Understanding Adult Participant and Parent Empowerment Prior to Evaluation in the Undiagnosed Diseases Network

The burden of living with an undiagnosed condition is high and includes physical and emotional suffering, frustrations, and uncertainty. For patients and families experiencing these stressors, higher levels of empowerment may be associated with better outcomes. Thus, it is important to understand the experiences of patients with undiagnosed conditions and their families affected by undiagnosed conditions in order to identify strategies for fostering empowerment. In this study, we used the Genetic Counseling Outcome Scale (GCOS-24) to assess levels of empowerment and support group participation in 35 adult participants and 67 parents of child participants in the Undiagnosed Diseases Network (UDN) prior to their UDN in-person evaluation. Our results revealed significantly lower empowerment scores on the GCOS-24 in adult participants compared to parents of child participants [t(100)?=???3.01, p?=?0.003, average difference?=???11.12, 95% CI (??3.78, ??18.46)] and no significant association between support group participation and empowerment scores. The majority of participants (84.3%, 86/102) are not currently participating in any support groups, and participation rates were not significantly different for adult participants and parents of child participants (11.4 vs. 19.7%, respectively, FE p?=?0.40). Open-ended responses provided additional insight into support group participation, the challenges of living with undiagnosed conditions, and positive coping strategies. Future research will evaluate the extent to which empowerment scores change as participation in the UDN unfolds.     

Savoring with Intent: Investigating Types of and Motives for Responses to Positive Events

To contribute to a growing literature on positive affect (PA) regulation, we report on two studies investigating college students’ responses to hypothetical positive events using a new measure, the Positive Events and Responses Survey (PEARS). The PEARS includes various responses, including savoring (up-regulating PA) and dampening strategies (down-regulating PA), and novel responses (e.g., mass-sharing using Facebook). We examined its convergent and concurrent validity, its relationship with the value of happiness, and motives underlying savoring. Factor analyses supported a 3-factor model: natural savoring (e.g., expressing PA), intentional savoring (e.g., reflecting on the self), and dampening (e.g., minimizing the event). Both natural and intentional savoring were linked to other savoring behaviors, but only natural savoring was linked to perceived savoring ability and (in some bivariate results) to well-being. In contrast, dampening was consistently linked to less savoring and more dampening on other measures, lower well-being, and more depressive symptoms. People reporting valuing happiness more reported higher likelihood of all three types of responses. Qualitative data provided partial support for the hypothesis that intentional savoring strategies are more often used for instrumental reasons (e.g., boosting self-esteem), whereas natural savoring responses may sometimes be more automatic or stem from feeling PA. These studies validate a new measure and suggest that reasons underlying people’s savoring matter.     

Within-Family Effects of Smoking during Pregnancy on ADHD: the Importance of Phenotype

We sought to test within- and between- family associations of smoking during pregnancy (SDP) and attention deficit-hyperactivity disorder (ADHD) symptoms using a structured interview based on the conventional Diagnostic and Statistical Manual of Mental Disorders, 4th edition (DSM-IV) symptoms and the Strengths and Weaknesses of ADHD-Symptoms and Normal-Behavior (SWAN) scale, which is a population based measure that grew out of the notion that an ADHD diagnosis exists on the extreme end of a continuum of normative behaviors and includes both above- and below- average performance on attention and activity. We used a sibling-comparison approach in a sample of 173 families including siblings aged 7–16 years (52% male) drawn from the state of Missouri, USA, wherein mothers smoked during one pregnancy but not the other. There was a within-family effect of smoking during pregnancy on SWAN hyperactivity/impulsivity and SWAN total ADHD behaviors. The associations between SDP and DSM-IV-based ADHD symptom dimensions as well as SWAN inattention were explained by familial confounds. These findings suggest that SDP exerts a potentially causal effect on increased ADHD hyperactive/impulsive behaviors and that this SDP effect is best captured when hyperactivity/impulsivity is assessed more normatively across the population, rather than specifically assessing problematic behaviors via DSM symptoms. Thus, any potentially causal effect of SDP on ADHD symptom dimensions may be restricted to hyperactive/impulsive behaviors rather than inattention, and normative, non-DSM-IV based behavioral measures may provide a more sensitive test of mechanisms of SDP-ADHD symptom associations, particularly in non-clinical samples.     

Relationship between sexual activity and intraspecific fighting in male mice

Significantly more male mice having cohabited and mated with intact females subsequently displayed intraspecific fighting behavior after castration than males having cohabited with noncycling (ovariectomized) females. Also, intact males that failed to achieve a criterion for aggression during three screening tests subsequently showed a marked increase in fighting after having had copulatory experience relative to males that lived with ovariectomized females. Lastly, spontaneously aggressive males copulated more frequently than nonfighters.     

Measuring the time course of selection during visual search

In visual search tasks, observers can guide their attention towards items in the visual field that share features with the target item. In this series of studies, we examined the time course of guidance toward a subset of items that have the same color as the target item. Landolt Cs were placed on 16 colored disks. Fifteen distractor Cs had gaps facing up or down while one target C had a gap facing left or right. Observers searched for the target C and reported which side contained the gap as quickly as possible. In the absence of other information, observers must search at random through the Cs. However, during the trial, the disks changed colors. Twelve disks were now of one color and four disks were of another color. Observers knew that the target C would always be in the smaller color set. The experimental question was how quickly observers could guide their attention to the smaller color set. Results indicate that observers could not make instantaneous use of color information to guide the search, even when they knew which two colors would be appearing on every trial. In each study, it took participants 200–300 ms to fully utilize the color information once presented. Control studies replicated the finding with more saturated colors and with colored C stimuli (rather than Cs on colored disks). We conclude that segregation of a display by color for the purposes of guidance takes 200–300 ms to fully develop.     

Skill acquisition in music performance: relations between planning and temporal control

We investigated the acquisition of music performance skills in novice and expert pianists. Temporal disruptions in novice performances coincided with constraints in planning capacities. Child and adult pianists ranging in age (9-26 years), training (3-15 years) and sight-reading ability learned to perform a novel musical piece in eleven practice trials. Computer-detected pitch and timing errors revealed: (1) gradual improvements in performance tempo and pitch accuracy with skill level and practice, generally fitting a power function; (2) a relative-timing/pitch accuracy trade-off and high incidence of simultaneous pitch/time errors; (3) improvements in relative timing (temporal continuity, underlying beat, metrical structure) with skill and practice; and (4) increased anticipatory behavior and a greater range of planning with skill and practice. A strong positive relationship between the mastery of temporal constraints and planning abilities within performance suggests that these two cognitive indicators are closely related and may arise from segmentation processes during performance. Examination of sequence timing may explicate planning abilities that underlie many complex skills.