Sex Education and Intellectual Disability: Practices and Insight from Pediatric Genetic Counselors

Intellectual disability (ID) with or without other anomalies is a common referral for genetic counseling. Sessions may include discussions of reproductive implications and other issues related to sex education. Patients with ID regularly meet barriers when trying to obtain sex education due to the misperceptions of others as being either asexual or that such education would promote inappropriate sexual behavior. In this pilot study, we surveyed genetic counselors to explore their experiences with being asked to provide sex education counseling and their comfort in doing so for patients with ID ages 9–17. Results were analyzed from 38 respondents. Caregivers and patients most frequently requested information on puberty, sex abuse prevention, and reproductive health. Genetic counselors were most comfortable when they could provide sex education counseling within the context of a particular condition or constellation of features. They were least comfortable when they lacked familiarity with the patient, caregiver, or the family’s culture. The most frequently cited barriers that prevented genetic counselors from providing sex education counseling were lack of time, lack of training, the patient’s ID being too profound, and a belief that genetic counselors should not be responsible for providing sex education counseling. While many respondents reported that providing sex education counseling is not considered within the scope of a genetic counselor’s practice, they also noted that patients’ families initiate discussions for which counselors should be prepared. Respondents indicated that resource guides specifically designed for use by genetic counselors would be beneficial to their practice. Genetic counselors have the opportunity to embrace the role of advocate and broach the issue of sexual health with caregivers and patients by directing them toward educational resources, if not providing sex education directly to effectively serve the needs of patients and caregivers.     

Impact of Huntington Disease Gene-Positive Status on Pre-Symptomatic Young Adults and Recommendations for Genetic Counselors

Huntington disease (HD) is an autosomal dominant, progressive neurodegenerative disorder for which there is no cure. Predictive testing for HD is available to asymptomatic at-risk individuals. Approximately half of the population undergoing predictive testing for HD consists of young adults (≤35 years old). Finishing one’s education, starting a career, engaging in romantic relationships and becoming a parent are key milestones of young adulthood. We conducted a qualitative study to explore how testing gene-positive for HD influences young adults’ attainment of these milestones, and to identify major challenges that pre-symptomatic young adults face to aid the development of targeted genetic counseling. Results of our study demonstrate that 1) knowing one’s gene-positive status results in an urgency to reach milestones and positively changes young adults’ approach to life; 2) testing positive influences young adults’ education and career choices, romantic relationships, and family planning; 3) young adults desire flexible and tailored genetic counseling to address needs and concerns unique to this population. Findings of this study contribute to the understanding of the impact of predictive testing for HD on young adults, and highlight issues unique to this population that call for further research, intervention and advocacy.     

Trajectories of Happiness 5 Years Following Medical Discharge for Traumatic Disability: Differences Between Insider and Outsider Perspectives

We studied the predictive impact of proxy “outsider” reports, injury type, and functional independence on trajectories of happiness over the first 5 years following medical treatment for a traumatic spinal cord injury, brain injury, severe burns or inter-articular fractures (total N = 1,271). It was anticipated that lower functional independence and outsider status would predict lower happiness trajectories, with injury type having little effect over time. A measure of functional impairment and the life satisfaction index containing the items that assessed happiness were administered 12, 24, 48, and 60 months post-discharge. Trajectory modeling revealed that lower functional independence significantly predicted lower happiness, regardless of injury type. Outsider reports predicted significantly higher happiness scores than the insiders reported themselves. These differences persisted across time and injury type. Additional analyses found that insider/outsider status accounted for one percent of the variance in happiness scores and functional independence accounted for twenty percent of the variance. Moreover, for all injury groups, there was no evidence for changes in happiness trajectories over time. Outsider accounts differ significantly from insider estimations of variables of positive adjustment accounts but explain little variation in the reports of happiness overall and still have practical and clinical value as secondary sources of information about positive emotional experiences, particularly when reports from the “insider” are not possible.     

Impact of psychoeducational content delivered online to a positive psychology aware community

Happiness-increasing interventions demonstrate significant variation in outcomes, suggesting that the people who use them might be as important as the interventions themselves to determine efficacy. In light of this, instructive interventions might not be necessary to increase happiness given a population with knowledge of happiness-increasing strategies. We recruited 270 participants with knowledge of positive psychology to receive six weeks of online psychoeducation. We explored participants’ use of the website, reported use of happiness strategies, and changes in well-being. Those who spent more time on the website reported smaller changes in well-being than those who spent less time on the website. Conversely, those who reported employing more happiness strategies reported greater increases in well-being than those who used fewer strategies. This shows that for those already familiar with positive psychology, information, rather than instruction, might increase well-being. This has implications for studies evaluating the efficacy of happiness-increasing interventions more broadly.     

P50 sensory gating is related to performance on select tasks of cognitive inhibition

P50 suppression deficits have been documented in clinical and nonclinical populations, but the behavioral correlates of impaired auditory sensory gating remain poorly understood. In the present study, we examined the relationship between P50 gating and healthy adults’ performance on cognitive inhibition tasks. On the basis of load theory (Lavie, Hirst, de Fockert, & Viding, 2004), we predicted that a high perceptual load, a possible consequence of poor auditory P50 sensory gating, would have differential (i.e., positive vs. negative) effects on performance of cognitive inhibition tasks. A dissociation was observed such that P50 gating was negatively related to interference resolution on a Stroop task and positively related to response inhibition on a go/no-go task. Our findings support the idea that a high perceptual load may be beneficial to Stroop performance because of the reduced processing of distractors but detrimental to performance on the go/no-go task because of interference with stimulus discrimination.     

Development of a Patient Adherence Scale for Exposure and Response Prevention Therapy

Exposure and response prevention (EX/RP) is an evidence-based treatment for obsessive-compulsive disorder (OCD). For EX/RP to be maximally effective, it is believed that patients must adhere outside of sessions to the procedures they learn in therapy. To date, there is no standard measure of patient EX/RP adherence, despite the importance of accurately assessing EX/RP adherence in both clinical research and practice. This paper describes the development of the Patient EX/RP Adherence Scale (PEAS), which assesses the patient's between-session adherence to the therapist's EX/RP instructions, and presents initial data on the scale's reliability and validity. The scale was designed to focus on the key procedures of EX/RP and to be brief enough to be used at each treatment session. The scale demonstrates excellent interrater reliability and good face and content validity. The usefulness of the scale is considered in the context of being an important tool to researchers trying to understand and improve outcomes of EX/RP for OCD as well as to EX/RP therapists in clinical practice. Future research will need to test the scale's reliability and validity in a larger sample of patients over the course of treatment.     

Testing the bi‐dimensional effects of attitudes on behavioural intentions and subsequent behaviour

Attitudes are typically treated as unidimensional predictors of both behavioural intentions and subsequent behaviour. On the basis of previous research showing that attitudes comprise two independent, positive and negative dimensions, we hypothesized that attitudes would be bi‐dimensional predictors of both behavioural intentions and subsequent behaviour. We focused on health‐risk behaviours. We therefore also hypothesized that the positive dimension of attitude (evaluations of positive behavioural outcomes) would better predict both behavioural intentions and subsequent behaviour than would the negative dimension, consistent with the positivity bias/offset principle. In Study 1 (cross sectional design), N = 109 university students completed questionnaire measures of their intentions to binge‐drink and the positive and negative dimensions of attitude. Consistent with the hypotheses, both attitude dimensions independently predicted behavioural intentions and the positive dimension was a significantly better predictor than was the negative dimension. The same pattern of findings emerged in Study 2 (cross sectional design; N = 186 university students) when we predicted intentions to binge‐drink, smoke and consume a high‐fat diet. Similarly, in Study 3 (prospective design; N = 1,232 speed limit offenders), both the positive and negative dimensions of attitude predicted subsequent (6‐month post‐baseline) speeding behaviour on two different road types and the positive dimension was the better predictor. The implications for understanding the motivation of behaviour and the development of behaviour‐change interventions are discussed.     

The contribution of visual processing to academic achievement in adolescents born extremely preterm or extremely low birth weight

Children born extremely preterm (EP, <28 weeks) and/or extremely low birth weight (ELBW, <1000 g) have more academic deficiencies than their term-born peers, which may be due to problems with visual processing. The aim of this study is to determine (1) if visual processing is related to poor academic outcomes in EP/ELBW adolescents, and (2) how much of the variance in academic achievement in EP/ELBW adolescents is explained by visual processing ability after controlling for perinatal risk factors and other known contributors to academic performance, particularly attention and working memory. A geographically determined cohort of 228 surviving EP/ELBW adolescents (mean age 17 years) was studied. The relationships between measures of visual processing (visual acuity, binocular stereopsis, eye convergence, and visual perception) and academic achievement were explored within the EP/ELBW group. Analyses were repeated controlling for perinatal and social risk, and measures of attention and working memory. It was found that visual acuity, convergence and visual perception are related to scores for academic achievement on univariable regression analyses. After controlling for potential confounds (perinatal and social risk, working memory and attention), visual acuity, convergence and visual perception remained associated with reading and math computation, but only convergence and visual perception are related to spelling. The additional variance explained by visual processing is up to 6.6% for reading, 2.7% for spelling, and 2.2% for math computation. None of the visual processing variables or visual motor integration are associated with handwriting on multivariable analysis. Working memory is generally a stronger predictor of reading, spelling, and math computation than visual processing. It was concluded that visual processing difficulties are significantly related to academic outcomes in EP/ELBW adolescents; therefore, specific attention should be paid to academic remediation strategies incorporating the management of working memory and visual processing in EP/ELBW children.     

Visuospatial attention in schizophrenia: deficits in broad monitoring

Although selective attention is thought to be impaired in people with schizophrenia (PSZ), prior research has found no deficit in the ability to select one location and withdraw attention from another. PSZ and healthy control subjects (HCS) performed a stimulus detection task in which one, two, or all four peripheral target locations were cued. When one or two locations were cued, both PSZ and HCS responded faster when the target appeared at a cued than uncued location. However, increases in the number of validly cued locations had much more deleterious effects on performance for PSZ than HCS, especially for targets of low contrast whose detection was more dependent on attention. PSZ also responded more slowly in trials with four cued locations relative to trials with one or two invalidly cued locations. Thus, visuospatial attention deficits in schizophrenia arise when broad monitoring is required rather than when attention must be focused narrowly.     

Using efficacy information to manipulate proxy efficacy in novice exercisers

ObjectivesTo examine whether proxy efficacy could be increased through an intervention targeting the four sources of efficacy using a written message.DesignPhase 1 (N = 33) tested the stimulus materials to ensure that the intervention message contained significantly more sources of efficacy than the controls. Phase 2 (N = 86) was an intervention assessing the effectiveness of the stimulus materials in increasing proxy efficacy.MethodIn Phase 1, female novice exercisers were randomly assigned to read either an attention control (AC) or proxy efficacy-enhancing (PEE) message about an exercise class leader. Participants completed manipulation checks assessing content, readability, and inclusion of the sources of efficacy. In Phase 2, participants were randomly assigned to AC or PEE groups and read the stimulus materials tested in Phase 1. In order to establish baseline efficacy, all participants read an AC message at Time 1. At Time 2 one week later, the PEE group read the PEE message while the AC group read a second AC message. Participants' proxy efficacy was assessed at both time points in Phase 2.ResultsIn Phase 1, results revealed that the participants who read the PEE message agreed that their stimulus material contained significantly more efficacy-enhancing information than did participants who read the AC messages. In Phase 2, MANCOVA revealed that, after controlling for Time 1 proxy efficacy, the PEE group had significantly greater proxy efficacy at Time 2 than the AC group.ConclusionsResults suggest that proxy efficacy can be increased through targeted written messages.