“You Have to Sit and Explain it All,and Explain Yourself.” Mothers’ Experiences of Support Services for Their Offspring with a Rare Genetic Intellectual Disability Syndrome

The experiences of mothers of adult offspring with Angelman, Cornelia de Lange, or Cri du Chat syndrome have not been previously explored in research. The current study focuses on experiences with social and medical services and the impact the rareness of an adult offspring’s syndrome has on the experiences of mothers. Eight mothers of adults with Angelman, Cornelia de Lange, or Cri du Chat syndrome were interviewed. Thematic Content Analysis was used to interpret the interviews. Four themes emerged from the analysis: (i) The rarity of their offspring’s syndrome, (ii) Uneven medical and social care service provision, (iii) The inertia of social care services, and (iv) Mothers as advocates. Mothers felt that the rareness of their offspring’s syndrome did not affect experiences with social care services, but did affect access to medical services and some aspects of day-to-day living. Accessing appropriate social care services was reported to be a lengthy and complex process. These data may help inform care service providers about how best to support adults with rare genetic syndromes and their families.     

Validation of a Self-Concept Scale for Lynch Syndrome in Different Nationalities

Learning about hereditary cancer may influence an individual’s self-concept, which otherwise represents a complex but stable cognitive structure. Recently, a 20-statement self-concept scale, with subscales related to stigma-vulnerability and bowel symptom-related anxiety, was developed for Lynch syndrome. We compared the performance of this scale in 591 mutation carriers from Denmark, Sweden and Canada. Principal component analysis identified two sets of linked statements—the first related to feeling different, isolated and labeled, and the second to concern and worry about bowel changes. The scale performed consistently in the three countries. Minor differences were identified, with guilt about passing on a defective gene and feelings of losing one’s privacy being more pronounced among Canadians, whereas Danes more often expressed worries about cancer. Validation of the Lynch syndrome self-concept scale supports its basic structure, identifies dependence between the statements in the subscales and demonstrates its applicability in different Western populations.     

The interim test effect: Testing prior material can facilitate the learning of new material

A wealth of prior research has shown that testing can improve subsequent learning of the initially tested material. In contrast, only one recent study has shown that an interim test over prior material can improve learning of subsequent new material (i.e., an interim-test effect). Five experiments replicated and extended this initial work by exploring the extent to which interim test effects generalize to complex text material. Participants were prompted to recall each section of an expository text before moving on to study the next section, or were only prompted to recall after the final section. In all experiments, recall of the final, target section was greater when prior sections had received interim tests versus no interim tests. Experiment 3 established that the effect was due to interim testing in particular rather than to intervening activity in general. Experiment 4 established that the effect was not due to test expectancy differences. In contrast to prior research, Experiment 4 also provided evidence that the effect is not due to release from proactive interference. We discuss other possible mechanisms underlying interim-test effects with text, including shifting to more effective encoding strategies.     

Measuring multiple minority stress: the LGBT People of Color Microaggressions Scale

Lesbian, gay, and bisexual individuals who are also racial/ethnic minorities (LGBT-POC) are a multiply marginalized population subject to microaggressions associated with both racism and heterosexism. To date, research on this population has been hampered by the lack of a measurement tool to assess the unique experiences associated with the intersection of these oppressions. To address this gap in the literature, we conducted a three-phase, mixed method empirical study to assess microaggressions among LGBT-POC. The LGBT People of Color Microaggressions Scale is an 18-item self-report scale assessing the unique types of microaggressions experienced by ethnic minority LGBT adults. The measure includes three subscales: (a) Racism in LGBT communities, (b) Heterosexism in Racial/Ethnic Minority Communities, and (c) Racism in Dating and Close Relationships, that are theoretically consistent with prior literature on racial/ethnic minority LGBTs and have strong psychometric properties including internal consistency and construct validity in terms of correlations with measures of psychological distress and LGBT-identity variables. Men scored higher on the LGBT-PCMS than women, lesbians and gay men scored higher than bisexual women and men, and Asian Americans scored higher than African Americans and Latina/os.     

Experiences of habit formation: a qualitative study

Habit formation is an important goal for behaviour change interventions because habitual behaviours are elicited automatically and are therefore likely to be maintained. This study documented experiences of habit development in 10 participants enrolled on a weight loss intervention explicitly based on habit-formation principles. Thematic analysis revealed three themes: Strategies used to support initial engagement in a novel behaviour; development of behavioural automaticity; and selecting effective cues to support repeated behaviour. Results showed that behaviour change was initially experienced as cognitively effortful but as automaticity increased, enactment became easier. Habits were typically formed in work-based contexts. Weekends and vacations temporarily disrupted performance due to absence of associated cues, but habits were reinstated on return to work. Implications for theory and practice are discussed.     

Progressive and regressive developmental changes in neural substrates for face processing: testing specific predictions of the Interactive Specialization account

Face processing undergoes a fairly protracted developmental time course but the neural underpinnings are not well understood. Prior fMRI studies have only examined progressive changes (i.e., increases in specialization in certain regions with age), which would be predicted by both the Interactive Specialization (IS) and maturational theories of neural development. To differentiate between these accounts, the present study also examined regressive changes (i.e., decreases in specialization in certain regions with age), which is predicted by the IS but not maturational account. The fMRI results show that both progressive and regressive changes occur, consistent with IS. Progressive changes mostly occurred in occipital-fusiform and inferior frontal cortex whereas regressive changes largely emerged in parietal and lateral temporal cortices. Moreover, inconsistent with the maturational account, all of the regions involved in face viewing in adults were active in children, with some regions already specialized for face processing by 5 years of age and other regions activated in children but not specifically for faces. Thus, neurodevelopment of face processing involves dynamic interactions among brain regions including age-related increases and decreases in specialization and the involvement of different regions at different ages. These results are more consistent with IS than maturational models of neural development.     

The concept of voluntary consent

Our primary focus is on analysis of the concept of voluntariness, with a secondary focus on the implications of our analysis for the concept and the requirements of voluntary informed consent. We propose that two necessary and jointly sufficient conditions must be satisfied for an action to be voluntary: intentionality, and substantial freedom from controlling influences. We reject authenticity as a necessary condition of voluntary action, and we note that constraining situations may or may not undermine voluntariness, depending on the circumstances and the psychological capacities of agents. We compare and evaluate several accounts of voluntariness and argue that our view, unlike other treatments in bioethics, is not a value-laden theory. We also discuss the empirical assessment of individuals' perceptions of the degrees of noncontrol and self-control. We propose use of a particular Decision Making Control Instrument. Empirical research using this instrument can provide data that will help establish appropriate policies and procedures for obtaining voluntary consent to research.     

Measuring dysmorphic concern in Italy: psychometric properties of the Italian Body Image Concern Inventory (I-BICI)

The present research evaluated an Italian version of the Body Image Concern Inventory (I-BICI). A total of 412 Italian volunteers from Central and Southern Italy completed the measure (M=27.05 years, range=13-66 years) and the basic psychometric properties (factor structure, internal consistency, convergent validity) were assessed. The total measure demonstrated good internal consistency. Significant correlations were found between the I-BICI and measures of eating disorder (EDI-2) and obsessive-compulsive symptomatology (PI). Confirmatory factor analysis replicated the mesaure’s proposed factor structure. Directions for future research are discussed.     

Audiovisual speech from emotionally expressive and lateralized faces

Emotional expression and how it is lateralized across the two sides of the face may influence how we detect audiovisual speech. To investigate how these components interact we conducted experiments comparing the perception of sentences expressed with happy, sad, and neutral emotions. In addition we isolated the facial asymmetries for affective and speech processing by independently testing the two sides of a talker's face. These asymmetrical differences were exaggerated using dynamic facial chimeras in which left- or right-face halves were paired with their mirror image during speech production. Results suggest that there are facial asymmetries in audiovisual speech such that the right side of the face and right-facial chimeras supported better speech perception than their left-face counterparts. Affective information was also found to be critical in that happy expressions tended to improve speech performance on both sides of the face relative to all other emotions, whereas sad emotions generally inhibited visual speech information, particularly from the left side of the face. The results suggest that approach information may facilitate visual and auditory speech detection.