A Comparison of Telephone Genetic Counseling and In-Person Genetic Counseling from the Genetic Counselor’s Perspective

Growing demand for and limited geographic access to genetic counseling services is increasing the need for alternative service delivery models (SDM) like telephone genetic counseling (TGC). Little research has been done on genetic counselors’ perspectives of the practice of TGC. We created an anonymous online survey to assess whether telephone genetic counselors believed the tasks identified in the ABGC (American Board of Genetic Counseling) Practice Analysis were performed similarly or differently in TGC compared to in person genetic counseling (IPGC). If there were differences noted, we sought to determine the nature of the differences and if additional training might be needed to address them. Eighty eight genetic counselors with experience in TGC completed some or all of the survey. Respondents identified differences in 13 (14.8 %) of the 88 tasks studied. The tasks identified as most different in TGC were: “establishing rapport through verbal and nonverbal interactions” (60.2 %; 50/83 respondents identified the task as different), “recognizing factors affecting the counseling interaction” (47.8 %; 32/67), “assessing client/family emotions, support, etc.” (40.1 %; 27/66) and “educating clients about basic genetic concepts” (35.6 %; 26/73). A slight majority (53.8 %; 35/65) felt additional training was needed to communicate information without visual aids and more effectively perform psychosocial assessments. In summary, although a majority of genetic counseling tasks are performed similarly between TGC and IPGC, TGC counselors recognize that specific training in the TGC model may be needed to address the key differences.     

Parents’ Grief in the Context of Adult Child Mental Illness: A Qualitative Review

Research indicates that parents and other family members often grieve their child or relative’s mental illness. This grief appears resultant from a profound sense of loss, which has been described as complicated and nonfinite (e.g., Atkinson in Am J Psychiatry 151(8):1137–1139, 1994; Davis and Schultz in Soc Sci Med 46(3):369–379, 1998; Jones in Br J Soc Work 34:961–979, 2004; MacGregor in Soc Work 39(2):160–166, 1994; Osborne and Coyle in Couns Psychol Q 15(4):307–323, 2002; Ozgul in Aust N Z J Fam Ther 25(4):183–187, 2004; Tuck et al. in Arch Psychiatric Nurs 11(3):118–125, 1997). This paper reviews existent research in this emerging field, with a focus on parents’ grief experience in relation to their adult child’s mental disorder. Studies that explore parents’ and family members’ grief, using both qualitative and quantitative methodologies, are considered. Research evidence for the association between parents’ and family members’ grief and other outcomes are discussed. Findings concerning the prediction of grief in parents and family members who have a child or relative with a mental disorder will be reviewed. Finally, this paper considers methodological and theoretical issues associated with existent research and presents options for further study.     

Correction to: “Experiences of Having a Parent with Serious Mental Illness: an Interpretive Meta-synthesis of Qualitative Literature”

Journal of Child and Family Studies - This paper provides and informs a set of corrections to the previously published article noted above. Specifically, following the publication of the article,...     

Psychiatric Patients’ Evaluation of the Efficacy of Obeah vs. Western Medicine in Treating Their Mental Illness

This study sought to determine any potential benefits in psychiatric patients’ use of traditional medicine in their treatment. Participants were 51 Jamaican patients who self-reported on concurrent use of western and alternative medicine. They completed the Jamaican Healthcare Perception Questionnaire. Data were analysed using the chi-square test of differences between proportions. Findings indicated that 58.8% of patients incorporated traditional medicine in their treatment. These were less likely to agree with the diagnosis given by the formal practitioner and that his treatment was effective or to rate the quality of service of the formal practitioner as being satisfactory. Patients believed alternative medicine should be incorporated into the healthcare system.     

“The Label Mental Illness” or “It's Showing Its Ugly Head…”: Mothers’ Conceptualizations of Mental Illness in Their Children

This grounded theory study examined the metaphors mothers used for mental illness when they had children who were. Two metaphor types were found: static and dynamic. Static metaphors for mental illness emphasized their unchanging qualities and problem-solving or learning strategies were highlighted as ways to approach them. Dynamic metaphors for mental illness highlighted how they were changeable. Positioning the diseases in a storyline, in which one could “try again tomorrow,” was one of the primary ways participants described approaching them. Clinical implications of this research may increase family engagement with treatment.     

Helping Couples Fulfill the “Highest of Life’s Goals”: Mate Selection,Marriage Counselling,and Genetic Counseling in United States

This article traces the history of modern genetic counseling to mate selection and marriage counselling practices of the early-20th century. Mate selection revolved around a belief that human heredity could be improved and genetic diseases eradicated through better breeding. Marriage counselling, though interested in reproduction, was also concerned with the emotional and psychological well-being of couples. These two practices coalesced most obviously in the work of well-known geneticist Sheldon Reed. Even as marriage and genetic counselling diverged in the post-WWII period, vestiges of these practices remain in contemporary counseling experiences with family planning and genetic screening programs. Emphasizing points of continuity between “positive” eugenic ideologies and modern genetic practices elaborates the diverse origins of genetic counseling. It also exposes how genetic counselors have become involved in genetic enterprises beyond standard clinical settings, and prods at key issues in the interaction between genetic science and social values.     

“My Life Purpose Is…”: Assessment of Youth Purpose in Context

In the introduction to this special issue on youth purpose, the authors discuss the challenges in assessing purpose in adolescents; purpose is a concept that has more often been studied in adults but not in youth. First, theauthors discuss how purpose has been defined in the literature. The authors then situate purpose in the context of a host of related constructs, such as intentional self-regulation, future orientation, goal setting, and identity. Additionally, the authors discuss the importance of accurately measuring youth purpose, as well as in what contexts the assessment of purpose is useful, such as for positive youth development researchers, as well as practitioners and evaluators of youth development programs.     

Disclosing Huntington’s Genetic Testing Results in the Context of Intellectual Disability and Guardianship: Using the Family Illness Narrative to Guide the Flow of Information

A diagnosis of Huntington’s disease has broad social, vocational, reproductive and psychological implications. The ability to accurately diagnose the illness via genetic testing is not new. However, given a persistent lack of robustly effective interventions, it remains an area of ethical concern. The difficulty is compounded in cases of intellectual disability. This paper presents a case of genetic testing for Huntington’s disease conducted on a patient with intellectual disability with guardian consent, but without the patient’s direct knowledge and how the family illness narrative and psychiatric care were employed in the eventual disclosure of the patient’s diagnosis and subsequent management.     

Genetic Counseling in the Era of Genomics: What’s all the Fuss about?

As genomic sequencing becomes more widely available in clinical settings for diagnostic purposes, a number of genetic counseling issues are gaining precedence. The ability to manage these issues will be paramount as genetic and non-genetic healthcare professionals navigate the complexities of using genomic technologies to facilitate diagnosis and inform patient management. Counseling issues arising when counseling for diagnostic genomic sequencing were identified by four genetic counselors with 10 years of collective experience providing genetic counseling in this setting. These issues were discussed and refined at a meeting of genetic counselors working in clinical genomics settings in Melbourne, Australia. Emerging counseling issues, or variations of established counseling issues, were identified from the issues raised. Illustrative cases were selected where pre- and post-test genetic counseling was provided in clinical settings to individuals who received singleton or trio WES with targeted analysis. Counseling issues discussed in this paper include a reappraisal of how genetic counselors manage hope in the genomic era, informed consent for secondary use of genomic data, clinical reanalysis of genomic data, unexpected or unsolicited secondary findings, and trio sequencing. The authors seek to contribute to the evolving understanding of genetic counseling for diagnostic genomic sequencing through considering the applicability of existing genetic counseling competencies to managing emerging counseling issues and discussing genetic counseling practice implications.     

What Factors Influence the Decision to Share Suicidal Thoughts? A Multilevel Social Network Analysis of Disclosure Among Individuals with Serious Mental Illness

Nondisclosure of suicidal thoughts limits suicide risk management. Consistent with disclosure models for other stigmatized statuses, understanding suicidal disclosure requires accounting for features of the discloser (individual factors) and the discloser–recipient relationship (relational factors). In a sample of 30 adults with schizophrenia, bipolar disorder, or major depressive disorder (Level 2) who nominated 436 social network members (Level 1), we examined disclosure patterns and identified individual and relational correlates of disclosure intent. Most individuals disclosed in the past (77%; n = 23) and all intended on disclosing (100%; n = 30). Disclosure was highly selective, with 14% (n = 62) of network members identified as prior confidants and 23% (n = 99) identified as intended confidants. Multilevel modeling indicated that relational factors were more central to disclosure than individual factors. Network members who were prior confidants and who provided social support were attractive targets for intended disclosure. Our findings suggest that “targeted” gatekeeper training may be a promising strategy and reveal relational characteristics to identify “high‐probability confidants.”     

Women’s Understanding and Attitudes towards Down Syndrome and Other Genetic Conditions in the Context of Prenatal Screening

In order to explore the impact of potential new technologies in the area of prenatal screening, we conducted a baseline study using qualitative interviews to explore women’s attitudes and knowledge regarding current and future prenatal screening technology and methods. Three cohorts were interviewed, including healthy women without children, healthy women with healthy children, and healthy women with children who have de novo genetic disorders. This study aimed to assess the baseline understanding and attitudes of women in Western Australia. Women from each cohort demonstrated adequate knowledge of the differences between screening and diagnostic tests, but were mostly unaware of the conditions for which screening is currently available except Down syndrome. Women who had children with de novo genetic conditions were generally aware of more genetic conditions than women with or without healthy children. Most women recognised the genetic basis for the conditions mentioned. Two thirds of women understood that Down syndrome is a chromosomal condition; just one third recognised that the phenotype is variable. Most women expressed a positive attitude towards Down syndrome. Social acceptance of children with Down syndrome was commonly mentioned as a concern. While the majority of women with children supported screening for Down syndrome, they emphasised that it must be an autonomous choice. General knowledge of genetic conditions illustrated that women are exposed to diverse conditions from lived experience as well as the media.     

Mothers’ Perspectives on Their Child’s Mental Illness as Compared to Other Complex Disorders in Their Family: Insights to Inform Genetic Counseling Practice

To facilitate the development of a therapeutic alliance in genetic counseling, it is important that the counselor understands how families might perceive the condition that constitutes the reason for the referral. Through training and professional practice, genetic counselors develop a thorough understanding of families' perceptions of the conditions that are common indications for genetic counseling. But, for referral indications that are less frequent, like serious mental illnesses, genetic counselors may feel less confident in their understanding of the family's experience, or in their ability to provide psychosocial support when serious mental illness is reported in a family history. This may impede the establishment of a therapeutic alliance. As research shows that most referrals for genetic counseling related to serious mental illness are for female first-degree family members of affected individuals, we sought to explore how this group perceives serious mental illness. To provide a frame of reference with which genetic counselors may be more familiar, we explored how women perceived serious mental illness compared to other common complex disorders in their family. We conducted semi-structured interviews with women who had a child with a serious mental illness (schizophrenia, schizoaffective disorder, bipolar disorder) and a first-degree relative with another common complex disorder (diabetes, heart disease, cancer). Interviews were transcribed and subjected to thematic analysis. Saturation was reached when nine women had participated. Serious mental illness was perceived as being more severe and as having a greater impact on the family than diabetes, heart disease, or cancer. Themes identified included guilt, stigma, and loss. Some of the most important issues that contribute to mothers' perceptions that serious mental illness is more severe than other common complex disorders could be effectively addressed in genetic counseling. Developing a heightened awareness of how family members experience a relative's mental illness may help genetic counselors to be better able to provide psychosocial support to this group, whether serious mental illness constitutes the primary reason for referral or appears in the family history during counseling for a different referral reason.     

Why is Everyone So Anxious?: An Exploration of Stress and Anxiety in Genetic Counseling Graduate Students

Stress is an inevitable part of daily life. Studies of graduate student stress exist, but none include genetic counseling students. The present mixed-methods study investigated 225 genetic counseling students’ stress and anxiety levels using the State-Trait Anxiety Inventory (STAI; Spielberger et al. 1983), frequency and intensity of stressors associated with their graduate experience, positive and challenging aspects of their experience, and their stress management advice for prospective students. Principal axis factor analysis yielded five conceptual factors underlying the stressors: Professional Uncertainty, Personal Life Events, Interpersonal Demands, Academic Demands, and Isolating Circumstances. Exploratory model fitting using regression yielded four significant predictors accounting for 19% of the variance in state anxiety: (1) trait anxiety, (2) the Interpersonal Demands factor, (3) the Isolating Circumstances factor, and (4) the interaction between the Professional Uncertainty factor and advanced student status. Content analysis of open-ended responses identified several themes. For instance, most students enjoyed what they were learning, interactions with colleagues, and affirmation of their career choice, while certain academic and professional challenges were particularly stressful (e.g., workload, time constraints, clinical rotations). Additional findings, program implications, and research recommendations are provided.     

Loss of Discriminative “Power” of the MMPI with Older Psychiatric Patients

MMPIs were obtained from four groups of 20 hospitalized male patients which differed in age (18–28 years vs 45–59 years) and psychiatric diagnosis (schizophrenic vs nonschizophrenic). The MMPI discriminated between young schizophrenic and nonschizophrenic patients but did not discriminate between older schizophrenic and nonschizophrenic patients. The apparent loss of discriminative “power” of the MMPI with older patients was interpreted as supporting the importance of the often overlooked nonpathological characteristics of the psychological test subject.