorios , Asesoramiento Genético/métodosRESUMEN
Genetic counseling (GC) services are increasingly delivered by phone or video, resulting in more telehealth student rotations. The purpose of this study was to describe genetic counselors' utilization of telehealth for student supervision and to compare how their comfort, preferences, and perception of the difficulty of selected student supervision competencies vary between phone, video, and in-person student supervision. In 2021, patient-facing genetic counselors in North America with ≥1-year GC experience who supervised ≥3 GC students in the last 3 years received an invitation via the American Board of Genetic Counseling or the Association of GC Program Directors listservs to complete a 26-item online questionnaire. There were 132 responses eligible for analysis. Demographics were fairly consistent with the National Society of Genetic Counselors Professional Status Survey. The majority of participants used more than one service delivery model to provide GC services (93%) and supervise students (89%). Six supervisory competencies related to the student-supervisor communication (Eubanks HIggins et al., 2013) were perceived to be most difficult to accomplish by phone and easiest in-person (p < 0.0001). Participants were most comfortable in-person and least comfortable by telephone for both patient care and student supervision (p < 0.001). The majority of participants predicted continued use of telehealth for patient care but preferred in-person service delivery for both patient care (66%) and student supervision (81%). Overall, these findings indicate service delivery model changes in the field have an impact on GC education and suggest that the student-supervisor relationship may be different via telehealth. Furthermore, the stronger preference for in-person patient care and student supervision, despite predicted continued telehealth utilization, points to a need for multifaceted telehealth education initiatives.
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Consejeros , Humanos , Consejeros/psicología , Asesoramiento Genético/psicología , Estudiantes/psicología , Encuestas y Cuestionarios , América del NorteRESUMEN
Disclosure is the act of sharing a stigmatized identity, and members of the LGBTQ+ community make decisions related to disclosure multiple times throughout their life. Disclosure in medical settings can impact perceptions of care and outcomes for LGBTQ+ patients; however, little is understood about the process of decision-making regarding disclosure in the genetic counseling setting. As such, this study aimed to explore LGBTQ+ experiences in genetic counseling sessions and their disclosure behaviors. Fifty-five LGBTQ+ individuals who attended a genetic counseling session and 91 genetic counselors completed online surveys. The patient survey assessed for disclosure behaviors, experiences of discrimination, and comfort in genetic counseling sessions. The counselor survey evaluated comfort with the LGBTQ+ population in a counseling setting, whether counselors facilitate disclosure in sessions, and whether counseling is tailored for the LGBTQ+ population. Eighty-two percent of genetic counselors "rarely" or "never" ask about sexual orientation, and 69% "rarely" or "never" ask about gender identity. The majority of patients indicated they were not asked about their sexual orientation (87%) or gender identity (80%). Some patients reported experiencing discrimination or homo/transphobia in their genetic counseling sessions, with 6.12% of LGBQ+ patients experiencing discrimination and 24.1% of trans+ patients reporting discrimination. Over half of genetic counselors reported receiving training in LGBTQ+ healthcare and the majority reported comfort with providing care to LGBTQ+ patients. However, discrepancies between patient-reported experiences and genetic counselors' descriptions of their care for the LGBTQ+ population warrant further research and suggest additional training or changes in practice may be necessary.
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Consejeros , Minorías Sexuales y de Género , Humanos , Masculino , Femenino , Asesoramiento Genético/psicología , Revelación , Identidad de Género , Consejeros/psicologíaRESUMEN
Professional interpreters are an integral component of healthcare for Spanish-speaking individuals with limited English proficiency (LEP). Research has demonstrated that errors in interpretation are common and can contribute to poor outcomes for Spanish-speaking clients. Providers with some Spanish proficiency may be able to detect clinically significant interpretation errors, potentially limiting negative clinical outcomes and helping to reduce health disparities for clients with LEP. This study aimed to identify the level of Spanish proficiency necessary for genetic counselors to be able to detect a majority of clinically significant errors made by a professional interpreter during a reproductive genetic counseling session. Practicing genetic counselors and genetic counseling graduate students were surveyed regarding their Spanish language background, experience working with interpreters, and self-rated Spanish proficiency. Participants then watched short video clips from three simulated reproductive genetic counseling sessions conducted with a professional interpreter and were tasked with identifying clinically significant interpretation errors. Survey responses were analyzed from 118 participants who met eligibility criteria. Participants who reported "basic" and "fair" Spanish proficiency detected an average of 36.5% and 67% of clinically significant errors, respectively. Those reporting "good" proficiency or higher detected more than 80% of errors. Overall self-rated Spanish proficiency was positively correlated with years of Spanish language education and individual measures of speaking, listening, and reading proficiency, indicating that self-report may be a reasonable measure of proficiency when the goal is error detection in an interpreted session. Genetic counselors with even minimal Spanish proficiency can detect clinically significant interpretation errors, allowing for the correction of these errors during the session. Genetic counselors with "basic" and "fair" may consider genetic counseling-specific Spanish language classes to increase their proficiency to be able to detect a majority of interpretation errors and thereby improve the quality of care and reduce health disparities for Spanish-speaking clients.
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Consejeros , Dominio Limitado del Inglés , Humanos , Asesoramiento Genético , Barreras de Comunicación , Consejo , Consejeros/psicologíaRESUMEN
Difficult news has been described as any news that adversely and seriously affects an individual's view of their future. Research in oncology genetic counseling demonstrated that individuals do not prefer in-person or telephone delivery of their genetic test results. However, in the prenatal setting, there is limited research examining how patients prefer news related to their pregnancies be disclosed. This study aimed to assess the experiences and preferences of prenatal patients who received difficult news by telephone. A semi-structured interview guide was developed to assess patients' personal definitions of difficult news and their experiences receiving the news by telephone. Fifteen patients seen prenatally by a genetic counselor were interviewed. Interviews were transcribed and consensus-coded, using inductive content analysis to identify several themes. The most common definition of difficult news included unexpected, life-changing, or devastating information. Participants described aspects of their experience and strategies employed by their genetic counselor that was helpful when receiving the news, which was found to align with the SPIKES protocol, a six-step process of delivering difficult news to patients. Additional techniques that participants identified as beneficial and satisfactory included the genetic counselor's use of empathy, non-directiveness, and continuity and coordination of care. Participants also provided recommendations for improvement, including a discussion of the mode of result disclosure during pretest counseling, an option to follow up with their genetic counselor, personalized resources, and a summary of the results call. The findings of this study demonstrate that a patient-centered approach is preferred by patients who receive difficult news by telephone in the prenatal setting. Patients' identification of beneficial communication techniques and suggestions for improvement can be implemented by any healthcare provider responsible for delivering difficult news to prenatal patients.
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Consejeros , Asesoramiento Genético , Embarazo , Femenino , Humanos , Asesoramiento Genético/métodos , Revelación , Personal de Salud , Consejeros/psicología , TeléfonoRESUMEN
A growing percentage of genetic counselors are employed in roles that do not involve direct patient care, commonly in commercial diagnostic laboratories. This study aimed to assess characteristics of laboratory and industry (LI) roles and perceptions of the genetic counseling community's views towards such roles. Members of NSGC and ABGC were invited to participate in this study. Data analysis included descriptive and inferential statistics and select participant quotes are included to highlight key points identified by statistical analyses. Three hundred twenty-six genetic counselors who self-identified as currently or previously working within an LI role responded to the survey. Over 40% of participants reported feeling that they were not perceived positively by colleagues outside of LI settings, and 54% felt that GC colleagues in non-LI roles provided mostly negative commentary about LI GC roles. Over 90% of individuals felt that their employer was a factor in the way they were perceived by others and that this factor carried a bigger weight than job title, work setting, or even professional responsibilities. Qualitative responses from open-ended text questions suggest that while perceptions toward LI roles have improved over time, commentary regarding the "dark side" of genetic counseling persists. To promote the continued, unified growth of the genetic counseling profession and other healthcare professions, it is necessary to address this source of intra-professional conflict.
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Consejeros , Humanos , Consejeros/psicología , Laboratorios , Asesoramiento Genético , Encuestas y Cuestionarios , IndustriasRESUMEN
Genetic counselors strive to provide high-quality genetic services. To do so, it is essential to define quality in genetic counseling and identify opportunities for improvement. This Professional Issues article provides an overview of the evaluation of healthcare quality in genetic counseling. The National Society of Genetic Counselors' Research, Quality, and Outcomes Committee partnered with Discern Health, a value-based healthcare policy consulting firm, to develop a care continuum model of genetic counseling. Using the proposed model, currently available quality measures relevant to genetic counseling in the US healthcare system were assessed, allowing for the identification of gaps and priority areas for further development. A total of 560 quality measures were identified that can be applied to various aspects of the care continuum model across a range of clinical specialty areas in genetic counseling, although few measures were specific to genetic counseling or genetic conditions. Areas where quality measures were lacking included: attitudes toward genetic testing, family communication, stigma, and issues of justice, equity, diversity, and inclusion. We discuss these findings and other strategies for an evidence-based approach to quality in genetic counseling. Strategic directions for the genetic counseling profession should include a consolidated approach to research on quality and value of genetic counseling, development of quality metrics and patient-experience measures, and engagement with other improvement activities. These strategies will allow for benchmarking, performance improvement, and future implementation in accountability programs which will strengthen genetic counseling as a profession that provides evidence-based high-quality care to all patients.
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Consejeros , Asesoramiento Genético , Humanos , Asesoramiento Genético/psicología , Pruebas Genéticas , Atención a la Salud , Servicios Genéticos , Consejeros/psicologíaRESUMEN
Current guidelines from the National Society of Genetic Counselors (NSGC) recommend that patients' ancestry be obtained when taking a family history. However, no study has explored how consistently genetic counselors obtain or utilize this information. The goals of this study included assessing how genetic counselors collect their patients' ancestry, what factors influence this decision, and how they view the utility of this information. Genetic counselors working in a direct patient care setting in the US or Canada were recruited to participate in an anonymous survey via an NSGC email blast. Most participants (n = 115) obtain information about their patients' ancestry (96.5%), with the most common methods being directly asking the patient (91%) and utilizing intake forms (43.2%). Of participants who ask about ancestry directly, 50.5% always ask about the presence of Ashkenazi Jewish ancestry and 70.3% always ask about additional ancestries, suggesting that for most genetic counselors' collection of ancestry is standard practice. However, the clinical utility of ancestry information is highly variable, with the impact on genetic testing choice being particularly low. A slight majority of participants support a reevaluation of current ancestry guidelines (51.3%), with many participants suggesting that the varying utility of ancestry in different clinical indications/specialties should be incorporated into guidelines. Despite being standard practice for most genetic counselors, no unified approach or standard for how ancestral information should be used in genetic counseling practice was identified.
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Consejeros , Humanos , Consejeros/psicología , Asesoramiento Genético/psicología , Pruebas Genéticas , Sociedades , América del NorteRESUMEN
Genetic counseling plays a critical role in supporting individuals and their families' adaption to psychiatric conditions, addressing the multifactorial nature of these conditions in a personally meaningful and empowering way. Yet data related to the practice and attitudes of Australian genetic counselors about psychiatric genetic counseling (PGC) is limited. This survey investigated the practice of Australian genetic counselors, and their attitudes toward PGC. Genetic counselors (N = 393) were invited to participate in an anonymous online survey between March and May 2022. Forty-four genetic counselors (response rate = 11%) from Australia and New Zealand responded. No respondents practice in psychiatric genetics as their speciality area; most respondents do not see any patients where the primary indication is a personal and/or family history of psychiatric disorders (91%). Greater than half of respondents (56%) believed there was sufficient evidence to support PGC, and 64% enquire about personal and/or family history of psychiatric disorders, but only 25% provide genetic counseling on this topic. Most respondents do not feel confident providing risk assessments for psychiatric disorders (72%), while the majority expressed interest in attending specialist training (95%), and in incorporating PGC into future practice (77%). Australian genetic counselors would benefit from psychiatric genetic education and training, and establishment of specialized PGC services would address this gap in patient care, while providing opportunities for genetic counselors to gain skills and experience in PGC.
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Consejeros , Trastornos Mentales , Humanos , Asesoramiento Genético/psicología , Consejeros/psicología , Actitud del Personal de Salud , Australia , ConsejoRESUMEN
Bullying is reported in around 20% of children according to the US Department of Education and has been reported in the histories of individuals with genetic disorders. To our knowledge, there has never been a study surveying whether genetic counselors screen their pediatric patients for bullying. This is despite guidelines that pediatric healthcare providers should screen for bullying. The purpose of this study was to assess North American genetic counselors who see pediatric patients and enquire about their practices, attitudes, self-confidence, knowledge, and potential training needs in relation to bullying screening. In an anonymous online survey, 139 genetic counselors from the United States and Canada completed a modified version of the previously validated Healthcare Providers Practices, Attitudes, Self-Confidence, and Knowledge (HCP-PACK) instrument. Among our participant population, 85% reported they did not screen for bullying. This is despite no statistically significant difference in the amount of reported time spent on either initial or follow-up appointments between those who did or did not screen. Those who screened for bullying among their pediatric patients were more likely to view bullying as a healthcare problem (as measured on the attitude subscale) (t[135] = -2.07, p = 0.04) and had greater confidence in their ability to know how to assess for bullying (as measured on the self-confidence subscale) (t[135] = -2.90, p = 0.004) compared with participants who did not screen for bullying. Responses from genetic counselors who screened their patients for bullying demonstrated how screening for bullying can be aligned with the American Board of Genetic Counseling practice-based competencies. Even though the majority of participants did not view screening for bullying as a genetic counselor's role, 82.5% agreed that bullying was a healthcare problem and 63.6% thought genetic counselors should have additional educational opportunities to learn about bullying. Evidence-based guidance is needed to help genetic counselors interested in including screening for bullying in their practice.