Report from the National Society of Genetic Counselors Service Delivery Model Task Force: A Proposal to Define Models, Components, and Modes of Referral

The Service Delivery Model Task Force (SDMTF) was appointed in 2009 by the leadership of the National Society of Genetic Counselors (NSGC) with a charge to research and assess the capacity of all existing service delivery models to improve access to genetic counseling services in the context of increasing demand for genetic testing and counseling. In approaching this charge, the SDMTF found that there were varying interpretations of what was meant by "service delivery models" and the group held extensive discussions about current practices to arrive at consensus of proposed definitions for current genetic service delivery models, modes of referral and components of service delivery. The major goal of these proposed definitions is to allow for conversations to begin to address the charge to the committee. We propose that current models of service delivery can be defined by: 1) the methods in which genetic counseling services are delivered (In-person, Telephone, Group and Telegenetics), 2) the way they are accessed by patients (Traditional referral, Tandem, Triage, Rescue and Self-referral) and 3) the variable components that depend upon multiple factors unique to each service setting. This report by the SDMTF provides a starting point whereby standardized terminology can be used in future studies that assess the effectiveness of these described models to overcome barriers to access to genetic counseling services.     

What Predicts the Use of Genetic Counseling Services After the Birth of a Child with Down Syndrome?

In the state of Victoria, Australia, a government funded genetic counseling service exists to meet the needs of families. An audit showed that many families do not use this service after the birth of a child with a genetic problem. To investigate this we surveyed families of children born with Down syndrome over 2 years in Victoria. Questionnaires were completed by 74 mothers, of whom only 18 had received genetic counseling between the birth and the time of the study (mean 3.5 years). Of those not receiving genetic counseling, 71% said they were not offered or had not heard of it. Mothers who had genetic counseling were younger than those who had not, and were more likely to have attended University. Those who had genetic counseling indicated less satisfaction with care at the diagnosis and were more likely to perceive their child as unwell at birth than those who were aware of genetic counseling but did not have it. Of those who did not have genetic counseling, over half were unclear about what it is, although 74% agreed with the statement genetic counseling is most useful when planning to have another child. Of those who had heard of genetic counseling, 73% said they were not sure how it could help. Many families with children with Down syndrome are not aware of the existence or functions of genetic counseling. With greater awareness, some may still choose not to have genetic counseling, but others enunciated needs that could be met by this service if it were offered to them.     

Standards for the Reporting of Genetic Counseling Interventions in Research and Other Studies (GCIRS): an NSGC Task Force Report

As the demand for evidence to support the value of genetic counseling increases, it is critical that reporting of genetic counseling interventions in research and other types of studies (e.g. process improvement or service evaluation studies) adopt greater rigor. As in other areas of healthcare, the appraisal, synthesis, and translation of research findings into genetic counseling practice are likely to be improved if clear specifications of genetic counseling interventions are reported when studies involving genetic counseling are published. To help improve reporting practices, the National Society of Genetic Counselors (NSGC) convened a task force in 2015 to develop consensus standards for the reporting of genetic counseling interventions. Following review by the NSGC Board of Directors, the NSGC Practice Guidelines Committee and the editorial board of the Journal of Genetic Counseling, 23 items across 8 domains were proposed as standards for the reporting of genetic counseling interventions in the published literature (GCIRS: Genetic Counseling Intervention Reporting Standards). The authors recommend adoption of these standards by authors and journals when reporting studies involving genetic counseling interventions.     

An Assessment of Genetic Counseling Services for Individuals with Multiple Sclerosis

Multiple sclerosis (MS) affects up to 1/500 Canadians. The University of British Columbia MS Clinic (UBC Clinic) is the only MS clinic in Canada (and likely internationally) that routinely offers genetic counseling to patients and their families. A typical session includes the collection of family history and demographic data, discussion of the inheritance of MS, interpretation of family-specific recurrence risks and psychosocial counseling. The aims of this study were to explore patients’: 1) expectations of the genetic counseling session; 2) understanding of the etiology of MS (both pre and post-session); and 3) post-session perceptions of genetic counseling. A two-part questionnaire to assess genetic counseling services was distributed before and after sessions to all consenting patients seen during the period October 1, 2008 to February 28, 2009 inclusive. Sixty-two completed questionnaires were analysed. Genetic counseling was found to significantly increase the number of individuals who were able to correctly identify the etiology of MS (p?<?0.001). Patient satisfaction with genetic counseling was high, with an average satisfaction score of 32.4/35 (92.6 %). Of those who provided comments (n?=?42/60) regarding the usefulness of the genetic counseling session, 95.2 % reported it useful (n?=?40/42). Findings suggest that genetic counseling is effective in increasing patients’ knowledge of the etiology of MS and is viewed by patients as a useful service. Based on the high level of positive feedback regarding genetic counseling by the study sample, this study suggests that the services provided by genetic counselors may be beneficial for patients with MS seen in other centers.     

Patterns of runaway behavior within a larger systems context: the road to empowerment

Runaway behavior is a common problem in residential treatment settings for youth. This paper looked at Orten and Soll's runaway typology and Homer's conceptualization of runaways as "running from" or "running to" something and expanded the context to include interactions with family and professionals. A case study and a survey of nine adolescent runaways from a residential setting were used to explore several hypotheses. A discussion of the results and practical applications illustrated ways to empower therapists and other professionals to deal with runaways more effectively.     

Genetic Counseling for Personal Genomic Testing: Optimizing Client Uptake of Post-Test Telephonic Counseling Services

The field of genetic counseling faces a broad challenge: many potential clients may not be aware of the value and benefit of genetic counseling services, and therefore may not utilize those services. Navigenics is a personal genomic testing company that provides telephonic genetic counseling services for multifactorial diseases and pharmacogenetics. When first offered in 2008, utilization of the Navigenics genetic counseling service was less than expected. To explore the basis for under-utilization and potential mechanisms for increasing uptake, Navigenics initiated a quality improvement study, in which three different methods of engaging clients in the uptake of genetic counseling services were assessed over the course of 1 year. Outcomes showed significant differences in uptake rates between methodologies (7.5%, 24.6%, and 60.1%), yielding an 8-fold increase in service utilization when post-test telephonic outreach to all clients was performed. Further, utilization spanned all risk levels based on client results, evidence that not only clients with high-risk results were motivated to engage in the genetic counseling service. This research indicates that implementing strategies to educate clients about genetic counseling can positively impact client engagement and utilization of available services.     

The case for guidance: testimony before Congress

The author, as a member of APGA's Federal Relations Committee, recently presented testimony on counseling and, guidance services before the U.S. House of Representatives' Subcommittee on Labor, Health, Education and Welfare and Related Agencies. This testimony, on behalf of APGA and ASCA, concerned fiscal year 1973 appropriations for the Elementary and Secondary Education Act, Title III (ESEA, III)—Counseling, Guidance and Testing. This article is drawn from the author's testimony and is directed toward reporting some of the positive outcomes of counseling and guidance, the dilemma of cutbacks in services, and the need for substantial expansion of fiscal and. personal support for counseling and guidance.     

Evaluating Genetic Counseling: Client Expectations,Psychological Adjustment and Satisfaction with Service

Periodic evaluations of genetic counseling services are useful for determining the effectiveness of counseling in meetings its psycho-educational aims, as well as identifying where improvements to the service may be made. This study aimed to evaluate the genetic counseling services provided by Genetic Services of Western Australia (GSWA) to determine the impact of counseling on client expectations, satisfaction with the service, and psychological adjustment, defined as wellbeing and perceived personal control (PPC). A total of 122 clients participated in a self-administered survey conducted pre- and post-counseling. Client expectations of the service as a means of providing information were met, and opportunities for counselors to meet client’s expectations of psychological support were identified. Furthermore, counseling was found to maintain and enhance psychological wellbeing of clients. The role of counseling in facilitating the development of PPC was a key contributor to a high sense of satisfaction in clients.     

Psychological counseling as an adjunct to stuttering treatment: Clients’ experiences and perceptions

PurposeStuttering can trigger anxiety and other psychological and emotional reactions, and limit participation in society. It is possible that psychological counseling could enhance stuttering treatment outcomes; however, little is known about how clients view such counseling. The purpose of this study was to gain an understanding of clients’ experiences with, and perceptions of, a psychological counseling service that was offered as an optional adjunct to speech therapy for stuttering.MethodNine individuals who stutter (13-38 years old) participated in semi-structured interviews. Six participants had taken part in psychological counseling; three participants did not do so. Interview data were analyzed using grounded theory as a guiding framework.ResultsFour thematic clusters emerged from participants’ accounts: insights into personal decision-making, why others may not participate in counseling, psychological counseling as a worthwhile part of therapy, and counseling as a necessary component in a stuttering treatment program.ConclusionIn addition to experiencing barriers and facilitators to help-seeking that are reported in related fields, participants accounts also revealed novel facilitators (i.e., a ‘why not’ mentality and the importance of having a pre-existing relationship with the clinician who offered the service) and barriers (i.e., viewing the service as a ‘limited resource,’ and, the overwhelming nature of intensive stuttering treatment programs). Findings suggest that clients value the option to access psychological counseling with trained mental health professionals to support the stuttering treatment provided by speech-language pathologists. Participants made recommendations for the integration of psychological counseling into stuttering treatment programs.     

The Doctor(s) in House: An Analysis of the Evolution of the Television Doctor-Hero

The medical drama and its central character, the doctor-hero have been a mainstay of popular television. House M.D. offers a new (and problematic) iteration of the doctor-hero. House eschews the generic conventions of the "television doctor" by being neither the idealized television doctor of the past, nor the more recent competent but often fallible physicians in entertainment texts. Instead, his character is a fragmented text which privileges the biomedical over the personal or emotional with the ultimate goal of scientifically uncovering and resolving instances of disease. This article examines the implicit and explicit messages in House M.D. and critically analyzes both the show and its lead character in relation to the traditional medical drama genre that highlights the "doctor-hero" as the central character. While at first House seems to completely violate narrative and generic norms, ultimately the program provides a new form that reinforces the presence of the doctor-hero, but highlights House's character as the central figure who is personally and interpersonally problematic but biomedically effective.     

The destructive potential of psychological counseling for pastor and parish

Two styles of psychological counseling are reviewed both in terms of pastor-parishioner dynamics and in terms of the pastor's relationship with his own family.The author wishes to thank Bishop David Richards, Executive Director of the Office of Pastoral Development, House of Bishops of the Episcopal Church, for his helpful critique of an earlier draft of this article.     

The White House Conference: tips or taps for counselors?

Counselors cannot continue to drift complacently in the shallows of their traditional roles. Whatever their work setting, they must heed the symbolic cries of their clients who feel alienated from family, school, work, institutions, and even from themselves, and find solace in meaningless or destructive outlets. If the counseling profession has a future, it will be concerned with humanizing environments where children, youth, and adults live, learn, work, and play; serving as advocates for all persons of all ages; and responding positively to the complexities of living which confront everyone. These priorities, highlighted by the 1970 White House Conference on Children, seem to have implications for the survival of all counseling.     

What Young People Want: A Qualitative Study of Adolescents’ Priorities for Engagement Across Psychological Services

This article examined commonalities in adolescents’ priorities for engagement with psychological support in the context of contemporary youth culture in New Zealand. These were explored across a range of different services including a face-to-face hospital-based mental health service, a face-to-face school-based counseling service, a telephone counseling service and a new form of counseling using mobile phone text. Interviews were conducted with 63 young people aged 13–18 who had used at least one of these services. A thematic analysis identified that there were common priorities for participants across the different services including their need to keep control; not to have their parents involved; to have a relationship with a counselor which was more like a friendship than a professional relationship; to talk freely and be listened to; and to have the service be accessible and flexible enough to fit around their lives. Text and telephone counseling were seen to be particularly appropriate for meeting some of these needs. Professionals working with young people should consider offering a suite of options for psychological support, allowing young people to balance their different needs and priorities and thus facilitate their engagement.     

Consideration of Genetic Counseling as a Career: Implications for Diversifying the Genetic Counseling Field

Under-representation of racial/ethnic minority counselors has been an ongoing issue in the genetic counseling field. A better understanding of genetic counseling awareness and career consideration may help to increase the number of applicants to genetic counseling training programs from racial/ethnic minorities. This study sampled high school and college students (n = 233) to examine their awareness and perceptions of genetic counseling. Ethnicity, gender, parental level of education, and interest in biology were significant predictors of a subjects genetic counseling awareness; previous awareness of genetic counseling, interest in psychology, and level of education were significant predictors of whether a subject would consider genetic counseling as a career. The findings suggest that knowledge of genetic counseling is lower among racial/ethnic minorities, but that racial/ethnic minorities are just as likely to consider genetic counseling as a career. Awareness of genetic counseling prior to university education may increase racial/ethnic minority representation among potential applicants to genetic counseling training programs.     

Telephone counseling and crisis intervention: A review

The empirical research pertaining to the effectiveness of telephone counseling and referral systems personnel was critically reviewed. The assessment was organized according to several evaluation strategies that researchers have utilized to evaluate effectiveness. These strategies included, for example, client self-reports, client "shows" versus "no-shows" following referral, data pertaining to suicide rates, counselor ratings of personal effectiveness, and phone workers' ability to offer empathy to clients. It was concluded that discussions of effectiveness should be constrained by a careful consideration of the specific index of efficacy chosen by investigators as well as methodological issues associated with current research in this area. There is reason to believe that the availability of telephone crisis services may be related to reduced suicide rates among young white females. Also, there is a significant need to empirically associate counseling technique and indices of effectiveness with substantive measures of client outcome in future research. Additional topics reviewed include the probable differential effectiveness of lay workers with various presenting problems of clients, and the role that training and maturity seem to play in successful interventions. Guidelines for the use of evaluation techniques which coincide with service goals are also offered.     

Effects of a Genetic Counseling Model on Mothers of Children with Down Syndrome: A Brazilian Pilot Study

Down syndrome occurs in approximately 1:600 live births. Genetic counseling is indicated for these families and may be beneficial for adaptation to the challenges that accompany by this diagnosis. Although the basic counseling goals are similar, there are many models of genetic counseling practiced around the world. The aim of this article is to report the results of a pilot study that evaluated the level of satisfaction with a model of service delivery of genetic counseling practiced in Brazil, the knowledge assimilated about Down syndrome and whether this process resulted in a feeling of well-being and psychological support. Thirty mothers of under 6-month-old children with Down syndrome were interviewed after having two sessions of genetic counseling in a public healthcare service within a period of 30 days. A semi-structured questionnaire was developed by the researchers to collect identification, socioeconomic and demographic data and to assess the client’s satisfaction with the model of genetic counseling. Data were collected using both open and closed questions. The reported level of satisfaction was high. The knowledge assimilated about Down syndrome after only two sessions was considered technically vague by raters in 44 % of cases. Most mothers (96.7 %) reported that genetic counseling was beneficial and provided psychological support. The model was considered satisfactory, but further research is needed to identify ways to improve knowledge retention by this population. These results highlight the utility of referring families for genetic counseling when there is a suspicion of a diagnosis of Down syndrome.     

Developmental Counseling in the Elementary School

Some of the fundamentals basic to a theory and practice of developmental counseling with the elementary school child are set forth. Pertinent child development research is cited that implies the need for developmental counseling with normal children. The value of this counseling in the elementary school setting is in facilitating the total learning process. Unique factors of this counseling, including short-term service, focus on developmental problems, and the establishment of goals, are described. Principles for working with children in the counseling process are discussed.     

网络心理咨询的疗效与展望

心理学家预测,通过互联网开展的心理咨询,在未来的10年里将成为第二大快速增长的服务领域。该文综述了近期国外有关网络心理咨询的概念和种类,有关网络心理咨询疗效的实证研究以及确保网络心理咨询疗效所采取的措施等。在此基础上作者指出网络心理咨询研究中存在的问题,相信随着这些问题的改进,网络心理咨询必将迈向规范、标准和科学的轨道     

远程心理健康服务：应用、优势及挑战

远程心理服务(Telepsychology)是利用远程通讯技术提供心理服务的新兴心理服务方式,虽然在COVID-19疫情期间得到了广泛应用,但仍缺乏相关行业应用规范及专业培训体系。现有的远程心理服务三维模型以应用环境、应用领域、应用方式为服务框架,结合九个应用领域开展远程心理服务。我们根据已有研究提出了以咨询师、治疗方法、远程技术手段为主要因素、以来访者为中心的远程心理服务应用模型。人工智能在远程心理服务领域的应用主要包括三个方面:机器学习与人工神经网络、自然语言处理与情感分析、虚拟现实与增强现实。目前,远程心理服务正以蓬勃的态势极速发展:其在提高心理服务督导效率、减少服务成本等方面有着显著优势,同时在心理服务从业人员对远程心理服务的接受度、来访者的适应性、重视程度方面也面临着挑战。未来远程心理服务可以在监管体系、从业者培训、远程应用技术三个方面进行深入探索。