What Do Parents of Children with Down Syndrome Think about Non-Invasive Prenatal Testing (NIPT)?

This study explores the attitudes of parents of children with Down syndrome towards non-invasive prenatal testing (NIPT) and widening the scope of prenatal screening. Three focus groups (n = 16) and eleven individual interviews with Dutch parents (and two relatives) of children with Down syndrome were conducted. Safety, accuracy and earlier testing were seen as the advantages of NIPT. Some participants were critical about the practice of screening for Down syndrome, but acknowledged that NIPT enables people to know whether the fetus is affected and to prepare without risking miscarriage. Many feared uncritical use of NIPT and more abortions for Down syndrome. Concerns included the consequences for the acceptance of and facilities for children with Down syndrome, resulting in more people deciding to screen. Participants stressed the importance of good counseling and balanced, accurate information about Down syndrome. Testing for more disorders might divert the focus away from Down syndrome, but participants worried about “where to draw the line”. They also feared a loss of diversity in society. Findings show that, while parents acknowledge that NIPT offers a better and safer option to know whether the fetus is affected, they also have concerns about NIPT’s impact on the acceptance and care of children with Down syndrome.     

Screening for Significant Behavior Problems in Diverse Young Children Living in Poverty

The development and use of first line screening instruments is an essential first step in assessing behavior disorders in very young children. The Early Childhood Behavior Screen (ECBS) is a parent-report measure for behavior disorders and is normed on young children (1–5 years old) living in poverty. The current study presents psychometric support for the discriminative validity of the ECBS’s 10-item Challenging Behavior Scale (CBS) as a first-line screener for externalizing behavior problems for preschool aged-children in poverty. The study’s sample included 673 participants (M age years = 2.81; 63.2 % male; 65.8 % African American) that all met the federal definitional standard for living in poverty. A confirmatory factor analysis was run to provide support for the ECBS factor structure. Receiver operating characteristics (ROC) curve analyses were used to test the CBS’s ability to distinguish between 428 clinic-referred children and 245 non-clinic-referred children. Results showed an acceptable fit model for the ECBS, providing further evidence of its construct validity. Optimal cut-scores by child age derived from the ROC curve analyses were provided with corresponding levels of sensitivity, specificity, and positive and negative predictive values. Sensitivity rates for cut scores ranged from 0.76 to 0.83 and specificity rates ranged from 0.88 to 0.95. Acceptable test–retest reliability and good internal consistency also was observed. The CBS quickly identifies young children from low-income, urban, diverse populations that may be at-risk for developing significant behavior disorders and should be considered by health care professionals who work with very young children.     

Student-Athletes’ Views on <Emphasis Type="Italic">APOE</Emphasis> Genotyping for Increased Risk of Poor Recovery after a Traumatic Brain Injury

Use of apolipoprotein E genotyping to personalize the risk of a poor recovery after traumatic brain injury is complicated by the potential for genetic discrimination and the potential to reveal an increased risk for late onset Alzheimer’s disease. We developed a survey to gauge interest in testing among athletes participating in National Collegiate Athletic Association programs. Eight hundred and forty seven student-athletes were surveyed to determine their interest in genetic testing, their willingness to share the results of testing with parents, coaches and physicians, their concerns about privacy and/or discrimination, and their interest in genetic counseling. Nearly three quarters of respondents expressed some level of interest in testing, with the largest number describing themselves as ‘possibly interested’ (54.9 %, n = 463) and a smaller number describing themselves as ‘very interested’ (18.9 %, n = 159). Most student-athletes said that receiving secondary information about their risk for late-onset Alzheimer’s disease made them more likely to test (50.6 %, n = 426) rather than less likely to test (12.4 %, n = 104). Student-athletes were open to apolipoprotein E genotyping and willing to share test results with their parents, coaches and physicians. They did not anticipate that test results would impact their behavior or ability to play. Testing programs may be welcome but should provide clear information as to risks and benefits.     

Knowledge of and Interest in Genetic Results Among Parkinson Disease Patients and Caregivers

The purpose of the study is to investigate Parkinson disease (PD) patients’ and caregivers’ knowledge of and interest in genetic testing. Gaucher disease (GD) results from recessive mutations in glucocerebrosidase (GBA). Both heterozygote GBA carriers and GD patients are at greater risk for PD. Studies regarding knowledge of and interest in genetic testing have been limited and have not offered genetic results to participants. In this study, 353 PD patients and 180 caregivers were recruited to a PD genetic study. The association between GD, GBA mutations and PD was described to participants who reported their familiarity with genetic terms, answered questions on genetic concepts, and indicated their interest in knowing if they may have GD (two GBA mutations) and other genetic information that could impact their health. Ninety-three-percent of participants were interested in receiving GBA results; however, only 51.6 % of PD participants and 55.6 % of caregivers knew that “scientists have identified genes associated with a higher risk of developing PD.” PD patients may benefit from education and genetic counseling on the implications of genetic testing.     

Well-Being’s Relation to Religiosity and Spirituality in Children and Adolescents in Zambia

The relations among dimensions of subjective well-being (i.e., happiness and life satisfaction), spirituality and religiousness were assessed in children (aged 7–12, n = 391) and adolescents (aged 13–19, n = 902) in Zambia. These participants were sampled from schools in both urban and rural regions that represented a relatively wide range of affluence. Participants self-reported their happiness using the Faces Scale and the Subjective Happiness Scale, and their life satisfaction using the Student Life Satisfaction Scale. The surveys were available in English as well as two local languages, and were delivered in classroom settings. To assess religiosity, participants were asked about the frequency that they attended church and about the importance of religion in their life. To assess spirituality, participants were asked about whether they considered themselves to be a spiritual person and about the nature domain of spirituality (e.g., “I feel connected to nature”). Results indicated that age, gender, grade and religiosity were not strong predictors of children’s well-being. However, spirituality accounted for 21 % of the variance in life satisfaction beyond these demographic variables and religiosity, but did not account for additional variance in happiness. The results were similar for adolescents except that the demographic variables were weakly predictive of their life satisfaction, and religiosity was a modest predictor of their happiness. Spirituality predicted variance in happiness and life satisfaction more so among adolescents than among children. These results confirm earlier work showing that spirituality, but not necessarily religiosity, is associated with children’s and adolescents’ well-being.     

Life Events may Contribute to Family Communication About Cancer Risk Following BRCA1/2 Testing

We assessed whether certain life events contributed to the communication about cancer risk within families who have undergone BRCA1/2 testing. We also explored what type of resources participants would have valued to help in supporting family communication about genetic information. Two hundred and forty-six individuals (218 women, 28 men) who received a BRCA1/2 genetic test result 3 to 10 years earlier (mean of 6.4 years) participated in a telephone interview. Participants were asked about the occurrence of a number of life events (cancer diagnosis, death, uptake of prophylactic surgery, and providing care to a family member with cancer) in their family since their BRCA1/2 test result disclosure and, for each occurrence, whether it fostered family communication about cancer risk. A total of 182 participants (74 %) reported that they or one of their relatives received a cancer diagnosis, 176 (72 %) reported that someone died in their family, and 73 (30 %) stated that they or one of their relatives undertook a prophylactic surgery. During this period, 109 participants (44 %) also provided care for a family member who had cancer. Among participants who reported these life events, family communication was fostered by these events in proportions varying from 50 % (death) to 69 % (cancer diagnosis). Our results indicate that life events may contribute to family communication about cancer risk. Further research is needed to determine whether these events provide a “window of opportunity” to reach family members, address their needs and concerns about cancer, update family cancer history, and introduce genetic counseling and risk assessment.     

Helping Children Enter Into Another's Experiences: The Look and Feel of It

The role of focusing 4-year-olds' attention on “feeling” or “looking” was examined in three experiments by testing predictions about children's memory for their interactions with an adult partner as they engaged in a collaborative task. Children made collages with an adult partner, and they were later asked to remember who placed the pieces on the collage. Children were more likely to claim they placed pieces actually placed by their partner (Experiments 1, 2, and 3), unless directed to think about how their partner looked when placing the partner's pieces (Experiments 1 and 3). False claims were observed after children were directed to think about how it would “feel” to perform the actions, whether motoric instructions were focused on the self (Experiment 2, N = 48) or partner (Experiment 1, N = 40, and Experiment 3, N = 24). Furthermore, false claims (referred to as I did it errors) were positively associated with accurate collage memory (Experiment 3). These findings suggest that adopting a perspective during encoding that involves “feeling” movements—whether focused on the self or partner—plays an important role in children's memory for collaboration (in this context, memory for contributions made by children or their adult partners to the completion of a collage). A focus on “feeling” may be a way to “enter into” the experiences of another, promoting anticipation and recoding, which may lead to better learning in both collaborative and non-collaborative contexts.     

The impact of temperament factors and family functioning on resilience processes from infancy to school age

A Norwegian sample of 401 mothers was used to investigate the effects of child factors and family risk and supportive factors on both child competencies and behaviour problems at 8 years. The contribution of the various predictors on the differentiation of children into groups of resilient vs. vulnerable across four different time periods was also examined within a prospective longitudinal study design. The study showed that a substantial proportion of the variance in both behaviour problems and social competence at 8 years could be explained by risk and supportive factors in child and family already present at 18 months. Within-child and within environment predictors had selective impact on each outcome domain in addition to common effects. Depending on time of assessment, 73 – 89% of the children from stressed families could be correctly classified as resilient. Pathways to “resilience” and “positive adjustment” are apparent from early in life, with social support factors and temperament characteristics being of continuing importance. The study confirms the importance of attending to early emerging child functioning and corresponding family conditions, and hence the need for prevention and early intervention efforts.     

Pre-existing Perceptions of ADHD Predict Children’s Sociometrics Given to Classmates with ADHD

Considerable research documents that even young children possess stigma about mental illness, which may affect how they evaluate peers with mental health conditions. This study examined children’s pre-existing perceptions of Attention Deficit/Hyperactivity Disorder (ADHD) behaviors as predictors of their subsequent sociometric judgments of classmates with ADHD in a 2-week summer day camp. Participants were previously unacquainted children ages 6.8–9.8 years (113 typically-developing and 24 with ADHD; 48.2% boys; 81% White). Children initially more inclined to interact with a hypothetical classmate with ADHD gave fewer “dislike” nominations to real-life classmates with ADHD at camp. Children who initially believed that ADHD symptoms were uncontrollable gave more “dislike” nominations and lower liking ratings to classmates with ADHD when those classmates displayed severe ADHD symptoms. For children who had ADHD, their attribution of uncontrollability for ADHD symptoms predicted fewer “like” nominations and more “dislike” nominations given to classmates with ADHD. Lastly, children who initially reported they would help a hypothetical classmate with ADHD gave higher liking ratings to classmates with ADHD. These results were found after statistical control of the actual level of ADHD behaviors displayed by the classmates with ADHD. In summary, other children’s pre-existing or stigmatizing perceptions of ADHD behaviors may contribute, in part, to the substantial peer rejection typically experienced by ADHD populations. Findings have implications for understanding peer problems in children with this common mental health condition.     

Brief report: Relationship between performance testing and parent report of attention and executive functioning profiles in children following perinatal arterial ischemic stroke

Children with perinatal arterial ischemic stroke (PAIS) have increased rates of attention and executive functioning (EF) weaknesses. Research in other pediatric disorders has documented poor consistency between parent report of these skills and performance-based measures. We compared these data sources in children with PAIS. Forty full-term (≥37 weeks) children ages 3–16 (median = 7.2 years; 58% male) with PAIS completed neuropsychological testing and composite scores were created for seven attention and EF domains (Processing Speed; Attention; Working Memory; Verbal Retrieval; Inhibitory Control; Flexibility/Shifting; Planning). Parents completed “real-world” functioning questionnaires (ADHD Rating Scale-IV, BRIEF). Correlational analysis were used to compare parent and performance measures. Correlations between ADHD Rating Scale-IV scores and the performance-based Attention and Inhibition composite scores were nonsignificant. Significant negative correlations were found between the BRIEF GEC and performance-based Verbal Retrieval and Processing Speed composites, but remaining GEC/composite comparisons were nonsignificant. Analyses between parent report BRIEF index scores and the corresponding performance-based domain identified one significant negative correlation between the BRIEF Working Memory Index and the Working Memory composite score. While children with PAIS demonstrate difficulties in attention and EF on both parent report and performance measures, little significance was found in comparisons of these two types of measures. There may be several explanations for this dissociation: measures assessing different aspects of the same underlying construct; performance-based measures lacking ecological validity; and parents underestimating/underreporting their child’s deficits. Thus, multiple sources of informant and performance data are necessary to make more accurate conclusions about functioning in these domains.     

Knowledge and causal attributions for mental disorders in HIV-positive children and adolescents: results from rural and urban Uganda

Increasing availability of antiretroviral treatment (ART) has led HIV to be considered a chronic disease, shifting attention to focus on quality of life including mental wellbeing. We investigated knowledge and causal attributions for mental disorders in HIV-positive children and adolescents in rural and urban Uganda. This qualitative study was nested in an epidemiological mental health study among HIV-positive children and adolescents aged 5–17 years in rural and urban Uganda. In-depth interviews were conducted with caregivers of HIV-positive children (5–11 years) and adolescents (12–17 years) in HIV care. Interviews were audio recorded with permission from participants and written consent and assent sought before study procedures. Thirty eight participants (19 caregivers, 19 children/adolescents) were interviewed. Age range of caregivers was 28–69 years; majority were female (17). Caregivers had little knowledge on mental disorders ;only 3 related the vignette to a mental problem and attributed it to: improper upbringing, violence, poverty and bereavement. Five adolescents identified vignettes as portraying mental disorders caused by: ill-health of parents, bereavement, child abuse, discrimination, HIV and poverty. Caregivers are not knowledgeable about behavioural and emotional challenges in HIV-positive children/adolescents. Mental health literacy programmes at HIV care clinics are essential to enhance treatment-seeking for mental health.     

Attitudes and Practices Among Internists Concerning Genetic Testing

Many questions remain concerning whether, when, and how physicians order genetic tests, and what factors are involved in their decisions. We surveyed 220 internists from two academic medical centers about their utilization of genetic testing. Rates of genetic utilizations varied widely by disease. Respondents were most likely to have ordered tests for Factor V Leiden (16.8 %), followed by Breast/Ovarian Cancer (15.0 %). In the past 6 months, 65 % had counseled patients on genetic issues, 44 % had ordered genetic tests, 38.5 % had referred patients to a genetic counselor or geneticist, and 27.5 % had received ads from commercial labs for genetic testing. Only 4.5 % had tried to hide or disguise genetic information, and <2 % have had patients report genetic discrimination. Only 53.4 % knew of a geneticist/genetic counselor to whom to refer patients. Most rated their knowledge as very/somewhat poor concerning genetics (73.7 %) and guidelines for genetic testing (87.1 %). Most felt needs for more training on when to order tests (79 %), and how to counsel patients (82 %), interpret results (77.3 %), and maintain privacy (80.6 %). Physicians were more likely to have ordered a genetic test if patients inquired about genetic testing (p?<?.001), and if physicians had a geneticist/genetic counselor to whom to refer patients (p?<?.002), had referred patients to a geneticist/genetic counselor in the past 6 months, had more comfort counseling patients about testing (p?<?.019), counseled patients about genetics, larger practices (p?<?.032), fewer African-American patients (p?<?.027), and patients who had reported genetic discrimination (p?<?.044). In a multiple logistic regression, ordering a genetic test was associated with patients inquiring about testing, having referred patients to a geneticist/genetic counselor and knowing how to order tests. These data suggest that physicians recognize their knowledge deficits, and are interested in training. These findings have important implications for future medical practice, research, and education.     

Self-reported reasons for moral decisions

Many investigations of moral decision-making employ hypothetical scenarios in which each participant has to choose between two options. One option is usually deemed “utilitarian” and the other either “non-utilitarian” or “deontological”. Very little has been done to establish the validity of such measures. It is unclear what they measure, let alone how well they do so. In this exploratory study, participants were asked about the reasons for their decisions in six hypothetical scenarios. Various concerns contributed to each decision. Action decisions occurred when utilitarian concerns dominated. Bystanding decisions resulted from different concerns or combinations of concerns dominating in different situations, with utilitarianism usually among participants’ concerns. None of the labels usually used for either decision therefore seems entirely appropriate. Five concerns were identified as necessary and sufficient to predict over 85% of participants’ decisions. This suggests great promise for future research, particularly in investigation of real-world moral decisions.     

Delay of Gratification in Two- and Three-Year-Olds: Associations with Attachment, Personality, and Temperament

Delay of gratification in young children has been linked to long-term behavioral and academic outcomes. This study explored temperament, personality, and child–parent attachment as possible associates of delay ability. The sample consisted of 50 2- and 3-year-old children and their primary caregivers. Two laboratory tasks, the Preschool Strange Situation and the newly created Gift Delay Task, were conducted on separate occasions to assess child–parent attachment and delay of gratification, respectively. Parents and preschool teachers completed child temperament (EASI-III) and personality (California Child Q-Set) questionnaires. Based on the award-oriented behavior in the Gift Delay Task, children were classified into three groups: Delay (20 %), Touch and Go (i.e., approached the gift, but demonstrated some delay ability; 46 %), and Non Delay (34 %). Reports on activity, impulsivity, decision time, negative emotionality, over-control, and affect were found to be associated with delay ability. The association between child–parent attachment and delay was not statistically significant, but an interesting trend emerged. A larger percentage of Non Delayers were rated as Insecure-Ambivalent (“C”), and more Delayers were rated as Securely attached (“B”). Implications for behavioral interventions focused on parental support and scaffolding are discussed.     

Functional links of obsessive,dysmorphic, hypochondriac,and eating-disorders related mental intrusions

Background/Objective

Unwanted mental intrusions (UMIs) are the normal variants of obsessions in Obsessive-Compulsive Disorder (OCD), preoccupations about defects in Body Dysmorphic Disorder (BDD), images about illness in Hypochondriasis (HYP), and thoughts about eating in Eating Disorders (EDs). The aim was to examine the similarities and differences in the functional links of four UMI contents, adopting a within-subject perspective. Method: 438 university students and community participants (M_age = 29.84, SD = 11.41; 70.54% women) completed the Questionnaire of Unpleasant Intrusive Thoughts (QUIT) to assess the functional links (emotions, appraisals, and neutralizing/control strategies) of the most upsetting UMIs with OCD, BDD, HYP and EDs-contents. Results: HYP-related intrusions caused the highest emotional impact, OCD-related intrusions were the most interfering, and EDs-related intrusions interfered the least. The four UMI were equally ego-dystonic. Women appraised OCD-related intrusions more dysfunctionally, but men appraised the four intrusive contents similarly. All UMI instigated the urge to “do something”, to keep them under control and/or neutralizing them. Conclusions: Similarities among the functional links of intrusions related to OCD, BDD, HYP and EDs contents support their transdiagnostic nature and they might contribute to understanding common factors in these disorders.     

Treating Parents with Attention-Deficit/Hyperactivity Disorder: The Effects of Behavioral Parent Training and Acute Stimulant Medication Treatment on Parent–Child Interactions

This multiple baseline study evaluated the efficacy of behavioral parent training (BPT) for 12 parents (M age?=?39.17 years; 91 % mothers) and their children (ages 6–12; 83 % boys) both with Attention-Deficit/Hyperactivity Disorder (ADHD), and also explored the acute effect of stimulant medication for parents before and after BPT. Parents rated their own and their children’s symptoms and impairment and were stabilized on optimally dosed medication. Then, parents discontinued medication and were randomly assigned to a 3, 4, or 5 week baseline (BL), during which they provided twice-weekly ratings of their impairment, parenting, and their child’s behavior. Following BL, parents and their children completed two laboratory tasks, once on their optimally dosed medication and once on a placebo to assess observable effects of medication on parent–child behavior, and they completed additional assessments of family functioning. Parents then completed eight BPT sessions, during which they were unmedicated. Twice-weekly ratings of parent and child behavior were collected during BPT and additional ratings were collected upon completing BPT. Two more parent–child tasks with and without parent medication were conducted upon BPT completion to assess the observable effects of BPT and BPT plus medication. Ten (83.33 %) parents completed the trial. Improvements in parent and child behavior were observed, and parents reported improved child behavior with BPT. Few benefits of BPT emerged through parent reports of parent functioning, with the exception of inconsistent discipline, and no medication or interaction effects emerged. These results, although preliminary, suggest that some parents with ADHD benefit from BPT. While pharmacological treatment is the most common intervention for adults with ADHD, further examination of psychosocial treatments for adults is needed.     

An Exploratory Study of HIV+ Adolescents’ Spirituality: Will You Pray with Me?

The aims of the study were (1) to determine whether adolescents find it acceptable to have physicians explore their spiritual beliefs as part of their medical care, (2) to characterize the role of spirituality and religious beliefs in adolescents with and without HIV, and (3) to examine associations between spirituality/religion and quality of life. Adolescents receiving their medical care at an urban Adolescent Health Clinic completed a study-specific questionnaire about spiritual inquiry by their physician, the Brief Multidimensional Measurement of Religiousness/Spirituality, and the Pediatric Quality of Life Inventory 4.0. Chi-squared analysis, Fischer’s exact test, and t tests were used to assess associations. A total of 45 participants enrolled: 19 HIV+ (53% vertical transmission) and 26 HIV?; mean age 17.2 years; 80% African American. Four out of 45 (9%) had ever been asked by their doctor about their spiritual/religious beliefs, and only 8 (18%) had ever shared these beliefs with their healthcare provider. Most teens wanted their provider to ask them about their spiritual beliefs during some visits, especially when dealing with death/dying or chronic illness (67%). Those with HIV were more likely to endorse wanting their doctors to pray with them (42% vs. 15%), feeling “God’s presence” (Mean = 3.95 vs. 2.83), being “part of a larger force” (Mean = 2.58 vs. 1.69), and feeling “God had abandoned them” (Mean = 1.63 vs. 1.15). There are certain circumstances in which healthcare providers should include a spiritual history with teenage patients. Few differences emerged in the teens studied with and without HIV.