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1.
J Genet Couns ; 32(1): 235-249, 2023 02.
Artigo em Inglês | MEDLINE | ID: mdl-36123146

RESUMO

The National Society of Genetic Counselors' policies recognize the value of diversity in the profession. Yet North American genetic counselors are very homogeneous with respect to self-identified disabilities. One step towards diversifying the profession is understanding the experiences of genetic counselors who have disabilities. This is the first study to specifically explore academic and professional experiences of genetic counselors who self-identify as having a disability and their perceptions of whether/how their disability has played a role in their experiences. Participants were recruited through an online screening survey sent via NSGC and American Board of Genetic Counseling e-blasts. Twenty-four respondents who met eligibility criteria and provided contact information participated in individual semi-structured phone interviews. Questions explored challenges and supports, interactions with others, and effects of disability on career development. Inductive analysis yielded three themes: Disability Affects Career Choices, Disability Poses Unique Career Supports and Challenges, and Disability Affects Professional Functioning in Various Ways, and seven domains (major topics within themes). Experiences included, among others, counselors must balance their disability (e.g., management, treatment) with work and/or academic demands; they desire open communication around disability and accommodation needs; disability enhances their ability to empathize with patients; countertransference is prevalent; positive and negative interactions, respectively, contribute to feelings of inclusion and exclusion; a clinicalized healthcare culture views persons with disabilities as symptoms and not individuals, and subtle stigma and discrimination exist and is perceived as possibly worse for counselors whose disabilities are not visible. Understanding academic and professional experiences of genetic counselors with disabilities and efforts to improve access and supports may promote a more inclusive environment and help to diversify the profession.


Assuntos
Conselheiros , Pessoas com Deficiência , Humanos , Conselheiros/psicologia , Inquéritos e Questionários , Comunicação , Aconselhamento Genético/psicologia , América do Norte
2.
J Genet Couns ; 31(1): 188-205, 2022 02.
Artigo em Inglês | MEDLINE | ID: mdl-34288206

RESUMO

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.


Assuntos
Conselheiros , Comunicação , Conselheiros/psicologia , Aconselhamento Genético/psicologia , Hispânico ou Latino , Humanos , Idioma , Estados Unidos
3.
J Genet Couns ; 31(2): 510-522, 2022 04.
Artigo em Inglês | MEDLINE | ID: mdl-34706142

RESUMO

While addressing culture in supervision is important, research suggests genetic counseling supervisors are unsure how to discuss it within the supervisory relationship. This study explored the perceptions of genetic counselor supervisors from the United States regarding how their supervisors approached racial/ethnic differences in their supervisory relationships when they were students, effects on those relationships, and subsequent influences on their supervision practices. Nine genetic counselors who self-identified as White/Caucasian, and nine who self-identified as racial/ethnic backgrounds other than White/Caucasian, were purposively recruited to participate in semi-structured phone interviews. Questions explored participant perceptions of how their supervisors approached racial/ethnic differences in supervision, effects on those supervisory relationships, and influences of their experiences as students on their current supervision practice. Thematic analysis revealed four major themes, with most participants agreeing that (1) recognition of race/ethnicity in supervision was limited as a student and in their current supervision practices; (2) supervisors vary in their comfort discussing race/ethnicity; (3) prior student supervision experiences of racial/ethnic differences have limited effects on current supervision practice; and (4) supervisors desire more training in how to approach conversations around race/ethnicity. Further professional discussions about the role of race/ethnicity in the supervisory relationship and training in addressing the cultural context in supervision are needed.


Assuntos
Conselheiros , Aconselhamento Genético , Comunicação , Etnicidade , Aconselhamento Genético/psicologia , Humanos , Estudantes/psicologia , Estados Unidos
4.
J Genet Couns ; 31(2): 398-410, 2022 04.
Artigo em Inglês | MEDLINE | ID: mdl-34514687

RESUMO

Research indicates genetic counseling patients often experience intense emotions. No studies, however, have investigated how genetic counseling students respond to patient affect. This survey study investigated student responses to patient emotions and select factors affecting their responses. One-hundred fifty-one genetic counseling students in North American programs wrote a response to each of three hypothetical prenatal scenarios, identical except for the patient affect expressed (anger, fear, or sadness). They also completed measures of empathy tendency and tolerance of negative affect and demographic questions. Multivariate analysis of covariance (MANCOVA), used to analyze the effects of major study variables on the types of responses given by participants, was significant. Follow-up univariate ANCOVAs indicated small to moderate effect sizes for student clinical experience, race/ethnicity, and relationship status within and across scenarios. For example, as number of patients counseled increased, participants used more feeling reflections and fewer self-involving statements. There were no significant differences in responses due to empathy tendency or affect tolerance. Most common responses were information provision and feeling reflections for the Anger scenario, information provision for the Fear scenario, and influencing responses for the Sadness scenario. Responses to each scenario typically involved multiple thoughts (range: 1-14; means ranged from 3.25 in the Sadness scenario to 3.62 in the Fear scenario). Most students (82%) reported the Anger scenario was the most difficult. Thematic analysis of reasons a scenario was difficult yielded four themes: Discomfort with situation/emotion, Positive countertransference, Uncertain how to respond, and Negative countertransference. Findings that clinical experience affects how participants responded to patient affect support the essential role of applied experience. Findings also support training and supervision to help genetic counseling students in North America learn ways to respond to strong patient emotions and recognize and manage countertransference.


Assuntos
Emoções , Aconselhamento Genético , Ira , Emoções/fisiologia , Empatia , Humanos , Estudantes
5.
J Genet Couns ; 31(3): 663-676, 2022 06.
Artigo em Inglês | MEDLINE | ID: mdl-34826351

RESUMO

A personal or family medical history is inherently part of a genetic counselor's life story. Yet, the degree to which this history influences counselors' clinical specialty choice and professional psychosocial practice is unexplored. A medical diagnosis may foster capacity for greater empathy, understanding, and rapport-building self-disclosure. Conversely, it could lead to disruptive countertransference, compassion fatigue, and eventually burnout. Research, however, has not specifically investigated this intersection. The aim of this study was to explore the impact of genetic counselors' personal and/or family medical history on choice of practice area and self-perceived impact on their psychosocial work within sessions. Members of the National Society of Genetic Counselors were recruited to complete an online screening survey. Of the 69 survey respondents that met inclusion criteria, 23 volunteered for and completed a telephone interview. Interview questions explored counselors' medical narratives and their consequent influence on specialty choice and clinical interaction with patients. Inductive analysis yielded nine domains within three major themes: Medical Story, Specialty Impact, and Psychosocial Influence. Participants were more likely to be attracted to a specialty possessing overlap with their medical history and attributed many of their psychosocial strengths to personal and/or family medical experiences, such as increased empathy or a more expansive scope in how they cared for patients. Many counselors, however, noted their medical history did not frequently influence their clinical practice, with most initially denying or downplaying use of self-disclosure about their history. Contradictory to their statements, the majority gave at least one example of self-disclosure, whether indirect, prompted, or direct. Importantly, almost all participants named or demonstrated countertransference. This study highlights that while medical history can be a valuable asset in providing care for patients, it requires a genetic counselor's diligent attentiveness and commitment to honest self-reflection.


Assuntos
Fadiga de Compaixão , Conselheiros , Conselheiros/psicologia , Contratransferência , Empatia , Aconselhamento Genético/psicologia , Humanos
6.
J Genet Couns ; 30(6): 1598-1612, 2021 12.
Artigo em Inglês | MEDLINE | ID: mdl-33938073

RESUMO

Self-involving responses are direct expressions of genetic counselors' here-and-now feelings about/reactions to patients. Strategic, sparing use of self-involving responses may enhance practitioner genuineness, likeability, and trustworthiness, decrease patient anxiety, and increase patient trust and engagement. Conversely, they may threaten patients who are uncomfortable with emotional expression or confuse them about the counselor's intentions. Despite theorized benefits and risks, no study has explored genetic counselor self-involving responses. This study explored whether clinical genetic counselors use self-involving responses with their patients, reasons for doing so, and their perceptions of when and why the responses work well versus poorly. Two-hundred sixty-eight genetic counselors, invited via a National Society of Genetic Counselors e-blast, completed an online screening survey. Eighty-nine percent reported using self-involving responses with patients, and 17 were purposively selected to participate in semi-structured phone interviews. Thematic analysis yielded themes regarding potential benefits, risks, counselor factors and context, and patient factors related to using self-involving responses. Benefits include conveying counselor conditions for facilitating counseling process (e.g., genuineness, building rapport, focusing the session, and encouraging the patient to open-up), and counseling outcomes by validating decision-making. Risks of use include hindering counseling processes and outcomes by misperceiving patient feelings, boundary crossing, and being unduly directive. Factors, both from the counselor and the context of the session, include comfort with the technique, mastery of clinical skills, minimal knowledge of patient emotions, type of counseling session, and counselor practice specialty. Patient factors include prior rapport with the counselor, and patient emotionality and cultural background. Findings underscore the need for training about this technique. Future research could examine patients' perceptions of self-involving statements and differences in self-involvement across practice specialties and counseling modalities.


Assuntos
Conselheiros , Competência Clínica , Aconselhamento , Conselheiros/psicologia , Aconselhamento Genético/psicologia , Humanos
7.
J Genet Couns ; 30(1): 132-143, 2021 02.
Artigo em Inglês | MEDLINE | ID: mdl-32583486

RESUMO

Monitoring and blunting are coping styles that characterize how people respond when faced with personally threatening situations. High monitors tend to pay more attention to, scan for, and amplify threatening cues; high blunters tend to avoid information and seek distractions when faced with a threatening event. This study sought to investigate possible differential effects of monitoring and blunting coping styles on information preferences in a hypothetical cancer diagnosis scenario in the adult general public of Minnesota. In a survey administered at a large public venue (2016 Minnesota State Fair), participants were asked to imagine they carried a gene mutation and were diagnosed with colon cancer. They indicated their information preference [modified Cassileth Information Styles Questionnaire (MCISQ)], completed two coping style measures [Miller Behavioral Style Scale (MBSS) and Threatening Medical Situations Inventory (TMSI)], rated their perceived severity of colon cancer (low, moderate, high), and answered demographic questions. Eight hundred fifty-five individuals provided usable data. Participants classified as monitors on the TMSI had significantly higher MCISQ scores (i.e., preferred more information) than those classified as blunters (p = .004). Those scoring high on monitoring and low on blunting on the MBSS preferred significantly more information than those scoring high on both monitoring and blunting (p = .04). Linear regression analysis revealed being a monitor (TMSI), scoring high on monitoring (MBSS), rating colon cancer as more severe, and having a higher education level were significant positive predictors of MCISQ scores. Results suggest individual differences in coping style, perceived severity, and education level affect desire for information. Genetic counselors should consider these patient characteristics (e.g., asking patients about their information preferences) and tailor their approaches accordingly.


Assuntos
Adaptação Psicológica , Neoplasias , Adulto , Humanos , Minnesota , Inquéritos e Questionários
8.
J Genet Couns ; 29(6): 1059-1080, 2020 12.
Artigo em Inglês | MEDLINE | ID: mdl-32146730

RESUMO

Emerging adulthood, a distinct developmental period between ages 18 and 29 years, comprises five features: identity exploration, experimentation/possibilities, negativity/instability regarding one's outlook, self-focus, and feeling in-between adolescence and adulthood. A growing literature examines the impact of genetic conditions on individuals who chronologically fit the emerging adulthood period. This systematized literature review uses the emerging adulthood theory to determine whether individuals living with or at-risk for a genetic condition experience the features of this period as well as similarities and differences between these two groups. A literature search yielded 1,303 peer-reviewed papers from the 17 years since emerging adulthood theory was published. Ten papers met inclusion criteria-five for those Living With a genetic condition (e.g., cystic fibrosis) and five for those At-Risk for a genetic condition (e.g., hereditary breast and ovarian cancer). Content analysis yielded themes consistent with the five emerging adulthood features for both individuals Living With and At-Risk for genetic conditions. Negativity/instability was most prevalent, and feeling in-between was least prevalent in both groups. Results further suggest unique challenges related to one's genetic conditions/risk with respect to independence (from family, healthcare providers), career/education, relationships/social life, family planning, and life perspective experiences. Salient differences were apparent between the groups in their experiences of the emerging adulthood features. For instance, Living With individuals reported challenges concerning their ongoing physical symptoms, whereas At-Risk individuals reported challenges regarding genetic testing decisions and anticipation of physical symptoms. Thus, emerging adults Living With and At-Risk for genetic conditions appear to experience the main emerging adulthood features, but they face unique challenges related to their genetic conditions/risk. Understanding emerging adults' experiences can aid genetic counselors in addressing their specific concerns.


Assuntos
Predisposição Genética para Doença , Adolescente , Adulto , Emoções , Feminino , Pessoal de Saúde , Humanos , Estudos Longitudinais , Masculino , Adulto Jovem
9.
J Genet Couns ; 29(1): 35-43, 2020 02.
Artigo em Inglês | MEDLINE | ID: mdl-31605426

RESUMO

Alopecia areata (AA), a complex autoimmune hair loss condition, affects approximately 2.1% of the population. Individuals with AA have increased susceptibility to diseases such as atopy and autoimmune disorders, but little is known about first-degree relatives' risk to develop AA and associated conditions. Genetic counseling for multifactorial conditions, including autoimmune disease is complex, but potentially valuable. Anecdotally we know patients with AA ask medical providers about recurrence risk for family members as well as question whether they and their relatives are at risk for other conditions. Data on AA recurrence risks and comorbid conditions among relatives of affected individuals comprise valuable information that may guide clinical management by genetic counselors. This study investigated the recurrence risk of AA and compared the prevalence of associated conditions among first-degree relatives to the general population. The study also assessed the validity of self-reported conditions for a subset of participants. Relatives of individuals with AA (N = 155), recruited from the National Alopecia Areata Foundation Registry, completed telephone surveys about their personal medical history for 70 medical conditions associated with AA. Medical records for 60 participants were compared to self-reported responses. One-sided proportional tests, in which it is assumed the disease prevalence in first-degree relatives is higher than for those in the general population, yielded a 7.8% estimated risk of AA versus the general population prevalence of 2.1%. Furthermore, there are increased risks of 33 associated conditions, including atopy and other autoimmune conditions. Comparison of medical reports to self-reported conditions indicated only 12% was incongruent. The findings may help genetic counselors better serve patients and their families by informing them of lifetime risk estimates of developing AA and comorbid conditions, resulting in early diagnosis of autoimmune diseases in AA families. Findings also provide evidence supporting the validity of self-report data in AA families.


Assuntos
Alopecia em Áreas/genética , Doenças Autoimunes/genética , Família , Adulto , Alopecia em Áreas/complicações , Alopecia em Áreas/diagnóstico , Alopecia em Áreas/imunologia , Doenças Autoimunes/complicações , Doenças Autoimunes/imunologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Prevalência , Sistema de Registros , Autorrelato , Inquéritos e Questionários , Estados Unidos , Adulto Jovem
10.
J Genet Couns ; 28(4): 822-835, 2019 08.
Artigo em Inglês | MEDLINE | ID: mdl-31058408

RESUMO

Although transitional challenges exist in many professions, no research has explicitly investigated challenges novice genetic counselors encounter as they enter the workforce. This qualitative study explored challenges genetic counselors face when transitioning from student to practicing counselor and their strategies for managing them. Fifteen novice genetic counselors (~1-2 years post-degree experience), recruited via the National Society of Genetic Counselors, participated in semi-structured phone interviews. Interview questions explored professional and personal challenges faced in their first 6 months, how challenges changed over time, strategies they used to manage these challenges, and resources they thought would have been helpful to have from the beginning. Inductive analysis of interview data yielded themes including: interpersonal challenges with colleagues (e.g. handling differences of opinion); intrapersonal challenges (e.g. lacking confidence, not feeling ready to 'go solo'); patient care challenges (e.g. being viewed as young/inexperienced); and logistical challenges (e.g. billing). Personal challenges included moving to a new location, preparing for boards, establishing a work-life balance, and factors associated with one's significant others. Strategies to address challenges included seeking support and guidance from experienced genetic counselors and peers, using peer supervision groups, and involvement in community activities. Participants recommended connecting with recent graduates through national and local programs to facilitate the transition from student to genetic counselor. Results suggest the 'transition years' pose a variety of professional and personal challenges. Support and guidance are key to evolving from student to practicing counselor. Creating venues to help novice counselors make connections with colleagues and other recent graduates may be beneficial.


Assuntos
Conselheiros/psicologia , Aconselhamento Genético , Adulto , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Adulto Jovem
11.
J Genet Couns ; 28(3): 602-615, 2019 06.
Artigo em Inglês | MEDLINE | ID: mdl-30801849

RESUMO

Clinical supervision plays a key role in the training of genetic counselor practitioners. The Reciprocal-Engagement Model of Supervision (REM-S) is a recently published model of genetic counseling supervision centered on the supervisor-student relationship. The REM-S comprises five tenets and 16 goals that reciprocally interact to achieve three broad supervision outcomes. Lacking, however, is a comprehensive set of supervisor strategies that correspond to the tenets and goals. This study aimed to elaborate the REM-S by identifying strategies genetic counselor supervisors use to accomplish each REM-S goal when they supervise students in clinical rotations. Nineteen prenatal, pediatric, and cancer genetic counselor supervisors from clinics in a major Midwestern city participated in one of three focus groups. Eleven semistructured questions were asked about strategies they use when attempting to accomplish each REM-S goal. Directed content analysis yielded a total of 14 different strategy domains that vary in their frequency for accomplishing each REM-S goal. Participants identified between nine and 13 strategy domains for each goal. Across all REM-S goals, the most frequent strategy domains are: Assess student; Practice self-reflection to increase supervisor self-awareness; and Establish student goals and expectations. The present findings elaborate the REM-S by identifying supervisor strategies corresponding to the REM-S goals. These strategies can inform training in clinical supervision, and they can be the focus of observational studies designed to identify supervisor behaviors that characterize each strategy.


Assuntos
Educação Continuada , Aconselhamento Genético/psicologia , Modelos Organizacionais , Adulto , Conselheiros , Feminino , Grupos Focais , Humanos , Masculino
12.
J Genet Couns ; 28(2): 355-366, 2019 04.
Artigo em Inglês | MEDLINE | ID: mdl-30710467

RESUMO

Rationales for returning results from whole genome sequencing (WGS) and genetic testing have historically focused on medical utility. Understanding the wide array of actions individuals might take following genetic testing results could have important implications for clinical care. We aimed to survey the public regarding their perceptions of the importance of a wide variety of different actions one might take upon receiving hypothetical results from a WGS test where the results indicate a high risk of developing a genetic condition. We assessed whether demographic characteristics, type of condition, and perceived severity of the condition differentially affected importance ratings of actions they would take. In a survey administered at the 2015 Minnesota State Fair, 909 participants imagined that they had a blood test that looked at their genes and indicated that they were at high risk of developing one of three randomized conditions (Alzheimer's disease, macular degeneration, or colon cancer). Participants rated the importance of 35 actions. Principal component analysis, used to categorize actions, yielded eight categories: (1) medical management and communication; (2) partner support; (3) support and life fulfillment; (4) diet and exercise; (5) distal planning; (6) religion/spiritual support; (7) reproductive actions; and (8) proximal planning. Participants rated a wide range of actions as important, with medical management and communication, and partner support receiving the highest mean ratings. Linear regression yielded significant associations between importance ratings and demographics variables (age and gender), genetic condition, and perceived severity of the condition for different action categories. Genetic counselors and other healthcare professionals should consider a variety of possible patient actions beyond medical actionability when discussing genetic testing results.


Assuntos
Aconselhamento Genético , Testes Genéticos , Conhecimentos, Atitudes e Prática em Saúde , Participação do Paciente , Sequenciamento Completo do Genoma , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Adulto Jovem
13.
J Genet Couns ; 27(5): 1275-1290, 2018 09.
Artigo em Inglês | MEDLINE | ID: mdl-29569052

RESUMO

Research shows couple conflict occurring during prenatal genetic counseling sessions may be challenging for some genetic counselors. Yet, no study has explored couple conflict in depth. The current study investigated genetic counselors' experiences and perceptions of the nature and context of couple conflict in prenatal sessions and counselor conflict management strategies. Sixteen prenatal genetic counselors recruited through the National Society of Genetic Counselors participated in semi-structured phone interviews asking about how they recognize couple conflict; topics that trigger conflict and when it occurs; individual, cultural, and situational factors associated with conflict; conflict management strategies; and specific examples from their practice. Inductive and cross-case comparison methods revealed a number of themes. Genetic counselors recognize couple conflict through non-verbal and verbal cues, and conflict can occur at any time, particularly during decision-making about testing and test results and during results review of an affected pregnancy. Factors associated with conflict include cultural customs, age, emotional state, religious beliefs, and being forced to attend counseling. Participants identified 23 conflict management strategies classified into five themes: facilitate decision-making, encourage couple expression, act within one's scope of practice, provide psychosocial support, and support the identified patient. Counselors emphasized that their strategies are couple dependent. Patients may benefit from genetic counselors assessing couple conflict and intervening when it impedes genetic counseling goals. Clinical examples from this study may contribute to informing genetic counselor practice, program curricula, and continuing education workshops.


Assuntos
Conflito Psicológico , Conselheiros/psicologia , Terapia de Casal , Aconselhamento Genético/psicologia , Adulto , Tomada de Decisões , Educação Continuada , Feminino , Humanos , Masculino , Negociação , Gravidez
14.
J Genet Couns ; 27(1): 241-251, 2018 02.
Artigo em Inglês | MEDLINE | ID: mdl-28879467

RESUMO

Rapid growth in the demand for genetic counselors has led to a workforce shortage. There is a prevailing assumption that the number of training slots for genetic counseling students is linked to the availability of clinical supervisors. This study aimed to determine and compare barriers to expansion of supervision networks at genetic counseling training programs as perceived by supervisors, non-supervisors, and Program Directors. Genetic counselors were recruited via National Society of Genetic Counselors e-blast; Program Directors received personal emails. Online surveys were completed by 216 supervisors, 98 non-supervisors, and 23 Program Directors. Respondents rated impact of 35 barriers; comparisons were made using Kruskal-Wallis and Wilcoxon ranked sum tests. Half of supervisors (51%) indicated willingness to increase supervision. All non-supervisors were willing to supervise. However, all agreed that being too busy impacted ability to supervise, highlighted by supervisors' most impactful barriers: lack of time, other responsibilities, intensive nature of supervision, desire for breaks, and unfilled positions. Non-supervisors noted unique barriers: distance, institutional barriers, and non-clinical roles. Program Directors' perceptions were congruent with those of genetic counselors with three exceptions they rated as impactful: lack of money, prefer not to supervise, and never been asked. In order to expand supervision networks and provide comprehensive student experiences, the profession must examine service delivery models to increase workplace efficiency, reconsider the supervision paradigm, and redefine what constitutes a countable case or place value on non-direct patient care experiences.


Assuntos
Atitude do Pessoal de Saúde , Aconselhamento/educação , Aconselhamento Genético/organização & administração , Competência Profissional , Competência Clínica , Aconselhamento/organização & administração , Feminino , Aconselhamento Genético/psicologia , Humanos , Liderança , Estudantes/psicologia , Inquéritos e Questionários
15.
J Genet Couns ; 25(4): 799-817, 2016 08.
Artigo em Inglês | MEDLINE | ID: mdl-26498971

RESUMO

Genetic counselors routinely engage with patients and families who grapple with questions of meaning while making decisions about genetic risk. Research and theory demonstrate genetic counselors gain important personal insights through their work and develop professionally from self-reflective practice regarding their beliefs and values. Data are lacking, however, about the nature of the meaning genetic counselors bring to their profession and how they directly experience and/or navigate issues of meaning within clinical practice over time. Accordingly, a national sample (N = 298) of practicing genetic counselors completed a brief survey assessing their demographic characteristics and willingness to participate in a semi-structured telephone interview exploring their views on meaning as they relate to their clinical work and professional development. Sixty-eight individuals of varied experience levels were interviewed about: 1) how they define a meaningful life for themselves; 2) lifetime sources of influence on their sense of meaning; 3) how they experience meaning within both personal and professional contexts; 4) work-related contexts that reaffirm and challenge their sense of meaning; and 5) how their sense of meaning has changed over time. Twenty-five interviews were analyzed using Consensual Qualitative Research methods, at which point, data saturation was reached. Five themes, 32 domains, and 29 categories were extracted. Common findings include: importance of satisfying relationships; helping others; personal fulfillment; personal and patient experiences of illness and loss; religious and/or spiritual foundations; value conflicts; competing obligations; challenges to meaning; development of empathy; resiliency; and increased humility. Results suggest the importance of professional venues for discussions of meaning (e.g., genetic counseling program curricula, continuing education, and peer supervision/consultation). Additional findings, practice implications, and research recommendations are presented.


Assuntos
Conselheiros/psicologia , Aconselhamento Genético/psicologia , Personalidade , Adulto , Conselheiros/educação , Educação Continuada , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Inquéritos e Questionários
16.
Am J Med Genet A ; 167A(11): 2647-56, 2015 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-26219924

RESUMO

Public interest in personal whole genome sequencing is increasing. The technology is publicly available and is being used as an educational tool in higher education. Empirical evidence regarding its utility is vital. The goals of this study were to characterize the process of whole genome sequencing in a population of medical and basic science professionals undergoing whole genome sequencing as a part of an educational symposium. Thirty-eight individuals completed one or more surveys from the time of informed consent for whole genome sequencing to 3 months post-symposium. The four surveys assessed demographics, decision-making, communication, decision regret, and personal and professional impact. The most prevalent motivation to participate was professional enhancement, followed by curiosity about the technology, and personal health benefits. The most important initial impact concerned medical implications. Over time, however, impact on professional development was greater than on personal health. Anticipated reactions to receiving whole genome sequencing results generally matched participants' actual reactions and decision regret remained low over time. Benefits and risks of whole genome sequencing included medically actionable results and misunderstanding by healthcare providers. Whole genome sequencing generally had a positive impact professionally and personally on participants. Further education of providers and the public about whole genome sequencing and psychosocial support is warranted.


Assuntos
Genoma Humano , Pessoal de Saúde , Análise de Sequência de DNA , Adulto , Demografia , Feminino , Saúde , Humanos , Consentimento Livre e Esclarecido , Masculino , Pessoa de Meia-Idade , Motivação
17.
J Genet Couns ; 24(4): 580-96, 2015 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-25398381

RESUMO

Laboratory-based genetic counseling is a growing and yet under researched specialty. In this study, 111 laboratory-based genetic counselors employed in various settings (commercial, academic, etc.) completed an online survey assessing demographics and frequency of encountering 16 domains of ethical and professional challenges encountered by clinical genetic counselors defined previously by McCarthy Veach et al. and validated by Bower et al. Forty-nine of the laboratory genetic counselors also provided anecdotes of particularly challenging situations and strategies for their resolution. Most respondents had less than 5 years' experience as laboratory counselors (71 %), worked full-time (75 %) in industry-based laboratories (91 %) with a focus on molecular diagnostics (84 %), and had limited patient contact (91 %). Similar to clinical counselors, every ethical and professional challenge was endorsed as occurring frequently by some respondents. The most common frequently occurring domains for the sample were: facing uncertainty, time and financial resource allocation, attaining and maintaining proficiency, and informed consent. Content analysis of respondents' anecdotes yielded themes that most commonly concerned: professional identity issues, value conflicts, confidentiality, and colleague error. One unique domain labeled professional communication (educating professionals with limited genetics knowledge), and three salient categories within the professional identity domain--gatekeeping, conflicts of interest, and professional image--were extracted from the anecdotes. The most prevalent strategy for resolving challenging situations was inform health care professional. Results suggest laboratory-based genetic counselors generally face similar ethical and professional challenges as clinical genetic counselors but their exact nature and relative frequency differ. These findings contribute to a greater understanding of common and unique experiences of genetic counselors in different professional specialties.


Assuntos
Ética Profissional , Aconselhamento Genético/ética , Pessoal de Laboratório Médico , Adulto , Confidencialidade , Conflito de Interesses , Comportamento Cooperativo , Feminino , Testes Genéticos , Humanos , Consentimento Livre e Esclarecido , Comunicação Interdisciplinar , Masculino , Minnesota , Inquéritos e Questionários , Incerteza
20.
J Genet Couns ; 20(1): 35-48, 2011 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-20721687

RESUMO

Boundary issues and multiple relationships potentially affect all supervision interactions. Boundary crossings are departures from the strictest professional role and may or may not benefit supervisees. Boundary violations are outside common practice and may place supervisees at significant risk. Multiple relationships occur when supervisors concurrently or consecutively hold two or more roles with supervisees. Studies in other fields indicate supervisors and supervisees may be uncertain about professional conduct regarding these issues. In this study, genetic counselor supervisors (n = 126), non-supervisors (n = 72), and genetic counseling students (n = 129) completed an anonymous survey investigating four major questions: 1) Are various boundary issues and multiple relationships perceived as differentially appropriate? 2) Do supervisor, non-supervisor, and student perceptions differ? 3) What challenging situations have respondents experienced? and 4) What management strategies did they use? There was general agreement among groups in their appropriateness ratings of 56 hypothetical supervisor behaviors, although supervisor ratings tended to reflect stricter boundaries regarding the appropriateness of interactions than student ratings. A majority rated unavoidable boundary crossings and supervisor multiple relationships involving an academic relationship as most appropriate, and romantic/sexual multiple relationships and/or boundary violations as least appropriate. Analysis of respondents' actual challenging situations revealed many involved boundary violations, placed students at risk of harm, and often resulted in student compliance.


Assuntos
Aconselhamento Genético , Estudantes , Humanos , Minnesota , Recursos Humanos
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