“Not Tied Up Neatly with a Bow”: Professionals’ Challenging Cases in Informed Consent for Genomic Sequencing

As the use of genomic technology has expanded in research and clinical settings, issues surrounding informed consent for genome and exome sequencing have surfaced. Despite the importance of informed consent, little is known about the specific challenges that professionals encounter when consenting patients or research participants for genomic sequencing. We interviewed 29 genetic counselors and research coordinators with considerable experience obtaining informed consent for genomic sequencing to understand their experiences and perspectives. As part of this interview, 24 interviewees discussed an informed consent case they found particularly memorable or challenging. We analyzed these case examples to determine the primary issue or challenge represented by each case. Challenges fell into two domains: participant understanding, and facilitating decisions about testing or research participation. Challenges related to participant understanding included varying levels of general and genomic literacy, difficulty managing participant expectations, and contextual factors that impeded participant understanding. Challenges related to facilitating decision-making included complicated family dynamics such as disagreement or coercion, situations in which it was unclear whether sequencing research would be a good use of participant time or resources, and situations in which the professional experienced disagreement or discomfort with participant decisions. The issues highlighted in these case examples are instructive in preparing genetics professionals to obtain informed consent for genomic sequencing.     

The Experience of Vicarious Posttraumatic Growth in Mental Health Workers

In order to add to the body of research that examines the phenomenon of vicarious posttraumatic growth, this study sought to illuminate the lived experiences of mental health professionals who work on a day-to-day basis with multiply traumatized children and adolescents and, as a result, experience measurably high levels of vicarious trauma and compassion satisfaction. The findings from this qualitative study support positive vicarious experiences derived from trauma work and expose the pathologically focused nature of the profession.     

Psychosocial Factors Relating to Adaptive Capacity in a New Zealand District Health Board

ABSTRACT

Communities assume that health care systems are adequately preparing for disasters, yet health sector capacities are restricted. The current research examined factors associated with adaptive capacity of staff in the New Zealand health sector. Two studies were carried out in the context of large-scale emergency management exercises, with the assumption that such exercises provide information about psychosocial responses to real emergency situations. The focus of the research was on adaptive capacity to address routine work-related stressors, as high levels of routine demands in the health sector have implications for staff health and organizational functioning, both of which are important for managing the stressful demands arising from emergency situations. The implications of these findings are discussed.     

Evaluation of the Informational Content,Readability and Comprehensibility of Online Health Information on Monogenic Diabetes

The purpose of this study was to assess the informational content, readability, suitability and comprehensibility of websites offering educational information about monogenic diabetes available to patients. The top 20 results from 15 queries in four search engines were screened. Content analysis was performed by two independent coders. Readability was determined using Flesch-Kincaid grade level (FKGL) and Simplified Measure of Goobledygook (SMOG). The Comprehensibility Assessment of Materials (SAM + CAM) scale was utilized to evaluate website suitability and comprehensibility. Only 2% (N = 29) of 1200 screened websites met inclusion criteria. Content analysis showed that 16 websites presented information on at least the most common forms of MODY (1, 2 and 3), four addressed the utility of genetic counseling, and none included support resources for patients. All websites exceeded the consensus readability level (6th grade) as assessed by FKGL (10.1 grade) and SMOG (12.8 ± 1.5 grades). Although the majority (N = 20) of websites had an overall “adequate” to “superior” quality score (SAM + CAM score > = 40%), more than one-third scored “not suitable” in categories of content, literacy demand, graphics, and learning motivation. The online educational resources for monogenic diabetes have a high readability level and require improvement in ease of use and comprehensibility for patients with diabetes.     

Site Distance, Gender, and Knowledge of Geographic Sites

The primary purpose of the experiments presented in this report was to study systematically the geographic site-name, associative memory of male and female college students (predominantly White and middle class) for locations that varied in distance: local, national, and international sites. In the first experiment, participants were to match listed names of campus buildings and local cities with their marked locations on maps. In the second experiment, under a site-name memory, a site-name/map-aid memory, and a map-aid/name-aid memory (site-name associative memory) condition, participants were to recall or match as many of the 50 US states and the 25 largest US cities as they could. In the third experiment, the participants were to match a listed grouping of the world’s largest bodies of water and continents, a set of countries, and the world’s largest cities, with their marked locations on maps. In the first experiment, men matched significantly more local cities than did women; in the second experiment, men recalled significantly more of the cities under the site-name/map-aid and the map-aid/name-aid memory conditions than did women; and in the third experiment, men matched significantly more sites on all three maps than did women. The absence of gender differences for campus buildings and states may have been a product of the participants having had extensive opportunities to learn these sites. That men displayed greater knowledge of cities and international sites suggests that they have a greater interest in geography than do women. Because of the limitations of the methodology used, the gender differences favoring men could not be interpreted as primarily a product of nature or of nurture, and thus it was concluded that they were a joint product of nature and nurture.     

Moms Hating Moms: The Internalization of Mother War Rhetoric

Work status and mothering are culturally constructed as rigid binaries. The purpose of this study was to explore the effect on mothers of these polarized characterizations of motherhood and to assess the social support mothers perceive they receive for their mother identity. This study, based on interview data collected from 98 married mothers of preschool children, demonstrated that Mother War rhetoric is most extensively internalized by at-home mothers. The majority of mothers perceived a lack of cultural support for their mother role, though the impact of cultural Mother War rhetoric was buffered or exacerbated by mothers' social support systems. The lack of adequate support from other mothers, spouses, parents, and in-laws led mothers to binary constructions of worker–mother identity. This, in turn, led mothers to seek support within shared contexts, which further separated at-home and employed mother from each other and separated mothers from the support of their parents.     

Teaching adolescents about changing bodies: Randomized controlled trial of an Internet puberty education and body dissatisfaction prevention program

This study tested the efficacy of an Internet-based prevention program, Trouble on the Tightrope: In Search of Skateboard Sam, on pubertal knowledge, body esteem, and self-esteem. One hundred and ninety participants (mean age 11.6 years) were randomized to either an intervention or attention placebo control condition and were assessed at baseline, after three Internet-based sessions, and at 3-month follow-up. Although the primary hypotheses were not supported, exploratory moderator analyses indicated that the intervention was beneficial for select students. Specifically, pubertal status moderated the effects on weight-related body esteem and several domains of self-esteem, resulting in positive effects for participants in the intervention group who had begun puberty. Gender differences were found on self-esteem subscales, indicating more robust effects for girls than boys. Tailored Internet programs based on personal characteristics such as gender and pubertal status may be a fruitful area for future research with adolescents.     

Developmental Trajectories of Girls’ and Boys’ Delinquency and Associated Problems

Developmental trajectories in delinquency through adolescence were studied along with family and peer relationship problems. Drawing from eight waves of data over seven years, we conducted trajectory analyses with a sample of 746 students (402 girls; 344 boys). Analyzing girls and boys together, a five-class model emerged: 60% of the adolescents rarely reported delinquency; 27.7% reported low initial levels with moderate levels of delinquency over time; 6% in the late onset group reported initially low and rising levels of delinquency; 5% in the early onset group reported moderate initial levels which increased and then decreased in later adolescence. A small group of only boys (1.3%) labeled chronic reported high initial levels of delinquency that increased over time. Group comparisons revealed problems in internalizing, parent and peer relationship problems. The findings provide direction for early identification and interventions to curtail the development of delinquency.