Publications by authors named "Patricia McCarthy Veach"

78 Publications

Content analysis of Journal of Genetic Counseling research articles: A multi-year perspective.

J Genet Couns 2020 Dec 15. Epub 2020 Dec 15.

Department of Genetics, Cell Biology, and Development, University of Minnesota, Minneapolis, MN, USA.

Content analyses of published papers in journals inform readers, editors, and members of the profession about historical publication patterns and how the journal has represented the field. This study is a content analysis of original research papers published in the Journal of Genetic Counseling from January 2011 through December 2017. This is the first study of its kind for the flagship journal of the National Society of Genetic Counseling. Of 794 papers published in the 7-year period, 428 were original research included in the analysis. Content analysis yielded categories reflecting the types of data analyses, genetic counseling practice specialties, characteristics of the study sample, and major topics/issues investigated in each study. There was an overall positive linear trend in the number of articles published during this period (p = .002). Approximately equal percentages of studies used qualitative (34%), quantitative (31%), and mixed (35%) analyses, and these proportions did not vary significantly across volumes (p = .73). Cancer (27%), prenatal (13.3%), and general genetics (12.6%) were the most prevalent specialties represented. The number of studies about prenatal and pediatrics was less, and the number of studies about neurogenetics was greater than would be expected based on the clinical workforce (p<.001). Patients were the most common sample (55.6%). While there was a significant increase in the number of articles with diverse samples (p = .001), the proportion of such articles did not increase over time (p = .86). The most common content areas were genetic counseling practice (16.8%); attitudes, perceptions, and beliefs about genetics services (16.1%); and decision-making (14.5%). In contrast, relatively few studies focused on laboratory genetic counselor, male, gender non-conforming, and adoptee populations. The trends and gaps highlighted in this content analysis can inform future research endeavors.
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http://dx.doi.org/10.1002/jgc4.1373DOI Listing
December 2020

Effects of monitoring versus blunting on the public's preferences for information in a hypothetical cancer diagnosis scenario.

J Genet Couns 2021 Feb 24;30(1):132-143. Epub 2020 Jun 24.

Department of Genetics, Cell Biology, and Development, University of Minnesota, Minneapolis, MN, USA.

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.
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http://dx.doi.org/10.1002/jgc4.1302DOI Listing
February 2021

A Systematized review of experiences of individuals in Arnett's emerging adulthood stage who live with or are at-risk for genetic conditions.

J Genet Couns 2020 12 7;29(6):1059-1080. Epub 2020 Mar 7.

Department of Genetics, Cell Biology, and Development, University of Minnesota, Minneapolis, MN, USA.

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.
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http://dx.doi.org/10.1002/jgc4.1238DOI Listing
December 2020

Genetic counselor and proxy patient perceptions of genetic counselor responses to prenatal patient self-disclosure requests: Skillfulness is in the eye of the beholder.

J Genet Couns 2020 12 1;29(6):894-909. Epub 2019 Dec 1.

Department of Genetics, Cell Biology, and Development, University of Minnesota, Minneapolis, MN, USA.

Research demonstrates some genetic counselors self-disclose while others do not when patients' request self-disclosure. Limited psychotherapy research suggests skillfulness matters more than type of counselor response. This survey research assessed perceived skillfulness of genetic counselor self-disclosures and non-disclosures. Genetic counselors (n = 147) and proxy patients, women from the public (n = 201), read a hypothetical prenatal genetic counseling scenario and different counselor responses to the patient's question, What would you do if you were me? Participants were randomized either to a self-disclosure study (Study 1) or non-disclosure study (Study 2) and, respectively, rated the skillfulness of five personal disclosures and five professional disclosures or five decline to disclose and five redirecting non-disclosures. Counselor responses in both studies varied by intention (corrective, guiding, interpretive, literal, or reassuring). Participants also described what they thought made a response skillful. A three-way mixed ANOVA in both studies analyzed skillfulness ratings as a function of sample (proxy patient, genetic counselor), response type (personal, professional self-disclosure, or redirecting, declining non-disclosure), and response intention. Both studies found a significant three-way interaction and strong main effect for response intention. Responses rated highest in skillfulness by both genetic counselors and proxy patients in Study 1 were a guiding personal self-disclosure and a personal reassuring self-disclosure. The response rated highest in skillfulness by both samples in Study 2 was a redirecting non-disclosure with a reassuring intention. Proxy patients in both studies rated all literal responses as more skillful than genetic counselors. Participants' commonly described a skillful response as offering guidance and/or reassurance. Counselor intentions and response type appear to influence perceptions, and counselors and patients may not always agree in their perceptions. Consistent with models of practice (e.g., Reciprocal-Engagement Model), genetic counselors generally should aim to convey support and guidance in their responses to prenatal patient self-disclosure requests.
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http://dx.doi.org/10.1002/jgc4.1190DOI Listing
December 2020

Familial implications of autoimmune disease: Recurrence risks of alopecia areata and associated conditions in first-degree relatives.

J Genet Couns 2020 02 11;29(1):35-43. Epub 2019 Oct 11.

Department of Dermatology, University of Minnesota Health, Minneapolis, MN, USA.

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.
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http://dx.doi.org/10.1002/jgc4.1178DOI Listing
February 2020

Development of a motivational interviewing genetic counseling intervention to increase cascade cholesterol screening in families of children with familial hypercholesterolemia.

J Genet Couns 2019 10 5;28(5):1059-1064. Epub 2019 Jul 5.

Department of Genetics, Cell Biology, and Development, University of Minnesota-Twin Cities, Minneapolis, Minnesota.

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http://dx.doi.org/10.1002/jgc4.1145DOI Listing
October 2019

An exploration of novice genetic counselors' transitional challenges: Commencement is just the beginning.

J Genet Couns 2019 08 6;28(4):822-835. Epub 2019 May 6.

University of Minnesota Health, Minneapolis, Minnesota.

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.
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http://dx.doi.org/10.1002/jgc4.1125DOI Listing
August 2019

Genetic counseling supervisor strategies: An elaboration of the Reciprocal-Engagement Model of Supervision.

J Genet Couns 2019 06 23;28(3):602-615. Epub 2019 Feb 23.

Department of Genetics, Cell Biology, and Development, University of Minnesota, Minneapolis, Minnesota.

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.
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http://dx.doi.org/10.1002/jgc4.1057DOI Listing
June 2019

Beyond medical actionability: Public perceptions of important actions in response to hypothetical genetic testing results.

J Genet Couns 2019 04 2;28(2):355-366. Epub 2019 Feb 2.

Department of Genetics, Cell Biology, and Development, University of Minnesota, Minneapolis, Minnesota.

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.
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http://dx.doi.org/10.1002/jgc4.1048DOI Listing
April 2019

Barriers to the identification of familial hypercholesterolemia among primary care providers.

J Community Genet 2019 Apr 11;10(2):229-236. Epub 2018 Sep 11.

Department of Genetics, Cell Biology & Development, University of Minnesota-Twin Cities, Minneapolis, MN, USA.

Familial hypercholesterolemia (FH) is severely underdiagnosed in the USA. Primary care providers are well-positioned to identify FH cases; however, universal FH screening is not routinely implemented in practice. The aim of the present study was to identify perceived barriers to FH screening among primary care physicians in Minnesota. A questionnaire assessed FH screening practices, knowledge, and perceived barriers to FH screening. The questionnaire, sent electronically to internal and family medicine physicians in Minnesota (N = 1932) yielded a conservative estimated response rate of 9% (N = 173). Although 92% of participants reported themselves responsible for identifying individuals with FH, 30% did not routinely perform screening in practice. Only 50% of participants were able to correctly identify the risk of FH to first-degree relatives of individuals with FH. Challenges incorporating lipid and family history data was the most frequently endorsed barrier to FH screening (34%). A majority of participants endorsed a clinical decision support system that flags individuals at high risk for FH (62%) and an algorithm with cholesterol levels and lipid disorders (56%) as means of facilitating FH screening. Although the generalizability of the findings is unknown, the results underscore the need for increased provider education regarding FH and suggest an FH screening strategy incorporating a clinical decision support system, screening algorithm, and support from other healthcare providers.
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http://dx.doi.org/10.1007/s12687-018-0383-3DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6435775PMC
April 2019

Response to Costa, Lemos, and Paneque Letter to the Editor.

J Genet Couns 2018 08 1;27(4):1008. Epub 2018 Jul 1.

Department of Genetics, Cell Biology, and Development, University of Minnesota, Minneapolis, MN, USA.

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http://dx.doi.org/10.1007/s10897-018-0277-xDOI Listing
August 2018

Managing Couple Conflict During Prenatal Counseling Sessions: An Investigation of Genetic Counselor Experiences and Perceptions.

J Genet Couns 2018 09 22;27(5):1275-1290. Epub 2018 Mar 22.

Department of Genetics, Cell Biology, and Development, University of Minnesota, Minneapolis, MN, USA.

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.
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http://dx.doi.org/10.1007/s10897-018-0252-6DOI Listing
September 2018

The Journal of Genetic Counseling: Continuing to Add Value to the Profession.

J Genet Couns 2018 02;27(1):312

Department of Genetics, Cell Biology, and Development, University of Minnesota, Twin Cities, Minneapolis, MN, USA.

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http://dx.doi.org/10.1007/s10897-017-0202-8DOI Listing
February 2018

Relieving the Bottleneck: An Investigation of Barriers to Expansion of Supervision Networks at Genetic Counseling Training Programs.

J Genet Couns 2018 02 6;27(1):241-251. Epub 2017 Sep 6.

The University of Texas MD Anderson Cancer Center UTHealth Graduate School of Biomedical Sciences, Houston, TX, USA.

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.
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http://dx.doi.org/10.1007/s10897-017-0142-3DOI Listing
February 2018

Elaboration of the Reciprocal-Engagement Model of Genetic Counseling Practice: a Qualitative Investigation of Goals and Strategies.

J Genet Couns 2017 Dec 22;26(6):1372-1387. Epub 2017 Jun 22.

Department of Genetics, Cell Biology, and Development, Institute of Human Genetics, University of Minnesota, Minneapolis, MN, USA.

As the genetic counseling field evolves, a comprehensive model of practice is critical. The Reciprocal-Engagement Model (REM) consists of 5 tenets and 17 goals. Lacking in the REM, however, are well-articulated counselor strategies and behaviors. The purpose of the present study was to further elaborate and provide supporting evidence for the REM by identifying and mapping genetic counseling strategies to the REM goals. A secondary, qualitative analysis was conducted on data from two prior studies: 1) focus group results of genetic counseling outcomes (Redlinger-Grosse et al., Journal of Genetic Counseling, 2015); and 2) genetic counselors' examples of successful and unsuccessful genetic counseling sessions (Geiser et al. 2009). Using directed content analysis, 337 unique strategies were extracted from focus group data. A Q-sort of the 337 strategies yielded 15 broader strategy domains that were then mapped to the successful and unsuccessful session examples. Differing prevalence of strategy domains identified in successful sessions versus the prevalence of domains identified as lacking in unsuccessful sessions provide further support for the REM goals. The most prevalent domains for successful sessions were Information Giving and Use Psychosocial Skills and Strategies; and for unsuccessful sessions, Information Giving and Establish Working Alliance. Identified strategies support the REM's reciprocal nature, especially with regard to addressing patients' informational and psychosocial needs. Patients' contributions to success (or lack thereof) of sessions was also noted, supporting a REM tenet that individual characteristics and the counselor-patient relationship are central to processes and outcomes. The elaborated REM could be used as a framework for certain graduate curricular objectives, and REM components could also inform process and outcomes research studies to document and further characterize genetic counselor strategies.
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http://dx.doi.org/10.1007/s10897-017-0114-7DOI Listing
December 2017

"If It Helps, It's Worth a Try": an Investigation of Perceptions and Attitudes about Genetic Counseling among Southern Manitoba Hutterites.

J Genet Couns 2017 Dec 14;26(6):1357-1371. Epub 2017 Jun 14.

Department of Genetics, Cell Biology, and Development, University of Minnesota, Minneapolis, MN, USA.

Few studies have explored the public's views of genetic counseling services, and even fewer focus on founder populations with high prevalence of genetic disease, such as Hutterites. The Hutterites are an Anabaptist religious group grounded in a strong Christian faith. The primary aim of this study was to assess Hutterites' views of genetic counseling services. A secondary aim was to compare their views to those obtained in a study of rural Midwestern U.S. residents (Riesgraf et al., Journal of Genetic Counseling, 24(4), 565-579, 2015). One-hundred eleven individuals from southern Manitoba Hutterite colonies completed an anonymous survey assessing familiarity with and attitudes about genetic counseling; perceptions of its purpose, scope and practice; and willingness to use genetic counseling services. Although many respondents were not familiar with genetic counseling, most had accurate perceptions and positive attitudes. For instance, mean ratings showed endorsement of trust in information provided by genetic counselors and agreement that genetic counseling aligns with their values. Logistic regression indicated reported willingness to use genetic counseling services increased if respondents: had a higher self-rated familiarity with genetic counseling; were younger; agreed with the statement: I would trust the information provided by a genetic counselor; and disagreed with the statements: Genetic counseling is only useful for a small group of people with rare diseases, and Genetic counselors help expectant parents choose the eye color of their child. Thematic analysis of comments regarding willingness to use genetic counseling services yielded themes of personal/family risk, pragmatism (genetic counseling is sensible and practical for managing health concerns), and desire to prevent genetic conditions in the Hutterite population. Comparison of the present findings to those of Riesgraf et al. suggests predictors of Hutterites' willingness to use genetic counseling are unique and culturally-based. Limited replication of Riesgraf et al. was achieved. Additional findings, practice implications and research recommendations are presented.
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http://dx.doi.org/10.1007/s10897-017-0121-8DOI Listing
December 2017

Characterizing Clinical Genetic Counselors' Countertransference Experiences: an Exploratory Study.

J Genet Couns 2017 Oct 10;26(5):934-947. Epub 2017 Jan 10.

Department of Genetics, Cell Biology, and Development, University of Minnesota, Minneapolis, MN, USA.

Countertransference (CT) refers to conscious and unconscious emotions, fantasies, behaviors, perceptions, and psychological defenses genetic counselors experience in response to any aspect of genetic counseling situations (Weil 2010). Some authors theorize about the importance of recognizing and managing CT, but no studies solely aim to explore genetic counselors' experiences of the phenomenon. This study examined the extent to which clinical genetic counselors' perceive themselves as inclined to experience CT, gathered examples of CT encountered in clinical situations, and assessed their CT management strategies. An anonymous online survey, sent to NSGC members, yielded 127 usable responses. Participants completed Likert-type items rating their CT propensities; 57 of these individuals also provided examples of CT they experienced in their practice. Factor analysis of CT propensities tentatively suggested four factors: Control, Conflict Avoidance, Directiveness, and Self-Regulation, accounting for 38.5% of response variance. Thematic analysis of CT examples yielded five common triggers: general similarity to patient, medical/genetic similarity, angry patients, patient behaves differently from counselor expectations, and disclosing bad news; six common manifestations: being self-focused, projecting feelings onto the patient, intense emotional reaction to patient, being overly invested, disengagement, and physical reaction; five CT effects: disruption in rapport building, repaired empathy, over-identification, conversation does not reach fullest potential, and counselor is drained emotionally; and three management strategies: recognizing CT as it occurs, self-reflection, and consultation. Results suggest CT is a common experience, occurring in both "routine" and emotionally complex cases. Training programs, continuing education, and peer supervision might include discussion of CT, informed by examples from the present study, to increase genetic counselor awareness and skills for managing the phenomenon.
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http://dx.doi.org/10.1007/s10897-016-0063-6DOI Listing
October 2017

Why Is Cancer Genetic Counseling Underutilized by Women Identified as at Risk for Hereditary Breast Cancer? Patient Perceptions of Barriers Following a Referral Letter.

J Genet Couns 2017 Aug 8;26(4):697-715. Epub 2016 Nov 8.

Allina Health, Virginia Piper Cancer Institute, 800 East 28th Street, Suite 602, Minneapolis, MN, 55407, USA.

Family history information comprises an important tool in identifying and referring patients at risk for hereditary breast and ovarian cancer (HBOC) to cancer genetic counseling. Despite recommendations and support provided by numerous professional organizations, cancer genetic counseling services are underutilized by atrisk patients. This study aimed to: (1) determine the rate of genetic counseling utilization following a referral letter, (2) characterize factors (barriers and supports) which influenced uptake of services, and (3) identify potential strategies for increasing utilization. This study evaluated the uptake of cancer genetic counseling among 603 screening mammography patients identified as having an increased risk for HBOC based on National Comprehensive Cancer Network (NCCN) guidelines. At risk individuals and their primary care providers were mailed a referral letter recommending genetic counseling. Three focus groups (N = 24) were conducted to identify responses to receiving a letter recommending genetic counseling, barriers to seeking genetic counseling, and facilitating factors to utilizing these services. Participant responses were qualitatively analyzed using thematic and cross case analysis. Within one year, 50/603 (8 %) of the identified at-risk women completed a genetic counseling appointment. Participant-perceived barriers which influenced their decision not to seek genetic counseling included lack of relevance and utility, limited knowledge about genetic counseling, concerns about the genetic counseling process, and concerns about cost and insurance coverage. Participant-perceived facilitating factors which would support a decision to seek genetic counseling included greater awareness and education about genetic counseling services when receiving a referral, and improved follow up and guidance from their provider. Findings from this study support the need for patient and primary care provider education, and improved provider-patient communication to increase uptake of genetic counseling services.
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http://dx.doi.org/10.1007/s10897-016-0040-0DOI Listing
August 2017

Erratum to: Genetic Counselors' Experiences Regarding Communication of Reproductive Risks with Autosomal Recessive Conditions found on Cancer Panels.

J Genet Couns 2016 Apr;25(2):412

Department of Genetics, Cell Biology, & Development, University of Minnesota, 321 Church Street, 6-160 Jackson Hall, Minneapolis, MN, 55455, USA.

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http://dx.doi.org/10.1007/s10897-015-9919-4DOI Listing
April 2016

From Novice to Seasoned Practitioner: a Qualitative Investigation of Genetic Counselor Professional Development.

J Genet Couns 2016 08 9;25(4):818-34. Epub 2015 Nov 9.

Department of Genetics, Cell Biology, and Development, University of Minnesota, Minneapolis, MN, USA.

Research on genetic counselor professional development would characterize typical developmental processes, inform training and supervision, and promote life-long development opportunities. To date, however no studies have comprehensively examined this phenomenon. The aims of this study were to investigate the nature of professional development for genetic counselors (processes, influences, and outcomes) and whether professional development varies across experience levels. Thirty-four genetic counselors participated in semi-structured telephone interviews exploring their perspectives on their professional development. Participants were sampled from three levels of post-degree genetic counseling experience: novice (0-5 years), experienced (6-14 years), and seasoned (>15 years). Using modified Consensual Qualitative Research and grounded theory methods, themes, domains, and categories were extracted from the data. The themes reflect genetic counselors' evolving perceptions of their professional development and its relationship to: (a) being a clinician, (b) their professional identity, and (c) the field itself. Across experience levels, prevalent influences on professional development were interpersonal (e.g., experiences with patients, genetic counseling colleagues) and involved professional and personal life events. Common developmental experiences included greater confidence and less anxiety over time, being less information-driven and more emotion-focused with patients, delivering "bad news" to patients remains challenging, and individuals' professional development experiences parallel genetic counseling's development as a field. With a few noteworthy exceptions, professional development was similar across experience levels. A preliminary model of genetic counselor professional development is proposed suggesting development occurs in a non-linear fashion throughout the professional lifespan. Each component of the model mutually influences the others, and there are positive and negative avenues of development.
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http://dx.doi.org/10.1007/s10897-015-9900-2DOI Listing
August 2016

Development, Experience, and Expression of Meaning in Genetic Counselors' Lives: an Exploratory Analysis.

J Genet Couns 2016 08 24;25(4):799-817. Epub 2015 Oct 24.

Department of Genetics, Cell Biology, and Development, University of Minnesota, Minneapolis, MN, USA.

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.
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http://dx.doi.org/10.1007/s10897-015-9901-1DOI Listing
August 2016

Genetic Counselors' Experiences Regarding Communication of Reproductive Risks with Autosomal Recessive Conditions found on Cancer Panels.

J Genet Couns 2016 Apr 10;25(2):359-72. Epub 2015 Oct 10.

Department of Genetics, Cell Biology, & Development, University of Minnesota, 321 Church Street, 6-160 Jackson Hall, Minneapolis, MN, 55455, USA.

The development of hereditary cancer genetic testing panels has altered genetic counseling practice. Mutations within certain genes on cancer panels pose not only a cancer risk, but also a reproductive risk for autosomal recessive conditions such as Fanconi anemia, constitutional mismatch repair deficiency syndrome, and ataxia telangiectasia. This study aimed to determine if genetic counselors discuss reproductive risks for autosomal recessive conditions associated with genes included on cancer panels, and if so, under what circumstances these risks are discussed. An on-line survey was emailed through the NSGC list-serv. The survey assessed 189 cancer genetic counselors' experiences discussing reproductive risks with patients at risk to carry a mutation or variant of uncertain significance (VUS) in a gene associated with both an autosomal dominant cancer risk and an autosomal recessive syndrome. Over half (n = 82, 55 %) reported having discussed reproductive risks; the remainder (n = 66, 45 %) had not. Genetic counselors who reported discussing reproductive risks primarily did so when patients had a positive result and were of reproductive age. Reasons for not discussing these risks included when a patient had completed childbearing or when a VUS was identified. Most counselors discussed reproductive risk after obtaining results and not during the informed consent process. There is inconsistency as to if and when the discussion of reproductive risks is taking place. The wide variation in responses suggests a need to develop professional guidelines for when and how discussions of reproductive risk for autosomal recessive conditions identified through cancer panels should occur with patients.
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http://dx.doi.org/10.1007/s10897-015-9892-yDOI Listing
April 2016

Portrait of the Master Genetic Counselor Clinician: A Qualitative Investigation of Expertise in Genetic Counseling.

J Genet Couns 2016 08 16;25(4):767-85. Epub 2015 Aug 16.

Department of Genetics, Cell Biology, and Development, University of Minnesota, Minneapolis, MN, USA.

This study comprises an initial empirical description of personal and professional characteristics of master genetic counselors-those considered to be experts in the profession. Fifteen peer-nominated genetic counselors, actively engaged in providing clinical services to patients, participated in semi-structured telephone interviews exploring their personal qualities, inspirations, and perspectives on professional development of expertise. Analysis using modified Consensual Qualitative Research methods yielded 7 domains and 33 categories. Findings indicate master genetic counselors have a strong passion for and dynamic commitment to the profession. They also have insatiable curiosity and are life-long learners who are reflective, self-aware, confident, and recognize their limitations. They are authentic and genuine, and consider their personality to be their counseling style. They form collaborative and interactive relationships with patients based on trust, and they have nuanced attunement to the complexity and multiple levels of the counseling process. Master genetic counselors have deep empathy and are inspired by patients and colleagues, and they derive personal meaning from their work. They are affected emotionally by their work, but effectively manage the emotional impact. They view their professional development as ongoing, influenced by colleagues, patients, mentoring, multicultural considerations, and their own family of origin. They also believe professional development of expertise occurs through critical reflection upon the experiences one accrues. Additional findings and their relationship to theory and research, study strengths and limitations, implication for training and practice, and research recommendation are discussed.
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http://dx.doi.org/10.1007/s10897-015-9863-3DOI Listing
August 2016

Canaries in the coal mine: Personal and professional impact of undergoing whole genome sequencing on medical professionals.

Am J Med Genet A 2015 Nov 29;167A(11):2647-56. Epub 2015 Jul 29.

Department of Genetics, Cell Biology, and Development, University of Minnesota - Twin Cities, Minneapolis, Minnesota.

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.
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http://dx.doi.org/10.1002/ajmg.a.37262DOI Listing
November 2015

Defining Our Clinical Practice: The Identification of Genetic Counseling Outcomes Utilizing the Reciprocal Engagement Model.

J Genet Couns 2016 Apr 25;25(2):239-57. Epub 2015 Jul 25.

Department of Genetics, Cell Biology, and Development, Institute of Human Genetics, University of Minnesota, Minneapolis, MN, USA.

The need for evidence-based medicine, including comparative effectiveness studies and patient-centered outcomes research, has become a major healthcare focus. To date, a comprehensive list of genetic counseling outcomes, as espoused by genetic counselors, has not been established and thus, identification of outcomes unique to genetic counseling services has become a priority for the National Society of Genetic Counselors (NSGC). The purpose of this study was to take a critical first step at identifying a more comprehensive list of genetic counseling outcomes. This paper describes the results of a focus group study using the Reciprocal-Engagement Model (REM) as a framework to characterize patient-centered outcomes of genetic counseling clinical practice. Five focus groups were conducted with 27 peer nominated participants who were clinical genetic counselors, genetic counseling program directors, and/or outcomes researchers in genetic counseling. Members of each focus group were asked to identify genetic counseling outcomes for four to five of the 17 goals of the REM. A theory-driven, thematic analysis of focus group data yielded 194 genetic counseling outcomes across the 17 goals. Participants noted some concerns about how genetic counseling outcomes will be measured and evaluated given varying stakeholders and the long-term nature of genetic concerns. The present results provide a list of outcomes for use in future genetic counseling outcomes research and for empirically-supported clinical interventions.
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http://dx.doi.org/10.1007/s10897-015-9864-2DOI Listing
April 2016

Form Follows Function: A Model for Clinical Supervision of Genetic Counseling Students.

J Genet Couns 2015 Oct 10;24(5):702-16. Epub 2015 May 10.

Department of Genetics, Cell Biology, and Development, University of Minnesota, Minneapolis, MN, USA.

Supervision plays a vital role in genetic counselor training, yet models describing genetic counseling supervision processes and outcomes are lacking. This paper describes a proposed supervision model intended to provide a framework to promote comprehensive and consistent clinical supervision training for genetic counseling students. Based on the principle "form follows function," the model reflects and reinforces McCarthy Veach et al.'s empirically derived model of genetic counseling practice - the "Reciprocal Engagement Model" (REM). The REM consists of mutually interactive educational, relational, and psychosocial components. The Reciprocal Engagement Model of Supervision (REM-S) has similar components and corresponding tenets, goals, and outcomes. The 5 REM-S tenets are: Learning and applying genetic information are key; Relationship is integral to genetic counseling supervision; Student autonomy must be supported; Students are capable; and Student emotions matter. The REM-S outcomes are: Student understands and applies information to independently provide effective services, develop professionally, and engage in self-reflective practice. The 16 REM-S goals are informed by the REM of genetic counseling practice and supported by prior literature. A review of models in medicine and psychology confirms the REM-S contains supervision elements common in healthcare fields, while remaining unique to genetic counseling. The REM-S shows promise for enhancing genetic counselor supervision training and practice and for promoting research on clinical supervision. The REM-S is presented in detail along with specific examples and training and research suggestions.
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http://dx.doi.org/10.1007/s10897-015-9837-5DOI Listing
October 2015

Clearing the Air: A Qualitative Investigation of Genetic Counselors' Experiences of Counselor-Focused Patient Anger.

J Genet Couns 2015 Oct 5;24(5):717-31. Epub 2015 Feb 5.

Department of Genetics, Cell Biology, and Development, University of Minnesota, Minneapolis, MN, USA.

Patient anger is challenging for healthcare professionals to manage, particularly when it is directed at them. This study comprises the first in-depth investigation of genetic counselors' experiences with patient anger. Using a brief survey and interview methods, this study explored prevalence and context of patient anger directed at the genetic counselor, how genetic counselors manage patient anger directed at them, and possible thematic differences due to genetic counseling experience. Individuals enrolled in the National Society of Genetic Counselors (NSGC) listserv were invited to participate in a study of their experiences with patient anger directed at them. A majority of survey respondents (95.7 %, 243/254) reported experiencing patient anger directed at them, and 19.4 % reported having feared for their safety because of patient anger. Twenty-two survey respondents were purposively selected to participate in individual interviews. Inductive and cross case analysis yielded prevalent themes concerning patient triggers for anger, including bad news, logistical mishaps, and perceived counselor characteristics. Interview results further suggest unaddressed patient anger negatively affected patient and counselor emotional well-being and hindered genetic counseling goals. Prevalent challenges included genetic counselor attempts to accurately recognize, understand, and effectively manage patient anger without taking it personally. Commonly recommended strategies for addressing anger were empathy (i.e., understanding origins of patient anger), anticipating and acknowledging anger, maintaining personal, professional and legal protection, and debriefing with colleagues. Themes were quite similar across counselor experience levels. The findings underscore the importance of training and continuing education regarding patient anger. Additional findings, practice implications, and research recommendations are presented.
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http://dx.doi.org/10.1007/s10897-014-9815-3DOI Listing
October 2015

Ethical and Professional Challenges Encountered by Laboratory Genetic Counselors.

J Genet Couns 2015 Aug 16;24(4):580-96. Epub 2014 Nov 16.

Department of Pediatrics, Southern Illinois University School of Medicine, 301 N. 8th St., PO Box 19658, Springfield, IL, 62794, USA,

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.
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http://dx.doi.org/10.1007/s10897-014-9787-3DOI Listing
August 2015

Perceptions and Attitudes About Genetic Counseling Among Residents of a Midwestern Rural Area.

J Genet Couns 2015 Aug 8;24(4):565-79. Epub 2014 Oct 8.

HealthEast Care System, Maplewood, MN, USA.

Relatively few investigations of the public's perceptions and attitudes about genetic counseling exist, and most are limited to individuals at-risk for a specific disease. In this study 203 individuals from a Midwest rural area completed an anonymous survey assessing their familiarity with genetic counseling; perceptions of genetic counseling purpose, scope, and practice; attitudes toward genetic counseling/counselors; and willingness to use genetic counseling services. Although very few respondents were familiar with genetic counseling, most reported accurate perceptions and positive attitudes; mean ratings, however, showed less endorsement of trust in information provided by genetic counselors and less agreement that genetic counseling aligns with their values. Logistic regression indicated reported willingness to use genetic counseling services increased if respondents: had completed some college; rated their familiarity with genetic counseling as high; agreed with the statements: genetic counseling may be useful to someone with cancer in their family, genetic counseling is in line with my values, and genetic counselors advise women to get abortions when there is a problem; and disagreed with the statements: genetic counseling is only useful to a small group of people with rare diseases, and genetic counselors must receive a lot of special training. Additional findings, practice implications, and research recommendations are presented.
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http://dx.doi.org/10.1007/s10897-014-9777-5DOI Listing
August 2015

Who is at risk for compassion fatigue? An investigation of genetic counselor demographics, anxiety, compassion satisfaction, and burnout.

J Genet Couns 2015 Apr 1;24(2):358-70. Epub 2014 May 1.

Medical Division, Genzyme Korea Co., Ltd, Seoul, South Korea.

Compassion fatigue is a state of detachment and isolation experienced when healthcare providers repeatedly engage with patients in distress. Compassion fatigue can hinder empathy and cause extreme tension. Prior research suggests 73.8 % of genetic counselors are at moderate to high risk for compassion fatigue and approximately 1 in 4 have considered leaving the field as a result Injeyan et al. (Journal of Genetic Counseling, 20, 526-540, 2011). Empirical data to establish a reliable profile of genetic counselors at risk for compassion fatigue are limited. Thus the purpose of this study was to establish a profile by assessing relationships between state and trait anxiety, burnout, compassion satisfaction, selected demographics and compassion fatigue risk in practicing genetic counselors. Practicing genetic counselors (n = 402) completed an anonymous, online survey containing demographic questions, the State-Trait Anxiety Inventory, and the Professional Quality of Life scale. Multiple regression analysis yielded four significant predictors which increase compassion fatigue risk (accounting for 48 % of the variance): higher levels of trait anxiety, burnout, and compassion satisfaction, and ethnicity other than Caucasian. Additional findings, study limitations, practice implications, and research recommendations are provided.
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http://dx.doi.org/10.1007/s10897-014-9716-5DOI Listing
April 2015