Design and Evaluation of a Decision Aid for Inviting Parents to Participate in a Fragile X Newborn Screening Pilot Study

The major objectives of this project were to develop and evaluate a brochure to help parents make an informed decision about participation in a fragile X newborn screening study. We used an iterative development process that drew on principles of Informed Decision Making (IDM), stakeholder input, design expertise, and expert evaluation. A simulation study with 118 women examined response to the brochure. An independent review rated the brochure high on informational content, guidance, and values. Mothers took an average of 6.5 min to read it and scored an average of 91.1 % correct on a knowledge test. Most women rated the brochure as high quality and trustworthy. When asked to make a hypothetical decision about study participation, 61.9 % would agree to screening. Structural equation modeling showed that agreement to screening and decisional confidence were associated with perceived quality and trust in the brochure. Minority and white mothers did not differ in perceptions of quality or trust. We demonstrate the application of IDM in developing a study brochure. The brochure was highly rated by experts and consumers, met high standards for IDM, and achieved stated goals in a simulation study. The IDM provides a model for consent in research disclosing complicated genetic information of uncertain value.     

Zoo Visitors' Affective Responses to Observing Animal Behaviors

ABSTRACT

The opportunity to observe or interact with animals in a zoo is often vital in influencing visitors' positive feelings towards animals and ultimately their conservation behavior. This study explores the relationship between observed animal behavior and zoo visitors' responses. A self-administered questionnaire was completed by 717 visitors across four exhibits (giraffe, lion, cheetah, and red panda) at three zoos (Brookfield Zoo, San Diego Zoo Safari Park, and Central Park Zoo). The questionnaire measured observed animal behaviors and visitors' predispositions, affective responses, and meaning-making at animal exhibits. Multivariate path analyses indicated that up-close encounters with zoo animals, along with observable active animal behaviors, predicted visitors' reported positive affective responses which, in turn, predicted their meaning-making. These findings lend support to the role of positive affect as a mediator between observable animal behaviors and visitor meaning-making. Implications are discussed in relation to achieving both conservation education and animal welfare outcomes.     

A Longitudinal Investigation of Posttraumatic Growth in Adult Patients Undergoing Treatment for Acute Leukemia

An acute leukemia diagnosis can be an extremely stressful experience for most patients. Posttraumatic growth (PTG) is positive psychological change experienced following a struggle with highly challenging life circumstances. The current study is the first longitudinal investigation of predictors of PTG and distress in adult acute leukemia patients undergoing induction chemotherapy. Findings suggest that these patients report PTG, and levels of PTG appear to increase over the weeks following leukemia diagnosis and induction chemotherapy. Variables associated with higher total PTG scores over time included greater number of days from baseline, younger age, and greater challenge to core beliefs. Variables associated with higher distress included greater number of days from baseline, greater perceived cancer threat, higher symptom severity, and lower spiritual well-being. Results underscore the critical role that examination of one’s core beliefs may play in the development of PTG over time.     

Effect of Partners’ Disgust Responses on Psychological Wellbeing in Cancer Patients

The aim of this study was to explore quantitatively the relationship between disgust responses in cancer patients and their partners, and in turn their relationship to patients’ psychological well-being. We recruited 50 participants with heterogeneous cancer diagnoses and their partners from cancer-related groups (e.g., charities). Patients completed questionnaires to determine levels of disgust propensity, disgust sensitivity, self-disgust, and symptoms of anxiety and depression. Disgust propensity and sensitivity were also assessed in their partners. Partners’ disgust sensitivity was significantly positively correlated with cancer patients’ self-disgust, disgust propensity, and depression. Path analyses suggested that patients’ self-disgust plays a role in mediating the effect of partners’ disgust sensitivity on patients’ psychological well-being. This study provides the first quantitative evidence that psychological well-being in cancer patients is contingent on their partners’ sensitivity to disgust, and that patients’ self-disgust plays a mediating role. Focusing therapeutically on disgust responses could well be beneficial to people with cancer.     

Identification of Nearly Fatal Suicide Attempts: Self-Inflicted Injury Severity Form

The Self-inflicted Injury Severity Form (SIISF) was developed as an epidemiological research tool for identifying individuals in hospital emergency departments who have life-threatening self-inflicted injuries. Data were collected from 715 patients with self-inflicted injuries in two large hospitals. In 295 of these cases, a second set of data was independently collected for assessment of interrater reliability. Validity was assessed by comparing the SIISF results with simultaneously collected Risk—Rescue Ratings. Assessment of interrater reliability found that only 2.4% of physicians disagreed on the suicide method used. The kappa statistic for method used was .94, indicating excellent agreement. The SIISF was found to distinguish between severe and less severe injuries. Thus, it appears to provide a simple method to distinguish patients who have life-threatening self-inflicted injuries.