Stress and Well-Being Among Parents of Children with Potocki-Lupski Syndrome

Potocki-Lupski syndrome (PTLS) or duplication 17p11.2 syndrome is a newly characterized condition causing a variety of health problems with variable severity, including failure to thrive in infancy and childhood, hypotonia, structural heart anomalies, cognitive impairments, speech and learning difficulties, and autism. Due to its recent clinical characterization little is known about the psychosocial impact of this condition on patients and their families. This study evaluated whether parental psychosocial outcomes were associated with children’s PTLS disease severity. Parents of 58 children with PTLS completed a cross-sectional survey that assessed parental stress, quality of life, and coping skills. Parental functioning was associated with greater severity of feeding difficulty and with lower severity of a cardiovascular defect. Findings from this study highlight potential support needs of parents of children affected by PTLS and suggest ways in which these needs may be addressed.     

Hoping to Live a “Normal” Life Whilst Living with Unpredictable Health and Fear of Death: Impact of Cystic Fibrosis on Young Adults

This study aimed to explore the hopes and fears of young adults with cystic fibrosis (CF). Fifteen young adults with CF, aged 18–29, were interviewed about their hopes and fears using a grounded theory approach. Five themes were identified during the analysis: perceptions of living with unpredictable health and fear of death and dying; hopes for normality; hopes for a normal relationship and/or marriage; hopes for having children; and hopes for a normal work life. Participants feared the unpredictable nature of CF and the suffering that they believed they would have to endure due to ill health before premature death. Despite their fears, participants hoped to live a “normal” life by achieving their hopes of having long-lasting relationships, having children and pursuing a career. The findings highlight the need to help alleviate the fears of young adults with CF and to enable them to plan to achieve their hopes, hence giving them a sense of control over their condition.     

Analytical Problems and Suggestions in the Analysis of Behavioral Economic Demand Curves

Behavioral economic demand curves (Hursh, Raslear, Shurtleff, Bauman, & Simmons, 1988) are innovative approaches to characterize the relationships between consumption of a substance and its price. In this article, we investigate common analytical issues in the use of behavioral economic demand curves, which can cause inconsistent interpretations of demand curves, and then we provide methodological suggestions to address those analytical issues.

We first demonstrate that log transformation with different added values for handling zeros changes model parameter estimates dramatically. Second, demand curves are often analyzed using an overparameterized model that results in an inefficient use of the available data and a lack of assessment of the variability among individuals.

To address these issues, we apply a nonlinear mixed effects model based on multivariate error structures that has not been used previously to analyze behavioral economic demand curves in the literature. We also propose analytical formulas for the relevant standard errors of derived values such as P _max, O _max, and elasticity. The proposed model stabilizes the derived values regardless of using different added increments and provides substantially smaller standard errors. We illustrate the data analysis procedure using data from a relative reinforcement efficacy study of simulated marijuana purchasing.     

Emotional self‐efficacy,graduate employability,and career satisfaction: Testing the associations

Graduate employability has been the subject of little empirical research. There are a number of difficulties in defining and measuring graduate employability, which means that there is a paucity of research that looks at its predictors and outcomes. Previous work has proposed that emotional competence improves graduate employability, and this study further investigates this idea by examining the association between emotional self‐efficacy and employability. Also investigated is the association between employability and career satisfaction. Working graduates (N = 306) completed measures of emotional self‐efficacy, self‐perceived employability, and career satisfaction, and the data were analysed using structural equation modelling. We found emotional self‐efficacy to be an important predictor of graduate employability. Additionally, we found that graduate employability mediates the relationship between emotional self‐efficacy and career satisfaction. Some recommendations, in light of these findings, are discussed.     

Virtue of Self-Regulation

This paper proposes the idea of thinking about practical rationality in terms of self-regulation and defends the thesis that self-regulation is a virtue, insofar as we have reason to think it is our highest form of practical rationality. I argue that understanding self-regulation as a virtuous form of practical reasoning is called for given the kinds of limitations we face in developing agency and pursuing our goals, and presents us with several advantages over traditional understandings of practical rationality.     

Squaring the round: An unusual progressive graphomotor impairment with post‐mortem findings

Investigations of neurodegenerative disorders may reveal functional relationships in the cognitive system. C.S. was a 63‐year‐old right‐handed man with post‐mortem confirmed Pick's disease with a range of progressive impairments including non‐fluent aphasia, speech, limb, oculomotor, and buccofacial apraxia, but mostly intact intelligence, perception, orientation, memory, semantics, and phonology. During progression, agrammatism in writing with impairments in syntactic comprehension emerged in parallel with an unusual graphomotor deficit in drawing and writing, with an increasing deterioration of graphic short‐term memory. We investigated C.S.'s graphomotor deficit longitudinally using tests of writing and drawing on letters, words, and sentences and drawing to command and copying. We also tested C.S.'s short‐term graphemic buffer experimentally. Analysis showed deficits on selective aspects of graphomotor implementation of writing and drawing, mainly affecting the production of circles and curves, but not short straight lines in drawing and writing, and graphomotor short‐term memory, which paralleled impairments of written syntax and syntactic comprehension. We believe this to be the first detailed analysis of such an unusual progressive impairment in graphomotor production, which may be related to problems with agrammatic agraphia and impairments affecting shared components of cognition reflecting damage to shared neural networks. Alternatively, they may simply reflect the effects of coincidental damage to separate mechanisms responsible for aspects of writing, drawing, and syntactic processing. Longitudinal investigations of emerging deficits in progressive conditions like C.S.'s provides an opportunity to examine the progressive emergence of symptoms in an individual with multiple progressive impairments as they appear and examine putative relationships between them.     

Latent variables underlying the memory beliefs of Chartered Clinical Psychologists,Hypnotherapists and undergraduate students

In courts in the United Kingdom, understanding of memory phenomena is often assumed to be a matter of common sense. To test this assumption 337 UK respondents, consisting of 125 Chartered Clinical Psychologists, 88 individuals who advertised their services as Hypnotherapists (HTs) in a classified directory, the Yellow Pages^TM, and 124 first year undergraduate psychology students, completed a questionnaire that assessed their knowledge of 10 memory phenomena about which there is a broad scientific consensus. HTs’ responses were the most inconsistent with the scientific consensus, scoring lowest on six of these ten items. Principal Components Analysis indicated two latent variables – reflecting beliefs about memory quality and malleability – underlying respondents’ responses. In addition, respondents were asked to rate their own knowledge of the academic memory literature in general. There was no significant relationship between participants’ self reported knowledge and their actual knowledge (as measured by their responses to the 10-item questionnaire). There was evidence of beliefs among the HTs that could give rise to some concern (e.g., that early memories from the first year of life are accurately stored and are retrievable).     

What mothers don't know and doctors don't say: Detecting early developmental delays

The present study examined the detection of early developmental delays of high‐risk infants by first‐time mothers in a community sample of families (N = 451). About half of the mothers were adolescents at time of childbirth, and two thirds reported household incomes below $20,000 annually. Children were assessed at 12 and 24 months of age on standardized measures of cognitive, language, adaptive, and socioemotional development. According to the Individuals with Disabilities Education Act (PL101‐476) guidelines, about 1 in 4 children was eligible for intervention services at 12 months, and about 1 in 3 children was eligible at 24 months. Despite receiving regular medical services, mothers reported that very few eligible children (2% at 12 months and 9% at 24 months) were identified by medical professionals as having any problems that could interfere with development. Much like medical professionals, few mothers were appropriately worried about development, and the likelihood of expressing concerns was related to mothers' knowledge about infant development. These findings highlight the need for medical providers to frequently screen high‐risk children and for parents to become more knowledgeable about infant development.     

Increasing task difficulty enhances effects of intersensory redundancy: testing a new prediction of the Intersensory Redundancy Hypothesis

Prior research has demonstrated intersensory facilitation for perception of amodal properties of events such as tempo and rhythm in early development, supporting predictions of the Intersensory Redundancy Hypothesis (IRH). Specifically, infants discriminate amodal properties in bimodal, redundant stimulation but not in unimodal, nonredundant stimulation in early development, whereas later in development infants can detect amodal properties in both redundant and nonredundant stimulation. The present study tested a new prediction of the IRH: that effects of intersensory redundancy on attention and perceptual processing are most apparent in tasks of high difficulty relative to the skills of the perceiver. We assessed whether by increasing task difficulty, older infants would revert to patterns of intersensory facilitation shown by younger infants. Results confirmed our prediction and demonstrated that in difficult tempo discrimination tasks, 5‐month‐olds perform like 3‐month‐olds, showing intersensory facilitation for tempo discrimination. In contrast, in tasks of low and moderate difficulty, 5‐month‐olds discriminate tempo changes in both redundant audiovisual and nonredundant unimodal visual stimulation. These findings indicate that intersensory facilitation is most apparent for tasks of relatively high difficulty and may therefore persist across the lifespan.     

The Infectious Diseases Society of America Lyme guidelines: a cautionary tale about the development of clinical practice guidelines

Flawed clinical practice guidelines may compromise patient care. Commercial conflicts of interest on panels that write treatment guidelines are particularly problematic, because panelists may have conflicting agendas that influence guideline recommendations. Historically, there has been no legal remedy for conflicts of interest on guidelines panels. However, in May 2008, the Attorney General of Connecticut concluded a ground-breaking antitrust investigation into the development of Lyme disease treatment guidelines by one of the largest medical societies in the United States, the Infectious Diseases Society of America (IDSA). Although the investigation found significant flaws in the IDSA guidelines development process, the subsequent review of the guidelines mandated by the settlement was compromised by a lack of impartiality at various stages of the IDSA review process. This article will examine the interplay between the recent calls for guidelines reform, the ethical canons of medicine, and due process considerations under antitrust laws as they apply to the formulation of the IDSA Lyme disease treatment guidelines. The article will also discuss pitfalls in the implementation of the IDSA antitrust settlement that should be avoided in the future.