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ABSTRACT: To explore specific patient care experiences that genetics professionals associate with distress and the emotions engendered by those experiences.
We conducted semistructured telephone interviews with clinical geneticists, genetic counselors, and genetic nurses that focused on a single distressing experience.
Fourteen clinical geneticists, 25 genetic counselors, and 14 nurses were interviewed. We categorized the situations that interviewees associated with distressing patient care experiences into seven major types: patient/family decisions (27% of total situations), giving bad news (17%), colleague behavior (15%), end-of-life issues (12%), unintended outcomes (12%), difficult patients (8%), and injustice/inhumanity (8%). Interviewees reported experiencing a variety of negative emotions during these situations, including anger, guilt, helplessness, and inadequacy.
The distress and resulting emotions experienced by genetic service providers must be acknowledged. Interventions are needed to assist the clinician in becoming self-aware by reflecting on experienced emotions, examining belief systems and values, and understanding the connection between their emotions and behavior. Involvement in mindfulness meditation, reflective writing, peer support groups or additional communication skill-based training could address this need. In addition, clinicians should seek ways to increase personal meaning derived from providing patient care.
Genetics in medicine: official journal of the American College of Medical Genetics 04/2010; 12(5):289-97. · 3.92 Impact Factor
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ABSTRACT: 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.
American Journal of Medical Genetics Part C Seminars in Medical Genetics 01/2009; 151C(1):31-40. · 4.06 Impact Factor
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ABSTRACT: Burnout is high among clinicians and may relate to loss of "meaning" in patient care. We sought to develop and validate a measure of "personal meaning" that practitioners derive from patient care.
As part of a larger study of well-being among genetics professionals, we conducted three focus groups of clinical genetics professionals: physicians, nurses and genetic counselors (N=29). Participants were asked: "What gives you meaning in patient care?" Eight themes were identified, converted into Likert items, and included in a questionnaire. Next, we mailed the questionnaire to clinical geneticists, genetic counselors and genetic nurses (N=480) randomly selected from mailing lists of their professional associations. Results were subjected to exploratory factor analysis. The survey also included validated scales of burnout and professional satisfaction, and a 1-item measure of gratitude, to assess predictive validity.
214 eligible providers completed the survey out of an estimated 348 eligible (61% response rate). Factor analysis resulted in a unidimensional scale consisting of 6-items with an alpha of 0.82 and an eigen value of 3.2. Factor loadings ranged from 0.69-0.77. The mean total score was 18.1 (S.D. 3.7) out of a possible high score of 24. Higher meaning scores were associated with being female (p=0.044), a nurse (p<0.001), and in practice longer (p=0.006). Meaning scores were inversely correlated with burnout (p<0.001), and positively correlated with gratitude (p<0.001) and professional satisfaction (p<0.022).
The 6-item "personal meaning in patient care" scale demonstrates high reliability and predictive validity in a select group of health professionals. Future research should validate this scale in a broader population of clinicians.
The scale could be useful in identifying providers at risk of burnout, and in evaluating interventions designed to counteract burnout, enhance meaning and improve communication and partnership between providers and patients.
Patient Education and Counseling 08/2008; 72(2):293-300. · 2.31 Impact Factor
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ABSTRACT: To investigate referrals of pregnant women to genetic counseling, we analysed transcripts from audiotaped first prenatal visits of 104 patients (72 actual patient visits and 32 simulated patient visits) with 32 providers (obstetricians and nurse-midwives). All patients had at least one indication for referral. Only 10% of visits with actual patients included a genetic counseling referral. When genetic counseling was discussed, it was only briefly described, primarily as an information session. This study shows that the majority of pregnant women with an indication for referral for genetic counseling are not referred. In addition, obstetric providers' inadequate descriptions of prenatal genetic counseling may result in women being poorly prepared for genetic counseling sessions.
Journal of Genetic Counseling 05/2005; 14(2):109-17. · 1.77 Impact Factor
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ABSTRACT: To describe the relationship between scientists and science writers and their experiences with media reporting of genetic discoveries.
This study included individual interviews with 15 scientists who specialize in genetics and 22 science writers who have covered their stories and a qualitative analysis of the data.
Scientists and science writers place an equally high priority on accuracy of media reports. They agree on what makes genetics stories newsworthy and the particular challenges in reporting genetic discoveries (i.e., poor public understanding of genetics, the association of genetics with eugenics, and the lack of immediately apparent applications of genetic discoveries to human health). The relationship between scientists and bona fide science writers is largely positive. Scientists tend to trust, respect, and be receptive to science writers. Both scientists and science writers acknowledge that trust is an essential component of a good interview. Science writers report a fair degree of autonomy with respect to the relationship they have with their editors.
To the degree that trust facilitates the access that science writers have to scientists, as well as higher quality interviews between scientists and science writers, trust might also contribute to higher quality media reporting. Therefore, scientists and science writers have an ethical obligation to foster trusting relationships with each other. Future research should systematically explore ways to cultivate such relationships and assess their impact on the quality of science journalism.
Genetics in Medicine 04/2005; 7(3):198-205. · 4.76 Impact Factor
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ABSTRACT: To examine (1) the quality of media reports (newspapers, television and public radio) of genetic discoveries with medical relevance and (2) factors related to the completeness and balance of the stories.
Analysis of the accuracy, balance, and completeness of 228 media stories reporting 24 genetic discoveries between 1996 and 2000 using a previously validated instrument.
Although usually accurate, the stories contained only 45.5 +/- 13.8% (mean +/- SD) of relevant items. Stories appearing on television and stories reporting discoveries of genes for rare diseases were the least complete. Stories in non-US English-speaking newspapers included more content items per word than US stories. Less balanced stories exaggerated the benefits of discoveries, ignored possible risks, and did not present a range of expert opinion. Scientists were sometimes the source of exaggeration.
To increase the quality of media reports about genetic discoveries, stories should include more relevant items and be written by journalists skilled in science writing. Scientists will have to resist the tendency to exaggerate. These conclusions may apply to media stories of other discoveries as well.
Community Genetics 02/2005; 8(3):133-44. · 1.32 Impact Factor
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ABSTRACT: The Mid-Atlantic Cancer Genetics Network (MACGN) targets individuals from cancer risk assessment clinics for recruitment into a national hereditary cancer registry. We sought to determine whether different recruitment methods used in a high-risk breast and ovarian cancer clinic yielded differences into enrollment into MACGN.
Two methods of recruitment were compared over an 8-month period. A passive recruitment technique, used during the first 4 months of recruitment, involved distribution of a brochure. An active recruitment method, used during the second 4-month period, required a MACGN recruiter to approach patients and initiate a brief discussion of the registry.
During the first 4-month period, 158 eight patients were seen in the clinic and 142 were seen in the second 4-month period. During passive recruitment, 20% of available patients were approached, compared with 63% during active recruitment. Active recruitment also resulted in fourfold increase over passive recruitment in enrollment (from 15.6% to 67.4%).
Allocating research staff specifically for recruitment and personal contact with potential participants is effective in achieving increased enrollment into a national hereditary cancer research registry.
Journal of Clinical Epidemiology 12/2004; 57(11):1172-6. · 4.27 Impact Factor
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ABSTRACT: After the announcement that sequencing of the human genome was nearly complete, media coverage was extensive. In light of ample evidence that the media are a primary source of health and science information, even for health professionals, media portrayals are often inaccurate or misleading, and discoveries that emanate from sequencing the human genome are likely to influence future health care, it is important to assess physicians' interpretations of media coverage about the human genome announcement. This paper describes the reactions of a sample of new physicians in the United States to this announcement, as well as the content of the stories they read or heard. Semi-structured surveys were distributed to all incoming houseofficers during Orientation at one major academic medical center. Eighty-one percent of 190 houseofficers returned a survey; 123 completed surveys were analyzed. Fifty-four percent of respondents thought the media message was only positive and 21% thought it was negative or mixed. Participants who reported radio as their media source were less likely to recall positive messages (p<0.05). Sixty-five percent and 76%, respectively, had positive perceptions of the impact of the accomplishment on people and on the medical profession. Overall, 48% were enthusiastic and 52% were guarded about the accomplishment. Enthusiasm was related to being an adult primary care houseofficer (p=0.07) or to having heard about it on television or in the newspaper (p<0.05). Of the 36 stories analyzed, newspaper and television reports focused more on medical implications and radio reports focused more on ethical issues. The degree of enthusiasm about the accomplishment reflects the content of the media coverage, and, at least for adult primary care houseofficers, probably reflects the increasing relevance of genetic discoveries to medical practice. Since physicians obtain much of their health and science information from the media, they can play an instrumental role in helping their patients interpret media coverage of advances in genetics and their impact on health care. However, this will require that physicians develop an appreciation of the newsmaking process, and how subtle interactions between politics, the media and science influence the "framing" of media coverage.
Social Science [?] Medicine 05/2003; 56(10):2211-20. · 2.70 Impact Factor
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ABSTRACT: To better understand the process by which families at increased risk of disease would decide to enroll their children in genetic susceptibility research in order to develop recommendations regarding the informed consent process by which at-risk children are enrolled in such research in the future [corrected].
Parents and children (ages 10-17 years) from families at increased risk for heart disease (n = 21 dyads) or breast cancer (n = 16 dyads) participated in two face-to-face, audio-taped, semi-structured interviews: Initial interviews were conducted with parents and children separately, and follow-up family interviews were conducted 1 year later. Interview transcripts were coded based on common themes.
Families vary in the stage at which, and degree to which, children would be involved in decision-making about research participation. In general, the older/more mature the child, the less risky the research and the more open the communication style, the greater the likelihood that decisions would be made jointly. Most children wanted some parental input, but still thought the final decision should be theirs. Most parents would want to make the initial decision about whether it would be reasonable to consider enrolling their child in the research being proposed, but none opposed the child having some time alone with the researcher. All parents and children in our study placed extreme importance on not forcing children to participate in nontherapeutic research if they do not want to.
Decision-making about enrolling children in genetic susceptibility research should be based on an informed consent process that (a) gives parents and children sufficient opportunity to ask questions of the researcher(s) and to communicate with one another, and (b) gives children the opportunity to exercise their right to refuse participation without parental influence. This process should be tailored to the child's maturity level and style of communication in the family.
Journal of Adolescent Health 05/2003; 32(4):260-71. · 3.33 Impact Factor
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ABSTRACT: Children at high risk of future disease may be recruited for participation in disease susceptibility research involving genetic testing. This study was aimed at assessing parents' and children's reactions to such research, and their perceptions of risks and benefits of participating.
Parents and children (ages 10-17) from families at increased risk for breast cancer (n = 16 dyads) and heart disease (n = 21 dyads) participated in separate audiotaped interviews and a follow-up family interview one year later. We asked about reactions, risks and benefits, and informational needs regarding participation in hypothetical research involving genetic testing on a saliva sample. Audiotape transcripts were analyzed qualitatively.
All children would initially participate because they viewed the research as low risk. When thinking about learning their test result and sharing it with others, or the uncertainties of testing, many children became hesitant about participating. Many parents thought their child might worry about a positive result, making them unlikely to enroll their child, or to choose not to tell the child test results. Both children and parents thought the benefits of participating included early detection or treatment (breast cancer families), prevention (heart disease families) and helping others. Children's questions about research participation centered on details of the study design and purpose, while parents' questions related to the genetic test itself.
Children's first reaction to participating in research involving genetic susceptibility testing research may not indicate an adequate appreciation of risks and benefits; if encouraged to personalize the impact of genetic testing, children are able to engage in a more informed decision-making process.
American Journal of Medical Genetics Part A 03/2003; 116A(4):315-23. · 2.39 Impact Factor
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ABSTRACT: Clinical testing for BRCA1/2 has been available since 1996. Interest in testing in the research and hypothetical situations has been consistently high, but there have been limited reports on its clinical utilization.
This is a retrospective study of BRCA1/2 test utilization by high-risk patients who were seen at the Johns Hopkins Breast and Ovarian Surveillance Service.
Between February 1996 and December 1999, 258 families who had at least a 10% chance of carrying a BRCA1/2 mutation were offered genetic testing. Of these, 26 families seen between February 1996 and October 1996 had access to free testing. Overall, 68 of 258 (26%) underwent genetic testing. Educational level, number of children or daughters, breast carcinoma screening behavior, smoking and drinking behavior, perceived risk of breast carcinoma, and family history was not associated with test utilization. Eligibility for free testing, prior history of breast or ovarian carcinoma, Ashkenazi Jewish versus non-Ashkenazi Jewish heritage, genetic risk category, and age category were associated with test utilization, and in multivariate analysis, the first three remained statistically significant factors associated with genetic testing. Only 26% of the 50 patients who did not have access to free testing sought insurance reimbursement, of which greater than 50% (7 of 13) had a prior diagnosis of breast or ovarian carcinoma.
The actual utilization of BRCA1/2 genetic testing in a clinical setting is lower than in the research and hypothetical settings. Potential obstacles include cost, fear of insurance discrimination, and need to involve an affected family member in the testing process.
Cancer 04/2002; 94(6):1876-85. · 4.77 Impact Factor
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JAMA The Journal of the American Medical Association 03/2002; 287(6):773. · 30.03 Impact Factor
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ABSTRACT: Objective: To describe patient-obstetrician communication during the first prenatal visit and its relationship to physician gender and patient satisfaction.
Methods: The first prenatal visit of 87 women with 21 obstetricians (11 male and ten female) was audiotaped and analyzed using the Roter Interaction Analysis System. Patient satisfaction was measured by postvisit questionnaire.
Results: Communication during first prenatal visits was largely biomedical, with little psychosocial or social discussion. Male physicians conducted longer visits than females (26 minutes versus 21.9 minutes, P < .05) and engaged in more facilitative communication (ie, making sure they were understood and providing direction and orientation) and explicit statements of concern and partnership (z > 1.96, P < .05). Female physicians devoted more communication to agreements, disagreements, and laughter than males (z > 1.96, P < .05). Satisfaction with physicians' emotional responsiveness and informational partnership was related to female physician gender and a variety of task-focused and affective communication variables.
Conclusion: Communication and satisfaction between women and obstetricians during initial prenatal visits is related to physician gender and patient satisfaction. Male physicians conducted longer visits but women were more satisfied with female physicians.
Previous studies found weak preferences for physician-patient gender synchronicity when presenting complaints were not gender-specific.1,2 Preferences for same-gender physicians became much stronger when subjects sought help for intimate health problems, including gynecologic and obstetric care.1,2
Although not linked directly to those preferences, communication studies of primary care visits found broad differences between physicians of different genders.3,4 Female physicians engaged in more partnership building, emotionally focused talk, positive talk, and psychosocial exchange than male physicians. Both male and female patients of female physicians also disclosed more biomedical and psychosocial information and were more positive in their talk than patients of male physicians.3,4
Communication behaviors associated with female physicians were generally valued by subjects and predictive of positive outcomes, including satisfaction, recall of medical information, compliance with medical recommendations,5 and health status improvements.6 The literature directly relating physician gender and patient satisfaction is mixed; some studies found higher satisfaction with female physicians7 and others the opposite.8,9
Although the dynamics of physician gender preferences and their consequences for communication and satisfaction are important to obstetric practices, none of the studies involved obstetricians.10 That was not surprising; most communication studies were conducted in primary care, and it is only recently that sufficient numbers of female physicians made such research practical.
As part of a larger study focused on prenatal genetic testing and counseling,11 we investigated the influence of physician gender on communication in obstetric visits. The present study of the routine process of care during first obstetric visit, based on audiotape analysis of male and female obstetricians, determined whether there were gender differences in style and content of obstetrician communication during prenatal visits and whether patient satisfaction with prenatal care was associated with obstetrician gender, even when controlling for communication and subject sociodemographic variables.
Obstetrics and Gynecology 04/1999; 93(5, Part 1):635-641. · 4.73 Impact Factor
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Community Genetics 02/1998; 1(4):203-12. · 1.32 Impact Factor
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Journal of Genetic Counseling 07/1997; 6(2):207-22. · 1.77 Impact Factor
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ABSTRACT: To assess public reactions to the June 26, 2000, announcement that scientists had nearly finished mapping the human genome.
We conducted a random-digit telephone survey of 407 Maryland residents as well as a content analysis of 55 relevant media reports.
African Americans were more likely than Caucasians to report a negative reaction (P < 0.001) to the genome announcement. Overall, privacy/discrimination (16%) and human cloning (14%) were the most commonly mentioned concerns regarding the impact of the genome mapping.
These findings highlight the need for continued public discourse, including through the media, to address concerns regarding the Human Genome Project.
Genetics in Medicine 4(1):31-6. · 4.76 Impact Factor
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ABSTRACT: To assess nongeneticist physicians' knowledge and experience with BRCA1/2 testing.
In 1998, 2250 internists, obstetrician-gynecologists (Ob-Gyns), and oncologists practicing in Pennsylvania, Maryland, Massachusetts, New York, or New Jersey were surveyed.
Forty percent responded. Only 13% of internists, 21% of Ob-Gyns, and 40% of oncologists correctly answered all four knowledge questions about genetic aspects of breast cancer and testing for it. Knowledge was associated with discussing or ordering only among oncologists.
Despite deficiencies in their knowledge about the genetic aspects of breast cancer, many nongeneticist physicians have discussed testing and some have ordered testing.
Genetics in Medicine 5(2):99-105. · 4.76 Impact Factor
