Patricia McCarthy Veach

Coming Full Circle: A Reciprocal-Engagement Model of Genetic Counseling Practice

As genetic health care and genetic testing expand from primarily addressing conditions that are exclusively genetic in nature to common diseases with both genetic and environmental components, the scope of genetic counseling has grown. Identification and utilization of a normative model of practice defined by members of the profession is critical as genetic services become more commonplace in medical care. The purpose of this paper is to describe the results of a consensus conference convened to define a model of genetic counseling practice based on the guidance of educators and leaders in the profession. Twenty-three program directors or their representatives from 20 genetic counseling graduate programs in North America listened to presentations and participated in group discussions aimed at determining the elements of a model of practice, including tenets, goals, strategies, and behaviors for addressing patients’ genetic concerns. Their discussion is summarized, training implications and research recommendations are presented, and a model of practice that extends their ideas is proposed.

Parents’ Perceptions of Autism Spectrum Disorder Etiology and Recurrence Risk and Effects of their Perceptions on Family Planning: Recommendations for Genetic Counselors

Knowledge about the etiology of Autism Spectrum Disorders (ASDs) is increasing, but causes remain elusive for most cases. Genetic counselors are positioned to help families that have children with ASDs despite uncertainty regarding etiology. To determine how genetic counselors might best provide services, an anonymous survey was conducted with 255 parents whose children were diagnosed on the autism spectrum. Questions concerned: 1) their perceptions of ASD cause(s) and 2) recurrence risk, 3) whether perceived risk affected family planning decisions, 4) whether parents had received genetic services, and 5) how genetic counselors might assist families. The most prevalent perceived cause was genetic influences (72.6%). Most parents’ recurrence risk perceptions were inaccurately high and significantly affected family planning. Only 10% had seen a genetic professional related to an ASD. Parents provided several suggestions for genetic counselor best practices. Findings indicate the importance of genetic counselor awareness of parent perceptions in order to best help families who have children with ASDs.

Ethical and Professional Challenges Posed by Patients with Genetic Concerns: A Report of Focus Group Discussions with Genetic Counselors, Physicians, and Nurses

Ninety-seven physicians, nurses, and genetic counselors from four regions within the United States participated in focus groups to identify the types of ethical and professional challenges that arise when their patients have genetic concerns. Responses were taped and transcribed and then analyzed using the Hill et al. (1997, Counsel Psychol 25:517–522) Consensual Qualitative Research method of analysis. Sixteen major ethical and professional domains and 63 subcategories were identified. Major domains are informed consent; withholding information; facing uncertainty; resource allocation; value conflicts; directiveness/nondirectiveness; determining the primary patient; professional identity issues; emotional responses; diversity issues; confidentiality; attaining/maintaining proficiency; professional misconduct; discrimination; colleague error; and documentation. Implications for practitioners who deal with genetic issues and recommendations for additional research are given.

When You Care Enough to Do Your Very Best: Genetic Counselor Experiences of Compassion Fatigue

Compassion fatigue is a phenomenon that occurs when a caregiver feels overwhelmed by repeated empathic engagement with distressed clients (Figley, 2002). Research demonstrates its existence among nurses, physicians, and mental health professionals, but to date no published study has specifically investigated the nature and prevalence of compassion fatigue among genetic counselors. The present study was an initial attempt to identify and describe the phenomena in genetic counseling by conducting focus group interviews with 12 genetic counselors. Data analysis yielded several themes: a) compassion fatigue occurs and may compromise professional and personal functioning; b) prevalent triggers include delivering bad news and difficult patient issues (e.g., terminal illness, anger, psychopathology); c) effective coping strategies include consulting with colleagues, setting boundaries, and humor; and d) risk factors include personality characteristics and traumatic memories. Training, practice, and research recommendations are provided.

The Psychic Costs of Empathic Engagement: Personal and Demographic Predictors of Genetic Counselor Compassion Fatigue

Empathic connection with one’s patients is essential to genetic counselor clinical practice. However, repeatedly engaging with distressed patients may cause compassion fatigue, a phenomenon characterized as feeling overwhelmed by experiencing patients’ suffering. In order to extend findings of an initial qualitative study, we surveyed 222 genetic counselors about their compassion fatigue and factors that predict its occurrence. Multiple regression analysis identified seven significant predictors accounting for 53.7% of the variance in compassion fatigue. Respondents at higher risk of compassion fatigue were more likely to report being burned out, using self-criticism and giving up to manage stress, experiencing a greater variety of distressing clinical events, having larger patient caseloads, relying on religion as a coping strategy, having no children, and seeking support to manage stress. Respondents also provided critical incidents regarding their compassion fatigue and themes in these incidents are described. Practice and research recommendations are provided.

A Survey of Genetic Counselors' Strategies for Addressing Ethical and Professional Challenges in Practice

There is limited research about ethical and professional dilemmas that genetic counselors encounter in their practice and their strategies for addressing them. In this study, 454 genetic counselors rated the frequency with which they encounter each of 16 ethical/professional challenges identified and categorized previously (McCarthy Veach P, Bartels DM, LeRoy BS (2001) J Genet Couns 10(2):97–119). Over 40% indicated these issues occurred frequently: patient emotions, diversity, financial constraints, uncertainty, and colleague error. Two hundred and fifty-five respondents provided personal anecdotes describing exceptionally challenging situations and recommended strategies for addressing them. Most of their anecdotes involved informed consent, value conflicts, confidentiality, colleague error, withholding information, and resource allocation. The most frequently recommended strategies were further discussion with patient, consultation with other professionals, and referral to other health sources. Thirty-five respondents were unable to/did not offer strategies. Respondent demographics were not related to frequency of issues, type of anecdote, or recommended strategies. Practice, policy, and research implications are discussed.

What’s the Harm? Genetic Counselor Perceptions of Adverse Effects of Genetics Service Provision by Non-Genetics Professionals

Anecdotal accounts suggest some patients have experienced negative outcomes as a result of receiving genetics services from non-genetics providers, but empirical evidence of these incidents and their outcomes is limited. This study examined genetic counselors’ perceptions of the occurrence of such incidents in the state of Minnesota. Twenty-five genetic counselors completed an on-line survey and 20 also participated in a semi-structured telephone interview. The interviewees recalled and described 37 specific incidents they perceived as having negative outcomes for patients and/or their families. Inductive and cross-case analysis revealed common themes including: adverse psychosocial effects, inadequate genetic counseling, genetic testing and screening errors, medical mismanagement, negative shifts in attitudes toward medical providers, and unnecessary use of health care resources. Commonly mentioned strategies for preventing/mitigating negative outcomes included: educational outreach and awareness programs for medical providers and the general public, standardized testing and screening processes, and implementing mechanisms for reporting and addressing adverse events. Additional findings, practice and policy implications, and research recommendations are discussed.

An Investigation of Genetic Counselor Experiences in Peer Group Supervision

Peer supervision groups have been studied in counseling fields including psychotherapy and social work. However, limited research exists regarding genetic counselor peer supervision groups. In the present study five major research questions were investigated: (1) How prevalent is peer group supervision among genetic counselors? (2) What motivates genetic counselors to join and continue to seek peer group supervision? (3) What comprises the content, agenda, and structure of group meetings? (4) What are participants’ perceptions of group dynamics, including conflicts, cohesion, and leadership? and (5) What are the perceived benefits and limitations of participating in peer group supervision? A total of 214 genetic counselors completed an online survey, and 70 (34.8%) reported being involved currently in peer group supervision. Fifteen of these 70 respondents were interviewed regarding their experiences in peer group supervision. Inductive analysis of their responses yielded 11 domains and 37 categories. Practice implications and research recommendations are discussed.

Culture and Acculturation Influences on Palestinian Perceptions of Prenatal Genetic Counseling

Patient cultural backgrounds strongly influence decision-making processes and outcomes in genetic counseling. The present study investigated influences of culture and acculturation on prenatal decision making processes of native Palestinians and Palestinian Americans. Seventeen native Palestinians and 14 first-generation, Palestinian Americans were interviewed and asked to imagine themselves as patients in hypothetical premarital and prenatal situations. Five major issues were investigated: 1) Influence of family history of an inherited condition on pre-marital decisions; 2) Perceptions of non-directive genetic counselor statements regarding options; 3) Role of gender in prenatal decisions; 4) Gender differences in emotional expression; and 5) Role of family and society in prenatal decisions. Several similarities and differences in native Palestinian and Palestinian American responses were obtained. Similarities appear to be due to common cultural roots, while differences may be due to acculturation. Practice and research recommendations are provided.

Intrapersonal and Familial Effects of Child Sexual Abuse on Female Partners of Male Survivors.

Intrapersonal and familial effects of childhood sexual abuse (CSA) were investigated by interviewing 10 female partners of male survivors. Consensual qualitative research analysis (C. Hill, B. Thompson, & E. Nutt Williams, 1997) yielded 13 domains describing male partner, female partner, couple, and family functioning. Findings concerning emotional reactions, coping strategies, communication patterns, and sexual functioning correspond to the 3 components of C. Maltas and J. Shays (1995) trauma contagion model (i.e., threatened beliefs, chronic stress, and reenactment of aspects of CSA). Additional findings suggest themes of recovery from trauma contagion. Whereas results concerning threatened beliefs and chronic stress may replicate to other populations (e.g., partners of war veterans), reenactment of aspects of CSA seems unique. Practice and research recommendations are presented.