The Client's Perspective of Genetic Counseling—A Grounded Theory Study

Previous studies of genetic counseling have mainly focused on outcomes defined by researchers or service providers, and have frequently related to changes in reproductive behavior and/or client knowledge. A longitudinal study of 43 families referred to a clinical genetic service was undertaken to ascertain client needs and expectations of the service, and to identify relevant outcomes from the clients' perspective. Semistructured interviews were conducted with each client, prior to and after genetic counseling. The transcribed interviews were analyzed using grounded theory. The need for certainty emerged as a powerful factor that motivated clients to pursue the genetic referral. The client's lay knowledge of the condition, satisfaction of the need for certainty, and the formation of a personalized relationship between the client and the genetics staff significantly influenced the central outcome, identified as a change in the client's psychological adaptation to the genetic condition in the family.     

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.     

Response to A Different Vantage Point Commentary: Psychotherapeutic Genetic Counseling,Is it?

Whether genetic counseling is a form of psychotherapy is open for debate. Early practicioners in genetic counseling described it as such, and this claim has been replicated in recent publications. This commentary is a rebuttal to the claim that genetic counseling is distinct from psychotherapty. We argue that it is a a form of psychoterapy that aims to help clients manage a health threat that affects their psychological wellbeing, paralleling the goals of psychotherapy.     

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.     

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.     

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.     

Assessment of HIV counselling and social care services in a London hospital

The use of, and satisfaction with, counselling and social care services was investigated among HIV-infected clients attending HIV specialist climes at Guy's Hospital and Southwark Social Services, London. A survey of 71 clients with HIV infection was carried out using a self-administered questionnaire. The greatest demand was for advice about income support, housing, counselling for the HIV test, counselling for depression or anxiety, psychological support for coping with HIV, help with sleeping problems, mobility allowance, and help with furniture/household appliances. Overall, 57% thought the service was good or excellent; 66% of respondents thought they would use the services in the future. Over nine in ten clients had used the psychosocial support services at some stage since their HIV diagnosis, although only two-thirds anticipated that they would have need of these services in the future. The psychosocial support service will need to remain responsive to the shift in demand for this service, as well as the changing needs of clients who use it.     

Clients’ Perception of Outcome of Team-Based Prenatal and Reproductive Genetic Counseling in Serbian Service Using the Perceived Personal Control (PPC) Questionnaire

This is the first study in Serbia and the region of South-East Europe dedicated to clients’ perception of outcome and efficiency of prenatal and reproductive genetic counseling. The primary aim of this study was to assess overall value and success of genetic counseling in prenatal and reproductive care with regard to perceived personal control of clients, reflecting also in a part patient comprehension, knowledge retention, and empowerment in decision-making. The standardized Perceived Personal Control questionnaire (PPC) was used for the assessment of 239 female participants. First, we performed a complete validation of the psychometric characteristics of the Serbian-language version of the PPC questionnaire. The validation of the questionnaire permits other researchers from Serbian-speaking regions of South-East Europe to use this standard instrument to assess the effectiveness of prenatal genetic counseling in their communities and analyze advantages and disadvantages of their counseling models. We also measured social and demographic characteristics of participants. Further, we analyzed effects of our team-based prenatal and reproductive genetic counseling model through (a) calculation of PPC scores at three different stages (before initial, after initial, and before second counseling session), and (b) by assessing participants’ responses by indication for referral (advanced maternal age, abnormal biochemical screening, family history of hereditary disorders, maternal exposure to drugs, exposure to radiation, exposure to infective agents, infertility or recurrent abortions, and miscellaneous). The results indicate that participants’ knowledge after initial counseling increased significantly and after that remained stable and sustainable. A satisfactory level of confidence among participants had been achieved, in that many felt an increased sense of control over their situation and emotional response to it. Indirectly, these results indicate the success of a team-based prenatal genetic counseling model, which has not been assessed in the literature to date.     

Does Receiving Genetic Counseling Impact Genetic Counselor Practice?

This study was an investigation of whether genetic counselors have received genetic counseling and if so, how they believe it affects their practice. One thousand genetic counselors were mailed surveys about the nature of genetic counseling services received, impact on their clinical practice, frequency and reasons for disclosing about their receipt of counseling to their clients, and demographics. Ninety-three of the 510 respondents reported receiving genetic counseling. Of these, almost three-fourths were practicing genetic counselors while receiving services. Reasons for services include prenatal concerns, family history of cancer, and history/risk of other genetic conditions. Frequently endorsed effects on practice include increased empathy and understanding of client decisions, feeling more connected with clients, greater emphasis on psychosocial support, and sympathy. Forty-six respondents disclosed to clients about their receipt of genetic counseling. Prevalent reasons include client asked, help clients feel they are not alone, demonstrate counselor understanding, decrease client anxiety, build rapport, and normalize client feelings. Practice and research recommendations are given.     

A Systematic Review of Randomized Controlled Trials to Assess Outcomes of Genetic Counseling

With the advancements in precision medicine and health care reform, it is critical that genetic counseling practice respond to emerging evidence to maximize client benefit. The objective of this review was to synthesize evidence on outcomes from randomized controlled trials (RCTs) of genetic counseling to inform clinical practice. Seven databases were searched in conducting this review. Studies were selected for inclusion if they were: (a) RCTs published from 1990 to 2015, and (b) assessed a direct outcome of genetic counseling. Extracted data included study population, aims, and outcomes. Risk of bias was evaluated using the Cochrane Handbook for Systematic Reviews of Interventions guidelines. A review of 1654 abstracts identified 58 publications of 54 unique RCTs that met inclusion criteria, the vast majority of which were conducted in cancer genetic counseling setting. Twenty-seven publications assessed ‘enhancements’ to genetic counseling, and 31 publications compared delivery modes. The methodological rigor varied considerably, highlighting the need for attention to quality criteria in RCT design. While most studies assessed several client outcomes hypothesized to be affected by genetic counseling (e.g., psychological wellbeing, knowledge, perceived risk, patient satisfaction), disparate validated and reliable scales and other assessments were often used to evaluate the same outcome(s). This limits opportunity to compare findings across studies. While RCTs of genetic counseling demonstrate enhanced client outcomes in a number of studies and pave the way to evidence-based practice, the heterogeneity of the research questions suggest an important need for more complementary studies with consistent outcome assessments.     

Met expectations and the wellbeing of diaspora immigrants: A longitudinal study

Previous research has pointed to the importance of expectations for the adaptation of immigrants. However, most studies have been methodologically retrospective with only limited possibilities to show the optimal relationship between migrants’ expectations and actual acculturation experiences for their wellbeing and other aspects of psychological adaptation. Moreover, previous research has been conducted mostly among sojourners and students. This longitudinal study focused on the relationship between premigration expectations and postmigration experiences of diaspora immigrants from Russia to Finland (N = 153). We examined how the fulfillment of premigration expectations in social (i.e., family relations, friendships, and free time) and economic (i.e., occupational position, working conditions, and economic and career situation) domains affects immigrants’ wellbeing (i.e., satisfaction with life and general mood) after migration. Three alternative models of expectation confirmation (i.e., disconfirmation model, ideal point model, and the importance of experiences only) derived from previous organizational psychological research were tested with polynomial regression and response surface analysis. In the economic domain, immigrants’ expectations, experiences, and their interrelationship did not affect wellbeing in the postmigration stage. However, in the social domain, the more expectations were exceeded by actual experiences, the better were life satisfaction and the general mood of immigrants. The results underline the importance of social relationships and the context‐dependent nature of immigrants’ wellbeing. Interventions in the preacculturation stage should create positive but realistic expectations for diaspora immigrants and other groups of voluntary (re)migrants. Furthermore, policies concerning the postmigration stage should facilitate the fulfillment of these expectations and support the social adaptation of immigrants.     

Psychological Distress with Direct-to-Consumer Genetic Testing: A Case Report of an Unexpected <Emphasis Type="Italic">BRCA</Emphasis> Positive Test Result

We report a case of a client who discovered she had a BRCA mutation following direct-to-consumer (DTC) genetic testing in the absence of genetic counseling. After testing she presented for genetic counseling with anxiety, distress, and a deficit of knowledge about what the DTC genetic testing revealed. Genetic counseling helped alleviate distress while empowering the client to apply the results of testing to improve medical management. Despite recent studies demonstrating no negative psychological impact of DTC genetic testing on the consumer, this case illustrates that significant psychological distress and confusion can occur as a result of DTC genetic testing for highly penetrant single gene disorders. Pre- and post-test genetic counseling in conjunction with DTC genetic testing may alleviate consumers’ distress and empower clients to proactively utilize their result information.     

Aspirations and wellbeing in Romanian and US undergraduates

Updating cross-cultural research of the past decade on the relationship between life aspirations and wellbeing, we compared Romanian (N=69) and US (N=64) undergraduates on the contribution of the importance and likelihood of attaining intrinsic and extrinsic aspirations to psychological maladjustment and life satisfaction, and on the qualitative meaning they assign to financial success. Similarly to prior studies, we found that extrinsic and intrinsic aspirations tended to be either negatively or positively correlated with life satisfaction, respectively; however, wealth predicted life satisfaction for Romanian students. Unlike previous research, we found generally negative relationships between intrinsic aspirations and psychological maladjustment. Although there were no differences between Romanian and US undergraduates on extrinsic and intrinsic orientation, on the overall importance of attaining aspirations, or on specific extrinsic and intrinsic aspirations, Romanian students expressed weaker expectations of fulfilling intrinsic aspirations than did US students. Finally, the groups produced similar rankings of aspirations and assigned similar meaning to financial success. The results favored a social cognitive rather than a self-determination model of psychological wellbeing in that expectations for attaining aspirations were more often predictive of life satisfaction than were their content. We interpret these findings and their convergence and departure from earlier research in terms of political economic, demographic, and cultural factors. We encourage future cross-cultural investigations of the social construction of aspirations, subsidiation of seemingly contradictory aspirations to each other, and cognitive and ecological mediation of the complex relationship of aspirations to psychological functioning.     

Risk Perception,Worry and Satisfaction Related to Genetic Counseling for Hereditary Cancer

In this multi center study, genetic counseling for hereditary cancer was evaluated by assessing patients’ worry, perceived risk of developing cancer and satisfaction with genetic counseling. An overall aim was to identify characteristics of vulnerable patients in order to customize genetic counseling. In addition, agreement between patients’ and counselors’ scores was measured. A total of 275 Norwegian patients were consecutively recruited, and 213 completed questionnaires before and after genetic counseling. Patients’ perceived risk decreased after the genetic counseling session. There was incongruence between risk perception expressed as a percentage and in words. Patients were significantly less worried after counseling. Higher levels of worry were predicted by low instrumental satisfaction with counseling, high degree of perceived risk of developing cancer and younger age. In conclusion, counselors met the patients’ psychological needs to a satisfactory degree during counseling. However, patients did not fully understand their risk of developing cancer.     

Adolescents' perceptions of outpatient mental health services

Thirty-three adolescents from three mental health service settings were interviewed regarding their perceptions of the purpose, goals, expectations, frustrations and benefits of mental health experiences. They provided satisfaction ratings and importance rankings of seven domains of satisfaction: (a) Convenient/Accessible, (b) Meeting Needs, (c) Staff Competence, (d) Personal Relationship with Staff, (e) Effectiveness of Treatment, (f) Comfort/Appropriateness of Center, and (g) Costs and Paperwork. In addition, participants completed the Client Satisfaction Questionnaire (CSQ-8). Results indicated that, in general, the adolescents were very satisfied with the services they received. Gender, race/ethnicity and treatment site were not related to satisfaction scores, nor was the adolescent's perceived choice in seeking services. Some significant gender differences were found both in terms of the rankings of satisfaction domains, as well as in the adolescents' perceptions of their reasons for initiating counseling and the perceived goals and benefits of counseling. Additional differences in perceptions of services were found for treatment site and race/ethnicity. In general, adolescents were able to generate informative, sophisticated responses to questions regarding their perceptions of mental health services, and demonstrated that they are capable of evaluating services they receive.     

Persuasibility and the power of belief

Recent empirical and theoretical developments suggest that clients who genuinely believe in the effectiveness of counseling are likely to improve regardless of the validity of the counselor's approach. This improvement is based on a “psychological placebo effect” that arouses client expectations for improvement and provides clients with additional security and self-confidence to deal with life more effectively. These considerations are discussed in the context of placebo reactivity, client susceptibility to persuasion, and counselor expectations for client improvement.     

Genetic Counseling in Southern Iran: Consanguinity and Reason for Referral

Population based genetic counseling that promotes public health goals is an appropriate health care service. The genetic counseling center in Shiraz, southern Iran serves most of the clients in the region. During a 4-year period, 2,686 couples presented for genetic counseling. Data files revealed that 85% had consanguineous relationships (1.5% double first cousin, 74% first cousin, 8% second cousin, 1.5% beyond second cousin). Most prevalent reasons for referral were premarital counseling (80%), with 89% consanguinity, followed by preconception (12%), postnatal (7%), and prenatal counseling (1%). The most common abnormalities in probands or relatives were intellectual and developmental disabilities, hearing loss/impairment, and neuromuscular dystrophies. Family history of medical problem(s) and/or consanguinity was the main indication for referral in nearly every family. Premarital consanguinity poses unique challenges and opportunities. There is considerable opportunity for genetic counseling and education for couples in this population. The tradition of consanguinity, which is likely to persist in Iran, requires multidisciplinary agreement regarding the appropriate process of genetic counseling. Effective genetic counseling in Iran hinges on inclusion of data from genetic counseling services in national genomic and epidemiologic research programs.     

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.     

Linking Situational Constraints to Customer Satisfaction in a Service Environment

Cet article examine les rapports entre la satisfaction de la clientèle et les contraintes relevant des situations techniques et sociales. A cette fin, une enquête de terrain fut réalisée auprès d'un échantillon de 57 managers et 835 clients d'organisations de service. On a recensé les contraintes sociales et techniques vécues par les managers. La satisfaction des clients a également été mesurée avec plusieurs aspects des services. En général, l'absence de situation contraignante dans les organisations de service était en relation positive avec la satisfaction de la clientèle. Les résultats montrent aussi que la seule contribution des contraintes techniques à la satisfaction des clients était supérieure à celle des contraintes sociales. Nous signalons des implications managériales et des orientations pour les futures recherches portant sur les relations entre les contraintes et la satisfaction des clients.
This paper aims to test the links of social and technical situational constraints to customer satisfaction with services. To this end, a field survey study was conducted using a sample of 57 managers and 835 customers of service organisations. We studied social and technical constraints perceived by managers. Customer satisfaction with several service attributes was also measured. In general, a lack of situational constraints in service organisations was positively associated with customer satisfaction. The results also showed that the unique contribution of technical constraints to customer satisfaction was greater than that of social constraints. We point out managerial implications and future directions for research on constraints–customer satisfaction relationships.     

心理健康服务人员胜任特征与服务满意度的关系*

为考察心理健康服务人员胜任特征与服务双方满意度的关系,对分布于不同机构的心理健康服务人员及其来访者进行问卷调查。结果表明:心理健康服务人员胜任特征总分与自身服务满意度、来访者满意度均呈正相关,与自身服务满意度相关达到显著水平。胜任特征高分组心理健康服务人员自身服务满意度显著高于低分组自身服务满意度。与心理健康服务人员自身服务满意度显著相关的胜任特征条目,多数与知识、技能有关;与来访者满意度显著相关的胜任特征条目,均为来访者能感受到的与咨询关系建立有关的条目。