Experience of Norwegian Female BRCA1 and BRCA2 Mutation-Carrying Participants in Educational Support Groups: a Qualitative Study

Women identified as BRCA1 and BRCA2 mutation carriers are advised to manage their cancer risk through intensive screening programs and/or by undergoing risk-reducing surgery. The aim of this study was to explore and describe the experiences of female BRCA1/2 mutation carriers living with cancer risk and their experiences with participation in educational support groups (ESG). This qualitative study enrolled 17 (10 + 7) ESG participants in two different ESGs. The focus group interviews were performed immediately prior to and following two ESGs. The data were analyzed using John Knodel’s (1993) practical approach. Three main themes were identified; the women’s expectation and experience with ESG, the feeling of loneliness and isolation, and the feelings of living with “something else.” In this paper we have focused on one of the main themes- the women’s expectation and experience with ESG. This main theme presents four subthemes: the women’s need for unambiguous, clear and unified information from health professionals, the need for social support, the important role of the patient representative, and increased knowledge potentially raising concern. Participation in an ESG for women with BRCA1 and BRCA2 mutations can provide relevant information and support in the decision-making process related to risk-reducing surgery.     

Motivation to Pursue Genetic Testing in Individuals with a Personal or Family History of Cardiac Events or Sudden Cardiac Death

Genetic testing is becoming increasingly available for cardiac channelopathies, such as long QT syndrome and Brugada syndrome, which can lead to sudden cardiac death. Test results can be used to shape an individual’s medical management and to identify at-risk family members. In our qualitative study, all participants had a personal or family history of a diagnosed cardiac arrhythmia syndrome or sudden cardiac death. Open-ended interviews were conducted individually and in focus groups. Interviews were audio recorded, transcribed verbatim, and analyzed using a qualitative grounded-theory approach. Of 50 participants, 37 described their motivations for pursuing genetic testing for long QT syndrome or another cardiac channelopathy. Participants’ motivations included: to find an explanation for a family member’s sudden death, to relieve uncertainty regarding a diagnosis, to guide future medical management, to allay concern about children or other family members, and to comply with recommendations of physicians or family members. Perceived reasons not to pursue genetic testing included denial, fear, and lack of information. The genetic counseling and informed consent process can be enhanced by understanding and addressing an individual’s internal and external motivations either for or against pursuing genetic testing.     

The Factor Structure of the Forms of Self-Criticising/Attacking & Self-Reassuring Scale in Thirteen Distinct Populations

There is considerable evidence that self-criticism plays a major role in the vulnerability to and recovery from psychopathology. Methods to measure this process, and its change over time, are therefore important for research in psychopathology and well-being. This study examined the factor structure of a widely used measure, the Forms of Self-Criticising/Attacking & Self-Reassuring Scale in thirteen nonclinical samples (N?=?7510) from twelve different countries: Australia (N?= 319), Canada (N?= 383), Switzerland (N?= 230), Israel (N?=?476), Italy (N?=?389), Japan (N?=?264), the Netherlands (N?=?360), Portugal (N?=?764), Slovakia (N?=?1326), Taiwan (N?=?417), the United Kingdom 1 (N?=?1570), the United Kingdom 2 (N?=?883), and USA (N?=?331). This study used more advanced analyses than prior reports: a bifactor item-response theory model, a two-tier item-response theory model, and a non-parametric item-response theory (Mokken) scale analysis. Although the original three-factor solution for the FSCRS (distinguishing between Inadequate-Self, Hated-Self, and Reassured-Self) had an acceptable fit, two-tier models, with two general factors (Self-criticism and Self-reassurance) demonstrated the best fit across all samples. This study provides preliminary evidence suggesting that this two-factor structure can be used in a range of nonclinical contexts across countries and cultures. Inadequate-Self and Hated-Self might not by distinct factors in nonclinical samples. Future work may benefit from distinguishing between self-correction versus shame-based self-criticism.     

The Emergence of Clinical Research Ethics Consultation: Insights From a National Collaborative

The increasing complexity of human subjects research and its oversight has prompted researchers, as well as institutional review boards (IRBs), to have a forum in which to discuss challenging or novel ethical issues not fully addressed by regulations. Research ethics consultation (REC) services provide such a forum. In this article, we rely on the experiences of a national Research Ethics Consultation Collaborative that collected more than 350 research ethics consultations in a repository and published 18 challenging cases with accompanying ethical commentaries to highlight four contexts in which REC can be a valuable resource. REC assists: 1) investigators before and after the regulatory review; 2) investigators, IRBs, and other research administrators facing challenging and novel ethical issues; 3) IRBs and investigators with the increasing challenges of informed consent and risk/benefit analysis; and 4) in providing flexible and collaborative assistance to overcome study hurdles, mediate conflicts within a team, or directly engage with research participants. Institutions that have established, or plan to establish, REC services should work to raise the visibility of their service and engage in open communication with existing clinical ethics consult services as well as the IRB. While the IRB system remains the foundation for the ethical review of research, REC can be a valuable service for investigators, regulators, and research participants aligned with the goal of supporting ethical research.     

Transmission: From Experience to Awareness: Jewish Children Hidden in France and Their Children

The purpose of this research was to attempt to understand how the experience of having been a Jewish child hidden in France during the Occupation was transmitted to offspring. This analysis is based on research carried out among former hidden Jewish children, and the therapeutic follow-up provided in the setting of our clinical activities. The psychopathology of the first generation plays a role in the transmission process. The transmission of their history is also a source of ambivalence. This study shows how important it is to consider the complexity of personal histories and the distortions attendant on the transmission of these histories.     

Child physical punishment,parenting, and school readiness

This study explored how physical punishment (PP) and other parenting approaches may predict school readiness outcomes. By using the Canada‐wide representative data, 5,513 children were followed over a 2‐year period. Caregivers reported on their use of PP and other parenting approaches (i.e., literacy and learning activities and other disciplinary practices) when children were 2–3 years old, whereas school readiness was measured at 4–5 years using interviewer‐administered tests of number competence and receptive vocabulary skills. Analyses controlled for PP use at 4–5 years, child externalizing behaviours, and various sociodemographics. Results indicated that PP does not directly predict school readiness; however, the effect of PP was moderated by other parenting approaches. Children's receptive vocabulary was weaker if caregivers used PP together with less frequent explaining/teaching regarding problem behaviour, or PP with less frequent engagement in literacy and learning activities. Children had weaker number competence when PP co‐occurred with more frequent psychological aggression (e.g., yelling/scolding). Results suggest that PP hinders children's school readiness when used alongside other parenting approaches, which reflects the reality of parenting (i.e., PP does not occur in isolation). Findings support early education efforts aimed at promoting early learning and literacy opportunities, as well as positive disciplinary strategies that do not involve PP.

Highlights

• We explored how physical punishment and other parenting approaches may predict school readiness outcomes using Canada‐wide data.
• Results provided little evidence of positive effects of physical punishment on school readiness across a range of parenting and disciplinary contexts.
• To promote school readiness, early education efforts should promote early learning opportunities and positive disciplinary strategies that do not involve physical punishment.

     

Self- and Co-regulation in the mediamatics sector: European community (EC) strategies and contributions towards a transformed statehood

As the global communication network matures, the systems and procedures for regulating the growing network and its use are being challenged. The general proliferation of services or the specific demand for electronic transactions require guidance and control which the market alone cannot supply. Meanwhile, traditional regulatory regimes remain far from global or coherent. This article distinguishes between coordination and regulation to clarify areas where government intervention is unnecessary and where indispensable. It explores the current patchwork of regulatory approaches, reviews different regulatory areas and strategies, identifies trends, and highlights problem areas particular to electronic commerce and third party protection. She studied communication science at the Universities of Salzburg and Vienna, and romance philology at the University of Salzburg and at the Università degli Studi di Perugia (Italy). Her research interests include media economics, as well as legal and policy matters for the media environment. His research focuses on the European information society, the digital economy, e-commerce and the role of the state in the communications sector. He received an MSc. in business informatics, a Ph.D. in political science, and is Univ.-Doz. (associate professor) for economics and politics of communication at the University of Vienna.     

It Is Time to Observe the Creative Process: How to Use a Creative Process Report Diary (CRD)

Although the first research on the creative process was based on interviews with the aim of identifying the main stages (macro‐process), in the last 50 years researchers have focused more on the analysis of micro‐processes, i.e., the mechanisms underlying the generation of ideas. This interest in the micro‐processes is partly a result of the tools available to researchers to carry out rigorous studies on the creative process. In this article, we present a useful and relevant analytical tool for macro‐processes to assess the creative process in a natural context and when it occurs. Here, the reader will find advice on establishing a research protocol for the creative process by using diaries. Examples of diaries and results are presented. The advantage of this tool is that it enables a direct, rich, and inexpensive assessment of the creative process. Thus, the ecological validity of the diary method is particularly high.