High Satisfaction and Low Distress in Breast Cancer Patients One Year after <Emphasis Type="Italic">BRCA</Emphasis>-Mutation Testing without Prior Face-to-Face Genetic Counseling

According to standard practice following referral to clinical genetics, most high risk breast cancer (BC) patients in many countries receive face-to-face genetic counseling prior to BRCA-mutation testing (DNA-intake). We evaluated a novel format by prospective study: replacing the intake consultation with telephone, written and digital information sent home. Face-to-face counseling then followed BRCA-mutation testing (DNA-direct). One year after BRCA-result disclosure, 108 participants returned long-term follow-up questionnaires, of whom 59 (55 %) had previously chosen DNA-direct (intervention) versus DNA-intake (standard practice i.e., control: 45 %). Questionnaires assessed satisfaction and psychological distress. All participants were satisfied and 85 % of DNA-direct participants would choose this procedure again; 10 % would prefer DNA-intake and 5 % were undecided. In repeated measurements ANOVA, general distress (GHQ-12, p?=?0.01) and BC-specific distress (IES-bc, p?=?0.03) were lower in DNA-direct than DNA-intake at all time measurements. Heredity-specific distress (IES-her) did not differ significantly between groups. Multivariate regression analyses showed that choice of procedure did not significantly contribute to either general or heredity-specific distress. BC-specific distress (after BC diagnosis) did contribute to both general and heredity-specific distress. This suggests that higher distress scores reflected BC experience, rather than the type of genetic diagnostic procedure. In conclusion, the large majority of BC patients that used DNA-direct reported high satisfaction without increased distress both in the short term, and 1 year after conclusion of genetic testing.     

Fragility,uncertainty, and healthcare

Medicine seeks to overcome one of the most fundamental fragilities of being human, the fragility of good health. No matter how robust our current state of health, we are inevitably susceptible to future illness and disease, while current disease serves to remind us of various frailties inherent in the human condition. This article examines the relationship between fragility and uncertainty with regard to health, and argues that there are reasons to accept rather than deny at least some forms of uncertainty. In situations of current ill health, both patients and doctors seek to manage this fragility through diagnoses that explain suffering and provide some certainty about prognosis as well as treatment. However, both diagnosis and prognosis are inevitably uncertain to some degree, leading to questions about how much uncertainty health professionals should disclose, and how to manage when diagnosis is elusive, leaving patients in uncertainty. We argue that patients can benefit when they are able to acknowledge, and appropriately accept, some uncertainty. Healthy people may seek to protect the fragility of their good health by undertaking preventative measures including various tests and screenings. However, these attempts to secure oneself against the onset of biological fragility can cause harm by creating rather than eliminating uncertainty. Finally, we argue that there are good reasons for accepting the fragility of health, along with the associated uncertainties.     

The perceived value of maths and academic self-efficacy in the appraisal of fear appeals used prior to a high-stakes test as threatening or challenging

Previous work has examined how messages communicated to students prior to high-stakes exams, that emphasise the importance of avoiding failure for subsequent life trajectory, may be appraised as threatening. In two studies, we extended this work to examine how students may also appraise such messages as challenging or disregard them as being of little relevance. In study one we piloted a questionnaire with students studying for their school leaving qualification in maths. Threat appraisals were correlated with low academic self-efficacy, high attainment value and low intrinsic value. Challenge appraisals were correlated with high academic self-efficacy, and high intrinsic, extrinsic and attainment value. In study two, we manipulated attainment value and academic self-efficacy in a series of vignettes. High value and high academic self-efficacy lead to challenge appraisals, high value but low academic self-efficacy lead to threat appraisals and low value lead to a disregarding of messages. These findings show that the relevance of messages is judged on attainment value in a primary appraisal and as a challenge or threat in a subsequent appraisal, based on the expectation of success or failure. These findings also highlight how the effectiveness of such messages may differ depending on student characteristics.     

Social Competence in Children with Brain Disorders: A Meta-analytic Review

Social competence, i.e. appropriate or effective social functioning, is an important determinant of quality of life. Social competence consists of social skills, social performance and social adjustment. The current paper reviews social skills, in particular emotion recognition performance and its relationship with social adjustment in children with brain disorders. In this review, normal development and the neuro-anatomical correlates of emotion recognition in both healthy children and adults and in various groups of children with brain disorders, will be discussed. A systematic literature search conducted on PubMed, yielded nine papers. Emotion recognition tasks were categorized on the basis of task design and emotional categories to ensure optimal comparison across studies before an explorative meta-analysis was conducted. This meta-analytic review suggests that children with brain disorders show impaired emotion recognition, with the recognition of sad and fearful expressions being most impaired. Performance did not seem to be related to derivative measures of social adjustment. Despite the limited number of studies on a variety of brain disorders and control groups, outcomes were quite consistent across analyses and corresponded largely with the existing literature on development of emotion recognition in typically developing children. More longitudinal prospective studies on emotion recognition are needed to gain insight into recovery and subsequent development of children with distinct brain disorders. This will aid development, selection and implementation of interventions for improvement of social competence and quality of life in children with a brain disorder.     

Knowledge of and Interest in Genetic Results Among Parkinson Disease Patients and Caregivers

The purpose of the study is to investigate Parkinson disease (PD) patients’ and caregivers’ knowledge of and interest in genetic testing. Gaucher disease (GD) results from recessive mutations in glucocerebrosidase (GBA). Both heterozygote GBA carriers and GD patients are at greater risk for PD. Studies regarding knowledge of and interest in genetic testing have been limited and have not offered genetic results to participants. In this study, 353 PD patients and 180 caregivers were recruited to a PD genetic study. The association between GD, GBA mutations and PD was described to participants who reported their familiarity with genetic terms, answered questions on genetic concepts, and indicated their interest in knowing if they may have GD (two GBA mutations) and other genetic information that could impact their health. Ninety-three-percent of participants were interested in receiving GBA results; however, only 51.6 % of PD participants and 55.6 % of caregivers knew that “scientists have identified genes associated with a higher risk of developing PD.” PD patients may benefit from education and genetic counseling on the implications of genetic testing.     

Use of Genetic Tests among Neurologists and Psychiatrists: Knowledge,Attitudes, Behaviors,and Needs for Training

This study explores neurologists’ and psychiatrists’ knowledge, attitudes, and practices concerning genetic tests. Psychiatrists (n?=?5,316) and neurologists (n?=?2,167) on the American Medical Association master list who had agreed to receive surveys were sent an email link to a survey about their attitudes and practices regarding genetic testing; 372 psychiatrists and 163 neurologists responded. A higher proportion of neurologists (74 %) than psychiatrists (14 %) who responded to the survey had ordered genetic testing in the past 6 months. Overall, most respondents thought that genetic tests should be performed more frequently, but almost half believed genetic tests could harm patients psychologically and considered legal protections inadequate. Almost half of neurologists (49 %) and over 75 % of psychiatrists did not have a genetics professional to whom to refer patients; those who had ordered genetic tests were more likely than those who did not do so to have access to a genetic counselor. Of respondents, 10 % had received patient requests not to document genetic information and 15 % had received inquiries about direct-to-consumer genetic testing. Neurologists reported themselves to be relatively more experienced and knowledgeable about genetics than psychiatrists. These data, the first to examine several important issues concerning knowledge, attitudes and behaviors of neurologists and psychiatrists regarding genetic tests, have important implications for future practice, research, and education.     

Miami Thrives: Weaving a Poverty Reduction Coalition

In an environment where community based organizations are asked to do increasingly more to alleviate the effects of complex social problems, networks and coalitions are becoming the answer for increasing scale, efficiency, coordination, and most importantly, social impact. This paper highlights the formation of a poverty reduction coalition in south Florida. Our case study approach chronicles a developing coalition in Miami-Dade County and the role of one organization acting as lead to the initiative. Drawing on interviews with lead organization staff, participant observation field notes, network mapping and analysis of documents and artifacts from the initiative, we analyze the local organizational context and illuminate important processes associated with supporting a developing coalition. Findings offer a picture of the interorganizational relationships in the community using social network analysis and identify the organizational capacity factors that contribute to and inhibit the formation of a cohesive and effective coalition in this context. This study also highlights the utility of an action research approach to organizational learning about coalition-building in such a way that informs decision making.     

The effects of bilingual language proficiency on recall accuracy and semantic clustering in free recall output: evidence for shared semantic associations across languages

Two experiments investigated how well bilinguals utilise long-standing semantic associations to encode and retrieve semantic clusters in verbal episodic memory. In Experiment 1, Spanish-English bilinguals (N?=?128) studied and recalled word and picture sets. Word recall was equivalent in L1 and L2, picture recall was better in L1 than in L2, and the picture superiority effect was stronger in L1 than in L2. Semantic clustering in word and picture recall was equivalent in L1 and L2. In Experiment 2, Spanish-English bilinguals (N?=?128) and English-speaking monolinguals (N?=?128) studied and recalled word sequences that contained semantically related pairs. Data were analyzed using a multinomial processing tree approach, the pair-clustering model. Cluster formation was more likely for semantically organised than for randomly ordered word sequences. Probabilities of cluster formation, cluster retrieval, and retrieval of unclustered items did not differ across languages or language groups. Language proficiency has little if any impact on the utilisation of long-standing semantic associations, which are language-general.     

Power,participation and partnerships: reflections on the co-creation of knowledge

Narrative writing was used to critically reflect on the reasons for the success and failure of two research partnerships: one between the authors and a community group, the other between the authors and academic colleagues. The reflections relate to a vignette constructed on the experiences of the authors and somewhat fictionalised, but brought together to highlight the contrasts, whereby one research partnership was successful in producing outcomes while the other was not. An analysis of these reflections was informed by Wenger’s Communities of Practice framework. This helped draw out issues around power and participation as fundamental for successful research partnerships, particularly multidisciplinary partnerships, intent on the co-creation of knowledge. Such issues related to recognising partnerships and the underlying assumptions when these partnerships cross boundaries include transparent communication, power and decision-making processes, critical self-awareness, and negotiated meaning and identity.