Giving Voice to Patients: Developing a Discussion Method to Involve Patients in Translational Research

Biomedical research policy in recent years has often tried to make such research more ‘translational’, aiming to facilitate the transfer of insights from research and development (R&D) to health care for the benefit of future users. Involving patients in deliberations about and design of biomedical research may increase the quality of R&D and of resulting innovations and thus contribute to translation. However, patient involvement in biomedical research is not an easy feat. This paper discusses the development of a method for involving patients in (translational) biomedical research aiming to address its main challenges.After reviewing the potential challenges of patient involvement, we formulate three requirements for any method to meaningfully involve patients in (translational) biomedical research. It should enable patients (1) to put forward their experiential knowledge, (2) to develop a rich view of what an envisioned innovation might look like and do, and (3) to connect their experiential knowledge with the envisioned innovation. We then describe how we developed the card-based discussion method ‘Voice of patients’, and discuss to what extent the method, when used in four focus groups, satisfied these requirements. We conclude that the method is quite successful in mobilising patients’ experiential knowledge, in stimulating their imaginaries of the innovation under discussion and to some extent also in connecting these two. More work is needed to translate patients’ considerations into recommendations relevant to researchers’ activities. It also seems wise to broaden the audience for patients’ considerations to other actors working on a specific innovation.     

The mediating role of identity incompatibility in the relationship between perceived discrimination and acculturation preferences in two generations of the ethnic Russian minority in the North Caucasus

Abstract

The present study tested a model in which the perceived incompatibility of ethnic Russian and regional North Caucasian identities mediates the relationship between perceived discrimination and acculturation strategies in two generations of ethnic Russian minority members living in the Kabardino-Balkar Republic, North Caucasus, Russian Federation. Two identities might be perceived incompatible when they represent conflicting sets of norms and values and the two communities may place competing demands on individual commitment and loyalty. We sampled 105 dyads from ethnic Russian families (youth: M = 18 years, SD = 2.35, 48.6% female; parents: M = 43 years, SD = 6.97, 68.6% female). The questionnaire included measures of perceived discrimination, perceived identity incompatibility, and acculturation strategies. The results of multigroup path analysis showed that the perceived identity incompatibility mediated the relationship between perceived discrimination and two strategies, aimed at culture maintenance (integration and separation) in both generations. Identity incompatibility is regarded as a psychological mechanism that explains the impact of perceived discrimination on minority acculturation preferences in a multicultural region.     

In which direction to move? Facilitative and interference effects of gestures on problem solver's thinking

Recent research shows that co-speech gestures can influence gesturers’ thought. This line of research suggests that the influence of gestures is so strong, that it can wash out and reverse an effect of learning. We argue that these findings need a more robust and ecologically valid test, which we provide in this article. Our results support the claim that gestures not only reflect information in our mental representations, but can also influence gesturer's thought by adding action information to one's mental representation during problem solving (Tower of Hanoi). We show, however, that the effect of gestures on subsequent performance is not as strong as previously suggested. As opposed to what previous research indicates, gestures' facilitative effect through learning was not nullified by the potentially interfering effect on subsequent problem-solving performance of incompatible gestures. To conclude, using gestures during problem solving seems to provide more benefits than costs for task performance.     

Does Traumatic Brain Injury Attenuate the Exposure Therapy Process?

Research indicates that exposure therapy is efficacious for combat-related posttraumatic stress disorder (PTSD) comorbid with traumatic brain injury (TBI) as is shown by reduced PTSD treatment outcome scores. What is unknown, however, is whether the process of fear extinction is attenuated in veterans with TBI history. Increased PTSD symptomatology and possible cognitive deficits associated with TBI sequelae may indicate additional or longer exposure sessions to achieve habituation and extinction comparable to individuals without TBI history. As such, a more extensive course of treatment may be necessary to achieve comparable PTSD treatment outcome scores for individuals with TBI history. Using a sample of veterans with combat-related PTSD, some of whom were comorbid for TBI, this study compared process variables considered relevant to successful treatment outcome in exposure therapy. Individuals with and without TBI demonstrated similar rates of fear activation, length and number of exposure sessions, within-session habituation, between-session habituation, and extinction rate; results remained consistent when controlling for differential PTSD symptomatology. Furthermore, results indicated that self-perception of executive dysfunction did not impact the exposure process. Results suggest that individuals with PTSD and TBI history engage successfully and no differently in the exposure therapy process as compared to individuals with PTSD alone. Findings further support exposure therapy as a first-line treatment for combat-related PTSD regardless of TBI history.     

The perception of (naked only) bodies and faceless heads relies on holistic processing: Evidence from the inversion effect

Faces and bodies are more difficult to perceive when presented inverted than when presented upright (i.e., stimulus inversion effect), an effect that has been attributed to the disruption of holistic processing. The features that can trigger holistic processing in faces and bodies, however, still remain elusive. In this study, using a sequential matching task, we tested whether stimulus inversion affects various categories of visual stimuli: faces, faceless heads, faceless heads in body context, headless bodies naked, whole bodies naked, headless bodies clothed, and whole bodies clothed. Both accuracy and inversion efficiency score results show inversion effects for all categories but for clothed bodies (with and without heads). In addition, the magnitude of the inversion effect for face, naked body, and faceless heads was similar. Our findings demonstrate that the perception of faces, faceless heads, and naked bodies relies on holistic processing. Clothed bodies (with and without heads), on the other side, may trigger clothes-sensitive rather than body-sensitive perceptual mechanisms.     

Conscious Control Is Associated With Freezing of Mechanical Degrees of Freedom During Motor Learning

This study investigated whether conscious control is associated with freezing of mechanical degrees of freedom during motor learning. Participants practiced a throwing task using either error-strewn or error-reduced practice protocols, which encourage high or low levels of conscious control, respectively. After 24 hr, participants engaged in a series of delayed retention and transfer tests. Furthermore, propensity for conscious control was assessed using participants' ratings and freezing was gauged through movement variability of the throwing arm. Performance was defined by mean radial error. In the error-strewn group, propensity for conscious control was positively associated with both freezing and performance. In the error-reduced group, propensity for conscious control was negatively associated with performance, but not with freezing. These results suggest that conscious control is associated with freezing of mechanical degrees of freedom during motor learning.     

Perceived Perfectionism from God Scale: Development and Initial Evidence

In this study, the Perceived Perfectionism from God Scale (PPGS) was developed with Latter-day Saints (Mormons) across two samples. Sample 1 (N = 421) was used for EFA to select items for the Perceived Standards from God (5 items) and the Perceived Discrepancy from God (5 items) subscales. Sample 2 (N = 420) was used for CFA and cross-validated the 2-factor oblique model as well as a bifactor model. Perceived Standards from God scores had Cronbach alphas ranging from .73 to .78, and Perceived Discrepancy from God scores had Cronbach alphas ranging from .82 to .84. Standards from God scores were positively correlated with positive affect, whereas Discrepancy from God scores was positively correlated with negative affect, shame and guilt. Moreover, these two PPGS subscale scores added significant incremental variances in predicting associated variables over and above corresponding personal perfectionism scores.